Thursday, May 16, 2013

Drops of Sunshine

The last three months have been drama filled. We have gone from being told that Mighty Z has Hirschsprung’s Disease and will need a colostomy bag, to begging the surgeon to do a pull- though (where they cut out the dead part of the colon and reattach healthy part of the colon), then to being told that Mighty Z doesn’t have Hirschsprung’s Disease but that she may have Mitochondrial Dysfunction. To say it has been a rollercoaster of ups and downs is an understatement.
Just when you think life is looking a little grim and waves of anxiety are washing over you, someone drops a bit of sunshine into your life.
When Mighty Z was in third grade, she had to do a fine arts project. When I asked her “What do you want to do?”, she grabbed her piano bag and pulled out a piece of music called “Teddy Bear, Teddy Bear” and proudly proclaimed that she wanted to do her project on the person who wrote “Teddy Bear, Teddy Bear.”
With a click of a few keys Mighty Z and I found the composer, Timothy Brown. I decided to send him a quick email in hopes that he would respond so that we could print out the email and attach it to Mighty Z’s project board.
Not only Did Mr. Brown respond, he was flattered that Mighty Z would choose him to write about. I wrote back and explained that Mighty Z had CCHS (Congenital Central Hypoventilation Syndrome) and was on life support machines 12 hours a day. His response was “Where do you live? I would love to come to the Fine Arts Fair.” I was floored that he would want to come to a little 3rd grade Fair, but of course I sent an email saying we were in Dallas and guess what?? He lived not too far from Dallas!
Mr. Brown graciously came to the Fine Arts Fair; he also played for the school and made Mighty Z feel so special. I can’t tell you the tears that ran down my face when Mighty Z slipped her little hand into Mr. Brown’s hand as they walked together to see her project.
As the years have gone by, I have sent Mr. Brown Mighty Z’s National Piano Guild Audition results and he has encouraged her on so many levels to continue playing her piano and never to give up.
A couple of months ago Mr. Brown sent me an email asking for Mighty Z’s piano teacher’s name and phone number, and saying that he had a surprise for our sweet Mighty Z.  Of course I sent him the information and honestly forgot about it because of all the medical stuff we have had to endure lately.

I dropped Mighty Z off at piano and Lala and I wasted time waiting for Mighty Z’s lesson to end. Mighty Z came skipping to the car with her piano teacher close at hand. Mr. Brown had composed a song for Mighty Z called “Just Believe”!  Can you believe he would do that for Mighty Z? I was shocked into silence that such a great man as Mr. Brown would sit at his piano and write a song for my sweet baby. In some ways I am still overwhelmed that he would do this, and Mighty Z?  Well, she is on cloud nine and cannot wait to learn how to play it. Here is a video of Mr. Brown’s sweet wife playing Mighty Z’s song. Personally I think it is beautiful, and the name of the song couldn’t be more perfect for our amazing Mighty Z.

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Monday, May 13, 2013

A roller coaster of a ride


I have a beautiful friend who always says that dealing with CCHS (Congenital Central Hypoventilation Syndrome) is a roller coaster of a ride.  That’s my opinion also, and it’s 100% true.  Life with Mighty Z has been a roller coaster on so many levels.

Just like a roller coaster car climbing the rails does, Mighty Z has brought me so many butterflies in my stomach: butterflies of proving the doctors wrong, butterflies of the inchstones that Mighty Z has met with her gorgeous smile on her face, and of course the butterflies I still get every time she opens those amazing eyes in the morning ready to seize the day.

Just like you feel being on the very tippy top of a roller coaster, able to see the whole city, so I have felt many times that we are at the pinnacle of this disease and can see how far we’ve come, how hard we have worked just to breathe.  I am in awe of not just Mighty Z, but also of the family God has given to us to help us achieve these goals.

Yes, and then come the scary dips and it doesn’t matter how many times you have ridden that roller coaster, those dips still take your breath away.  The same is true with CCHS.  No matter how long we have walked this road, those dips, dives, and sharp turns always jar us. However, then we start climbing right back up and hit the top once again.

When the ride is over, instead of getting off and lamenting about how fun and yet scary the ride was, I get to ride again and again. Yes, CCHS is a roller coaster of a ride; however, it is the best ride in the world.

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