This site is for information, support and questions for any parent of a child missing digits.

Welcome to the wonderful world of being a parent to a child born not whole, but still so very perfect. The life of a child born or with an aquired limb difference is a path that is full of ups and downs.

I am a very fortunate Mom to a son born in 2003 with bilateral symbractydactyly (his right thumb is his only complete digit). He also has clinodactyly of both pinkies. He was diagnosed while I was still pregnant, but that didn't make the journey any more easy.

Tuesday, July 13, 2010

Long time no talk! Things have been well. We've had Guy's son with us and aside from a few minor name callings, the three boys have been getting along well! What I am most excited for, is Cloe is coming on Saturday! She is Guy's daughter and I just love her. I wasn't blessed with a daughter of my own and I tell you--having Cloe in my life fills the majority of that void. ♥

I got final confirmation yesterday that Mikey is indeed in the Captial Ex parade to kick off our annual exhibition fair!! We have a meet & greet on the 21st and the parade itself is on the 22nd. Like I mentioned before, Champ kids (from War Amps) need to be six to be on the float & Mikey has been waiting patiently for this day to come!! I am so excited for him!

Last Friday, I was in awe. I met a family (the one who's mom is pregnant & found out her little guy will have a least 1 symby hand when he's born in August) and they have a very very rare familial case of brachydactyly type B (BDB) . This family is INCREDIBLE!! They've traced lineage back to at least maternal grandmother who was affected. The grandmother had 7 children 2 boys 5 girls. All 5 girls were/are affected. The 2 boys are/were not. The mother I met has a 14 year old girl affected and the most sweetest little 8 year old boy also affected. Early and multiple prenatal ultrasounds have shown the newest little boy to at least be unilaterally affected, but Mom's gut tells her it is bilaterally. This was the case with Mikey too. Docs were sure unilaterally, but I knew otherwise. I love mommy instinct.

Although language was a bit of a barrier (they are ESL with Spanish as main language), I had a great talk with this family. The daughter I noticed, was standing mostly, with her hands crossed under her arms. Now, being a 14 year old girl many years ago--I could understand that--I hope that was the case and not she was hiding. Mikey is involunvarily hiding his hands more and more often--moreso his left hand. Anyhow. The little boy ( I will call him M), whom I fell in love with, hugged me and we cried together. I see in his eyes little Mikey. M told me stories of how he hates when his family move because then he has to start all over (with the explainations, stares etc). He said that there is a girl from school this year who was particularly mean and would tease him often. He said though he has one very good friend who sticks up for him and tells the girl to leave M alone. M also said that just thinking about this little girl and what she does to him makes him cry still. My heart breaks so much for him.

M and Mikey played. They played and played. They played DSi. They played ball. They hit me with a ball more than once. They laughed. I saw M throw his head back and really laugh with my little Mikey--Mikey who has a language barrier all of his own and this little boy M would share stories and LAUGH LIKE LITTLE BOYS!!

We've never met another child/adult with Mikey's exact condition. I was so excited to meet another bilateral child & although their conditions are very different (I am so grateful that this family has answers as to why this happened--good ol' genetics) Mikey has a whole family more of people to look up to! M's mom is due on August 5th. I ask for kind thoughts & prayers that her labour and birth is uncomplicated and their new little guy is born happy, healthy & perfect! I can't wait to meet him!

After we were running so late for our equipment trial because Mikey was playing too much(!) we ran to our electronic meeting. We tried out only a few different options because we are waiting for actual appointment which will hopefully happen before Grade 1 starts. Mikey got to bring home an "Alphasmart" to trial for the summer. He's used this somewhat in class & although this tool is for more short-term usage, this will be a fun way to get him used to typing. He can use a regular keyboard, so unless his range of motion decreases I am thinking we will be able to avoid a one-handed keyboard. The tech and I also discussed iTouch and iPad, but obviously they are not very durable when it comes to children and though he'd be able to use one at home, I will not purchase him something like that until he is out of the "little boy phase"--mind you, I've just somehow managed to break the screen on my new touch cell phone so it could be that he takes after Mom and NEVER outgrows that!!

Well, time to get back to the "real world"! Talk to you soon.

(oh and suprise suprise, my surgery's been cancelled again)

1 comment:

  1. I need your thoughts...I am throwing around a new idea...I'm trying to reach outside my own circles...and I'd really like to hear what you want to say! http://tiffanyselephants.blogspot.com/2010/08/i-need-inputnew-blog.html