The truth is that many people didn’t even realise she still had a feeding tube, because she eats and drinks so well. But with it being a surgical procedure to put a gastrostomy in, they wanted to be completely sure she wasn’t going to need it again before they removed it. And now we’ve finally reached that point, I can’t help but reflect on the incredible, traumatic, painful and miraculous feeding journey Izzy has been on. I initially planned to pick out a few memories to share with everyone, but the more I wrote the more therapeutic I found it and so have decided to give you the whole shebang, whether you choose to read it or not! So here are my experiences and memories of feeding; some are significant moments medically, some just reflect the day to day reality of having a child who is tube fed. It’s a fairly self indulgent post purely about our journey, but you never know, maybe it will help you to understand a little more of what life is like for a friend with a medically complex child, or with medical complexities themself….

Our Tube Feeding Journey...

1 hour old

First breastfeed. I’d only stopped feeding Lauren 6 months previously and I immediately could tell this felt different, like she wasn’t sucking as strongly, but I figured I’d just forgotten what it felt like to feed a newborn. However, it quickly became evident that something wasn’t right, as she started struggling to breathe and her colour changed to blue, or ‘dusky’ as they like to call it in hospital…cue medics panicking and removing my baby from me.

6 hours

I saw Izzy again, now in an incubator. At this point she had an ng tube; I can see this from the photos, though I’m not sure I understood at this point what this was. For anyone as ignorant as I was, ng stands for nasogastric tube- meaning it goes from her nose down into her tummy. It is taped to a person’s face and therefore at high risk of being pulled out or displaced, but I’ll come onto that later!

1 day

I started breast pumping. Initially on IV fluids Izzy was slowly allowed very small volumes of my milk down her tube. Izzy was intubated (on ‘life support’) so oral feeding was not an option at this point. Anyone who’s had a baby knows just how important the first few days are in establishing feeding, be that breast or bottle. Some would say she never stood a chance, and I certainly came across healthcare professionals who seemed to write her off as ‘complex needs, therefore always tube fed, non-verbal, non-mobile etc.’. But Izzy was out to prove everyone wrong.

3 days

The doctors were able to remove her breathing tube (extubate her), having failed previously. It almost failed again (with her not being able to breath for herself well enough) until our knight in shining armour (Dr Chetcuti) came in the room and suggested lying Izzy on her side. This changed everything for Izzy and is still the best position (breathing wise) for her to sleep in now.

With Izzy breathing for herself again I was now allowed to try breastfeeding under supervision from nurses; it’s a good job it wasn’t my first baby to be honest and I’d lost any sense of embarrassment at being watched while feeding!

From this point until 5 weeks old I tried both breast and bottle feeding daily, with very little success. A few sucks here and a few ml there gave us hope that progress was being made, but more often than not those few sucks resulted in desaturations (oxygen levels dropping) and the need for emergency oxygen to be given.

5 weeks

Videofluoroscopy (video X-ray) showed aspiration on thin fluids (some of the milk was going into her airways). I was told that under no circumstances could I continue to try breastfeeding as this would cause a danger to Izzy’s life. The ‘good news’ was that I could still give thickened breast milk with a bottle. This was devastating for me, as I was still hanging onto the hope that I could have this one ‘normal’ experience with Izzy, after so many others had been taken from me.

Izzy continued to be fully tube fed via ng with daily attempts with a bottle.

2 months

We returned home with a feeding pump and various other related equipment. A monthly delivery was set up for all our tube feeding supplies. At this point I had a 1 year old to look after as well as breast pumping 3 or 4 times a day and tube feeds of half an hour each time 6 times a day. Oh and i was supposed to be doing oral stimulation and trying with a bottle of thickened milk at every feed, which then ended up going down the drain as she had no interest in actually drinking it (anyone who has breast pumped knows how galling that is).

Thankfully we as humans are adaptable creatures, and quickly tube feeding became as normal as any other new routine. We got into a routine of making up the feeds and meds, and using the special backpack that you could put the pump in for out and about. Soon we were feeding here, there and everywhere; in the car, at parks, farms and picnics to name just a few. But it was hard work, to say the least.

Our life became consumed with replacing tapes, when the next feed was and what to do when we couldn’t get an aspirate (a small amount of stomach contents pH tested before each feed to ensure the tube is positioned correctly) or the tube got blocked. Every tubie parent dreads turning round to find their child has, once again, pulled out the ng tube, usually in a completely public place and at the most inconvenient of times. Or worse, realising that you yourself are responsible for pulling it out, as happened to me the first night Izzy came home from hospital. I caught the end of the tube on the door frame and just like that it was out. Thankfully I had opted for being trained to replace the tube myself while in hospital, but pushing 20cm of tubing up their child’s nose is not something any parent enjoys, or any baby or child either for that matter.

3 months

Having gone from seeing a Speech and Language Therapist almost daily in hospital to having no input from them at home (due to poor/slow handover between hospital and community teams) we finally got a visit from a Community SALT. She watched as I attempted (as I had done every day) to get Izzy to feed from a bottle before telling me that by trying so hard I had given Izzy an oral aversion and she was no longer to have anything orally. I asked about how long she would be tube fed and she told me it was fairly likely she would always have a feeding tube. She told me about gastrostomies (a tube going straight into the tummy) which was all totally overwhelming to me at that point.

4 months

Izzy had always had reflux but this seemed to be getting worse and worse. It felt like there were not enough muslins in the world to protect our carpets (and walls, furniture etc.). It got so bad that when I suspected she was going to vomit I would run to the sink and try and aim her at that to minimise damage. Another source of stress (for me) and pain (for Izzy) seemed to be increasingly painful wind that she struggled to shift. This would lead to screaming that felt never ending, and screaming would often then lead to…more vomiting! Hurrah! Our community paediatrician suggested she may have a dairy intolerance and this was the last push I needed to stop pumping breastmilk. It was becoming increasingly difficult to keep my supply up while looking after both girls, and the thought of having to go dairy free as well just felt like too much. Izzy was moved onto a dairy free formula which seemed to help to some extent. However, the reflux remained bad despite various different meds we tried.

Oral feeding felt like it was moving further and further from a realistic possibility, and the paediatrician sent a referral to surgery for a gastrostomy, along with a possible Nissens Fundoplication (tummy surgery for the reflux).

Shortly after this Izzy started her spate of hospital admissions for bronchiolitis, respiratory virus’ and pneumonias, and oral feeding moved even further from anyone’s minds. The focus was on getting Izzy home and well enough to stay there (many days i wondered if that would ever happen).

9 months

The time finally came for her gastrostomy surgery, but it was not to be. Her oxygen levels were just too low and she ended up being admitted for increased breathing support instead (by this point we were using oxygen at home). This turned out to be a blessing in disguise as the surgeon had decided against the stomach surgery for reflux, which ended up down the line being totally essential and lifesaving for her.

10 months

Worse night of my life. Izzy refluxed and aspirated on the vomit before it came out (thankfully whilst in hospital). She stopped breathing and the crash team were called to come and intubate her. She was rushed up to PICU and I was given somewhere to sleep elsewhere in the hospital. Finally the doctors realised the danger to her health of her having both an unsafe swallow and severe reflux, and two days later she had urgent surgery for the gastrostomy and fundoplication.

This wasn’t quite the end to her hospital stays but after a few more admissions and being given Non-Invasive Ventilation for home we finally seemed to break the cycle of constant admissions, just a few days before her first birthday.

1-2.5 years

This was a pretty stable time of getting used to being a family of four actually living at home together, and Izzy was completely tube fed via the gastrostomy. Without the risks associated with the ng tube, we were able to give most of the quantity of milk continuously overnight, and the rest split between three ‘meals’ in the daytime. The gastrostomy button was much easier to manage than the ng tube, and her surgery had sorted the reflux (with the side effect of not being physically capable of vomiting). As always, it wasn’t without it’s issues, with the site getting infected a few times requiring oral antibiotics a couple of times and IV antibiotics once. Everything about Izzy is super flexible due to low muscle tone and hypermobility….including her skin. As she got more mobile she became capable of crawling away from the feed pump while attached to her button, which more than once resulted in the button being pulled out, fully inflated, and Izzy not being bothered at all! Once I remember catching it on her clothes whilst changing her in a tent in the middle of a festival. Out it popped and we had a to carry out the replacement in a field. She likes to keep us on our toes!

The feed pump was another source of endless frustration. Constantly bleeping with error messages due to air bubbles, the thickened feed being too thick for it (!) or just because it felt like waking you in the night one more time. Worse was sleeping through the bleeping due to extreme sleep deprivation, only to realise that your child had missed out on the last 5 hours of their feed due to your inability to wake. Talk about mum guilt! Or of course those times when you go to pick the baby up in the morning only to find them, their clothes and their bed completely drenched in milk, as the tubes had somehow become detached in the night and you’d fed 1 litre of formula to the bed rather than the baby.

We were allowed to offer her puree which she seemed fairly disinterested in, but ever so slowly she started to move from a taste to half a teaspoon full, to a full teaspoon, to 2 spoonfuls etc.etc. Once she would have a spoon or two she was able to have more videofluouroscopies done to assess the safety of her swallow. There is no way to explain how ridiculous these test are. You take a child who has eating/drinking issues, sit them in a super clinical looking chair in a super clinical looking room, mix some foul tasting substance with their normal food and try and feed it to them as a technician behind a glass screen instructs you to ‘stop’ and ‘go’, all whilst you look ridiculous in a lead apron. It’s little surprise that for us and others we know these tests have mixed success. But eventually we were able to establish that Izzy was safe to try different textures of food, and just needed thickened fluids (sounds easy until you’re trying to stop her drinking bath or pool water).

Slightly against advice I started offering ‘bite and dissolve foods’ like those melty puffs that look like giant wotsits but don’t taste as good. She showed much more interest in these than the purees but still didn’t bother eating more than a few at a time. I tried to discuss with various professionals that she might take more if she was more hungry, but apparently as she had an oral aversion hunger wasn’t relevant and wouldn’t be playing any part. As she munched away on melty puffs I started to question the oral aversion, and eventually brought everyone on side for trying a more dramatic tube-wean.

2.5 years

We were allowed to try reducing how much formula Izzy received down the tube (without reducing her fluids) for 48 hours to see if this would encourage her to eat more. She went from having 21 scoops of formula a day to just 6. This was a fantastic success and along with some vitamin and calorie supplements we were able to continue with this regime. To put it simply, once we let her get hungry she started eating. I obviously am not advocating this in every case of tube feeding but for Izzy it was the right approach at the right time. A true breakthrough.

Really the following 2.5 years were a very gradual journey of increasing quantity and variety of textures and flavours of food that Izzy could cope with and decreasing tube feeds and different food supplements she was having. That’s a fancy way of saying we were trying to make sure that not EVERYTHING that passed her lips was a type of crisp. She was basically weaned onto crisps (the less salty child friendly type for the main part) and then we went from there. When you once thought your child would never eat, you somehow become less bothered about the fact that their diet is less than ideal. And when I say gradual I mean PAINFULLY slow, the type of progress you don’t even notice yourself, but when someone sees her again after a few months they do.

After the success of reducing her food by the tube we tried reducing the fluids as well. She’s not been the most keen to drink but over the last 2 years particularly school have been amazing with encouraging her drinking, achieving more than I could at home, probably with more patience and consistency.

At some point the volumes of fluid down the tube got so low that the pump became pointless as we could fit the volumes in a couple of syringes and squirt them straight into the tube. I wasn’t sorry to see the back of that feeding pump I have to say.

4 years

In my infinite wisdom, when we started weaning Izzy I decided the dairy allergy had been a load of rubbish and she was fine with dairy. It took far too many sleepless nights of Izzy screaming in pain from wind for me to finally think to suggest she may have a food intolerance. The first thing we tried taking out her diet (again) was dairy and it had a significant impact on her wind and constipation. However, she was still needing a large volume of wind removing from her tummy via the tube before bedtime to prevent pain overnight. She was now pretty much oral for food and drink, with just medications and a little bit of water down the tube.

5 years

Reluctantly I agreed to try not removing Izzy’s wind from her tummy for a week, knowing full well that this would result in screaming, no sleep and a very grumpy mummy and Izzy. I was wrong. Izzy’s gut had grown strong enough to more efficiently and effectively move the gas through even during sleep and she was able to cope with the change. Following this the only obstacle was for Izzy to take her medications orally. I was similarly skeptical of her ability to do this, but once again she proved me wrong and now reminds me if I forget to get her cocktail of meds out at breakfast. Around this time she was also declared ‘safe’ on thin fluids, meaning she can drink normal unthickened water for the first time.

5.5 years

Today we often watch in amazement as Izzy devours her dinner with more enjoyment and cooperation than her big sister (not that this is much of an achievement some days!). She enjoys a variety of flavours and is always up for trying new foods. Having not used the tube for a few months we got permission to remove it and last Saturday the community nurse came round to do just that. Having been there for 4.5 years, the tract where the button sat is fairly well established, and proving reluctant to close up. But I know that one day in the not too distant future that hole in her tummy will just be a scar, a memory and a small part of her bigger story.

