Horrible word and a horrible trait to possess but I imagine it is a fairly common emotion amongst parents of disabled children at some point or another. Do you agree? I’d love to hear your thoughts.

I don’t mean to say I sit, seething with jealousy over other people’s “perfect” children and lamenting why normal (I hate that word…typical? habitual? unexceptional? hmmm) parents problems seem to pale in significance compared to our monster sized issues. Whilst I would never undermine any individual situation, I can say from experience that some things I hear don’t even seem like problems in comparison to what having a disabled child can throw up. It’s the little things such as going out for long, lazy Sunday lunches with a group of people…holidays on the beach…shopping trips…visiting family or friends. These sorts of activities can often fill me with dread to the point where we don’t bother doing them. It’s not all the time but my point is, it isn’t as simple a notion as most other families experience and I think you’d be lying as a parent of a disabled child if you said there isn’t a slight element of jealousy lurking in your mind. People ask us if we’d like to come over for the afternoon? Eeeeeekkk. We’re lucky though as Jude has a fabulous set of grandparents in my mum and dad and he sees their home (as do my other children) as his own. Only with their support are we able to do some of the social things Jude hates but we love to do.

Whilst I hear about how excited people are to have the loooooong summer holidays coming up, all I can feel is a sense of slight unease and a worry about whether I will actually survive it or not. I don’t mean it horribly, I can’t wait to spend time with them and not have to run our usual military-esque morning routines, but I have to admit the thought of Jude 24/7 for however many weeks it is, is pretty scary.

Now I appreciate that this jealousy is a) pointless and b) all relative, but I just can’t help it.

I was reading an article a while ago about a couple who had found out their 4 month old baby had learning disabilities; they were absolutely distraught and kept going on about mourning the daughter they’ll never had. At first I thought, “what a pair of selfish morons!” but actually, they may have a point. When you decide to have a child, you imagine the perfect scenario with a healthy little girl or boy; no one chooses to have a child with a genetic disorder or even contemplates it may be viable.

I knew something wasn’t quite right with Jude at a very early stage, literally a few weeks but never really thought about it a great deal. I think I was just trying to get my head around looking after this new little being whilst attending all the hospital appointments at the same time. Am I still mourning the loss of the son I will never have? As mean as it sounds and actually I think I’m just being realistic, Jude is never going to be your average son. However, this is not necessarily a negative statement – a friend of mine regularly tells me that Jude wouldn’t be Jude if he didn’t have all the weirdy quirks and I totally agree, I can’t imagine him as a typical 10 year old boy. As much as I’ve tried, I just can’t.

I think I am still in mourning. Perhaps this never goes away, just changes as your child gets older. I feel sad that Jude will never have his friends come to knock for him so they can wander down to the park, or that he will never go out to parties, have drinks at the pub, etc. When your young child is diagnosed with something, you are in such an emotional fog, it’s hard to see what is really going on. You have the newborn induced exhaustion, recovery from birth (both physically and mentally) and just the whole assertion of having a baby to look after, let alone a disabled one. It’s crazy! No wonder I feel like a bit of a loon sometimes. I don’t remember ONCE any of the doctors, physiotherapists, speech therapists, OT’s, paediatricians, Orthotists, etc. asking if I was ok. Really asking, not just a passing “how are you?” conversation. This harps back to my previous post on mental health but I think it has taken me these ten years to recognise what I have managed to get through, the severity of everything and the fact I haven’t had time to get over the mourning phase.


But rather than feel jealous, I think I’m going to try and feel more pride about our situation. Yes, Jude is the biggest pain in the butt at times and I could literally give him away so I can have a more calm, “normal” (!) life. But for those brief fleeting moments of lovely conversation that we have, or jokes that he cracks, or just the way he laughs til tears run down his face when he goes to bed (he always finds something funny at bedtime), I should be proud of myself that I have survived these past ten years with the added bonus of his unique aura of confusion and massive lessons to learn. How did I do that? I have no idea but I think it’s time to stop whinging and get on with feeling proud of our achievements.

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