By Sue

Holly

I suppose I should be more devastated than I am, but for so long my husband Chris and myself have known that all was not right with our precious little girl. For us, diagnosis is a relief more than anything else. We finally know we are not crazy, that there is a problem and now we can move on and use this information to help Holly become the best she can be.

Since birth Holly has been plagued with health issues: cardiac abnormalities, feeding difficulties, global developmental delay, low immunity, poor growth, reflux, eye problems, food intolerances, behavioural issues – and the list goes on!

Like most of you guys with KS kids, I thought Holly was just having ‘a bad run of things’ and had convinced myself that she’d be ok given a bit of time. I watched with envy all the other mothers in my mother’s group and their seemingly ‘advanced children’ and listened with hope as they reassured me she was just a ‘late bloomer’ when it came to all those milestones. I also watched the looks on their faces as time went by and Holly didn’t ‘bloom’ but got further and further behind. They were looks of pity and confusion; people don’t know what to say when they don’t understand something, so instead they just stare. A nurse I spoke to one day about it said the other mothers would never say it out loud but privately they were probably thinking: ‘thank God it’s not my child’.

I got to the stage where I’d come home after a mother’s group get together and bawl my eyes out for hours, sobbing to my mum and Chris about how far behind the other kids Holly was. I loathed going to playgroup and hearing about all the kids’ achievements while my child struggled to do the simplest of things, basic functions that were meant to be innate and Holly had no idea. I convinced myself that it must be my fault because I was her mother and I should be able to teach her these things, but I couldn’t, I was trying but it wasn’t working. I started to make excuses why we couldn’t attend this play date or that birthday party, anything so I didn’t have to see the pitying looks.

When our paediatrician first suggested Holly might be intellectually disabled I dismissed him as an idiot and insisted on a second opinion. How dare he say that about my beautiful child, what did he know, he didn’t even have children of his own! The second opinion we received was much more optimistic. This doctor, an older more experienced paediatrician, was of the opinion that if Holly was 12 to 18 months behind the other kids her age, and that gap didn’t widen, then would it really make a difference when she got older? He raised his eyebrows at the other opinion and said ‘who are we to gauge a child’s full potential?’ We were satisfied with this viewpoint (of course we were, it was what we wanted to hear!!!) – so Holly wasn’t a genius, so what?

We decided to sit back and adopt a ‘wait and see’ attitude. In the meantime, just in case by some strange stretch of the imagination we were wrong, Chris and I started to access various therapies to help Holly catch up to her peers: occupational therapy to improve her gross and fine motor skills, physio to improve her balance and coordination, speech pathology to encourage better communication, and other things too numerous to list. We were convinced Holly would eventually close that gap; prove the sceptics wrong and all would be resolved.

Denial is a wonderfully useful tool for us as parents, it allows us to switch off and preserve our own sanity. It is however very dangerous when the future of a child is at stake. I am thankful now that we did access early intervention therapies because I am certain Holly would have slipped further behind had we stuck our heads in the sand and waited. So while I say we were in denial, secretly we knew Holly wasn’t like all the other kids we saw and that she needed help. It has been a long and tiring road so far with our little ‘muffin’ as we call her, and Chris and I no longer take for granted what many other parents may. Every small achievement is celebrated as though it were an Olympic medal effort. I marvel at Holly’s younger brothers and how capable they are in comparison; I believe their presence helps her to expand her knowledge and the bond she shares with them is amazing. She copies them, Zach especially and it’s good because it teaches her fundamental things she may have missed out on earlier in her development.

Towards the end of the year Holly will have to start her transition from kindergarten to school and this is a nervous time for us as Chris and I aren’t sure she’ll be ready in time. We are in the process of toilet training her; there have been other more important health and development issues that have taken precedence over toileting so we are way behind in that respect, but we’ll just take things one day at a time.

I think that’s all we can do as parents of KS kids, take things a day at a time. Yes it’s hard, yes it’s exhausting – but we carry on because we have to. We are the doorways through which our children will find their way to a better life.

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