By the end of July we’re thinking about Jacob’s birthday. He’s going to be 12 years old. I always find it a bit of a weird time. I s’pose birthdays are a bit like Christmas; Quite sentimental and also a time for reflection. Perhaps I don’t do this as much as I used to but I do think about how far he’s come. What we hoped he might achieve and ultimately what it looks more and more likely he won’t achieve. I gave up on the notion of speech quite a few years ago now. What’s the point of agonising over something that won’t happen?   Presents are always difficult as he hasn’t really grown out of any of his toys. And he has loads. I week before his birthday I try to rationalise them and set aside a box for the charity shop, but some old toys are rediscovered and are interesting again. I take him to Toys R Us to see if anything grabs his attention. In the past I have found taking him round the baby toys heart breaking (he can’t build with bricks or do any imaginative play) but this year I’m not too bothered. Maybe it’s all about how much I’ve “come on” than him! He’s not really that interested in anything but I settle on something to help with fine motor skills and that will fit in his backpack to carry around. I go back the next day to get it in secret, though we don’t know he understands the concept of presents. However like all really young kids, when we help him open it, he’s just as interested in the box his toy came in as the toy itself.   When Jacob was little his birthday would start me thinking about all the events following his birth. Within 24 hours he had stopped breathing and was rushed to SCBU where he would stay for 3 days and stop breathing a further 6 times. All investigations showed nothing was wrong and it was put down to a “blip”. I don’t really know how to describe this time at all. Words actually fail me, but the feeling of my skin turning cold and a rising boiling hot panic will never leave me. For many months afterwards I would have the image of him blue and being whisked away from me running like a film clip in the corner of my mind constantly. I don’t know when it stopped, but the reality of apnoea alarms, follow up appointments and worrying if he was “OK” took over and I don’t mind admitting panic attacks and overwhelming feelings of dread took their toll. I got some professional help which worked but when we discovered Jacob wasn’t developing properly those feelings returned. Again I can’t really remember much about the specifics of this time. I think of them as the “dark days”, those 8 months or so from being referred and seen by a developmental paediatrician to getting an actual diagnosis of “your child has a learning disability and is going to be disabled”. That’s a conversation the sticks with you for sure. That moment when someone who knows what they’re talking about confirms what you’ve been hoping wasn’t true, but deep down what you knew was coming. But we’re not in the “dark days” anymore. Jacob makes very very slow progress but almost always I don’t care. We go to holiday club and birthday parties and from time to time I think “Bum he’s the most effected child here” but he’s usually the happiest and cuddliest. He’s always going to need 24 hour care so anything else he learns now is a bonus. He is happy and loves life and really that’s all we want for our children isn’t it?


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s