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Maia the Goddess of Spring is 25

Maia has a rare chromosome disorder called Emanuel Syndrome.
She was supposed to have a huge party on March 21, 2020. 
The whole community was coming to celebrate her important milestone. 
We were going to share with the world how Maia had beaten the odds and 
lived a million more moments than she was given when she was diagnosed in 1995. 

Your poor messed up child, Mrs. St-Pierre. 
Take her home and love her, because she's not going to see five. 

That's what I heard.

Then just before her 25th birthday, COVID-19 happened. 
The world shut down. We were not able to celebrate. 
The hall was cancelled. The cake and balloons were cancelled. 
As she lives in a group home with other vulnerable people, 
our in-person touching visits have been cancelled.

I haven't held my daughter since.

But you know what? Screw that. 

My daughter is TWENTY-FIVE 
and that is a party that can outlast this pandemic. 

A few weeks ago, I saw this article about a girl with Trisomy 18 who has just celebrated her 40th birthday. 
Trisomy 18 has a worse life-expectancy than Maia's disorder, Emanuel syndrome.

That's outstanding.

The expectations I had for my daughter's life-limiting diagnosis have disappeared. 
I know of people who are 50 with her diagnosis. 
That's right, FIFTY. That is how old I will be next month.

So, when I left her today - from my safe 6' away, a mask covering my face, I smiled. 
She's going to be safe and when this pandemic is over, we are going to do some celebrating.

What else will we be celebrating?

Hopefully the release of our book - her book really, because it's about her, and me. 
And lots of other people who are like us, too.
 I am having it reviewed by people I trust so that it will be enough. It's important to me. 
I am almost done the proposal so we can begin looking for a publisher. 
I have written this with two amazing women. 
It's about Maia, everything that goes along with raising a child with a rare disorder, 
mental health, and so much more.

Guess what I am calling it? 

Raising the Goddess of Spring.

This blog is going to be the start of my sharing Maia more openly with the world, 
bits of our history, good things, bad things, crappy feelings and amazingly good stuff.  
We will be talking about the book, the topics in it, and hopefully 
contributing to the rare chromosome disorder community 
which is an amazing circle of strong advocates.
Why? Because our kids are doing more, living longer, and surprising us all.

Because of Maia's life, we have so much more knowledge. 
We have a syndrome with a name and a website and lots and lots of new friends.

Will you join us as we start the celebration?

- Stephanie


Want to know more about me? Follow me on Twitter, Facebook, or Instagram


 It may not happen right away, but your child, regardless of their diagnosis, 
will become the best part of who you are. - Stephanie 



Comments

  1. TamThivierge68July 16, 2020 at 4:00 AM

    That was beautiful Stephanie! I wish all the best to you, and Maia, the Goddess of Spring ;)

    ReplyDelete

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