I know that my baby will be ok. I know that she’ll overcome the hurdles of being born without a right hand, with a smaller right arm. I know that she’ll rise to the occasion and live a beautiful life. I know that right now, nestled in my womb, she has absolutely no idea that anything is even ‘wrong’. She won’t know that there is for years to come. So despite knowing this, why do I feel so shit? I feel like I’m trapped in a washing machine on full spin, like my emotions are a turning kaleidoscope. I’m swinging from laughter to tears, to rage. I’m swinging from feeling absolutely fine for days on end, to snapping rudely at people who wind me up in public and not always fighting the urge to just bloody hide from it all.
I’ve been sat thinking about writing this blog post for well over a week. I have trawled the internet in search of the key, of the confirmation that it’s OK to just feel this bad right now. Unfortunately, most of the posts geared at parents whose limb-different children are already in their arms. They’re super positive, as they should be, as I know I’ll be too once our little girl arrives but which I simply can’t cope with right now.
Right now, she’s not in my arms. She’s not here to prove to me, day by day, that everything is going to be ok. She’s still just an idea, just a bubbling sensation in my tummy. Her very absence, our inability to hold her and see her, is what makes all this so difficult right now. What else might be wrong? Does she have any other issues we haven’t picked up on yet? What will her arm actually look like? Will it continue to grow; will it be stunted and shrunken?
I think that I want, for the first time in my guarded life, to step out from behind my well-armed defences. I want to do this in a bid to help me to understand my own thoughts and emotions and I want to do this just in case, on the off chance, that it might help someone else going through something similar in the future. Perhaps this little shard of honesty might let someone else know that it’s OK to feel rubbish while your pregnancy, which every scrap of media tells you should be perfect, has been derailed by a bombshell tossed in from left field.
Guilt is my arch nemesis. It wakes me up at night, it leans in over my shoulder every time I feel, well, just about anything. When we first received the news at our 20-week scan, compounded by the (mercifully unfounded!) worries that there could be significant other life-threatening issues, I felt guilty that I’d done something wrong. That I’d eaten too much of something, or not enough of something else. That I’d had a drink or two the night before I found out I was pregnant. Was it because I’d lifted heavy objects in my stubbornness to carry on as normal despite the pregnancy? Luckily for me, I have a very direct consultant who told me in no uncertain terms that none of the above was the case. And luckily again for me these irrational, but by all accounts totally normal, feelings on guilt passed swiftly for me. Nothing broke my heart more than when my husband (who is my absolute rock) admitted that he felt he’d let his daughter down before she’d even been born.
While that painful first stage passed quickly, the guilt didn’t go away, it simply changed shape and form. The guilt became about my own feelings. Every time I felt happy in the early days, I felt guilty. My baby is not ok, how on earth can I be feeling fine?
Then as the weeks wore on, and we received the good news that Baby’s brain, face and heart were all ok, the guilt started picking on me for feeling bad. We had the wonderful news that Baby was going to be ok in all other respects than her missing hand. So why, why the hell, did and do I still feel so rotten? When we first found out about the hand my predominant feelings were of shock. Followed by the sweeping statements that “so long as everything else is ok, we don’t care about a missing hand.” Now we’ve had as close to an all-clear as we’re going to get I’m as surprised as anyone to discover that actually, I do care about a missing hand. I care deeply that my little girl, the one I’m supposed to protect and support, is going to have bigger hurdles to get over than we’d imagined. Despite the constant reassurances that she’ll be fine, that she’ll be normal, that she’ll adapt, there’s simply no escaping the fact that she’ll have all of those ‘every-day’ hurdles to get over, but also plenty more of her own.
I feel guilty because, if I know that she’s going to be ok, does that mean that I’m actually upset for myself? If I’m upset for myself, and for my husband, does that make me a bad parent? Am I being selfish?
I know, with more certainty than I’ve felt before, that I will love my daughter to the ends of the earth and back. I know that her missing hand will do nothing but increase my love, my devotion and my passion for her well being. I know I won’t care a jot when I look at her – other than to mourn for her loss. Her loss of opportunities. Her loss of choices. Not all opportunities. Not all choices, but still some, maybe even many. But I know that I will do everything in my power to ensure that my daughter is a confident, proactive young lady with a sense of self-esteem I am often missing myself.
As comforting as this certainty is, as confident as I feel about her life post-birth, I just can’t shake the wobbling sense of uncertainty, of depression, which can see me crumble into tears within seconds. If I know she’s going to be OK then what right do I have to feel blue?
When people have so much worse to power through, when people receive the news we had dangled in front of us but mercifully dodged, how and why should I feel so upset about a missing hand? The guilt of knowing that things could have been so much heart-breakingly worse. Yet, also knowing things could have been better too. Things could have been perfect.
I guess that grief speaks for itself and I had to try incredibly hard not to explore my feelings of grief in the guilt section, and in a way it was impossible not to touch upon for at least a second. But the grief that I feel, that I share with my husband, is the chief trigger for the guilt. The two emotions are inextricably linked. They are the ying and yang of my emotions. Where one arises, the other inevitably follows.
It’s the grief for the loss of our perfect child. The one every film, every pregnancy app and book tells you that you should have.
The grief is all about the little things.
The realisation that my wonderful, excited and deeply caring husband will not automatically be able to share his lifetime loves of violin and hockey playing with his child.
It’s that moment when you watch a friend’s small child grappling their two perfect hands around a toy and you realise that your daughter, however normal, however confident, just won’t be able to do it that way.
It’s that moment when you both stop and realise that you and your husband won’t be able to hold your daughter’s hand at the same time.
It’s that moment when you realise that, no matter what the consultants say, no matter what you tell your friends, you are not going to ‘enjoy’ another moment of this pregnancy until you have your little girl tucked up safely in your arms.
It’s a grief that she will not only have to overcome all the normal hurdles and troughs of childhood, but that she’ll have a whole battalion of her own demons to fight as well.
It’s knowing that one day she’ll come home from play group, school, a friend’s house or college and she’ll slam her door in frustration and she’ll just cry because of the injustice of it all. Because someone said something, because she couldn’t achieve something she wanted to, because she’s just goddamned different. And when that time comes, it’s knowing that you’ll feel every ounce of her pain but also have to hide it well enough to help her sail through that storm.
It’s the fear that, whatever you do, however hard you try, you won’t always be able to shield her from that. It’s the conflict between wanting to let your daughter know that she is perfect just the way she is. That she can do anything she sets her mind to. But that, from time to time, it’s OK to feel angry. It’s OK to feel let down, it’s OK to feel frustrated and sad.
And then there’s hope.
There’s the hope of knowing that we’ve been lucky enough to have been given three and a half months to prepare for her arrival. Yeah, that’s a little tough for us right now in our swamp of uncertainty, but for her that’s pretty damn awesome.
For her it means that when she arrives she will have two parents who’ve come through the shock, who have considered as many eventualities as they can and who have put support networks in place for her right from the outset.
There’s the hope that we receive from other parents out there who reassure us, day by day, that we’re all going to be ok. The hope we have already received from REACH – Association for Children with Upper Limb Deficiency and their community: that our little girl is going to be just fine. It’s the hope we find in the personal accounts, the blogs people have taken the time to write, in the picture books some kind soul saw a gap in the market for.
It’s the hope I find when I watch Finding Nemo that despite having his ‘lucky fin’ there was nothing that Nemo couldn’t do. And in that same vein I hope with all of my considerably deeper heart than I realised, that our little girl will feel the same and that even when the time comes that she doubts herself, her mum and dad will move heaven and earth to get her where she wants to go.