Learning to say no

31 August 2018  |  Tamsin Kingsley

I’ve known several first time parents who’ve been determined that the new baby will not change their life and lifestyle in any way. They figure out ways that they will incorporate the baby into their plans and activities once he or she arrives and agree that they will not let this tiny human being rule their life. For many, this resolution crumbles as soon as they look into their baby’s face and realise this will be their tiny dictator from now on. For others, they manage it, at least for a while. The baby sleeps quietly in the car seat while they enjoy a romantic meal out. He sits happily with a few toys watching mummy or daddy at the gym, and he takes in the sights and sounds of their foreign city break from the buggy. Eventually everyone cracks. You see a slow but continuous change to people’s houses and lifestyles. The toys and activities slowly spread from a play mat in the corner, to a play room or lounge, until there is not a square metre in the house where you don’t run the risk of tripping over Duplo, crayons or some small plastic character drinking pretend tea. Parents stop taking their baby/toddler out in the evenings. Food festivals and gigs are replaced with farms and well, anywhere with a play park. And suddenly Centre Parcs, with its rows of identical and somewhat mediocre chalets, yet unlimited swimming and play opportunities becomes more appealing than a cultural road trip or 6 hour plane ride with a screaming baby.

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!

Learning to say no
Tamsin Kingsley

Tamsin Kingsley

I am a 30 year old living in Leeds with my husband and two children. I am a full time mum and carer to Lauren, 4 years and typical, and Izzy, 2.5 years with Down's Syndrome. Izzy has complex health needs mostly due to her low muscle tone, and struggles with feeding and breathing, resulting in tons of appointments and hospital admissions. Both children are happy and full of life, and our family all love each other very much.

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