When I think about the future for my daughter I am caught up in such uncertainty that it makes my head spin. We are almost a year on from when we first had concerns about Harper’s development and things aren’t much clearer. She still can’t sit unaccompanied, she can’t feed herself, can’t talk, can’t crawl and, at 21 months, is still the equivalent of a 9 month old in most of her abilities, less in others. And don’t get me started on the lack of sleep… I think we have hit the low that follows the high of finally finding the right balance of medications to control her “complex” epilepsy. She is so much better than she was, she now tracks activity around the room, she smiles at her brother, she can sign that she wants her dummy, more food or a drink, she’s even briefly flirted with trying to say “more”. All of this has been a complete joy to behold, our tiny person finally coming out of her deep fog, a place she was lost in for far too long. The fact that she now laughs, raucously sometimes, at being tickled or someone sneezing or the Grand Old Duke of York and being jiggled around on someone’s knee is, for us, revolutionary but that hasn’t taken the underlying worry away.
What does this all mean for her future? You know that underlying worry we are all experiencing at the moment? What will Brexit mean for the UK? What will it mean for the thousands of citizens living here, two of whom are married to my siblings, many of whom are our close friends and colleagues? What the hell is Trump going to do next? How long before he causes WWIII? All those underlying concerns, as much as they concern us too, pale next to this worry. What if my beautiful girl never learns to walk? What if she can’t communicate? What if my son never gets to play with her, as he imagined he would, as he puts it to “share my toys with her when she’s big enough”? What if all those images of her future and everything that could be possible for her is smashed into tiny pieces when we finally know her prognosis? How will we cope? We will cope. It is simple. We will deal with whatever life throws at us and we will love her vehemently with every ounce of our beings. But it’s the not knowing that’s the hardest part. Each time we visit the phenomenal team of specialists at the hospital we are met with more negative or inconclusive test results. The more tests that come back without an answer the more rare and complex her condition could be. I spend my time, as a mother of two, around a lot of other families, I delight in the development of close friend’s children and I love to see them playing (read: scrapping) together and I wish nothing but the best for those around us. But there is something so hard about watching them do the simplest of things – eating a tangerine while standing on a kitchen bench and smearing sticky hands across the tiles – I know not many would see the joy in that but its only when you can’t see your child doing things and you don’t know if they ever will that it strikes a chord.
I feel so grateful for my children, don’t get me wrong; I am so lucky to have the opportunity, not only physically but financially, to be raising a family that I feel guilty for wanting it all. Most days I get on fine with it but some days, some weeks, are much harder than others and I just come out the other end thinking “why us?” My daughter is happy and loved and I should be grateful for that, but there is a natural urge to want the very best for your children, to want to do everything you can possibly do to give them the very best opportunities in life and I feel like I am helpless when it comes to her future. I am so thankful for the support I have around me, the wonderful mothers and friends I have who help me stay sane, my amazing husband and “wife” (we have a friend living with us as an au pair, who is just a lifesaver), my hilarious 4 year old and for my beautiful baby girl. I have met some amazing parents in the last year too, who are struggling with the same things we are, who are so strong and brave and amazing every day, they help me know that I too can deal with this.
At best Harper will be completely healthy and “normal” when she’s older, albeit always on some form of medication for her epilepsy, at worst her condition could mean life long care without the ability to do anything for herself. That doesn’t mean to say she won’t be happy, that we won’t live a full and happy life. It’s just a lot to deal with when the answers are not forthcoming and we don’t know when we will get them. Living in limbo is almost the worst bit but for now that’s where we are and, some days, it’s just totally shit.