Tyler update, make a wish, and more!

"Tyler is doing well today!"

That has become my standard answer when I am asked how he is doing.  He is.  He is sleeping better and the seizures seem to be under control.  He started high school and seems to enjoy it.  He has enjoyed his summer.  He is back to tormenting his little bothers- oops, I mean brothers.

Tyler has come out of his surgery, which seems to be successful, with flying colors.  If it wasn't for a follow-up visit, we would be carefree and worry free.

It has taken me a while to write this post because I am doing well at suppressing things I don't want to deal with.  At a follow up x-ray, the doctor saw an abnormality in Tyler's abdomen.  We were sent to a specialist and here are the results.

*  Tyler's abdominal organs are rising into his chest and adhering to his heart and lungs.

*  They have done this before and the surgery to correct it almost killed him.

* The specialist recommends we not put him through the surgery again as his chance of surviving the surgery is slim.

What does this mean for our family?

Basically, we are grateful and cherish the time we have with Tyler.  The doctors say it is hard to estimate future life expectancy.  He could go into a crisis tomorrow or he could live this way for 20 years.

I could climb back into the blanket fort I spent the first few months of the year in or I can choose to live.  The bottom line is no one is guaranteed tomorrow.  There were times I didn't think Tyler would live to see the age of 5.  Next month, he turns 16.  Tyler is the kiddo that made me a mom.  He is amazing.  Autism and Down Syndrome are just one part of him.   It doesn't define who he is.  Tyler is a fighter.  Chances are he will outlive me.  So, we choose to celebrate.  We celebrate who he is and his place in our family.  (Honestly, I try not to dwell on the future too much.  I could break down completely but I choose to suppress.)

We were referred to make a wish.  Tyler has been granted a wish and we are currently waiting to hear about details.

SOOOO... That is our reality.  We try to update people but we missed a few this go round.  Sorry!  :)  Consider this our update.

On another note,  Tyler is participating in FOCUS Climb for kids.  If you would like to make a donation in his honor and help him reach his goal, visit his page here....

http://www.focusclimbsforkids.myevent.com/participant/215002