This is one of those posts that is a little tough to write. Not so much because it is complicated but because there are a lot of conflicting emotions and opinions that are running through my mind as I try to put the words on paper.
It starts with the simple fact that Ayden Jane is doing great. Because of that fact there are parents who want to know our 'secret'. There are parents who have told me, "be thankful things are good now but just wait." I have had her genetic testing questioned.... These and more like them are easy to answer. Our secret? I am doing everything I can to tell people what we are doing with Ayden Jane and I am happy to do so. More and more is being learned all the time and I am hoping and praying for the kids younger than her - that they will do even better. Be thankful and 'just wait'? I am always thankful that Ayden Jane is a part of our lives and the older she gets the less concerned I am about 'just wait'. (btw, that one did get under my skin for a long while. What a cruel thing to say to a parent) Her genetic testing? Haha... yep, and thanks for the compliment.
The only comment that I get that still REALLY bothers me is, "don't give parents of new diagnosis false hope." At first I worried that maybe they knew something I didn't. That maybe I was somehow lying or setting these new parents up for more heartache. That I was doing something wrong. I mean, for the first year or so after diagnosis I was reading and learning on my own and making decisions on supplements and diet by how Ayden Jane responded. It just made so much sense and AJ was thriving, but in reality I was 'making it up as I went'. What if I was wrong?
I decided after a while that some of the confusion was in the definition of hope. I would say Ayden Jane offers wonderful hope. She is not a guarantee, but definitely hope.
For those who have been blessed to never experience giving birth to a child who was diagnosed with a genetic syndrome, let me explain what happens at diagnosis. A doctor calls you or brings you in for an appointment and explains to you that your beautiful child - the one you carried for 9 months, have dreamed about what talents they will have, who they will look like, whether they will be shy or outgoing... is missing some genetics. Then he/she begins to describe who and what your child will become, generally in terms of all the ways your precious gift will be limited. As a parent you simultaneously have all your dreams thrown out and replaced with a fear like you have never known.
We received the call. We sat in the office and heard all that the textbooks say. I took to the internet and read so many things (google at it's worst). What I remember most about those first weeks was looking at my 8 month old and trying to make sense of it all. I wanted to find someone, somewhere that could show me there was even a chance that it would all be okay. Back in that day I found a yahoo group of parents who did not accept that there was nothing to do but lock up and hang on. I read and learned and slowly dared to hope.
So I write about and share our crazy life with Ayden Jane and all that we have done because I truly believe Ayden Jane offers true hope. Just like with the birth of any child, there are no guarantees that Johnny is going to grow up to be president but as parents we are free to imagine he might. What the diagnosis of Prader Willi Syndrome tries to take away, Ayden Jane and the growing host of other children with PWS that are defying the text books are giving back. - Hope.
There will be hard days, you will learn things you never wanted to, you will find a new family you never asked for, your heart will burst with pride as your child learns hard fought skills - these are the guarantees. So hang on to the hope of new research, amazing families with happy, incredible kids and allow yourself to dream big for your child. I look forward to hearing about the amazing lives they will live and the joy they will bring.