For those who haven’t known us through this journey, I’m aware that the the story sounds very much like Dan and I took on all the work and stresses ourselves. The truth of it was so much more community focused. Our immediate families were incredible, from having little Lauren to stay so we could get used to tube feeding at home, to bringing her into hospital to visit mummy and Izzy. Soooo much food provided by my mum and mum in law. But it didn’t stop at family as close friends from church came alongside us and fed us, looked after Lauren at a moments notice or dropped everything to take me and Izzy to hospital. An amazing community nurse saw me struggling and arranged respite care to allow me to have some special time with Lauren. All Stars Childcare welcomed Izzy with open arms along with her feeding tube and pump. It really does take a village to raise a child and we’ve been part of the best village ever, and still are!

Someone recently described Izzy getting her tube out as a ‘miracle’ which felt a bit strange, as I had been thinking it was just the obvious next step when someone hasn’t been using their tube. But then I realised that it is a miracle, not an instant moment of healing but a very slow and gradual miracle journey, with God using various equipments, clever minds and generous hearts to help achieve this long term miracle. This girl, who was tube fed her entire life from 2 hours old, didn’t eat or drink a thing until over 1 year old, was weaned onto crisps, and expected by some to always need a feeding tube, now enjoys a varied diet like any other child. That’s a miracle to me, and we thank God for this and the other obstacles she’s overcome every day. We don’t know what the future holds but are so happy to be tube free for the time being, whilst also being acutely aware that for many children and adults tube feeding is a lifelong reality. This journey has forever made me more aware and sensitive towards those who eat and drink differently, and the amazing life saving reality that is tube feeding. Breast, bottle or tube: fed really is best. It keep babies (and children and adults) alive where they wouldn’t have survived in previous generations. As much as the tubes and machines caused us pain and frustration, the truth is that they saved my baby’s life, and without them she wouldn’t be here today, enjoying her Auntie Ju’s homemade dairy free Rocky Road (see below). With or without a physical tube, Izzy will always be my tubie baby, and I’m forever thankful for all the journey has taught me.

I first found out that Izzy probably had Down Syndrome a few hours after she was born, but I’ll start by talking briefly about my pregnancies. In both my pregnancies I was asked by the community midwife whether I wanted screening for DS. I think I was given a leaflet to read before deciding, but the midwife herself offered no further information on DS or the reasons you may want to screen. I mistakenly thought that the only reason to screen would be because you would wish to terminate the pregnancy if the baby had Down Syndrome. This is something I wouldn’t do and so I refused screening both times. Had it been explained to me that a child with DS can have health issues that it might be useful to learn about ahead of time and to prepare for, I may have answered differently. If you go on to work in the community, it is worth thinking about how you ask the screening question and what explanation you offer for why it is offered. 

Anyway, my first pregnancy and birth were very straightforward, which is probably why I thought it was a good idea to get pregnant again 10 months later! In my 2nd pregnancy I was diagnosed with polyhydramnios with no obvious reason. I was told it was probably just ‘one of those things’ and although DS was on the list of possible reasons, I was only 27 and didn’t really think too hard about that possibility, seeing it as quite unlikely. I went into labour 2 days after my due date and was surprised by the speed at which things progressed. By the time I made it to MAC I wanted to push. They ran me along the corridor backwards in a wheelchair to a delivery room, where I delivered less than 2 minutes later. Izzy never let out a big cry but they did manage to help her to start breathing. Her breathing sounded noisy and they said it was likely due to the speed of delivery. My husband enjoyed cuddles while I was stitched up, and then I wanted to feed her. I had breastfed my first daughter for 13 months and was keen to get started again. However, after a few sucks she struggled and had a colour change, at which point she was taken from my arms at great speed. That was the last I saw of her for quite a few hours. 

Eventually a registrar came and crouched down next to my bed. She explained that they thought Izzy may have something wrong with her heart which was affecting her breathing, and that she also had soft facial features that made them think she might have a genetic disorder…. Then she paused…’like Down Syndrome?’ I asked, and she confirmed that it was likely. Believe me when I say every parent will remember how this news was delivered to them. For me it wasn’t delivered or received as bad news, and I was horrified to later find out some other peoples experiences. I follow a lady’s blog on facebook who has 3 children, the eldest of whom has DS, and she named it ‘Don’t be sorry’, after the doctor who told her Oscar’s diagnosis started the sentence with ‘I’m sorry’. There is nothing to be sorry for, and I was saddened recently to hear that one of the ladies I am supporting through S&S was given the news in the same way just 4 months ago. You say ‘I’m sorry’ when someone has died or been diagnosed with a life limiting condition. Not because someone has an extra chromosome.

After Izzy was born she spent 2 months on the neonatal ward, struggling with her breathing and feeding. I was determined to breastfeed, and many parents of children with DS do breastfeed, but in the end it wasn’t safe for Izzy as she was aspirating fluid into her lungs, and she came home fully tube fed. After just three months at home she was admitted again for her breathing, and we were in and out of hospital all of that first winter of her life. It was hard. 

She was not a healthy baby. But she was a loved baby. I’m sure you’ve all heard people say things like ‘I don’t mind if it’s a boy or a girl, as long as they’re healthy’. I struggle with this as what i hear is ‘I don’t mind what I have as long as it’s not like your baby’. My baby was not healthy, but she brought just as much joy and light into this world as my first baby, as any other baby. Though no one told me they were sorry when she was born, everyone in the room had sombre faces, and the way everyone spoke to me was like someone in mourning. I wasn’t mourning. I was terrified for the life of my baby, I was consumed by worry, but I was still full of joy at seeing my little girl. For this reason I gave her the middle name Joy, to try and help others to see her as I did. She wasn’t healthy, but she was loved. As midwives you can’t make sure everyone has a healthy baby, but you can support and help them through their pregnancy, birth and beyond; whatever that looks like for them. Every baby is precious, regardless of genetic condition or health issues.

One of the best things that happened not long after Izzy was born was a midwife coming to speak to me. She told me all about her son with Down Syndrome, what he was like and what he had achieved. I was still in shock and I don’t remember any of it, but I do remember how clear it was how much she loved her son, how proud of him she was and how keen she was to show me that life with a child with Down Syndrome in it is a fantastic life. And she was right. At Sunshine and Smiles we would love to speak to anyone pre or postnatally with a diagnosis of Down Syndrome, and whilst in Leeds you are always welcome to refer to us. The Down Syndrome Association has details of other support groups nationally. 

Izzy had a really tough first year in and out of hospital. People with DS tend to have lower tone- Izzy had really low tone. Her ‘floppy airway’ meant that she couldn’t keep her airway open enough when asleep, and her oxygen levels would drop dramatically when she slept or was upset. I found it very stressful every time she started crying, knowing that if I couldn’t calm her down in time it could be a trip to A&E. When she first came home we couldn’t really drive anywhere unless there was someone else to sit with her in the back, keep her calm and watch her colour. During that first year she had 6 hospital admissions to the paediatric wards, including 3 ambulance trips straight to resus. I didn’t like to leave her in hospital and so barely left the ward myself during these times, living for my visits from my husband or mum and little Lauren, who had just turned 2. There were negative impacts on my mental health, and the lowest point was when she crashed aged 10 months and stopped breathing. Thankfully we were on the respiratory ward, but due to be discharged the next day. She was intubated and taken to ICU, and thankfully that kick started the process of actually sorting out what was wrong. She had surgery for her severe reflux, which combined with her aspiration was what caused her to crash. She was also put on NIV at night, which I’ll explain a bit more in a minute. These two things meant that she could finally live a normal life at home, and I could live free of the crippling fear of a quick deterioration of her breathing leading to a 999 call or worse. Of course, it took me a long time to believe she really was ‘fixed’, but here we are nearly three years later and she hasn’t had a single hospital admission since her first birthday. 

Attitudes toward Izzy and her DS diagnosis were generally good, but both in the hospital and the community I felt there was a leaning towards making certain assumptions about what progress Izzy would or wouldn’t make because of her DS. On the neonatal and paediatric wards we were told several times told that the only way to fix her breathing would be a tracheostomy. I fought this decision and she has remained healthy by using NIV or Bipap at night instead. This is a mask she wears while sleeping connected to a ventilator which provides air pressure, keeping her airways open. She was tube fed for her first year of life, and our first speech and language therapist told me she would probably always be tube fed because of her complex needs combined with her Down Syndrome. She still has a gastrostomy but it is now only used for medications and small amounts of water, she eats and drinks normally. 

She spent about 6 months in hospital in total- several healthcare professionals told us that children basically do not develop new skills while in hospital, and she would be more delayed because of her stays. I disagree. Physically she was later than her typically developing peers but is now running around with the rest of them. She is potty trained, sociable and very happy in a preschool nursery. Speech has been slow but she is now saying lots of words which are gradually getting clearer, despite the paediatrician telling me about a year ago that she may not ever talk. Basically I feel that time and time again she has been written off somewhat due to her diagnosis. Less is expected of her. Assumptions are made of what she will and won’t be able to do and achieve. 

As you come in time to work with those who receive either a pre or post-natal diagnosis of Down Syndrome, I ask that you remember our children. Remember that they have an amazing quality of life and long life expectancy. Remember how happy they are, and how much they love and are loved by their siblings. Don’t feel sorry for these parents, but simply be there for them to offer balanced information and support. Yes, a child with Down Syndrome will change your life, but really, doesn’t every child? My two both come with HUGE challenges, but as you can see here, their relationship is just amazing. They really are best friends and I know that Lauren wouldn’t change a single thing about Izzy, and nor would I.

Me: Er, donkey? I can’t see a donkey....

Izzy: naaaa *shakes head, signs music and then hands on head again*

Me: Um, rabbit? You want to sing sleeping bunnies? 

Izzy (getting cross): naaaaa *shakes head, emphasises hands on head*

Lauren: She wants Rudolph the red nosed reindeer. 

Izzy (excited): eh! eh! *nods*

Me: *Face palm!*

Me: *Remembers that 2 year olds don’t get that you only sing Christmas songs one month of the year* ...Rudolph the red nosed reindeer...

Much of my life is spent playing charades in this way, and frustratingly, with all my Makaton training, it is very often Lauren who knows what Izzy wants. Maybe it’s a sister thing, maybe it’s a preschooler thing, who knows. But despite the frustration with translation, it makes me so happy that Izzy can now tell us what she wants by signing.

Before Christmas Dan did his advanced Makaton training, and was surprised at the blank looks he got from friends and colleagues when he explained where he’d been. When you become immersed in a new world of all things disability related, it can be a shock to realise how different your life has become to before and to that of your friends. So Dan has asked me to do a blog about Makaton signing, which has become a huge part of our life, as Izzy’s primary form of communication. Having seen the difference it has made to her life it has become something I’m quite passionate about. 

Before I had Izzy the closest I came to knowing about Makaton was having heard of baby signing and ‘sing and sign’ classes. As far as I could tell they seemed to involve a lot of brain power in learning a load of signs which could help your child in the few months between wanting to communicate and being able to speak clearly. Suffice to say, I never bothered with Lauren and whilst we did have a few frustrating months of unclear speech, she quickly became a confident and understandable talker, and I never felt she’d missed out. 

When I had Izzy, we received a huge amount of support from our paediatrician and Sunshine and Smiles, as well as speech and language therapists, and one thing that cropped up time and time again was the idea of learning Makaton to support Izzy’s communication. I started with Makaton signing for babies, and then moved on to a beginners and follow up course. Both our parents also attended the beginners course. It was from these courses I learnt all the whats, how and whys of Makaton.

So what is Makaton? 

Well firstly, what Makaton isn’t. Makaton is not ‘Sign Language’. It is not the same as British Sign Language, which has it’s own sentence structure, syntax and uses a lot of finger signing. BSL is primarily used by the deaf and hard of hearing community, in place of speech.

Secondly, Makaton isn’t baby signing. Courses such as ‘sing and sign’ do use some makaton signs, along with other signs (either from other systems or made up) to provide a fun musical class that does help babies to communicate as they transition to talking. 

Makaton is a system of signing used as a communication aid alongside spoken English, to help those with speech or developmental delays to communicate. Usually (but not always) these individuals progress towards speech and eventually drop the signing. A common misconception is that using sign will slow speech development as there’s less need to try to talk, but the research actually shows the opposite (can provide links if anyone is interested). 

With Makaton you always say the words that you are signing (never only sign) and you can choose to sign at different levels, depending on the understanding of those you are signing to- from key words of the sentence to every word. If your child signs back, however inaccurately, you praise but reinforce the correct sign by signing it back to them. 

We’ve found it incredible to see Izzy respond to the signing. We probably started signing to her when she was just over one, once all the hospital drama was over. Initially it is hard to remember to do it, as well as remember the signs, especially because you’re not getting anything back. But before too long she learnt her first signs and eventually started using them to tell us what she wanted. It’s been a slow process but she has built up a huge vocabulary of signs, greatly helped by Mr Tumble and Singing Hands. I can’t imagine life without it, particularly how frustrated she would be, as she is a very determined young lady who knows what she wants. This week my mum took her to the park and after a good amount of play she led my mum over to a bench, climbed on, sat down and signed ‘food’. 

For us it has been such a help, and has given Izzy a voice, which in turn has helped other areas of development as she has been able to ask for things and be understood. No one can be sure at an early age if it’s something that will help their child, but I think if there’s a chance it will, it’s worth a shot. It’s been so fun for me to learn, and helped me feel I was doing something to help her. And I wouldn’t restrict it to children with delays either, I know quite a few neurotypical children who have enjoyed signing, and some for whom speaking came a bit later making it a useful aid. 

