Dancing in the Kitchen

Dear Andrew,

As I sit by your bedside from your now 7th surgery in the last almost 4 years. My heart just aches as I see you lay in that bed with so many cords and tubes and especially seeing your epidural. This surgery compared to all there rest you have had is going to be the hardest one yet.  Right now you are wide awake and asking such silly questions and watching t.v.  So although it's after 11, I'm writing a bit on the blog to pass the time. You will be on pretty strong pain medications for the next few days as you have to lay flat so you don't feel too much now.  But in a few days when they take your epidural out, it will be much different. It's overwhelming to know the long long road ahead of you as "we" recover.  The last little while you have truly become my little hero!  I will be honest the last few weeks as your surgery has gotten closer and closer I've been a ball of emotions. Wondering if this is truly the right thing for you and anxious about how you will respond to therapy 5 days a week for the next six month and then 2-4 times a week for the next few years. It will be hard, but it will be worth it. You've been doing so well with your walking and progress with school and potty training. It will be difficult to have to re-learn everything.

Your dad and I have felt many confirmations this was the next step we should take with your medical care and now is the optimal time in your life to have this procedure done. We'd hoped that this surgery will give you more abilities and prevent some of the negative effects that spasticity can have as you get older. When we are dealing with cutting nerves in the spine and we wanted to make sure you got the best care. This is the reason we came to St. Louis and work with Dr. Park and his team. Dr. Park has pioneered this type of surgery for kids with cerebral palsy and people from all around the world come to see this wonderful doctor.

Yesterday as we met with him, he was so positive with the outcome of this surgery for you. We almost couldn't believe the things he was saying. Because you are so strong and doing so well, he told us that you'd have a quicker recovery than most and that you'd eventually be able to do some amazing things that wouldn't be possible with spasticity like running, jumping, playing sports like swimming, soccer and karate. Those things have never really been a possibility. It's almost hard to believe that they will be apart of your future. This news is overwhelmingly exciting to both your dad and I.

My favorite memory from this last week was when we were dancing in the kitchen. One night after dinner, I put some music on to dance to as we were cleaning up and doing dishes. You came over to me and yanked on my hand and asked me to put on your favorite song "Brave". Of course when that song comes on you always ask me to dance...which melts my heart. So this night we danced together in the kitchen and I couldn't help think of the words and this surgery and the tears just started to come. You of course were giggling and laughing as we spun around and danced in the kitchen not completely understanding what lies ahead for you. I soaked in the moment and enjoyed this special one on one time. You will have to be brave and be strong then next few years....but there is a reason you are here and you have overcome so much in your little life. With your determined little personality, you can do hard things and I have no doubt that you will continue to exceed doctors expectations.

You dad and I love you so much! We are grateful for the shining example you are in our family.

Love your,
Mommy