One of my most treasured possessions is a necklace with my boys' names stamped onto silver tags. It was made by the amazing, inspiring Lisa Leonard. Her son was born with a rare genetic disorder, and in this article she says: "In accepting the brokenness I have found hope and beauty. I’m learning that it’s by grace alone we face each day".
This feels like one of those defining times that I could either blog about, or not blog about... The temptation to stick to superficial posts about spiderman-cakes and toddler-antics is quite overwhelming. I think that I tend to process things internally, which is pretty incompatible with writing a blog. But here's a (maybe too) honest post about what I'm in at the moment.
The Community Paediatrician diagnosed Westboy with a "mild learning disability" two weeks ago. A different doctor diagnosed "mild developmental delay" in April, which I (perhaps naively) assumed meant that with support (and now a hearing aid) he'd catch up and be ok. This latest diagnosis seems less optimistic, and i'm struggling to come to terms with it. (I'm also not entirely convinced, as the assessment didn't seem as thorough as others we've undergone, -but for now it is what it is!). The combination of permanent hearing loss and delayed development means that Westboy now faces blood tests, MRI brain scans and genetic testing to try to determine the cause.
Last week, when he grew up he was going to be an astronaut, or archaeologist, or fireman, or Buzz Lightyear... Suddenly the possibilities seem so much more limited. Apparently (and this is when I should be forbidden from Googling for my own good!), he will hopefully grow up to be "quite independent", and able to communicate and look after himself. That narrowing of options makes my heart ache uncontrollably, like nothing I've ever known. Perhaps there's been some mistake?? This can't possibly be true for my sweet, funny, kind boy... And yet, there are so many things that other children his age can do, and he can't. I've really enjoyed the summer: being able to see him for who he is (and how wonderful that is), and enjoy time with him, without the constant reminder of what other children are capable of at every preschool drop-off and pick-up. I feel like retreating into a bubble, to maintain this illusion and protect us (well... just me really, as he is entirely unphased by such comparisons!). This article about battling bitterness in parenting a disabled child resonates with my experiences over the past few months. I'm trying not to become bitter, but often feel emotionally raw instead.
I know I am incredibly blessed: I have a wonderful husband, two gorgeous boys, and fantastic, supportive relatives and friends. It's the stuff many people dream of, and would desperately love to have. I am so aware of the pain of friends who haven't been able to have children, and know people whose children have died, and I simply cannot comprehend what they've been through. My life so far has been amazingly free from suffering. And I'm trying to not take for granted what I *do* have by focusing on what is not, ...but at the same time, I feel such deep distress at losing hopes and dreams for this boy of mine.
My background has been one of academic achievement. Not that my parents demanded it or would've loved me any less if I hadn't done well at school, but I did, and probably built a lot of my identity around that. And now I need to deconstruct my definition of "success", and somehow realign my values. Westboy is such a happy child, he delights in making other people laugh and spreads joy and enthusiasm wherever he goes. He's socially and emotionally skilful, and gets along with other children and adults despite his speech difficulties. He's persistent at communicating, -getting people's attention, using gestures, and getting across what he means in whatever way he can.
I'm trying to allow myself to feel all of this, without wallowing, because i'd honestly rather distract myself (usually with cleaning. ooh look, a shiny sink! different types of tea organised in tiny plastic boxes! cleaning products alphabetically arranged! My brain is tricked into believing that i have any control over anything and it's all ok again. For a while at least). Nighttimes are proving especially difficult, as I'm alone with my thoughts and unable to sleep. I try to picture myself resting in God's arms, with his reassurances as each of my fears and protestations surface.
I've found this sermon series and this interview really helpful in wrestling with some of the questions that this has raised. In particular, shifting the focus away from "why" and onto "for what purpose", based on John 9:1-3. "As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him". But my natural inclination is to look for causes, make guesses at the future, and retreat into fear. I'm not sure how to pray about it, whether for healing, or for acceptance. I don't want to put so much energy into praying for change that I miss what's beautiful as it is, and just not what I had imagined Westboy's life would look like. Whatever it is, whether things get worse, or better, or stay like this, it's no surprise to God, and his love hasn't changed.
For you created my inmost being;
you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.