One thing I would say is that from what I’ve seen among other families, if the parents don’t get fully behind it, it’s a lot less likely that the child will start signing and benefit from it. If you’re going to do it, try and make it a part of your everyday life. And yet it’s as much down to the child as the parents too. The parents can sign all day long but sometimes the child just isn’t interested. Maybe they would rather start to make an attempt at speech, or maybe they are focussing on physical development at that point rather than communication. And of course some children have more severe delays or health issues (such as visual impairments) that make in not helpful to use. 

Izzy’s speech has been slow in coming, although her ‘mama’ is very clear, accompanied by a firm hand on each side of my face if I don’t take notice. At a recent appointment with our paediatrician I was shocked when he told me that Izzy may never speak, and could rely on Makaton for the rest of her life. Of course this is wild speculation, and most children with Down Syndrome do develop speech, but he is right that it is a possibility. I am so thankful that Dan has been totally on board with the signing, especially once he saw how it was helping her. Both our parents and other family members have done the Makaton training, and my good friend Emily has been learning Makaton with her daughter (and Izzy’s friend) to help them communicate with her. I love it when people ask me how to sign something to Izzy, or what she is signing

to them, and we are so lucky to have so many family and friends on board. But I can’t say it doesn’t worry me a bit that the number of people who understand her is so low (compared to how many people understand spoken English). On a side note, if you ever are interested in learning a few signs please just let me know. You might find it more fun than you think! 

Emily recently witnessed a hilarious argument between Lauren and Izzy in Makaton:

Lauren (to me): when my friends go, can I watch Peppa Pig?

Me: No, Izzy has already asked for Mr Tumble.

Lauren (to Izzy, speaking and signing): Izzy, do you want to watch Peppa Pig?

Izzy (signing): no, Mr Tumble!

Lauren (stamping her foot): grrr

Wouldn’t it be great if Izzy could start having conversations not only with her close family but with her friends too. Every day we witness what a high level of understanding she has, but it must be so frustrating not to be able to verbalise what you want to say. However much she understands, it’s going to be hard work getting by in life without a language that others understand. I would love for that to be spoken English, and deep down believe that this will come for Izzy eventually. But it’s looking like the ‘meantime’ could be quite a long time for her, so there might be a few more games of charades in store for us yet! 

Izzy is only one school year below Lauren and so we are now back on the ‘where to send our child for the year before school?’ question, only this time we have fun things like inclusion funding and EHCPs (Education, Health and Care Plan) to consider, and every organisation under the sun beginning with SEN to coordinate with (SENIT, SENDIASS, SENSAP).

And then of course there’s the big question that most parents of children with additional needs will ask themselves at least once through their child’s education- mainstream or specialist school? When Izzy was born we were bombarded (both by professionals and friends/family) with positive stories of people with Down Syndrome, which was lovely. I would often hear that nowadays many children with Down Syndrome thrive in mainstream school, people would tell me of children with DS they knew or had heard of who were doing their GCSEs, or achieving in sport, music, drama etc. In my mind I built up the idea that this should be our goal- to get Izzy into mainstream education and for her to hopefully achieve far more academically than would be expected of a child with DS. I couldn’t see any benefit of separating her from her peers to learn among other children with additional needs, many of whom would probably be behind her developmentally. Surely that wouldn’t help her to learn and develop? Of course, over the past two and a half years, I have become much better informed in so many areas of disability, including education (and I realise I have a LOT more to learn still).

One of my main sources of information and education has been my new wonderful support network of parents of complex children. Gradually an increasing number of those new school photos on my Facebook feed are of children starting at specialist, or SILC (Specialist Inclusive Learning Centre) schools. This isn’t hugely surprising as my friendship group includes an increasing number of parents of children with additional needs. But what may have surprised me a few years ago is that these parents and children are delighted to be going to these schools, often having waited or fought for a place for a while. This is not a sign of failure or a second choice for them, but rather exactly where they want their child to be. Mainstream schools are doing an increasingly great job at being inclusive (compared to when I was at school at least) and putting measures in place to help those who may otherwise struggle to survive and thrive alongside their neurotypical peers. For many children this means a wonderful opportunity to be entirely integrated into ‘normal’ life from an early age, learning and developing social (and other) skills by watching and learning from their friends (as we all do). However, for others this mainstream classroom setting is simply not the right place for them, for any number of reasons. Specialist schools have staff trained in medical, physical, developmental and behavioural complexities and have more time to focus on specific therapies that might be needed.

As I say, I as yet have zero experience of either type of school, apart from having attended a mainstream school back in the day (having turned 30 this year i feel entitled to use such phrases), so all of the above is simply what I’ve read or been told (so could all be nonsense). My views on it, however, have been strongly influenced by my own experiences. Back in January of this year Izzy and I started attending Hawthorne nursery, which is run by the charity Leeds Mencap. You attend one day a week with your child, but there is a parents lounge to chill in while the children are looked after in a great room made to be suitable for all levels of mobility and ability, with a sensory room on the side. The great benefits to me as a parent will have to wait for another day, but I want to talk about the benefits to Izzy. When I started they of course asked about all her medical needs, and told me what care plans they needed copies of. They have different types of seating to suit different needs, and quickly adjusted a chair to give Izzy the right level of support. The food is prepared to whatever consistency the child can cope with. They are not phased by feeding tubes, oxygen, seizures, hearing aids etc. All the staff use Makaton and they work on each child reaching their ‘next steps’ in development using appropriate resources designed for children with additional needs. The children also play together, sing, are read to etc., just as you would expect.

To be honest, when Izzy first started I took all these things for granted. Her needs that to others were seen as ‘additional’ had to me become totally normal, so the fact that the nursery took them in it’s stride too didn’t surprise me. That is, until we started looking for a private nursery. As she receives DLA (Disability Living Allowance) Izzy was entitled to 15 free hours of childcare from age two, which we decided would give her a great opportunity to socialise and make friends, and also give me a bit of a break. So off I went to our nearest nursery to see what days they had available and when she could start. Only it didn’t quite go as planned. It was suggested to me that the room with her peers would be too busy and overwhelming for her, that she may be better in the baby room, oh and they would only be able to take her if she had funding for a 1 to 1 (which I repeatedly told them she was not eligible for due to her level of development). The hardest thing was that all this was without talking to, interacting with, watching or even asking me about Izzy. This was based on her label of ‘Down Syndrome’. Having been slightly spoilt by the level of understanding I found at Hawthorne, the reality came crashing down on me of how some people will always see Izzy’s disability before they see her, and how little understanding of her needs I will find in some nurseries and schools. Thankfully, as with schools, nurseries vary hugely with their approach to additional needs, and we are very happy with the nursery she now attends two days a week. But even here it has not been easy to get to the point of sending her. All through the summer various nurses and therapists were in and out of the nursery training staff on aspects of her care and developmental needs. They have learnt some Makaton and done training on Down Syndrome. Various care plans have been drawn up, trying to get a careful balance between staff understanding the serious nature of some of Izzy’s conditions and needs, without scaring them witless that they will do something wrong and hurt her.  After a six week wait her special chair for dinner time at nursery arrived just last week, having had to make do with a baby chair. And if we want her to go to preschool next September, we really should be starting to coordinate with that school to start the process all over again.

I suppose what I’m getting at is that Hawthorne seems to me a bit like the nursery equivalent of a specialist school, and a private nursery like a mainstream school. Both have their advantages and disadvantages, but one thing I do know is that it’s been much harder work to get Izzy established at her private nursery, for them and us (they have worked really hard to make it work too). I can’t tell you what decisions we will make in the future, and it’ll all depend on how she changes and develops as she grows up. But I do know that there are more important things than academic achievement. I want Izzy to always be somewhere she has friendships, fun, is able to understand and be understood, and is stretched to achieve her potential. I also need any medical and practical needs to be met. At the moment it feels like this is all possible in a mainstream setting, and I see and hear about her thriving among her peers when I pick her up from nursery. And I am willing to fight for inclusion and suitable support, equipment etc. if I feel that this is what is needed. However, unlike two years ago I am also willing to question at every stage where the best setting is for Izzy, putting my pride aside and putting her needs first. If she attends a specialist school at some point it will be because we and her think this is going to be a positive and helpful step forward.

I would love to hear of others experiences of mainstream or specialist schools for their child. It is a world I am only on the very edge of and want to know more. Give me your thoughts!

Amidst all the turmoil of that first night, there was a fairly hilarious moment not long after we’d had all the exciting news delivered. The midwives had left to give us a bit of space (and because I’m sure they had better things to do) but then there came a tentative knock on the door. In came the poor student who I’d probably already traumatised with my quick birth (the third she’d seen) and said she’d forgotten to take something. She grabbed a bowl on the side and ran out as fast as she could. Obviously terrified of being left with these emotional parents, but also hugely embarrassed at her task- the bowl contained Izzy’s placenta. You probably had to be there but Dan and I couldn’t help but laugh. Unfortunately, there was a lot more crying than laughing that night. They eventually moved us from the delivery suite into a private room (which I was hugely grateful for) on a ward. We were assured that it was really close to where Izzy was, which in my ignorance I thought would mean something very different to what it did. And then we were left….for a long time. Hours went by and all I could think was that I needed to be sleeping in preparation for my upcoming sleepless nights (little did I know), but I couldn’t sleep. I had no idea of the extent of Izzy’s difficulties and just wanted to be reunited with her and take her home. We didn’t know whether or not to text our families who had known I was in labour with the news of the birth, without knowing if she was ok. So we left it. 

Eventually we got a call that we could go and see her so we set off. Thinking she was ‘really close’ I set off on foot but at the pace I was able to walk it felt like miles to walk through the hospital corridors to the neonatal ward. Our baby was in a box and hooked up to oxygen, fluids and monitors. Babies who arrive naturally are often quite squished so change a lot in the first few hours- these things combined meant she now looked quite different (see photos below), but very peaceful and beautiful. Reassured that she was ok we finally announced to our families that she’d arrived. For the first five days I lived between my postnatal ward and neonates, before I was discharged as a patient, leaving Izzy on neonates. Everyone seemed quite apologetic that I couldn’t stay at hospital, but if I’m perfectly honest, I was desperate to get home. For a year and a half Lauren had been my baby, occupying my time, thoughts and energy, and I had never spent so long away from her.

The unknown

People talk about fear of the unknown, and the neonatal HDU (High Dependency) and ICU (Intensive Care) rooms were certainly unchartered territory for us. They are hard to describe to those who haven’t experienced them, but the otherwise quiet atmosphere is dominated by constant beeping of life saving machines. As we learnt later on, this does not indicate multiple emergencies constantly occurring, but is mostly feeds and IV drips having finished and no one being available to disconnect them, combined with badly calibrated monitors (we quickly learnt how to sneakily change the parameters of Izzy’s). But it makes for an uncomfortable atmosphere. The nurses have a lot of work and aren’t always available to update you when you arrive. As I got to understand everything a bit better I would content myself with reading her medical notes on arrival, but at first it was quite disconcerting to just walk in and not quite know how your baby was doing. Another difficult situation was coming in on a morning and finding an empty cot or another baby where yours should have been- they regularly rearranged the ward and moved children between rooms without informing us. Whilst you know they would have told you if something bad had happened, there was always that moment of panic.

I struggled at first with not knowing what was expected of me. As the weeks went by I became confident handling Izzy with the equipment attached, as well as learning to change her nappy and wash her and doing her tube feeding; but at first I would just sit next to her cot not knowing what to do or think. It was a million miles away from my expectations of the first few weeks- dancing round the kitchen with Lauren with the baby in a sling or trying to have a tea party with Peppa Pig whilst breastfeeding. I had been all ready to be supermum, but only in the way I had planned. Not with my two children miles apart, trying to live double mum life.

Double life

And it really did feel like a double life. The strangest thing was how normal everything felt when I came home. Lauren was ready to welcome mummy home with open arms, and was obviously totally ignorant of all that had gone on. When I first saw her again, she poked my tummy, saying ‘baby?’ as she had been for the past few months. But satisfied with the explanation that baby was now in hospital, it was down to the importance toddler business of playing, reading and singing. I spent my days at hospital, coming home for dinner, bath time and bedtime. In my head I tried to justify my absence by saying that to her it would simply feel like I had started a new full time job, something many mums do without guilt (and rightly so). Sometimes I would take a morning or afternoon away from hospital, and I even had 2 or three whole days away. Some people might say I should have been with Izzy more, but it’s hard to explain the oppressive atmosphere of neonates, and how the contrasting fun times at home with Lauren genuinely kept me sane. At home there was very little evidence that I’d even had a baby. Little babygrows hanging on the washing line, nappies on the shopping list, but that was about it. I found it hard seeing friends, as no one knew what to say. Even harder was seeing people who hadn’t known I was pregnant, and in response to the normal ‘how are you and the family?’ having to answer that actually I’d had a baby the week before. You usually don’t have to tell people that you’ve had a baby, as it is so much in evidence, and it felt very unnatural and sad. 

