So one of my student’s asked me an innocent question today… “What’s the date Mrs. Couch?”  I thought for a minute and said, “It’s February 19th.”

And then it hit me.  One year ago today Maura was diagnosed with Juvenile Dermatomyositis.  (A word that my spell check still thinks I spell incorrectly because obviously I don’t take the time to add it to the dictionary – maybe in hopes that it really isn’t real.)

So where is she a year later?  Well, she has gone through a lot.  When it all started she looked at me and said,  “I’m scared Mommy – scared of how my body doesn’t work anymore.”  I have a now 4 year-old that knows what a PICC line is and how it works (but no longer has one 🙂 ). A four year-old that is mature enough to look at me and say, “Mommy, I don’t want to be sick anymore.  I just want to be a kid.”  For all the hardships she’s gone through this year, she is really doing quite well.  The daily medicine still masks some of our little girl and it won’t be out of our life for at least two more years, but for JDM that is a really wonderful prognosis currently.  She can run and jump and climb and one year ago, as I said here, I would’ve given anything in the world to see those things and we are grateful everyday for how much improvement we have seen.

 

What have I learned?  I’ve learned that we have the most wonderful friends, family, and healthcare providers.  The team of people that have banded together to take care of Maura this last year is full of loving, caring, amazingly brilliant people who just happen to have careers in healthcare.  We would not have made it through this past year without the support of our friends and family and a whole slew of others that we have met in the middle of this.  You all never cease to amaze me with your thoughtfulness and kindness.  (And your willingness to listen to me complain about the select few that have been less than supportive 🙁 )

A little “THHPPPTT” from our family to JDM

 

Hopefully one year from now the reflection will be similar to this and we will be another step closer to helping her get back to “being a kid.”

A kid that spent two hours making her teacher this valentine’s book.  I was almost jealous, but so proud that I couldn’t be 🙂