My amazing son who I'll call J, is two and a half, and was diagnosed soon after birth with a relatively rare genetic condition. We don't yet know how it will affect him as he grows older, but so far he has battled an array of medical problems. One thing's for sure, our little family's life will never be 'normal'...
It's been a week from hell for J.
It all started on Monday, when we went to Great Ormond Street for a check-up with one of his doctors. The appointment time was 10.30; as always, we had to endure 90 minutes in the waiting room that has next to no toys. J soon tired of the cars I had brought to entertain him. What larks!
By the time we finally were called in, it was J's lunchtime and he was starting to get slightly frazzled. The doctor's examination terrified and pained him and his sensitive wound dressing from a previous surgery didn't get put back on right. As the doctor told me J needed more surgery, J was hysterical and I could hardly hear her.
Carrying J out of the hospital, my merry little boy had been reduced to a sobbing wreck. And all I could think was that if an examination could do this to him, how awful he would feel after surgery.
Thankfully, the tube journey calmed him, but on Tuesday, when we had a play date with a friend's daughter, he became upset again, clutching his wound and screaming.
For the next three days, time became a blur of dressing changes and syringes of medicine, A&E, J screaming for hour after hour, me sobbing for hour after hour, desperate phone calls trying to track down doctors who told me to 'manage it at home with Calpol' (Calpol wasn't working) and begging one secretary in particular who insisted the consultant would not speak to us. To his great credit, he called in person hours later.
One of the difficulties when your child has a complex medical history is that it's hard to be sure what is wrong sometimes. Even the specialists, wonderful though they are, don't really know (it looks like the surgery is the answer but that is 10 days away).
When your child's in agony it feels like you are in agony too. You know that feeling when you're in pain and you can't imagine the pain ever ending? That's how I felt this week.
Then suddenly yesterday, I could breathe freely again. We noticed J had stopped clutching his wound and crying for 10 minutes. It lengthened and lengthened; he stopped lying in our arms and began moving around again. He was his usual self! As happy as anything, for a good two hours. My relief was inexpressible.
This morning again, he seems recovered. We are praying he stays well now until the operation.
Click here to read previous diaries.
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