Bonding

I guess if I’m totally honest, the fact that I could spend and even enjoy whole days away from my newborn baby shows that we hadn’t yet got a great bond, which is hardly surprising. You know that instant surge of love you have for your baby when they’re born? I never had that with either of mine. With both girls, the few hours following birth were consumed by wondering why I was still in so much pain and discomfort if it was supposed to all be over. I just didn’t feel like I had enough energy to get excited by the baby- Dan gave both girls their first proper long cuddle while I recovered. The difference was that the first night in hospital with Lauren I was up all night with her in my arms feeding. When I used the toilet on the ward, I heard a cry and knew it was my baby. In contrast, the first time I went to see Izzy on my own I walked over to her cot and looked in, and then had a sudden panic that I could have got the wrong one- I couldn’t remember what my baby looked like. For me, building up a relationship with my baby girls took spending a lot of time together. This is not something I had the opportunity of doing with Izzy in the first two months. Even holding her required help from a nurse at first, and for her head to be supported in exactly the right position so that her oxygen levels didn’t drop. Her nappy had to be changed with her lying on her side (for her airway) and don’t even get me started on changing her clothes. But the most stressful part was trying to breastfeed. 

Feeding

Now I hear the term ‘negative breastfeeding experience’ usually used to describe when people have had a tough start with feeding, often due to lack of appropriate support. Now I would never want to discredit anyone else’s experience, but I reckon mine has to be up there with the most traumatic:- at least one nurse standing watching the colour of your baby while you try to manhandle a super floppy baby with tons of tubes and wires attached into a good position in an incredibly uncomfortable chair and vaguely trying not to expose yourself to the whole ward. She might take a few mouthfuls before the machines monitoring her oxygen would start getting overexcited and a few more people would come over and decide whether or not to start blowing oxygen in her face. I was so determined to show that I could do it, but struggled to come to terms with the fact that Izzy just wasn’t able to feed orally at this stage, whatever I did. *I won’t talk too much about this as the topic of breastfeeding probably deserves it’s own post*

Continuity of Care

One of the hardest things we found about Izzy being in hospital (both on neonates and afterwards) was the lack of continuity of care. Over the first few days we got  to know the nurses and consultant working that week, but no one warns you that the consultant will change the following week, and that you may never see those nurses again. I really struggled with building up a relationship with professionals only for them to change… again. Generally ‘handover’ was pretty good, but occasionally it did feel like ‘handover’ was synonymous with ‘chinese whispers’ (if that’s even an ok term to use these days). One day I came in only to be told ‘Did you know Isabelle struggles and turns blue when she lies on her back’. I think my response wasn’t terribly polite, explaining that this was literally the reason she was in hospital. Another time Izzy had been ‘unsettled’ all night and ended up moving from HDU to ICU as she needed more breathing support. This meant that overnight her consultant changed to a man who had never met her, and yet on ward round told me with confidence that she needed a tracheostomy. It was something we were in discussion with other doctors about already, so wasn’t a shock, but it made me so angry and upset that he thought he could read her notes and know what was best for her, without even meeting her and me. The other problem with this situation was that I believe Izzy being left ‘unsettled’ i.e. crying all night was the reason she started to struggle, since her obstructive breathing always got worse when she cried. But chances are that her nurse hadn’t been made aware of this, or else was too busy to prioritise comforting her. Following my complaints about this they made a sign to put on her cot- see below.

Going home

After many false starts there came a day when I was finally able to…..take Izzy for a walk along the corridor!!!! Only I couldn’t. I asked the nurse to come with me; I had never been alone with her and it was terrifying. She had to wear an apnea alarm at all times, and I had to carry a suction machine under the buggy to deal with secretions that affected her breathing. As with everything, we got used to it a lot quicker than anticipated, and before I knew it I was ‘rooming in’ on the ward- two nights in a special room for just me and her. When we were finally discharged we practically ran out the hospital before they changed their minds. To be honest this was a genuine concern, and to this day neither us or Izzy’s respiratory consultant are sure how sensible a decision it was (for her not to have a tracheostomy), although we agree it all worked out in the end! She had barely passed the ‘car seat test’ (in terms of her oxygen levels staying stable in the car seat) and we basically had to take her on the 15 minute journey home with a promise not to put her in the car again until she was a lot stronger. Perhaps we were over cautious but we didn’t even make it home without stopping to settle her. I wasn’t ready to go back and would do everything I could to get her home safely, even if that meant cuddles in the kfc car park! 

Having written all this I realise it comes across as quite negative, but I think it would be wrong to hide what it was really like. One major positive was the sleep! There was no possibility of sleeping with my baby so I had no choice but to sleep at home, which was blissful. The worst thing about having a newborn is usually the sleep deprivation, and so while I was hormonally and emotionally all over the place, I was well rested. Admittedly, other than that it is hard to find many positives, but neither was it totally awful. My baby was alive and eventually got to come home with us. There are many people who never get to experience the joy of taking their baby home from hospital, and so whether that is on day 1, day 21 or day 201 it is always a cause for great celebration. For those going through the neonatal experience I would just say that it will end eventually, though it may feel like forever. People told me it would soon be a distant memory and they were right, soon you will be home and making the type of memories that you imagined you would from day one.

It is not unusual for babies to end up on a neonatal ward, although often more short term than Izzy, so hopefully my experiences might help you to support someone in the future. Please don’t ever judge how much time parents spend at hospital or with their other children (if relevant). We were only able to be there as much as we were because of the immense kindness of family and friends, and there are a hundred reasons, practical, financial, emotional etc. why a parent may not be with their hospitalised newborn as much as they would like. If you have friends in hospital, keep contacting them. Messages of support will at worst be ignored (unlikely) and in my case were all read and appreciated, though rarely replied to due to the complete chaos going on both around me and inside me. If you don’t know what to say, just say ANYTHING as long as it is nice! And offer to visit. Parents of poorly babies still want to show them off to the world, because no amount of tubes and monitors make them less beautiful.

So firstly, a few things Down Syndrome isn't. It is not an illness or disease, it is not contagious and there is no ‘cure’. It is something you have, not something you are. It is not something you need to be ‘sorry’ for, and it is not something people ‘suffer from’. It does not have a spectrum from ‘bad DS’ to ‘not so bad DS’. It does not run in families*, and it is not caused by doing anything in pregnancy. If any of that is slightly confusing then bear with me, I’m going to try and clear up some of the common misconceptions. 

So what is Down Syndrome? Essentially it means that someone has from conception a third copy of their 21st chromosome (where typically we have two copies). More than that, people with Down Syndrome are just people with different personalities, abilities, interests and health concerns, as we all are. Some people would leave it there, claiming that their child with DS isn’t any different to anyone else. But to stop there just doesn’t explain the challenges and difficulties faced by individuals with DS and their families. Because with that extra copy of the 21st chromosome, comes an increased likelihood of many things, some good, some bad and some neither here nor there. 

I’m not going to list all of them as there are tons of things that become more likely to happen if you have DS, such as heart problems, low tone and delayed speech. You will always have some level of learning delay, but again this is really variable. Hopefully you see how this doesn’t lead to a spectrum- one person with DS may have had multiple heart surgeries and need oxygen, delayed speech but good communication through signing whilst another may have no health issues but severe learning difficulties. Yet another may have good speech and understanding but delayed physical development requiring a wheelchair for some years. You can’t say who has the ‘better’ or ‘worse’ Down Syndrome. It’s also important to realise that how prominently someone has the facial features typically associated with DS has nothing to do with whether and to what extent they have any of the other associated conditions and delays. 

Having an extra copy of your 21st chromosome increases the likelihood of lots of things, but these are all things some of us experience anyway. This can make it hard to understand whether someone is poorly because they have DS, or because they are human! When we first had Izzy, we didn’t understand the link between the fact we were being told she had Down Syndrome, and her various health issues. No one explained how and to what extent the two were linked. But as we’ve learnt more about her, it turns out most of her issues are down to her low tone (or floppiness to you and me) which is linked to the DS. Her floppy airway means it obstructs itself when she relaxes in sleep. Her big floppy tongue and low muscle tone in her mouth makes it hard for her to move food around and swallow. Before surgery the valve at the top of her stomach was so floppy that it was letting all her milk back out causing excessive reflux and vomiting. But of course some babies will have these issues without having Down Syndrome, the diagnosis can just help us know better what to look out for. 

One thing I read online a lot is parents saying they wouldn’t change a thing about their child with Down Syndrome. I’m not sure I totally agree as I would love to eliminate Izzy’s health issues. But I understand it in principle- Izzy without the extra chromosome isn’t Izzy at all. She would look different, have a different personality, interests, and abilities. She would be a different child, and I wouldn’t be without Izzy for the world. Imagine one of your children or someone you know with one of their chromosomes switched out for a different one. Down Syndrome is part of who our children are, and I don’t see it as either a good or a bad thing, just part of their genetics.

Much of what I see online is about all the amazing things people with Down Syndrome are achieving. From academic achievements to modelling and acting, and public speaking to incredible dancing, people with Down Syndrome have done it all! This is truly inspiring as a parent, and encourages me to never limit Izzy in what she can achieve. Everyone wants to believe that their child will be the one to show the world what people with Down Syndrome can do. But as for any parent, it is important to value your child for who they are, not what they achieve. Just as most of us will never achieve anything truly exceptional in the world’s eyes, most people with Down Syndrome won’t either, and that’s ok. Izzy has not been the person with Down Syndrome to walk the earliest, talk the earliest or meet any other milestone the earliest. There are some milestones she may never meet and others she might totally smash. But she is doing things in her time and her own way, and we love her for it. I really truly wouldn’t change her for any other child.

*There are three types of Down Syndrome. Izzy has by far the most common, Trisomy 21. The other 2 are Mosaic DS and Translocation DS. Translocation DS can be inherited from a parent who has a balanced translocation. But generally DS is not inherited and so does not run in families, it is totally random.

1. I couldn’t do what you’re doing / I don’t know how you do it.

When people say this (especially the first one) I wonder exactly what they mean...that they wouldn’t have kept a baby like mine? That they would have had a mental breakdown if they’d been through some of the situations we’d been through? Sadly, for some people, these statements are true, but I also know that most people are capable of far more than they believe. We didn’t choose this path, neither has it been easy, but most people I know would have done exactly what we have and coped as well or better. I just find it fairly awkward when people say this, as it’s hard to know how to respond. I don’t think anyone really knows whether and how they would cope with a situation until they are faced with it. 

Possible better alternatives: I admire how you’ve dealt with the situation/ Where have you drawn the strength from to keep going in the hardest times (bit deeper!)? 

2. When will they do... / how long will they have...? 

This is probably one of the most common type of questions I get asked. For Izzy, it’s things like ‘how long do they say she’ll have to have the feeding tube? When will she start eating more? But she’ll grow out of needing the ventilator won’t she?’. Basically asking me to predict the future. When you break your leg they tell you how long to keep the cast on, and maybe how much physio you’re expected to need. When you have a child with complex needs, you no longer work with the mindset of ‘getting them back to normal’; for a start they have a different ‘normal’, that simply might not look how you would expect. My main aim is not to get Izzy off her machines, but to keep her alive and well. Yes, I would love it if she could achieve that without medical intervention, but while she needs extra help I am extremely grateful for it. Change and improvement for children like Izzy is usually very slow, and pretty much led by them, with nothing much we can do but try and encourage and help where we can. There is no age by which the doctors expect her to be miraculously better, but we are hoping and praying for ongoing progress. The day when I know when she’s not going to need her feeding tube any more I will be telling everyone! So no need to keep asking. 

Possible better alternatives: How is she getting on with the tube feeding? Is it very hard to manage the ventilator day to day?

3. Guessing what’s wrong
e.g. So is it that she just can’t swallow/doesn’t like things being in her mouth etc. Sleep apnea eh? So she just stops breathing in her sleep?

This is probably the one that rubs me up the wrong way the most. If you don’t know why a child has a particular treatment, therapy or aid then feel free to ask, this in my opinion is never rude or ignorant, just interested. But please don’t guess! They are called complex needs because they are just that, and to be honest I get the impression that our many consultants and therapists don’t fully understand what’s going on. There’s certainly a lot of trial and error and guesswork in our treatment plans anyway. So I definitely wouldn’t expect anyone else to be able to figure it out. 

Possible better alternatives: Can you explain what Izzy’s sleep apnea actually looks like for her? What is it that is preventing her from eating orally? 

4. Apologising for talking about your problems
e.g. I know it’s nothing to what you’ve been through, but we are really struggling with ...

This one definitely comes from a place of kindness and trying to say the right thing, but just isn’t necessary. I think sometimes people think their problems aren’t valid or big enough to talk about to someone who appears to have ‘bigger’ problems. But certainly for me, it’s refreshing to hear what’s going on in other people’s lives, both good and bad, to help me to think outside of my own life and into the real world. I wouldn’t think for a moment that you are comparing your life to mine (unless you actually are, see next point). You don’t need to apologise and you don’t need to just talk about us and our problems; whatever is going on in your life is important to you and I want to hear about it! 

5. Comparing to another situation which really isn’t on the same level
e.g. Oh yeah I know how you feel, my daughter always gets bad colds too. 

Now as I said above, I am interested in you and your family, but unless your child had complex medical needs, you probably don’t really know what it’s like. I know it is only natural in conversation to try and use your own experiences to move the conversation forward, but some links are just a bit tenuous and actually make me feel more distance between my life and yours rather than less. Izzy has serious medical issues, so I’d rather you acknowledged that this makes her different to many other children- our life probably looks quite different to yours but we are ok with that. 

