When I had my second child, I knew that he would be my last. So I tried to take in every moment that I could. Little did I know that those may be his only moments.
My husband and I always had a relaxed view on medical issues – if it was not life threatening or surgery, we weren’t worried. We just did all we could to help. So when he failed his newborn hearing test and was diagnosed with hip dysplasia, we weren’t worried. But when we were told he had hydrocephalus at four months, I did what we all know we shouldn’t but still do – I googled it. Hydrocephalus is a condition where water builds up on a baby’s brain, and if not treated the water bursts, and they die. This happens in months. The cure is brain surgery – which in itself can be terminal.
We were forced to wait months to see a doctor, and when we did, it wasn’t clear. He referred us to another doctor. Then another. We ended up with twelve specialists – the best in the country. But none of them knew; it was an unusual case. So we waited – all the while knowing that dithering could be fatal.
My husband took this stoically – he wasn’t going to worry until we knew for sure. But I am a mother, so I couldn’t do that. I allowed myself to grieve, glad that I had soaked in every moment. After I pulled myself together, I could only focus on each day. I gave him a neurological exam every time he went to sleep. I checked his eyes and fontanelle for signs of pressure each day.
Putting him down at night was the hardest – in my head, if I was awake and watching him, I could protect him. So every night as I put him down I would remind myself that he was alive now. I had him now. And that was all I could ask for. Then I would pray that my children would live through the night. Then, finally, I could sleep.
About a year later, we were told that he did not have hydrocephalus. But it was highly likely that he would have a genetic disorder. After a few months the big specialists eventually agreed that it is likely not terminal.
And the testing began again.
So what now? Will he be disabled for life? Or will he live a normal life? Will he get married, have a job, have children?
We don’t know, but for now we love our children, holding them tight, and pray for them. Most of all, we hold onto hope.

Posted by RA1234756, 13th March 2023

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