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I talk about Autism, a lot

Kate May Have Autism But Don't Worry Because Kate Has Grace

6/3/2013

7 Comments

 
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If you follow us on Facebook (and I hope you do) then you will have no doubt noticed that Grace surprised us all and sailed through Kindergarten Orientation Day. I didn't sleep the night previous because I have seen how her anxiety gets in her way sometimes.  She struggles to particpate in activities and she spends more time worrying about her sister than any child should. I don't have to tell the regular readers of this blog how unbelievable proud we are of Grace on any given day.  I do however, have to tell her that.  So, I made her a little slideshow below. 

First though, I wanted to give you some history on our Grace.  I find this, in many ways, harder to talk about than Kate's autism.  Grace was born on April 12, 2008, three weeks early at a whopping 9.8lbs.  When the nurse placed her in my arms she delicately announced to me that Grace had been born with extra fingers, a condition called polydactly.  (This is NOT the hard part, in fact we loved those little fingers.)  I was shocked and confused but I still had this amazing baby in my arms.  It would be fine.  At least I had the luxury of her condition being described to me by a nurse in those first few moments.  Alex was left to figure out for himself what was going on.  It kind of makes me giggle when I imagine how many times he must have counted and re-counted her fingers in those first few minutes of looking at her.  Funnier still was days later when my friend K was holding her and the little protective mitt slipped off (we hid her condition at first).  K thought she had broken Grace's finger as her extra digits had no bones and hung from her hand at an awkward angle.  K even laughs at this now.  For the very curious of you I have posted a couple of photos.  Grace had those little fingers removed with surgery at ten months old.  They couldn't simply be tied off because there were nerves in them. They had to be removed surgically and the nerves were tied off back inside her hands.  She has tiny scars.  We had her hands cast before the surgery so we could show her when she was older.  I will admit I was originally very upset at this turn of events, especially when her discharge papers from the hospital called her disfigured but I have since learned that it was merely a cosmetic thing and who cares about the cosmetic things.  Her surgeon told us she could have been the fastest piano player in the west if we had of decided to keep them. :)

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Her favourite of the two extra digits. Yes, she had a favourite.
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The casting we had done so we could show her her cool extra fingers.
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Grace at the hospital the day of her surgery to remove the fingers.
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The next thing we went through happened just before Kate was born.  It is the hard part.  I will say this quick.  Grace has had many bouts with pneumonia due to her asthma and during one of these x-rays the doctor saw Grace's heart was enlarged. I googled it.  Then I cried.  Don't google it.  Google doesn't provide accurate information. They also found a heart murmur.  We set up an echo which was done days after Kate was born (in fact it was done the same day Kate received a positive test for hypothroidism (which later turned out to be a false postiive).  Anyway, thankfully the echo showed no major issues and we monitor Grace through the help of her paediatrician.  She tires much more quickly than most kids her age and her asthma often slows her down but otherwise she is a typical kid.  I still worry.  I constantly worry.  Do we ever get to stop worrying?  I told you I don't like to talk about this.

For Grace: 

7 Comments
Heather Gillis
6/3/2013 09:39:38 pm

Love this...& no I don't think we ever stop worrying!

Reply
Shanell
6/7/2013 06:45:17 am

Don't I know it, Heather.

Reply
Sue Clarke(Kleyn-Molekamp)
6/4/2013 03:52:41 am

Firstly, just so you know who I am, I have known Alex since kindergarten when he and my son, Antony, first met. That is a long time ago !! ...And, no, a Mother never stops worrying .. a part of life, I guess.
Your girls are both so beautiful and you are doing such an amazing job with them. I just had to write, even though you do not know me.
Thinking of you. xox
Sue

Reply
Shanell
6/7/2013 06:46:52 am

Hi Sue,
Thanks for the lovely comment. I love when people take a second to write. It kind of validates what we are doing. The idea, besides being therapeutic, is to spread awareness and hopefully encourage acceptance.

I really appreciate your thoughts and I will tell Alex tonight. :)

Reply
Karen
6/4/2013 09:53:48 am

I love the slide show!! So sweet!!

Reply
Cathy
1/14/2014 05:31:45 pm

Hi, i feel like i had to leave a comment after seeing your video for Grace made me cry. I have just found your blog today and have read a few of your stories of your amazing little girls. They are beautiful and they are so lucky to have a loving mother like you to take care of them, lead them and make sure they develop into wonderful human beings. Your love shows through immensely throughout the video, and it reminds us to say 'thank you' to our loved ones, and appreciate them for who they are everyday.
i hope the best for you and your family. Life often throw us difficulties to test our virtues but we often come out of it stronger, more compassionate and more loving.
i look forward to reading more of your blog entries.
Cathy

Reply
Graziella
1/15/2014 10:13:38 am

Like many others, I've found your blog today (your 'Dear Daddy' letter has reached us here in Brazil, too!), and I just can't stop reading it. Would you tell Grace that we are all very proud of her? I know I'm just some random stranger on the internet, but I know it's not easy being a big sister, and I wish I could have been as awesome as she is when my little sister and I were growing up. That's it... I just wanted to say that Grace rocks! :)

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