6. Let me know if I can help 

I have no idea how many times I’ve said this to people, but I know it’s a lot. But once it started being said to be I realised how unlikely I am to take someone up on the offer when this is how it’s left (excluding family and very close friends who I know I can call any time of day or night). When you offer help like this, you are putting the responsibility of deciding how you would be willing and able to help in the hands of someone who is probably struggling emotionally and often doesn’t really know what they most need. I don’t doubt how genuinely this is said- when I have said it I have truly wanted to help, but not wanted to push myself on the other person or not known in what ways I am best placed to help. But I would suggest that if you really don’t know, then simply ask ‘How can I help you? I can bring meals, offer childcare or transport’ (for example). I actually have some wonderfully bold friends and family who went one step further, like my friend Lucy who would message saying ‘I’m looking after Lauren one day next week, would Monday or Tuesday work?’, or my Aunt who messaged to ask ‘Are you in at 2pm today, there’s a Tesco delivery of ready meals arriving at yours?’. If you really are not sure you can offer something to meet the immediate needs, just do something nice- chocolate is a winner every time! Some of Dan’s work colleagues who I’d never met put together a hamper of all sorts of goodies for me, including a big fluffy dressing gown. No good for hospital as it’s like a sauna there but I’ve enjoyed it a lot since. We have had so much help but it had almost always been the initiative of the helper, not us. If you think you are able to help, just get on with it or offer a specific thing. If you don’t think you’re best placed to help someone, just send an encouraging message, a vague half-hearted offer of help isn’t necessary. And actually, a kind message can be just as helpful as anything else. 

So there you go! You may now be judging me for my terribly ungrateful reaction to people trying to make conversation, find out about our lives and offer help. That’s ok, I’m slightly judging myself too but just wanted to be honest about how certain comments and questions come across. Does anyone else agree (or disagree) with any of these, or have any of your own to add (not just to do with complex children but any other situations too)? I guess what annoys each of us is so varied, but maybe there is some overlap; I’d be interested to know. Perhaps you can help me to annoy you less too!!

Feel free to share the post if you think it would be useful for your friends to read too. 

Another distinct memory of my time on the children’s ward is when I left a toy behind on discharge. On our next admission the play therapist brought it to my room, having remembered it was Izzy’s and kept it safe. What I realised from these encounters and others is that the smallest gesture of kindness can make a big difference, especially to someone under a huge amount of stress. 

Similarly the smallest amount of unfriendliness, apathy or discouragement can so easily push you over the edge. When Izzy was first born and on neonates I did get upset, but generally I managed to outwardly keep calm and carry on on the ward, in order to be the best advocate for Izzy’s needs. Presumably the nurses and doctors had good training on dealing with parents under a huge amount of worry and stress and were generally very good at keeping an atmosphere of calm and positivity on the ward. But what was equally obvious to me was that the staff working in the canteen hadn’t had any such training. And yes, you are probably thinking I’m a bit mad for even suggesting it, but at least twice my encounters with canteen  staff left me in tears. I was given food vouchers for my lunch by the ward, covering the value of a ‘meal deal’. To this day I don’t fully understand what is covered by this deal (despite asking on several occasions). I’m sure it’s not actually that complicated, but given that any brain space I had was consumed by worries over a very sick newborn, my ability to take in new non-Izzy related information was limited. This would sometimes result in me being charged an extra 20p for a bread roll or vegetable I’d chosen, or having to pay for my drink due to choosing the wrong baguette. I found the staff unfriendly and unhelpful. To be honest, this probably isn’t a true reflection of them at all. I personally think it’s more that they didn’t feel valued in their job, due to the way they were paid and treated, and therefore didn’t believe that they were able to make a difference to people’s lives. But the way I was spoken to and served my lunch honestly made a huge difference to how I coped with each day. Given that they are mostly serving (alongside staff) family and friends of poorly children and pregnant/new mothers, I wonder how much difference it would make if the canteen staff were told what a difference their attitude could make to this group of vulnerable customers, and given training to this effect. 

As I’ve mentioned previously, I wasn’t very good at leaving Izzy when she was in hospital over last winter, so it was amazing when I was told I could take Izzy off the respiratory ward for periods during the day. Given that the ward isn’t too far from a strip of Indie/Hipster coffee shops on Great George Street I decided it would be fun to see how each of them coped with a ‘disabled’ baby- at this point she was on oxygen and NG tube fed so very obviously had medical needs. I’m fully aware that babies of any kind wouldn’t be their target market, but Izzy was such a chilled baby I knew she would be fine with it if they were. 

The experiment started well, with me visiting Fettle, a Scandinavian coffee shop, pricey but tasty (red velvet latte anyone?). The men serving there went out of their way to interact with Izzy and I, giving me extra loyalty stamps because she was ‘so cute’. They didn’t bat an eyelid when I used one of their sheepskin rugs from the chair for Izzy to lie and play on on the floor (see photo below). It was such a privilege to be out of hospital with Izzy and the experience was made even more memorable by the friendly treatment we received.

Unfortunately i didn’t have the same experience at the next one I tried (which I won’t name), a very Hipster cafe with amazing coffee and food for a reasonable price. For these reasons I really wanted to like it, and so visited a couple of times in the hope they may become more friendly. Instead I just felt like an inconvenience with my baby and buggy, with zero conversation attempts made despite laughing and joking constantly among themselves (this was again run by two men so I’m not being inadvertently sexist). When I took my sister there I actually got a big scowl and eye-roll for asking for two loyalty stamps given that I was buying two coffees (despite this being the stated ‘rules’ on the card).

I won’t go on with my coffee related experiences, but suffice to say I learnt a lot. I think when you are feeling tired, vulnerable, sad or stressed these ‘little’ things do make so much difference to your experience (and your likelihood to return). 

I have to admit, I’m not entirely (or at all) innocent in this level of upsetting people. I’ve always been very good at offending people due to apparently having a lack of filter between my brain and my mouth, but I’ve always put it down to other people being too sensitive and not really being my problem. Only recently through my experiences have I realised how important each encounter of your day can be when feeling vulnerable. Over the past few months I’ve found out that I have (in my usual way) upset/offended a few friends, but someone also told me that I had brought them great encouragement. I think it really hit me for the first time how much power each of us has to affect each other lives, in the tiny things as well as the big. As we all know ‘with great power comes great responsibility’ but I don’t think it has to be a responsibility that weighs you down, but rather an empowering responsibility to see how we can help lift others up. A responsibility to remember that I am not the only one with problems and hard circumstances; if I really see others as equals then their feelings as equally as important as my own. This is a big challenge for me, but I will be trying to think more about my words and attitudes over the next few months. I would so much rather be the random interaction of someone’s day that makes them smile than the one that brings them down. 

What about you? I’d love to hear your experiences of people who’ve made your day without even realising it, with a simple word, action or thoughtfulness. Do you think it’s our responsibility to be less sensitive to our own emotions or more sensitive to the needs and feelings of others?

P.S. if you’re in Leeds and looking for a cafe where you’ll always be welcome with kids or without, my friend Hazel runs Popalong which me and the girls love visiting. They have toys, books and even craft packs to do for all ages.

And the Christmas bells that ring there
Are the clanging chimes of doom
Well tonight thank God it’s them, instead of you

REALLY??? We’re thanking God that someone else is suffering and we are not?? But actually it’s not that unusual an attitude. I remember reading a facebook post from a parent of a child with additional needs in one of the many groups I’m now in; it was something along the lines of ‘I visited a children’s cancer ward today, and seeing what those children and parents are going through makes me really glad that we’re not, and that my child is so much healthier than them’. I get it. I get that looking at other people’s hardships can invoke a sense of thankfulness for your own life, and being thankful to God is never a bad thing. But I do think we can try and get to a place of thankfulness and joy without the need for comparison to what other people are going through. One main reason is that in comparing we are making a gross assumption of how the other person is feeling in their situation. Are those living in poverty in Africa definitely more devoid of joy and love in their lives than the celebrities singing the song? Are all the kids on the cancer ward (and their parents) miserable with their lot in life and have no hope or happiness? I honestly don’t know, so why do we assume we know what’s going on inside someone based on their external situation? 

I used to make similar assumptions when I saw someone in a wheelchair or with obvious learning difficulties. I would feel sorry for the them and their parents for their lot in life. But the truth is I had no idea of what their life was like. Now I do have more to do with children with additional needs and their parents I see that they are just as mixed a bag as everyone else! Sometimes I see parents still struggling to come to terms with diagnoses or difficult behaviours, parents despairing at their child’s constant illnesses or simply fed up with the appointments and equipment that fills their life. But mostly I see families full of joy who honestly wouldn’t change a thing. And I am really really glad to be able to count myself among them. I would never have chosen to have a poorly baby, but it has taught me so much. I appreciate Dan more having seen how strong and committed to his family he is when he lived almost like a single parent to Lauren for much of seven  months last winter. Having myself been away from Lauren for this same time I now take much more pleasure in spending time with her and growing to know her more. And I realised that I am also capable of more than I ever realised. Izzy is an amazing daughter and so loved- I would never want anyone looking at my family and saying ‘well thank God we don’t have that to deal with’, so why would we do the same to others? I actually had the opposite experience recently where someone with a daughter with a greater developmental delay due to an unknown disorder was clearly envious that Izzy has something which so much is known about (Down Syndrome). It just helped me realise how unhelpful it is to compare to other’s situations. There will ALWAYS be someone in a ‘better’ situation than you (at least in the world’s eyes) and someone in a ‘worse’ one. 

Now when I see parents of a child with health or learning difficulties, I can give a genuine, not awkward, smile, and honestly tell them their child is beautiful. Instead of pity for the parents I have respect for them, knowing something (though very little) of what they will have been through to get to this point. But you don’t need to have walked the same path as someone to stop making assumptions of what someone’s life is really like and being open to the idea that a hard life can be a happy one. I am of course not talking about when someone IS clearly struggling or has come to you upset or open about their pain/depression/stress. Some people with hard situations of course are struggling, but until you know that there is no need to assume. 

I’ve just finished reading the book ‘The Lucky Few’ by a couple in America who have adopted three children, two of whom have Down Syndrome. Both children with Down Syndrome needed open heart surgery, and you get to see how going through it the first time prepares them to have a different experience the second time. In the book they share the conversation they had while waiting for their son to come out of surgery, and it really echoed how I’ve been feeling.

‘I wish my twenty-four-year-old self could see this and know how good it would all turn out.’

‘Or maybe understand that just because circumstances are hard, it doesn’t mean they are bad.’

Harder doesn’t equal worse. It can, but it doesn’t have to. Similarly, healthy doesn’t equal better, and an unhealthy baby can bring just as much joy and love to a family as a healthy one, as I’ve been discovering. So why, when asked in pregnancy if I wanted a girl or boy, did I tell people ‘Oh I don’t mind, as long as they are healthy’. If I didn’t actually say this myself, I certainly have certainly heard it from other pregnant friends and nodded along. I know that most people don’t actually mean anything negative about the prospect of having a poorly baby when they say this, but the implication is still there. ‘As long as they are healthy’. What if they’re not? Will you not be overjoyed by their birth? Will you not love them? You see what I’m getting at (hopefully). When I mentioned this to a friend recently she suggested a better phrase might be ‘I don’t mind, I’m just so excited to meet them’, and I thought that was lovely. 

We had agreed that when Izzy was born I would choose her middle name, though we were pretty sure it would be Grace. As soon as I found out her diagnosis I feel that God showed me how much joy she would bring to our and other’s lives and I knew her name was Joy. However, I was unable to tell Dan for about a week, since every time he asked me I burst into tears, filled with a whole range of emotions from across the spectrum! Eventually, though, we were able to properly give her the name that really does sum up her life so far. Even in her worst of times (apart from when sedated) Izzy has continued to infectiously smile and giggle in the face of adversity, and show the world that she is not after anyone’s comparisons or pity. 

Having said that harder isn’t worse, it’s important when supporting others to remember that harder is still harder! Even if someone’s life is full of joy, the things that make it hard still have an emotional and practical impact, and make it necessary to have more support in place. I have so much more help than I ever thought I would need, both professionally (e.g. respite workers helping with Izzy), paid for by us or family (nursery, cleaner) and provided freely through friendship (prayer, and more practical help than I can list). All of this gives me the time and energy to enjoy my family, and I know I am incredibly blessed to have this level of support. I hope that my experiences will help me to replace feelings of pity with a more active desire to help other families reach a place of being able to enjoy each other and God even in hard situations (and I am well aware there are MUCH harder situations than ours).

I admire the people who are able to hang onto their old lifestyle for more than a few months. I don’t know how you do it. With Lauren, I felt like everything about life changed the moment she was born. She was suddenly the only thing I could think about, my only priority, and the main influence on all my decisions of what to do and where to go. At least, at the time I thought everything had changed. It’s taken for me to have a child with challenging medical needs for me to realise how much freedom I really retained after having Lauren. In her first year I painted the hall, made a wedding cake, grew vegetables, helped in various teams at church, cooked and cleaned and generally carried on with normal life. Yes, everything took a lot longer as many activities were limited to nap times (though it’s amazing how much you become able to do in an hour when there’s a threat of the baby waking at any minute). Lauren was also always happy to go to other people and so away she went when I needed a break. Once I stopped breastfeeding I could go out in the evenings on my own or with Dan if we got a babysitter. Lauren even went to stay with both sets of grandparents on different occasions. We were able to go on holiday, but stayed in the UK (one of the aforementioned ‘big changes’ we thought we’d made). This kind of same but different lifestyle might sound familiar to many parents. You miss the things you can’t do anymore but a lot has stayed the same, if you really think about it.

