I’ve been in denial about my daughter’s health problems
Coming to terms with the reality of my daughter’s chromosomal disorder
Like any other parent, my main hope when my wife, Rachel, and I discovered we were going to have a baby was that it would be healthy. We weren’t bothered whether it would be a boy or a girl, but we did definitely want it to be healthy. In January 2013, when my daughter, Eloise, had just turned four, that hope was shattered.
What began as fairly routine surgery to put in grommets and remove her adenoids, turned out to be the start of a painful journey of discovery into a whole host of health issues Eloise was facing. The discovery of a sub-mucous cleft palate when attempting to remove her adenoids was the start. This soon led to a heart scan which revealed a hole in her heart. The combination of these cleft palate and heart issues meant she went for genetic testing—and this confirmed she had what the doctors suspected: a chromosomal disorder known as 22q11.2 deletion syndrome, or 22q.
Fifteen months later, and despite—successful—heart surgery and countless ongoing medical appointments, I’ve realised I’m still somewhat in denial about my daughter’s health problems. This denial is not about what has happened to-date, but about what may still lie ahead for Eloise if even just some of the other possible consequences of having 22q prove to affect her.
Fifteen months later, and despite—successful—heart surgery and countless ongoing medical appointments, I’ve realised I’m still somewhat in denial about my daughter’s health problems.
There are countless potential—and, sadly, probable—challenges Eloise may face in both the short and longer term. But I just don’t want to believe they’ll happen. I struggle to bring myself to even think about them. Even when Rachel raises some of the issues, I switch off and wilfully try to not take any of it in.
Part of this stems from a hope that since everything Eloise has been through so far has been—comparatively—mild, the same will be the case with anything that’s to come. Maybe, I tell myself, even if she does struggle with some of the common 22q related issues, it won’t really be that big of a deal. If it’s mild, perhaps it won’t actually affect her much at all.
Not only this, I’m determined to not interpret everything about Eloise through the filter of 22q. Maybe some things just are. I don’t want to project problems onto her simply because the research shows that it can be common among people with 22q. Labels can be so constraining. And no matter how much Eloise may be affected by 22q, she is so much more than that label. No medical term could ever come close to capturing the wonderful and unique person that Eloise is.
I don’t want to project problems onto her simply because the research shows that it can be common among people with 22q. Labels can be so constraining. And no matter how much Eloise may be affected by 22q, she is so much more than that label.
But true as this is, I’m realising I may also be being a little naive. This week I forced myself to read through much of the material on the wonderfully supportive and informative Max Appeal website. And hard as it was to accept, there was no denying that when I was reading the descriptions of the common challenges associated with 22q, I could see how Eloise is affected by some of them.
It would be easier if Eloise wasn’t my first born. All parents are somewhat clueless when it comes to their first child. There were so many things about Eloise that, in the first few years of her life, we assumed were normal. Hindsight has helped us see now that they weren’t. Long before the discovery in 2013, there were plenty of indicators that Eloise had 22q—we just had no way of knowing or of connecting the dots. And, if there’s no older, healthy child to base things on, when symptoms are mild, it’s not easy to judge whether, for example, a particular developmental hurdle is delayed or not.
Watching my second daughter, Imogen, grow up, it’s impossible not to notice she is developing quicker than Eloise did. And though she’s not even two yet, she’s hit most key milestones to-date sooner than her big sister did. But still, even with this evidence before my very eyes, my tendency is to veer towards thinking—hoping—it’s nothing more than due to the fact children develop at different rates. I struggle to accept that it is almost certainly due to 22q.
If I’m honest, my own denials are complicated by the fact I believe in miracles. I’ve seen miracles happen. I don’t doubt for a moment that prayer can and does make a difference. I’m also a realist though. I long and hope for the day when there will be no more sickness in our world, but I also know that that’s not the world we live in now. Some people may experience a taste of that age to come and be miraculously healed, but many won’t. And so I’m torn. I pray that God might intervene and restore Eloise to full health, but I also know I have to be fully prepared to do everything I can to support her through what may well be something she’ll struggle with for the rest of her life.
Thinking about all this breaks my heart. Every time I pause to just look at her or hold her in my arms, I find myself hating the fact she’s going to have to fight so much harder through life than most of the rest of us will ever have to. There are so many little challenges in her life that aren’t normal, but she has no way of understanding this yet. She bravely takes on so much in her life with little realisation most of her friends won’t ever experience the same things.
Thinking about all this breaks my heart. Every time I pause to just look at her or hold her in my arms, I find myself hating the fact she’s going to have to fight so much harder through life than most of the rest of us will ever have to.
It feels like it might be easier if it was just one thing that was the challenge. At last count though, Eloise was attached to thirteen different departments with the Sheffield Children’s Hospital. In ways that are—thankfully—mostly mild, Eloise has physical challenges with her heart, hearing, speech and language, eating, digestion, legs, and more. And there’s some relational and learning challenges too. All these ‘small’ challenges add up. And, again, they’re all things that the rest of us never have to think about.
The hardest part is thinking about what might lie ahead. This is undoubtedly where I’ve been most in denial. Eloise started school in September and she has adapted brilliantly. Her reading, writing, and basic maths is coming along so well. But all the evidence from people with 22q points to the likelihood of some struggles further along the way. Even if just mild, there is a chance she’ll, at some point, fall behind her friends in some areas due to learning difficulties. Looking further ahead, there’s also a higher risk of depression for people with 22q. And, sadly, learning difficulties and depression doesn’t come close to touching on all the other areas that to greater and lesser extents could affect her.
It’s not hard to understand why I don’t want to think about all this. And I do sincerely hope and pray she doesn’t have to face all of this. I hope beyond hope that as most of her symptoms have been mild so far, that’ll be the case with anything else to come. It won’t make it easy, but it will be more manageable. Whatever the outcome though, I’m also realising there’s little to be gained from being unaware and ill-equipped to give Eloise all the support, encouragement, and love she needs and will need.
If my head has been in the sand, I know it’s time to get it out. I still don’t want to project onto her assumptions; I don’t want to start seeing things that I’m only seeing because I’m looking too hard. And I definitely don’t want to let 22q to become a label that defines or constrains her, but neither do I want to be naive or ignorant. She deserves better than that. She needs better than that.
As I think about all of this though, I can’t help but keep coming back to how we came to give Eloise her name. With both our daughters, Rachel and I wanted to name them for a reason. The name had to be more than pretty for us to be interested—it had to have meaning. We didn’t fully appreciate it at the time, but with hindsight it seems that giving our eldest daughter the name ‘Eloise’ was far from an accident. Eloise means ‘warrior’.
We didn’t fully appreciate it at the time, but with hindsight it seems that giving our eldest daughter the name ‘Eloise’ was far from an accident. Eloise means ‘warrior’.
And with every battle already faced Eloise has embodied that meaning. She has been a truly brave warrior, taking whatever is thrown at her in her stride. She has a warrior spirit that I know will give her strength for whatever the future holds and whatever challenges still lie ahead.
I know I will never be able to fully express it, but I am so, so proud of her. Eloise is my warrior of light. She faces her battles with courage, and her joyful persona radiates to everyone she encounters. Even though she faces obstacles most of us will never have to overcome, I have a sneaking suspicion those obstacles will become the stepping stones that enable her to take on the world and leave her mark. And if me snapping out of my denial can help her turn those obstacles into stepping stones, it’ll be more than worth it.