The best made plans

18 August 2018  |  Tamsin Kingsley

I have three sisters, and things were rarely harmonious between us growing up. I particularly argued with my youngest sister who is 22 months younger than me. We are totally different characters and rarely ‘played nicely together’. That being said, almost all my childhood memories are based around having fun with my sisters; from hours spent on long car journeys making our teddies sing in round to zooming down the rapids at Center Parcs pretending to be Star Wars characters. There was always someone to play with even if they didn’t want to play- my eldest sister would sit up a tree reading whilst unknowingly playing ‘prison guard’ for our current role play scenario. 

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.

The best made plans

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).

The best made plans

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!

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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