For us (and particularly me) things have been a little different this time around. Izzy is 15 months old and the longest I’ve spent away from her in the day (since she left neonates) has been when she’s been in theatre, and at night when she was in ICU and I wasn’t allowed to stay. Both my and Dan’s mums have taken her out for a walk in the buggy, but this is the longest someone else has had her. Dan of course has spent more time alone with her, but still has yet to do a tube feed or get her to sleep on the ventilator. We have been away (up to a couple of hours drive away) but haven’t yet had a family holiday just the 4 of us (coming up shortly yay). I have had to say no to friends weddings, family funerals, hen weekends, and pretty much anything that happens in the evening. Dan and I haven’t been out the house together in an evening since Izzy. We have only eaten out without children during the week Izzy was on ICU after she crashed and needed urgent surgery. In fact, while this week was super stressful, it was nice to have my first break from 24 hour mummying and nursing, something I think people thought I was crazy for saying at the time!

I love seeing my friends and doing fun stuff, and it’s been hard having to say no to so much. I’m not good at explaining why I can’t do certain things, so people (very reasonably) try to help out with suggestions like ‘can’t you get a babysitter?’, ‘couldn’t Dan put her to bed?’ etc. It’s at these moments I realise how totally unrelatable our life is to many people, and feel quite alone. I’m guessing that many reading this will be wondering why I haven’t taken a bit more time for myself, my marriage and even my relationship with Lauren. Maybe I find it hard to let Izzy out my sight through worry? Maybe I don’t trust anyone else with her? Actually, whilst I do watch her more carefully for practical medical reasons, I don’t think I have any problem letting her go to others, and she is certainly happy as long as she is getting attention from someone!

So why have I said ‘no’ to so many invitations? Why can’t other people look after Izzy? Well there are two main practical reasons:

1. We are not allowed to! Ok, this isn’t completely true, but Dan and I are the only ones trained to feed Izzy or use her ventilator. She has three 45 minute feeds in the day and is on the ventilator overnight from 7pm. Both machines can be quite complicated to troubleshoot when they alarm so do require training to use. We can in theory get the nutritional nurses and ventilation nurses to come and train additional people, but until now that hasn’t really been a sensible option as the equipment has changed so much as Izzy has changed from  ng to g feeds, oxygen to BiPAP. So she’s been stuck with us! I’m sure over time we will get other people trained when it can be arranged but for now there is no way Dan and I could both go out in the evening. 
2. People don’t want to! Again, not completely true as most family members and close friends would love to look after Izzy, but they are also aware of what can ‘go wrong’ with her and that we are the best at assessing when to call for an ambulance etc. Until her surgery and ventilation, she would struggle with her obstructive breathing when upset, sometimes causing colour changes (towards blue). She also has retching episodes which appear quite dramatic and again upset her and used to cause colour changes. As is true with most babies, I as mum have always been the best at calming her down. Our families have been very involved since day one, which is amazing, but also means they have seen her at her worst, and are naturally cautious of being alone with her, afraid of making a wrong call on whether she is ok during an episode, or not being able to calm her down leading to deterioration in breathing.

Whilst these are a very basic outline of the practical reasons for some of our decision making, this is by no means the whole story. I realised this when we had to pull out of a camping trip with church. Every practical reason I gave for us not going was easily countered by helpful friends. We had sorted having oxygen on site, electricity for Izzy’s machines, loads of people had offered to help out with Lauren during meetings, yet Dan and I somehow just knew we shouldn’t go. At the time I had no way of explaining the complex emotional, psychological and attachment related reasons why we weren’t coming, as I wasn’t aware of them myself, but I did learn an amazingly releasing phrase- ‘It’s not the right thing for our family at the moment.’ People don’t argue with that, as they believe you and realise the reasons are outside of the realm of things they can help with. Thinking back, I can now list a few of the reasons it wasn’t right: We had just come out of hospital on ventilation (the last of her 8 admissions over the winter). Dan and I were exhausted, anxious that she would deteriorate again, and hadn’t seen much of each other for 6 months. We also knew that as much as Lauren would love camping, she had again hardly spent any time with her family together for 6 months. But what I learnt is that it’s ok not to explain all that when you decline an invitation or have to pull out of an event. Your family’s wellbeing and relationships are more important than the possibility of offending or upsetting someone by saying ‘no’ (which has always been a worry of mine in the past). For us it’s not just about the practicalities of Izzy’s complications, but working out what’s best for our family as a unit and individuals. I think it’s actually something I would have benefitted from doing even before Izzy. If becoming a parent makes you realise how selfish/self focussed you were before, having a super dependant child with additional needs does so ten times more.

And on the subject of being self-focussed, having had a think about why I decline invitations makes me realise that other people almost certainly have good reasons to decline my invitations too. I have spent too much time in the past worrying why people have said no to hanging out, coming to a party or even a play date. It’s taken until now to realise that most of the time it’s probably not about me! Everyone has their own stuff going on in their lives and relationships, and will be making decisions based on this, not how clean and tidy my house was last time they came, the insensitive comments I may or may not have made or the quality of tea I produced. If I expect people to take my ‘no’ without question or offence, I need to learn to do the same to others. Wow this baby is teaching me a lot!

Having given birth to Lauren I was almost immediately determined to give her a sibling as soon as possible. Why I wanted such a small age gap I’m not completely sure, but I think Dan and I were both in agreement that we wanted to get the ‘baby thing’ over with as soon as possible so that we could get on with having an excuse to pretend to be children ourselves as they grew up (or maybe that’s just me). I also knew that Lauren was super sociable and would love having another small person around (in which I was correct). My dream was that in being close in age they would be able to enjoy similar activities and styles of play. The pipe dream was that they would spend hours happily running round the garden in their own little world whilst I sat drinking Pimms in the sun (or more realistically cooking and cleaning). Either way, one of the main excitements of my second pregnancy was the prospect of giving Lauren a sister, playmate and hopefully friend. 

Since having Izzy I have found out from reading many people’s stories that it is a common reaction with a birth diagnosis of Down Syndrome to mourn or grieve for the perfect baby you were expecting. In extreme cases people can feel like their baby isn’t even theirs, like someone’s taken their baby away and replaced it with a baby with DS. Personally I struggle with the use of the word ‘mourn’ here; I have had friends and family who’ve lost babies and children both in utero and afterwards, and surely nothing can compare to that pain, especially not giving birth to a beautiful brand new baby boy or girl. And whether you like it or not, that little baby is the same one you’ve had since conception, even if it’s not the ‘perfect’ one you wanted. Having had both a typical baby and one with Down Syndrome I also can tell you that any mother waiting for the perfect child will be disappointed! I don’t mean to belittle anyone else’s feelings on getting a diagnosis, and maybe if I had had those feelings I might understand better how it can compare to losing a child. 

Whilst I always felt like Izzy was mine, I certainly do regret some of the feelings I had, mostly relating to Lauren. I felt that it was the end of all those dreams I’d had of them playing together; that Izzy’s potential lack of understanding or mobility would prevent her from building the same relationship with her sister as if she had been typical. How could they share the same interests, activities and friends if Izzy was developmentally far behind Lauren? If you want to use the terminology I’m not a fan of, you could say I was mourning for the sister I thought I was now unable to give Lauren.

Well I can categorically say that these feelings were totally unfounded on truth, and simply came from my own misunderstandings about learning difficulties and sibling relationships. From the day we brought her home Lauren has accepted her little sister, and more than that she has shown more love and kindness to her than I ever would have imagined, given how much of my attention Izzy has taken from her. She is a copier, and so has always shown the same care around Izzy and her various medical equipment that we have. She knew that Izzy couldn’t be left alone and very early on would stop mid-play and ask in a panicked voice ‘where baby gone?!’ whenever I put Izzy down for a nap without her realising. When Izzy cried I would be told ‘baby need mummy cuddles’.

As she has grown up over the past year Lauren’s care of Izzy has gone from cute to actually helpful (and she finally learnt Izzy’s name). She is the best at calming Izzy down with her singing, and will sit holding Izzy’s hand if asked to watch her. This may not be one to tell our community nurse but when Izzy was on oxygen Lauren would go on ahead and turn the machine on when we returned to the house, while I sorted Izzy out. And they do play together. Lauren loves to show Izzy things, read and sing to her, and talk her to death of course. She’s probably the best of all of us at asking Izzy questions, not bothered by the lack of verbal response. She loves to join in with the Makaton we are learning, and celebrates Izzy’s progress and achievements enthusiastically and genuinely. It is still early days in their relationship, but it is clear there is a lot of love on both sides. Yes Lauren is wound up by toy stealing, craft destroying and hair pulling, and I’m sure we have the normal sibling squabbles to look forward to, but there is nothing about Izzy’s Down Syndrome that I could say has negatively affected their relationship. And I believe this will be the case even if Izzy never walks, talks, or reaches any of her other milestones (of course we have every hope she will).

I thought that they needed to be close in age and both be typical for them to be friends. Yet I have friends with big age gaps, small age gaps or even no age gaps (I.e. twins) and they have almost all experienced the same thing: a lot of love combined with a little squabbling. And where sibling relationships have been harder, it has had nothing to do with the age gap or number of chromosomes, simply a clash of character, like me and my little sister*. There is no perfect age gap, or perfect family. 

Maybe you have a child with additional needs and worry that another child would put too much pressure on your time and attention. Maybe you have a typical child or children, and worry about what they would make of it if your next one (either naturally or by adoption) has additional needs. Perhaps you are struggling to get pregnant for the second time and worry you’ve missed your perfect age gap window. I think we all worry too much about things we don’t yet know. If someone had told me that my second child would have Down Syndrome, I would have planned a much bigger age gap, to keep things less chaotic and stressful. But actually, as chaotic and stressful as the past 15 months have been, I wouldn’t change anything about my girls and their relationship, and so I’m glad I don’t get to plan every part of my life. Sometimes the surprises bring you the most joy.

*My sisters and I all get on well now, although you never lose the ability to wind each other up with a simple comment of even a look!

I’m not going to go into great detail about breastfeeding (which some will be rather relieved about) because I will end up going off on 100 tangents and would rather give that emotive subject it’s own space and blog post. However, that is where her feeding journey started so that it where we shall begin. I hope you are all sitting comfortably.....

When Izzy was born I had every intention of breastfeeding her, despite being told it could be harder due to her Down’s Syndrome. She started feeding straight after birth, but this was cut short when she was whisked off to Neonates. The next time I saw her she had an ng (nasogastric) tube in, which is normal for poorly newborns, and at this point we had no idea that she would actually be fed by one for the next 10 months.

As she struggled to breastfeed over her first few weeks of life I think we started to realise that feeding was going to be harder work than we thought. Any attempts resulted in gagging and retching, low oxygen levels and colour changes (to blue). Plus she was making less and less effort to actually feed. A videofluroscopy (basically a video version of an X-ray) showed that she was aspirating on thin liquids- some of the milk was ending up in her airways- which is a big infection risk. When we went home Izzy was completely fed by the ng tube. We were offering a bottle of thickened milk too, but she made no association between sucking and being fed, and became less and less interested in the bottle or even a dummy. It became clear that tube feeding was our future for the time being. 

Using the ng was quite stressful! We had to check the ph of the stomach contents before every feed to make sure the tube was in the right place. The tube also got caught on things and pulled out quite a lot, including the first night we came home, and Izzy got rather good at pulling it out herself too. For most people the tube being pulled out means a trip to hospital, but thankfully the nurses were able to teach me how to put a new tube in at home, and avoid many hospital trips! We were changing the tapes on her face all the time to keep it taped down, and the tapes were making her face really sore. The tube itself caused her sensory issues and increased her gagging and vomiting. It also meant that there was less space in her already narrow nostrils for air. Suffice to say that we were not fans of the ng tube, and were quite happy to be on a waiting list for an alternative, even if it did mean surgery to put in a gastrostomy (tube that goes straight into her tummy). 

We were also talking to the surgeon about anti-reflux surgery (nissen fundoplication) as Izzy was getting sooo sick and stopped putting on weight. The surgeon however decided she wasn’t bad enough to need it. We missed our first slot for gastrostomy surgery and had to go back on the waiting list. 

As it turned out, Izzy had no intention of waiting her turn. She gave us the fright of our lives the night before she was due to come home from hospital in March, and went into respiratory arrest (stopped breathing). It turns out she had vomited while crying and aspirated a large amount of milk. I told Dan that I was not under any circumstances taking her home without her having had the anti-reflux surgery and gastrostomy. I don’t think this was unreasonable given that we and the doctors agreed that she may well not have made it if she had crashed one day later once we were home, but I think Dan was slightly worried by the prospect of me giving the drs a piece of my mind in my emotionally elevated state. Thankfully this was not necessary, as they agreed that her surgery was now urgent. Before we knew it she was out of surgery and soon breathing for herself again. We were quite shaken by her near death experience, but the outcome was great. It could be argued that it shouldn’t have taken a dramatic episode for this to become urgent, since all the things that caused the crash were already well known to her drs- severe reflux and risk of aspiration. But we are learning that unfortunately seeing so many different drs and therapists means that the dots don’t always get joined up, and how important it is for us as parents to be involved as informers and advocates.

