Who Knew?

When Angie was a toddler, and very, very fragile, I tried to imagine what she would be like when she was older.  While we stayed in the hospital, I saw school-aged children and would wonder, "Will she be like them?".  Some of those children were extremely needy and others were higher-functioning, but none of them were quite like the Angie of today.  Look at her:

NEVER in all of my imaginings, did I picture this beautiful, independent, vibrant girl.  She surprises and amazes me every day.  I can't count the times daily that she says, "Mom, I can do that" or "Let me help with that".  Who knew?

During the long hours in the hospital, I wondered about a lot of things and sometimes I tried to guess about the trajectory of Angie's condition.  Would she lose her sight?  Would the seizures come back?  Will kids accept her "different" appearance?  Will her heart eventually weaken after pumping extra blood through her little body?  Will she live?

The questions have not been answered and won't be answered until later in the journey.  What I have learned is this.......I don't have to worry about it today.  What is true today is that Angie's peers DO accept her as one of them.  She has the best possible doctors caring for her and it is their job to address her long-term health. Angie herself doesn't waste a minute of her precious day worrying about the future.  She has too much to do!

Our "normal" today is mostly good days with a few tough ones thrown in to keep us humble.  Angie can go for weeks without a medical appointment and during those times we almost forget the need for them.  Then, a phone call reminds us.  I got that phone call this week from one of Angie's therapists.  She is concerned and we are too.  Angie is having a lot of falls and is not catching herself.  She has had some headaches.  The muscles in her right arm and shoulder are becoming tight from lack of use.  Her vision seems to be off.

We will start the rounds of appointments right away to investigate our concerns.  I am optimistic that serious concerns will be ruled out and I trust the doctors completely to provide Angie with the best care.  They love her too.  This is a bump in the road compared to the potholes we have overcome in the past.  There is nothing to panic about-we knew these days would come. Instead, I will stop trying to guess about the future and will focus on being present in the moment we are in.  I don't want to miss anything!