Just because I know it, doesn’t mean I want to…

she is in the room I can’t really describe how it felt when Lil Z was first diagnosed, at around 6 months old, with global developmental delay. We’d known there was something “wrong” for a while, but everyone told us not to compare Lil Z with Vegemite, who had hit all her milestones ahead of schedule. Babies develop at their own speed, true enough, but a parent’s instincts are usually right. And although neither of us really put a voice to our instincts, they were telling us that something was wrong. She wasn’t smiling much. She wasn’t making eye contact much. She was struggling to hold her head up. And she was miserable so much of the time – she would cry for hours on end and nothing would comfort her.

Still, I was thinking that her development was just a bit delayed – something that perhaps a bit of physio would sort out. So when the paediatrician starting throwing out phrases like “global delay” and “cerebral palsy” I was stunned. I hated that paediatrician, and even now hold a grudge against him for a lot of things, but one thing he said hurt horribly at the time, but was the right thing to say. He told us that we needed to come to terms with the fact that Lil Z was going to be developmentally delayed throughout her life, and that she was not going to grow out of it.

It was the right thing to say, because once we started to tell people about the diagnosis, there were lots of well-meaning suggestions that she would grow out of it. But she hasn’t. And she won’t.

Shortly after that diagnosis at 6 months, Lil Z had her first brain MRI. I will never forget our visit to the paediatrician to learn the results. Lil Z was miserable and was screaming before we even entered the room. I was cuddling her, rocking her, desperately trying to get her to stop crying so I could hear what the doctor was saying. But as usual with Lil Z at that age, nothing worked and she continued to scream. I could only hear bits of what the doctor was telling QB, misunderstood what he was saying, and started to panic when I thought he was saying she had a degenerative brain condition. Hysteria was rising in me, Lil Z was screaming – even 2 1/2 years later, I can remember exactly how terrifying that felt. The doctor clarified that her condition wasn’t degenerative, but I struggled to understand what he was saying was the problem. QB asked to see the report and the doctor refused, saying “you wouldn’t understand it”.  In the end, I left, not sure what the MRI had shown or what it meant. I went home and Googled “myelination” and “white matter” (I didn’t even know the brain had white, as well as grey, matter).

Life took over at that point, with Lil Z beginning to have seizures, we had a number of trips to the hospital, and became connected up with the Royal Children’s Hospital, where we found a paediatrician we much preferred to that first one. Very little attention was paid to the MRI results and I eventually more or less forgot about them. Life took over.

During that next two years, I felt like I came to terms with being the mother of a special needs child. I’ve adapted my hopes and expectations, both for Lil Z and for my own life. I’ve had frank, and sometimes heartbreaking, conversations with Vegemite about why her sister is different and will never be able to play with her like her friends’ sisters do. QB and I have taken separate holidays. I’ve discovered that exercise isn’t just to keep me from getting fat – it is also about keeping me sane and strong enough to lift a growing girl who can’t sit, stand or walk independently. I’ve started blogging – and at least part of the reason for that is to show that although life is different from how I thought it would be, different doesn’t mean bad.

I love Lil Z with all my heart and soul. I’ve read several times lately about people declaring that disabled children are a punishment from God, and I’ve wondered, quite sincerely, who these people think is being punished. I don’t see Lil Z as a punishment – she’s a constant joy in my life. Because of her, I’ve met some of the most fantastic people on the planet, I’ve been amazed at the support and kindness from friends. I look at life and people differently, judge less and try to enjoy more. (it doesn’t always work, but I do try).

Still, it sometimes seems like a huge responsibility to have a daughter as severely disabled as Lil Z. I may no longer feel like I’m 16, but nor do I feel old enough or wise enough to make the decisions I have to make on a regular basis.