So she is now fed all her milk (a special kind that gives her what she needs even though she’s above normal weaning age) via her gastrostomy. It can still get pulled out which is more serious than with the ng, but as long as it gets plugged quickly it shouldn’t close up, which is the main concern. It also got infected in the first few weeks which meant she needed IV antibiotics, but this hasn’t happened since thankfully. 

She needs such a large amount of milk now that it’s hard to keep her stationary long enough to have them during the day. She therefore has over half her milk on a continuous feed overnight, and the rest split between 3 ‘meals’ in the day. This means she can sit up and feed while the rest of us are eating which is nicer for everyone. 

Now that her breathing is doing better we are working with the Speech and Language Therapist to try and improve her oral feeding. It’s very hard to say what is safe for her without another videofluroscopy, which isn’t possible until she can take 4 teaspoons of food. This just means we have to take it really slowly at this point and be led by her. She is interested in food and enjoys the taste of puree, but isn’t amazing at moving it to the back of her mouth and swallowing. We are hoping that over time she will learn to use her swallow more and we can gradually increase how much we give her.

We have to be really careful what she puts in her mouth, and watch her like a hawk with water, sand, stones, leaves etc., as well as actual food. Like with her breathing we really have no idea what the future holds, but it is clear to us that her feeding tube will be with us for the time being. It keeps her alive so we don’t really mind, though the hope is that one day she won’t need it any more. 

This is a hard one to answer as we are still not sure why she struggles so much with breathing. Izzy has frustrated our respiratory consultant from day one. He’s always very keen for surgeons to have a look down her throat, and always disappointed when they don’t find anything particularly exciting. He wants to fix her but it’s hard when we don’t really know what the problem is!

What we do know is that due to her low muscle tone she has a bit of a floppy airway that can collapse in on itself a bit causing obstruction in some positions or when upset. She also has a bit of a narrowing at the top of her airway, as well as narrow nasal airways and a floppy tongue which can again obstruct the flow of air. When she was born she had to be positioned on her side to prevent her oxygen saturations (sats) from dropping. As she got older her position became less of an issue but when she cried her sats would still drop. This still happens to some extent now, but is manageable as she always recovers without help. However, when last winter came she immediately started getting virus’ and chest infections, and basically the extra strain this put on her lungs and airways meant that she has really struggled to get enough air and oxygen into her lungs, especially when sleeping. She has been constantly on the edge of ok, and simply a bad sleeping position or extra snottiness (for example) could quickly push her to needing hospital admission. 

In hospital she has sometimes been put on high flow oxygen, or vapotherm. This is different to normal or low flow oxygen as it is a humidified mixture of air and oxygen that is under high pressure, meaning the patient doesn’t have to work so hard to breathe. Izzy loves this but it is noisy and not something you can have at home! So they always get her back onto low flow before we can go home. 

This year we ended up taking oxygen (low flow) home with us, but we were always just getting used to it when she needed rushing back in. The problem with giving Izzy oxygen is that while you can make sure her oxygen levels stay up, the obstruction means that air just isn’t moving in and out of the lungs properly, so carbon dioxide builds up in the blood, making her poorly. 

This high carbon dioxide level is the reason she is now on BiPAP, or NIV (non-invasive ventilation) overnight. This is as opposed to invasive ventilation where you are intubated (tube down your airway) to help keep you breathing. Izzy has had this shortly after birth and also after her big crash, and it is quite horrible and scary as you have to be heavily sedated to prevent the tube from moving. The BiPAP however is a small and quiet machine (yay) that pushes humidified air under pressure into her lungs and then has a lower pressure so she can breathe out. It can be used to give oxygen but she isn’t needing that, it seems the pressures are enough to help her. She has a little nasal mask which makes her look like some kind of strange elephant/giraffe hybrid (see photo). She’s not a big fan of it, but the whole system has made her happier and brighter in the days, with no need for oxygen even in her naps. We are so thankful for this machine and hope it will keep us away from hospital. 

We have no idea what the future holds for Izzy’s breathing, especially what might happen next winter when the virus’ come back. One suggestion that has been made time and time again is a tracheostomy (tube into her neck), but we feel strongly that this is not the right way forward for Izzy and that if we can find other ways to manage her breathing this is preferable.  

Our hope and prayer is that as she gets stronger, her airway gets less floppy and safer, and that she will eventually be ok without the overnight ventilation. But for now we are just super grateful to have found a way to keep her stable and healthy. 

Summary

Oxygen/low flow: oxygen under low pressure given by nasal cannula (up to 2 litres) or a mask if more is needed. 

High flow/vapotherm: humidified oxygen and air under high pressure given by nasal cannula

Invasive ventilation: tube down the airway to assist with breathing or totally take over breathing from the patient by giving air and oxygen under varying pressures. 

Non-invasive ventilation: air and/or oxygen delivered under either continuous (CPAP) or varying (BiPAP) pressures by a full face or nasal mask. 

Disclaimer: I have done zero research to check whether any of this is medically correct so feel free to correct me if I’m wrong about anything. This is simply my understanding from watching and listening over the past year. 

I first noticed this after my first labour. It was 26 hours long and very quiet. I didn’t shout or scream, and mostly didn’t even want to talk (which made it very boring for Dan). It’s just my character; the more tired/stressed/upset/out of control I feel the quieter I get. I was told several times how well I was coping during labour, and afterwards, both hospital and community midwives said I should have a home birth next time because I coped with the pain so well. Only I didn’t feel like I had coped. I had hated every moment of every contraction, hated life in those moments and felt out of control and gross. Really, who’s to say that in keeping quiet I ‘coped’ any more than the screamers I could hear up the corridor. That was their way of dealing with the pain, and I had mine. But really, I was quite proud of staying quiet and secretly liked that people thought it meant I was strong. I wasn’t about to let them in on the truth! 

Following Izzy’s birth, every time a doctor saw me crying on neonatal they decided I needed to see their psychologist. Did the crying mean I wasn’t coping? Actually, I think I stayed fairly emotionally and psychologically stable during this time, which the psychologist agreed with and promptly discharged me again. I am not in any way a ‘crier’, but I do think that it can be a healthy expression of understandable emotion, and not always (or even usually) a cry for help. 

So if staying quiet isn’t always a sign of coping, and crying out isn’t always a sign of struggling, how can you know what anyone is really feeling? And I honestly think unless you know someone really well, and even sometimes then, we don’t.

I don’t know if anyone else does this, but whenever I get a really bad cold I realise how much I’ve been taking feeling ‘normal’ for granted. I can’t wait to get back to that wonderful place of wellness again; the place that just the day before hadn’t felt like anything special. When I recover I promise myself that I will appreciate every day how well I feel, which usually lasts about 2 days. I wonder if it’s similar with mental health; you don’t realise or appreciate how well you’ve been coping until suddenly you’re not. 

For me, this moment came after Izzy’s first unplanned hospital admission when she was about 6 months. We were in for about 3 weeks, and I poured my every thought and feeling into her care. At that point, I didn’t know any of the staff and didn’t understand a lot of the jargon and equipment. I also didn’t leave the hospital building once. I would run downstairs once a day to buy some lunch from the hospital shop, terrified that Izzy would struggle while I was gone (a very real fear). 

When I returned home my confidence in my ability to look after Izzy was gone. I had taken her to the GP with worries about her breathing, and he had called an ambulance there and then. I felt awful for not recognising how ill she was, and was scared I would make the same mistake again. I had missed Lauren so so much in hospital and couldn’t bear the thought of leaving her again. People started noticing I wasn’t myself and the really brave ones mentioned it. But most people carried on telling me how well I was doing (as though saying it would make it true, or maybe that’s really what they thought). 

I have always considered myself as a strong person. Mental health issues were real and important, but they were for other people, not me. As a Christian it can also feel like there is pressure (whether real or imaginary) to be doing fine because we are trusting in God. If I struggle does it mean my faith isn’t strong enough, or I’m not letting God take the weight of my worries? Am I not praying hard enough? Of course not, but it’s much easier to explain this to other people than yourself! It took a lot of persuading by two good friends and Dan to get me to see the GP, but I’m so glad I did. I was worried that any medication would make me feel like a zombie, or that I’d lose the ability to feel anything. In fact, I just found myself remembering what it was like to feel ‘normal’ again, like when you recover from that cold. I also was able to gradually start getting some space from Izzy. It sounds ridiculous but I forced myself to go a bit further for lunch while I was in hospital, and then started asking the play therapists to watch her while I had a break and a coffee in a cafe. I’m not suggesting that there are instant solutions for mental health issues, but sometimes little changes can make a big difference, and it might take talking to someone to work out what those need to be. 

I guess I’m telling you this in the hope that I might be able to help someone else who may not be coping too well with life right now, despite what their friends may think.  Maybe if I’d stopped believing I had no choice but to ‘cope’ a bit sooner I might not have become so miserable. 

I also want to encourage everyone to be more direct with each other, though maybe not as much as I can sometimes be!! Plenty of people had asked how I was doing but it took a couple of people to look me in the eye and say ‘I think you need some help’ which is so scary to do. I don’t know if I would be brave enough to say it to someone else but I hope so. Obviously, you wouldn’t say anything like this unless you were pretty sure they were struggling. But if you’re not sure, maybe just remember that what you’re seeing on the outside might not be the whole picture.

I don’t have the answers of what to say instead. If you are particularly wanting to encourage by commenting on someone’s mental/emotional wellbeing, rather than any physical progress or by offering sympathy, maybe being a bit more specific could help. For example commenting on something you actually do know or have seen- ‘I think you’ve done really well to have made it to church/playgroup/this party etc.’, ‘I’m really impressed with how you dealt with that person’s questions just then, well done’, ‘Wow, the way you sorted that toddler tantrum was great considering all you have going on’. Admittedly, anyone who said the latter would almost certainly be lying but hopefully you get the idea even if my examples aren’t the best. To be honest I am the queen of saying the wrong thing so I’m not complaining about any specific comments we’ve had that have been said out of love and encouragement. And if someone is hiding how they are really feeling how can you possibly know if they are ok! But I suppose I’m saying that if you don’t know, just don’t assume, and maybe think twice before telling someone how well they’re coping. 

One question I do get asked, often by relative strangers, and the thing that seems to intrigue people the most, is ‘Did you know?’. I have been asked this, sometimes with little to no context, to the extent that I’ve had to ask ‘Know what?’ a few times. In hospital I have similarly been asked the more medical ‘Was it a pre or postnatal diagnosis?’ so many times I have concluded that drs, nurses, physios etc. are just as nosy as everyone else, given hope little relevance it bears to most aspects of Izzy’s care.

The answer is that we had no idea that our baby had Down Syndrome until a few hours after she was born. We chose not to have any antenatal screening for either of the girls.

My reasoning for this, which I think I mentioned in my previous post, is that we would never have considered termination as an option, so I didn’t think it was worth the extra blood test! I pretty much couldn’t be bothered, along with knowing it was super unlikely, and decided it was something we’d just ‘deal with at the time if it happened’. I’ve since realised just how much more complicated it is than this, as I’ve asked myself the question: Do I regret not having the screening?

In many ways, I am glad we didn’t know. Dan’s theory is that to get the news before birth, in the absence of being able to see the beautiful baby that comes with it, would have devastated us. If that is ALL you know about your child, it will be all you think about and dwell on, throughout pregnancy (probably making various ignorant assumptions along the way). It would have been a pregnancy full of fear and tears. I wouldn’t have known if I should be excited about the baby, and whether and how I should tell other people. Instead, when we found out the news, we also could see that Izzy had dark hair and eyes, my nose and Dan’s head shape, and a perfect squidgy little baby body. We could look into her eyes and hold her in our arms and realise that there were much more important things than how many chromosomes she had.

Another reason I’m glad we didn’t know before she was born is that we never had to deal with any pressure to terminate the pregnancy. I’ve heard stories of it just being assumed that is what the parents will want to do. This is awful as well as unprofessional, but maybe not that surprising given that nice in ten women with a prenatal diagnosis will terminate.

So for our sakes, I’m super glad we didn’t know until we’d met her. But for her sake, I wonder if it would have been better to know. Let me explain.

At birth, Izzy was treated like any other baby and was allowed to stay with us for over an hour even after she seemed to be struggling with her breathing. On realising something was wrong, incorrect assumptions were made that it was primarily a heart problem, and she was treated based on this assumption. She was born on a Friday night and it was hard to get all the scans and blood tests she needed over the weekend. If we had known she was likely to have Down Syndrome, I would have had more prenatal scans, focusing on her heart and other likely problem areas. At birth, I imagine the drs and even neonates would have been prepared for her to need extra help, and we may also have been induced (not on a Friday night). It would have been known ahead of time exactly what scans and tests would need ordering, and as soon as she was struggling she would have been at least watched very closely. This doesn’t exactly sound like a stress free natural birth experience, and in Izzy’s case, I don’t even believe that any of these differences would have affected her treatment greatly. However, I can’t help but wonder if, for a child with even more serious health problems at birth, the time gained by being able to anticipate these could make a huge difference, maybe even between life and death. The argument against this is that such serious problems, particularly with the heart, should be picked up on the twenty week scan, regardless of whether the parents have had screening or not. So maybe my concerns are based more on my experiences and emotions to any actual risk to unscreened babies, but it’s certainly worth thinking about (as I definitely hadn’t when making my decision).

