That moment

That moment. That moment when the pediatrician goes to fetch a box of tissues before sitting down to talk to you. That moment where you know this is it, this is real, this is not just a simple mistake on the screening test.

I was expecting another couple of weeks before we heard anything, and had almost got used to waiting. But the call from the hospital came yesterday afternoon. I didn’t sleep well last night, and this morning felt exhausted as well as apprehensive. Walking back from school run, I felt like I could hardly breathe – a tight band was cinched around my chest, as well as that sick clenched stomach.

But now we know. It’s MPS II (Hunter Disease).  I thought I would cry, but actually knowing which horrible condition Pudding has is easier than worrying about the whole range of horrible conditions. Diagnosis is a relief and gives us positive things to focus on. The first of many trips to Manchester. Starting enzyme replacement therapy (ERT). The possibility of treatments in the future that can help the central nervous system as well.

Worries still remain of course, and I sometimes feel bad about how I feel. Am I condemned to years of looking after a child with special needs? If the ERT prevents the physical problems that lead to early death but does nothing to arrest mental retardation, is that really a good thing? Will I end up resenting the loss of my freedom even more? It feels so horrible to even think this, that I’m almost scared to even write it down. Yet, I know I can’t be the only person to think this way, can I? Or are all other mothers of special needs children just saints?

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