QB and I joke about how driving a big van with a wheelchair lift in the back is in my future (I hate driving big cars). I check out wheelchair brands and contemplate how best to remodel the house to make it more accessible. I have an equipment wish list a mile long and regularly consider turning the guest bedroom into a sensory room.  But in my heart, I still have that flicker of hope. It is no longer that she will grow out of it, but that she’ll conquer it. She will sit. She will stand. She will walk. She will communicate. She may not do any of these things without a bit of help, or perhaps some clever equipment or technology. But she will do them, I tell myself.

This belief is what motivates me. It is what makes me take Lil Z to hydrotherapy, horseriding for the disabled, private physiotherapy, playgroup, and a combined speech and physiotherapy. (OK, the au pair takes Lil Z to more therapies than I do, but I found them and pay for them). And it is what had motivated QB and me to find an au pair who has the skills and background to do physiotherapy with Lil Z every day. There is a great deal of effort (and money) invested in helping Lil Z to work towards her mobility goals.

And one of the greatest accomplishments with Lil Z has been the fact that she now interacts more. She looks at you when you enter a room – not just glancing at you out of the corner of her eye, like she used to, but actually turning her head and giving you a good once over look. She signs “more” when she wants to bounce. She gives cuddles. And the girl will definitely let you know what she wants.

So, when we had to get an official report on Lil Z’s development, I was irritated to see that it recorded her intellectual age as “around 6 months”. I know that cognitively she isn’t at the same level as other 3 year olds, but 6 months is not giving her much credit and not really acknowledging her achievements. And I think again, deep in my heart, I see Lil Z as being an aware and understanding little girl, trapped in a body that won’t cooperate with her. And this is in line with atypical Rett Syndrome.

This is why it was hard to get the results of her latest brain MRI. Fortunately, this time Lil Z wasn’t screaming and our beloved paediatrician was happy to take the time to explain the results to me and discuss what they mean. And at the end of the day, the MRI isn’t that different from the one she had at 6 months. She has immature myelination and reduced white matter – which effectively means that message take longer to get to and from her brain. But her brain is also not as large as it should be. I’m not entirely sure what this means on a practical level, apart from the fact that she’s most likely intellectually delayed.

Now, you see, I KNOW all this. And the MRI was good because there is no sign that her condition is degenerative – her brain is just growing slower than it should. So, the results weren’t a surprise. But still. It doesn’t mean I want to hear it.

And I’m now surprised with how I feel about the results. In short, I feel heartbroken. It has made me wonder if all the progress that I think I’ve seen over the past year is really progress, or just me wanting to see progress. It makes me wonder if it is really worth it to spend all the time and effort on therapies when perhaps they won’t make any real difference. It makes me doubt that she will really be ever to walk, talk or communicate. And it makes me worry that 30 years from now, she will still be at the same level – happiest rolling on the floor and watching Sofia the First, scratching her ears when she encounters something she doesn’t like…

Of course this is all rubbish. I know that. No one knows what Lil Z will be like in 5 years, let alone 30. And after 3 years of being involved in the special needs community, I also know that we will be grateful and lucky if she is here in 30 years time – whatever her cognative ability.

And as her doctor explained, the MRI only shows what her brain looks like, not what she can and can’t do, or why it looks the way it does.

And real or imagined progress, she’s in there. She intentionally hits her sister to get attention. She prefers Peppa Pig to Handy Manny (then again, who doesn’t?). She enjoys being in the water, will do anything to get a cuddle, hasn’t made up her mind about horseriding, and loves animals.

At the end of the day, we just have to wait and find out. And assuming she can’t or won’t do something based on an imagine of her brain is to fail to encourage her to live her life to its fullest potential.

I just have to keep reminding myself of that.

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One response to “Just because I know it, doesn’t mean I want to…

  1. Judy Watson

    I’ve just said to QB – forwarding a bill – that I’d like to meet the people who think disability is a “punishment from God”. What God do they worship? Not the one I do. I said to QB I think 1 Corinthians 13 says it all, esp. the last verse “ And now these three remain: faith, hope and love. But the greatest of these is love.”

    J x

    Like

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