Obviously knowing in advance also would have given us, as the parents, time to process and research before meeting Izzy. Personally, I don’t regret not having this time at all, as I feel that Dan and I are both quite adaptable and cope better with dealing with things as they happen.

One last point to make is that I believe it would have been very dangerous for Izzy if I had had a home birth. Several midwives had recommended this to me, as my first birth had been so ‘straightforward’, and without knowing she had Down Syndrome no one would have questioned my decision if I had wanted to give birth at home. I know an ambulance would have been called and she would have been put on oxygen ASAP, but there is no doubt that it would have taken longer to get her to neonatal under the doctors experienced eyes and specialist equipment. When anyone casually mentions wanting a home birth to me now it makes me very fearful and I want to shout at them not to be so stupid, but this is purely an emotional response and I am aware that most home births are lovely, safe and positive. I just hope that people who say things along the lines of ‘if anything goes wrong they can get you to hospital really fast anyway’, have really considered that it could be them who things go wrong for. I’m not sure I did. Down Syndrome leads to a much higher risk of various serious health issues, particularly to do with the heart. I therefore hope that anyone wanting a home birth will consider screening, and anyone not wanting screening will think seriously before having a home birth.

I haven’t yet been asked by anyone whether I would recommend screening or not, probably because it is rightly a very personal decision between a couple. I wouldn’t know what to say anyway. I guess the question to ask is whether the heads up on potential health issues even from the moment of birth, is worth maybe dampening the happy buzz of pregnancy and birth itself. Overall I am personally glad we didn’t know, but the more I’ve thought about it the more I realise that it can be a very sensible decision to try and find out, especially if you are considering a birth further from good medical care such as at home or in a less developed country. 

P.S. I’ve written this to inform and provoke thought for people who, like me, are happy to have a child with Down Syndrome. There are obviously many other people for whom a prenatal diagnosis would result in life and death decisions to be made, so I may write the harder post on decision making in pregnancy at some point.

I didn't have Down Syndrome screening with either of my pregnancies. When I was pregnant with Lauren, we decided there was no point, since I would never abort my baby whatever was 'wrong' with her. We believe that from the moment of conception Izzy's life was her own, and it was our responsibility to nurture that life, just as we did when she was born. My view was that if she had Down Syndrome (which I knew was highly unlikely) we would deal with it when it happened, since surely a baby's needs are basically the same whether they are typical or not. Basically, I was very ignorant as to what Down Syndrome actually meant for a newborn baby, and the many different reasons for having screening (not just because you would abort). I unsurprisingly have thought a lot about screening since having Izzy, but have so many thoughts on it that I'll save that for another time.

A few times during my FIRST pregnancy I reminded Dan that Lauren may be born with Down Syndrome or another condition, but when she was born it didn't even cross my mind. She was perfect, healthy, and really quite an easy baby. At least she must have been easy because 10 months later we thought it was a good idea to make another one! This time I knew what I was doing (haha). I was confident I knew how it would all work and what would happen during pregnancy and newborn stage. I had seen friends sail through the '2 under 2' stage (or that's how it looked from the outside) and was confident that if they could do it, so could I.

I had a relatively straightforward second pregnancy, other than a period of being ginormous due to Polyhydramnios (excess fluid). I had some tests to rule out some possible reasons for this, but they concluded it was just 'one of those things'. 'A genetic problem' is listed on the NHS list of possible reasons for Polyhydramnios, but I naively dismissed this (Dan took it on board a bit more, which helped prepare him a little).

This time I didn't really consider something could be 'wrong' with my baby. I was anticipating a similar birth experience as with Lauren- long, painful but uncomplicated. Lauren was 14 days late, so even after my due date with Izzy I just tried to carry on with normal life (albeit impatiently). The morning of 19^th May (two days overdue) I went to a first birthday party. In the afternoon I planted all my vegetable seedlings out in the garden. I picked Lauren up from nursery and we went home for dinner, bath and bed as normal. But by this time I had a feeling that the twinges I was feeling were getting worse, and very quickly I was in full on labour. At 10:30pm we rushed to hospital, and only just made it in time. She was almost born in the Maternity Assessment Centre but instead a quick decision was made to run (very literally) me in a wheelchair to a delivery room. I entered the room at 11:02pm. Izzy was born at 11:04pm. And she was perfect.

She was blue and floppy, and didn't give a proper cry, but they decided this was all due to the quick delivery. Dan had a big cuddle with her while I was otherwise occupied (ouch), and then I was keen to breastfeed. I said to Dan how great it would be if we could take her home in time for Lauren waking up in the morning. After a few minutes of feeding she came off and I asked the midwife for help to relatch her. The midwife took one look and immediately grabbed her from me and took her to one side, presumably giving her oxygen and other interventions. In my shocked and tired state I had missed her colour changing, something I still feel awful about now.

The doctor explained that she was struggling a bit and they thought it was best to take her round to neonatal to properly examine her and check everything was ok. 'Is that ok mum?' they asked. I wanted to scream that no, it wasn't ok, they needed to bring my baby back to me right now and let me give her the milk I knew she needed. Instead I just nodded. And they took my baby away, just a couple of hours old. Doctors came in and rummaged through my maternity notes, asking about problems in pregnancy and screening. I proudly told them I hadn't had any. Still, I didn't have A CLUE (Dan did).

After maybe an hour a female registrar came in and crouched down at my bedside. She explained that Izzy was struggling with her breathing and oxygen levels and that they thought this was probably because something was wrong with her heart. She then said that because of this, and because she had some 'flat' facial features (this was the phrase that at last awakened me to what was going on) they thought she may have a genetic disorder. 'Like Down Syndrome?' I asked and she assented.

I read about a lot of mothers who suffer with guilt for how they felt when they first found out their child's diagnosis. Sometimes the way in which the news is delivered may well play a part in the way it is received. I feel that the delivery of the news for us was sensitive and not overly negative, but strangely my first reaction was defensive and defiant. I knew I had to make sure the doctor didn't think I saw this as bad news, and I just nodded, trying not to show any reaction, as though she'd just told me Izzy's hair colour. I immediately felt like it was my job to make sure everyone involved in Izzy's care knew that she was loved and valued, and that I wouldn't let them define her by her diagnosis. I don't know why this was my first reaction. Perhaps it was influenced by my watching 'A world without Down Syndrome' during pregnancy, which made me quite angry and upset against the health professionals shown who didn't understand or value the lives of those with Down Syndrome. I guess I felt that everyone in the hospital would think that I should have aborted Izzy. I did find it upsetting in those first few hours to be asked by a few people why I hadn't had the screening, and then later when people assumed I was upset over her Down Syndrome rather than her needing breathing support, but overall staff were supportive, and my defensive reaction unjustified. I don't know what Dan's first reaction was as his face, like mine, remained impassive, but when I first asked him how he felt about an hour later, he just said 'excited' and I knew we were going to be ok.

Aged 27, my chances of having a baby with Down Syndrome were about 1 in 1,000. So pretty low. I still occasionally say to Dan now that I can't quite believe it happened to us. Up till now, my life has been pretty 'normal', and I generally assumed that if there was less than a 50% chance of something happening, it wouldn't. I suppose the people who play the lottery with far worse odds than 1 in 1,000 realise what I didn't; that one is still one very real person, and it could be you as much as anyone else. I guess I just wasn't expecting to win the genetic lottery!

We've had a few surprises in our family over the past few years, and I am slowly learning to expect the unexpected. To live each day with joy, not knowing what will happen tomorrow, whether good, bad or just totally unexpected. Izzy was certainly unexpected but we wouldn't change her for the world. She daily brings joy to Dan, Lauren and I (and others I'm sure) and her smile makes every day brighter (to be very clichéd).

Psalm 139: 13-16

For you created my inmost being;
    you knit me together in my mother's womb.
I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.

I am fortunate enough to attend a church full of young families, and there were even two other girls/ladies expecting within a few months of me. I also had a few pregnant friends from my old job. I was sorted for mummy friends.

But something strange happens when you have a baby. You get lonely. Somehow… having a tiny, often screaming bundle of joy in the house feels lonelier than being alone. They take and apparently give nothing back, not even smiles initially. They can’t play yet but you feel the pressure to be constantly stimulating them; you run out of different places to put them in the house and different toys to wave in their face. And you’re tired. Oh…so…tired. And suddenly you yearn for adult conversation, but when you try and engage in such it always comes back to your new all-consuming new baby. You wonder what you even used to talk about. And you quickly find the only people who can put up with your obsessive baby talk is other parents of babies.

And I soon realised four friends with babies wasn’t going to cut it. I did some quick calculations in my head of how many times it was socially appropriate to text each person with a frantic ‘Help! Company needed before I go insane’ (maybe thinly veiled by lols and x’s to make me seem less desperate). It left a lot of time to fill on my own. Being tight I also didn’t want to pay over the odds for four sessions of baby massage/signing/yoga etc. etc. in the hope of finding friends.

There was, however a free group five minutes walk from my house once a week, and this is where I met the ‘Fit mummies’. They were a group of mums with young babies who had met at a postnatal exercise class called, surprise surprise, Fit mummies. And now they had a WhatsApp group. Hearing them talking about plans of walking in the park together, I managed to express enough interest to win me an invitation (because they are lovely), and soon I was seeing some or other of them most weeks. On the WhatsApp group we could share photos, ridiculous questions, baby milestones etc., without anyone getting bored of the baby talk. In fact we still do. Most people are back at work now, though some are off with second babies, but we still make the time to stay in contact and meet up when we can.

Although Lauren is the youngest of the group by three months she has made some great friends, including her favourite person ever, Olivia. When Izzy was on neonatal, Olivia’s mum, Lucy, was an amazing help with Lauren and Lauren and Olivia’s resulting friendship has stuck. Looking back I now realise I essentially found my own NCT group, and I wouldn’t have been without them (or my other mummy friends) for the world.

So yes, NCT is pretty much paying for friends, but maybe that’s not such a bad thing. I don’t think there’s such a thing as too many friends, especially as a new mum.

*Not yet with Izzy but we’ll get there.

This is what it is to be a parent. This is why parents hang out with other parents, become incapable of conversing on any other subject than their little darlings and often appear to become suddenly altered in taste, interests and enjoyments. Dan and I love food and eating out, and would previously have enjoyed looking for well priced good food in a pleasant atmosphere. We now rate a cafe or restaurant on the number and type of high chairs, what if any toys/ colouring is available and the all important noise levels (loud enough to drown out a toddler tantrum essential) with bonus points available for soft play or an outside play area. When driving through a new town I find myself clocking all the play parks ‘just in case’. And holidays take on a whole new meaning…lots of fun but zero relaxation.

I am not ‘just’ a parent; it doesn’t define me as a person and it is not all I’m interested in talking, reading and writing about. However, it is a big part of my life and seems to creep into every aspect of it.

I guess this is why parents blog about being parents. I’ve seen a lot of parenting blogs and articles, and it seems to me that many fall into one of two categories. The first is written by the creative, crafty and energetic mum, and is full of ideas of fun and educational activities, sensory play and healthy kid friendly recipes. I have nothing whatsoever against such blogs, and have nothing but admiration for mothers who are able to constantly come up with ideas of what to do with their kids. I read them, feel inspired for about 10 minutes during which time i daydream about all sorts of creative activities… Yet somehow the next day we end up playing with duplo and visiting the park…again. I think it is really good to push yourself as a parent, and I do try to think of and execute new ideas, but I’ll never be the one inspiring others with my creativity!

The other type of mummy blog seems to be written to encourage mums who don’t feel like they are doing a good enough job (in theory a great thing to do). However they often seem full of assurances that as long as their child is alive and well, who cares if they’ve watched CBeebies for 10 hours solid- at the end of the day you’ve all survived the day and you deserve a big glass of wine and the opportunity to moan about your kids to your mummy friends. The authors often talk about their kids in derogatory and inflammatory terms for the sake of humour. Whilst they can be quite funny, as a naturally fairly grumpy and moany person (never! I hear you cry) I don’t think it’s helpful for me to read or write in this sort of negative way.

I don’t really know what I’m going to blog about. I know that my life at the moment is dominated by hospitals and appointments, and learning to care for a child with complex needs, so I imagine this will come through in what I write. I have lots of thoughts about parenting generally, but also have plenty of other interests, not least being cooking and growing vegetables. My faith in God also impacts every part of my life, and I know influences my views and opinions, so that’s sure to come across too.

I feel that I need to write to process what has been happening in my life, particularly in the last year. I don’t really mind if anyone reads it or not, but my hope would be that I might be able to help someone who might be going through similar or who can simply identify with something I write.

As for the name of the blog, it’s based on a Chris Rice song, ‘Lemonade’. Everyone knows the phrase ‘When life gives you lemons, make lemonade’ encouraging people to make the best of a bad situation. But this is not how I want to see or live my life. I rather consider that life has given me lemonade, sometimes a bit sharp or bitter with the occasional stray pip but also sweet, refreshing and entirely enjoyable. And I love lemonade!