Thursday, 28 February 2013

Hello World Part 3

I have known Kristen Morrison and her parents for several years and I've met Gryffin along the way a few times.

Some months after Gryffin was born I was talking to his grandmother about his diagnosis and the therapies his parents had been discovering and doing with him. I was interested to find out about this stuff because my nephew has cerebral palsy and if there was something I could find out that could help him too, I was all ears. 

I was told eventually that Kristen was writing a book detailing it all and the ebook was born. I remember the day it went up for sale. I thought, 'I must get a copy and read it'. By that stage I had my own little daughter and a mother who was terminally ill and who I was visiting every day. Plus, I lived miles from everyone. Time was not plentiful!

I kept thinking I wanted to read it. It was published and turned into a real solid book you could hold in your hand, with pages and everything. I still wanted to read it! I still didn't manage to find the time. 

I heard that Gryffin was kicking goals and exceeding all expectations. I heard that Kristen was setting up a foundation to help the families of disabled children to access treatment. I played and sang at the launch dinner while people had their canapes. I kept thinking I really should read that book!

I spoke to Kristen not long after and mentioned that I still meant to buy and read her book. She said not to worry since I didn't get the gift bag that everyone at the dinner got and a copy of the book was in it. She said she'd send me one. 

When the book arrived on my doorstep I read it within about 2 days. It was fascinating. I told anyone who seemed remotely interested about it. I followed on facebook to keep up to date with what was happening with the people who were doing what the Morrissons had done. It was all so exciting. A new era for children with Down's syndrome. What these guys had done was seek out and find solutions to many of the problems that Down's syndrome presents for those with the extra copy of chromosome 21.

Over several years, being a regular commenter on facebook and interested spectator, I followed the progress of Gryffin and felt so much joy for my friends as he did so well. What I didn't realise was happening, was that my benchmark for 'normal' in terms of Down's syndrome was changing. I didn't realise that when I thought about a person with Down's syndrome I didn't think of the classic features with the difficulty communicating and moving, the low intelligence - even though I had seen first-hand so many examples of this. Gryffin was who I now thought of as representative of a person with Down's syndrome. 

In the late stages of my pregnancy with Jacinta, in fact only two days before she was born, Kristen posted on her facebook page that Gryffin had seen the psychologist in preparation for school and had been classed as being at normal levels for everything except speech (which is still being worked on). For a classic child with Down's syndrome this would be amazing! His Mum was rightly thrilled! I was so happy for her and for him and for their whole family since I knew how much effort they had put in over the years to achieve this kind of result. 

Jump forward two days and we're sitting in the special care nursery with the paediatrician saying the words "Down's syndrome". 

My immediate thought was, "we're in for a lot of work over the next five years". I told my husband we needed to call Kristen and find out what to do. He was on the phone to her within an hour or two finding out where we start. The journey had begun. 

Over the next few days, I began to realise exactly how lucky I was. Just me. Not even my husband was as lucky as I was. I alone had read Naturally Better and followed Gryffin's progress. I'd kept my husband up to date with things and I'd told him things I found interesting, but he hadn't really looked for himself so hadn't absorbed it. The first few days were hard for him as he readjusted his idea of what a diagnosis of Down's syndrome meant. 

Finding out was particularly hard for some in our family who have seen close-up the difficulties that were faced decades ago when growing up with Down syndrome. It was like a death knoll for hopes and dreams. Luckily, we had Naturally Better. Once my husband had read it, he had something to work with. He started really looking at what Gryffin can do. Our other relatives read the book too and arrived at the hospital with a new outlook and hope and determination in their eyes to do everything they could to help Jacinta thrive and achieve her potential. 

In the foreword to the book, Joseph Morrison expresses the hope that the book can save parents the worry and stress that they had to go through and make the ride easier for parents coming after them. I have to say, it has. It did. In SUCH a big way. Since the moment Jacinta was born 7 weeks ago, I have never had a thought that she will live a hard life or that she will not be able to do what she dreams or that she'll be reliant on me for the rest of her life - far from it! (Though this is not to say I imagine a cruisey time!!)

I had all sorts of counsellors talking to me about how it's ok to experience grief at the loss of the baby you thought you had etc...but this never happened.  I had a big change of plans for the next five or so years, but that's it. We're expecting big things and big things are already happening. It really seems to me that this is a new era for children with Down's syndrome. 

This is the end of my intro, I hope it lays the grounding for what I post in the future about what we do. I'll be doing catch-up posts for the next few then hopefully it'll be more up-to-date. So much has already happened!! I'm so chuffed that everyone's enjoying it so far so thanks for reading and I hope you continue to enjoy it as we go forward!


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