Battles against terminal illness, anxiety, and life!

My Legs Broke

“My legs broke, Mommy,” was his response after falling down for about the sixth time the other day.  *sigh* Just your average day over here.  The ataxia is getting the best of him lately though.  He’s been staggering backwards a lot.  The other day, as I was getting his coat on, he stumbled backwards, unable to keep balance, into the buffet’s corner in our dining room.  Much crying ensued.  Part of his tears were in pain, but the others were clearly seeded in frustration.  He knows.

Every day he watches his little sister, and he can see her physically equal to much of what he does, despite a nearly two-year age difference.  It’s only a matter of time before he starts asking questions in earnest.  Here’s to hoping I have the right answers. Please let me have the right answers!

Lately he’s been standing on his tip toes while he’s walking.  I’m not sure why, whether it’s a bad thing, or if there are any implications.  Last night he started talking out of the corner of his mouth.  He did that for an hour and then it was gone.  So many questions over here, with so few answers.  As usual, we just roll with it.  An email to the doctor will head out tomorrow.

Yesterday, we celebrated Thanksgiving.  When it came time for pie, Braden opted for chocolate silk with whip cream on top.  So yummy!  He tried in vain to use a fork to eat his pie, before finally giving up.  Without so much as a glimpse around the room, he dug his hand in there and fisted it.  It made me smile and want to cry all at the same time.  My insides twisted into a candy cane creation.  I was happy he could still enjoy it, without feeling any shame or embarrassment that he had to eat it in such a primal way.  Yet, it eeked out a primal feeling inside of me.  Such sadness, that it will only be in the company of those that surrounded us yesterday, will he be able to eat pie truly uninhibited.  I’m not sure who handed me the napkins without word, because I couldn’t take my eyes off of him.  I’m not even sure whether I thanked them.  I didn’t want to see what look they had in their eyes.  I just wanted to hold onto the happy light in my son’s  and focus on that for all it’s worth.

By the end of the day, both children were exhausted.  However, they were thrilled to drive around and look at the lights in our neighborhood.  They clapped and cheered, and all seemed to have put itself right again.  Later as I snuggled with Braden, he told me he had a secret.  “Really?  Can you tell me what it is?” I whispered.  “I love you!” he yelled.  Then began to tickle my feet!  Only this child can send you on such an emotional road trip!  Overall, we are more than thankful for getting to spend time with those we love this holiday season.  We are thankful for both of our children, for each day we get to spend as a family. 

This week is a busy one.  We have a new eye appointment for Braden, my birthday, and a company Christmas party to attend.  Enjoy your week!


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