Wednesday, November 14, 2012

The Others

This morning as Grace and I waited outside the school entrance for her aide to walk her into the classroom, we chatted as usual.  The conversation was typical until it took a turn that I wasn't ready for...

Grace: "Mom, you know there are other people that have cerebral palsy."

Me: "Grace, what did you say?" (I was pretty sure I hadn't heard correctly)

Grace:  "Mom, there are other people that have cerebral palsy."

Me: "Yes, you are correct.  There are many others that have cerebral palsy."

Grace:  "Just like I have cerebral palsy."

Me:  "Yes, there are others like you that have cerebral palsy."

As you can see, I wasn't sure where to go with this conversation.  I was starting to panic.  Grace and I had talked about her condition but mainly in the context of therapies, surgeries, etc.  I was going to let her lead me to THAT conversation.  The WHAT IS GOING TO HAPPEN TO ME...the WHY ME...THAT conversation.  I was waiting until she was ready...and maybe until I was ready.

We were interrupted by Grace's aide opening the door so we weren't able to continue.

Where was Grace going with this conversation?  Had someone been talking with her about this?  What should I say?

Grace's aide says they have not talked about this (although I wouldn't mind if they had) and she hasn't heard anyone else having this type of discussion with Grace.

Then it hit me.  We had a visit yesterday to the Scottish Rite Mobility Clinic.  She saw doctors, nurses, therapists...also other children with cerebral palsy.  Did she not know?  Did she think she was the only one?  There are others.  We are not alone.

Wednesday, October 3, 2012

What Might Have Been

There is a song by Little Texas from the 90's that keeps popping in my head lately.  The title of the song is What Might Have Been.  If you listen closely to the words, they don't really apply to my situation but I often think of what might have been.

When Abe and I were thinking of starting a family we discussed the possibility of having a child with special needs and what that would look like.  We only had the conversation once because, well, it would never really happen.  And of course, we said and we meant, we would that child endlessly no matter what.

So why the questioning lately?  I really try not to go there.  It is not constructive and as the saying goes, "comparison is the thief or joy", and so are regrets.  But I have to admit I have been thinking...what if Grace could walk?  What if we didn't have to spend so much time and money on therapies and equipment?  What if our lives were typical?

I know these feelings will pass and that I will be able to focus more on the gifts and joy that Grace brings to our lives but for might have been?

Be joyful in hope, patient in affliction, and faithful in prayer.  Romans 12:12

The picture above is Grace at intensive therapy with her wonderful therapist Lissa, one of the joys in our lives.

Friday, July 6, 2012


I saw Grace last week at DisneyWorld.  Of course you did, you are thinking, she was with you the whole time.  This was Grace in the future.  Ironically enough, she was in FutureLand standing right in front of us to ride Space Mountain.  We were in the Fast Pass or "those with special needs" line.  She was in her early twenties and had long curly blond hair.  She was in a wheelchair much like Graces, only bigger.  Next to her was a young man in his twenties also.  As the Space Mountain car came to a stop for us to board, the man gently picked up the woman and placed her in the seat.  She was all smiles...just like my Grace.  I got to see her one more time as she disembarked from the car, with the man's assistance.  She was laughing and he said "See I told you it would be fun!"  I was mesmerized.  I wanted to ask her name, her diagnose, her life.  There she was Grace in her early twenties....and she was happy.