It’s been awhile since a Maura update, some due to the fact that I am busy, busy, busy, and some due to the fact that the 10 year-old girl inside me is slightly afraid I might jinx how well she is doing.  The medicine seems to be quieting the Dermatomyositis, with Maura regaining the ability to walk, run, jump, and (almost) climb the stairs like most almost 4-year olds.  If you saw her at the park, you’d probably just think she had a really over-protective mom that should let her do more on her own.

Back in May she was a part of a wonderful art show call Celebrate Life.  At the time, I shared the first part of the story, the part where she painted.  The actual show was incredible, heart-breaking, overwhelming, the list goes on.  I wasn’t prepared for the emotions I felt that night then and not sure if I am now either, but Maura’s the one who really had to be strong through all of this so I figure it’s time for me to man up.  I spent the night hiding behind my camera so that no one saw me crying, especially not the parents who only got to see their child’s art instead of having their child with them.  As much as I sometimes grieve for the time and experiences that Maura has lost, it was a night to remind me that we have not lost the most important thing and have so much to be thankful for.

If you know Maura, you know how stingy she is with hugs and affection (unless you are her Uncle Todd!) and how shy she can be in a crowded room, so I wasn’t sure what she would do when they called her up for her recognition, but Kim and Child Life at St. Vincent’s are magic and there she went – open arms and all.

She didn’t know until yesterday that her grandparents (all 4 of them) together had purchased her second painting as a gift for her.  Seeing her with the painting again only reaffirmed for me what a wonderful and healing process this was for her.

 

So now here we are, two months later and 9 less mg of steroids.  So far, so good and keeping all fingers and toes crossed that she continues down this path.  at this point all we can do is follow her lead…

And keep looking forward.