You may or may not know that my son Harry was born with a very rare cranio facial condition which we had no idea about until he was born. Read about the moment that life changed forever to understand the impact of that news. His syndrome is called Goldenhar and is fairly rare in the Uk (more so for Harry as he’s also at the severe end of the spectrum that the diagnosis covers). Harry and his twin brother Oliver are twelve years old now but I can still remember the questions and concerns we had straight away – some sensible (what will his life expectancy be?) some bizarre (will he ever drive a car?).
I also remember the people who tried to offer hope to me in those early dark weeks with tales of their own friends or family who had overcome something similar. While they meant well they weren’t the answers I was looking for back then and I thought about that recently when I read a new post in a goldenhar group I am a member of. An expectant mother had been told that her scan showed some abnormalities and she had been prepared for her baby to have a diagnosis of goldenhar. As a parent already she wanted to know how life would change for them all, particularly her other children and what to expect with her newborn.
Naturally, many parents commented with photographs of their own children to show her that an initial diagnosis isn’t the ending if can feel like sometimes and that life can still be amazing. I have similar tales that I could have shared of overcoming adversity, of exceeding expectations, of defying diagnoses but I thought back to the mother I was at the beginning.
I hadn’t wanted to hear heart-warming tales of how it had worked out for others. I wasn’t interested in how little Bradley had recently come first in the egg and spoon race despite being told he would never walk. I know this sounds callous and it’s not that my frozen heart wasn’t warmed to hear their successes but my aunties favourite phrase has never been more appropriate than it is here. ‘There’s no pain in the arse like my pain in the arse’. This just means that your own problems and issues take priority. And although that self-absorption can be damaging at times, it serves parents well in this instance while we go into shut down mode to reprocess and recharge.
Why would I not offer some hope?
Because life has changed forever. Hope is fluid and abstract. At the start, you need to know the facts. What you are facing. How life will change in a practical way, the emotional stuff will happen naturally. Facts are the anchor to your ship which has all of a sudden been set adrift without any paddles. It is safe (despite being terrifying), predictable and stable. This could just be my opinion of course but right at the beginning when I was drowning in emotions (lots of unintentional nautical metaphors today folks – no idea why!) the facts were what I clung to just to steady myself. When the doctor told me “Don’t google it when I’ve gone” that’s of course the very first thing I did. I needed to know. Not feel, not think, not hope or dare to dream, I just needed to know in black and white what lay ahead.
And so my response to the post in the group was different to the other mums. I answered that I thought she was incredibly brave to be facing her fears and questions now and she was in the right place to get them answered (the others said this too). I told her that no, the relationship her children have with the new baby won’t be like the one they have with each other. Yes, they will feel more protective, more patient and develop an understanding and empathy they may otherwise never have known. But they would also find it hard to adjust to the extra time and attention that a baby with health complications would require. They might feel, as my son does at times, intense love coupled with fleeting moments of sadness for the sibling they don’t have and frustration for the added challenges that the family faces day to day. I did add that its worth every minute but I guessed she wouldn’t really read that part.
I also explained about the operations Harry has had (he’s had his skull taken apart and reshaped twice, an eye socket made, the lining of his mouth grafted into the socket, his soft palate cut and stretched. I could go on). I told her how exhausting it had been to watch Harry every 20 minutes over 24 hours and the difficulties we had in feeding him. I explained how daunting the initial appointments were with the professionals and how, in time, I both loved and hated the fact that the hospital feels as familiar as a second home and you become the expert in your own child and their condition.
Of course, I also told her that the professionals are duty bound to explain all the possible scenarios including the very worst-case ones but that doesn’t mean it’s going to be a reality. Merely a possibility. Sadly, only time will tell and the wait can be a long one. I ended my message with ‘please get in touch if you need any more brutal honesty’ (with the laughing crying emoji which seems to soften the sentence somehow). She thanked me and said that brutal honesty was exactly what she needed right now and I wanted to hug her. Tightly.
The honest truth is that, in the beginning your brain does exactly what the professionals try to do. Prepare you for the worst-case scenario. If you know all of the facts then you can prepare for them. The broken sleep, hospital visits, operations, meetings, therapies, special equipment for the house, feeding requirements, stress on relationships, your own mental health, the emotions as you face a life you never imagined. It can be quite hard to see the positives while you’re taking all that in and trying to prepare for your altered life.
But in reality, you can’t ever prepare. You can’t ever be ready for the crushing sadness of some moments, for the times you hold the anaesthetic mask over your wriggling child’s face until they go limp in your arms before you kiss them goodbye and hand them over to surgeons. For the hospital stays when you don’t sleep or eat properly for days and weeks, for the days that are peppered with visits from and to professionals, for the way your head hurts as you try to remember every detail of every meeting, for how tired your body, mind and heart will feel.
But equally, you can’t ever prepare for the intense and overwhelming adoration and love you will come to feel for the child that chose you (I HATED hearing that at the start. With a passion!). You can’t ever believe at the start how well you will cope with it all, how you will accept and thrive in your new role, how much your child will teach you about your own capabilities and about the wonderful and ugly side of humanity. There is no way you can ever know that one day you will help other parents who are set adrift on their journeys and you’ll look back on your own and feel incredibly proud of yourself and your wonderful family.
So no, I won’t be giving hope to new parents because I know they’ll find it in time. Hope is all any of us have after all. That could be the most important fact of all.
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