Friday, February 27, 2015

Happy 5th Birthday to Matthew!

Our sweet, tenacious, unique, opinionated, fun-loving Matthew turned 5!!

He loves...

-his bicycle
-dogs, especially Padme
-parties (dancing, yelling, snacking)
-squeeze hugs
-whatever Jackson is doing
-his shopping cart
-playing outside
-cereal (any carb really) and
-Mickey Mouse.

Happy birthday, sweet boy!

Tuesday, February 24, 2015


Several years ago, when Alyssa was in kindergarten, I took her to a friend's birthday party at a skating rink.  I remember this vividly because (a) I hadn't skated in about 20 years at that time so it was a bit rough and (b) I cried-- big tears, in public, around classmates' mothers-- because I was struck by the thought that Matthew might never skate.  At the time, he was almost 2 and not standing or walking independently.  I couldn't fathom him ever being able to experience something so typical. 

On Sunday, almost 3 years later, Matthew skated.  Though he needed a bit of assistance, he skated lap after lap, singing as loud as he could to whatever song was on the PA.  I loved it, but he loved it more.  

He threw a hissy fit of monumental proportions because he didn't want to stop when it was time to go.  Annoying but totally overshadowed by the fact that this boy-- my sweet Matthew-- can skate!!

Sunday, February 22, 2015

Let It Go

30% of children with rare disease will not live to see their 5th birthday. -Source:  Global Genes Project

That statistic has haunted me since the day we learned of Matthew's diagnosis.  Since then, there have been too many days and nights I was scared he would fall on the wrong side of that statistic. 

On Friday, I will be letting it go because our sweet, tenacious, unique, opinionated, fun-loving Matthew will be 5!  It is a day I wasn't sure he'd ever see.  Friday, we plan to celebrate it like the awesome miracle that it-- he-- is! 

Sunday, February 8, 2015

Overnight Success- Ha!

I know there is no such thing as an 'overnight success', but we have often referred to Matthew's 'switch'.  One day, Matthew struggles with something, and the next, and the next, and the next, and so on.  But then, on a random day, he can do whatever it was, like he's been doing it forever.  It happened with crawling, walking, climbing up on the bed, talking, and now-- potty independence.  Not yet perfected, but the 'switch' was flipped.