Saturday, April 26, 2014

life is somewhat routine

It has been 72 days since our world was turned upside down.  Just a week since I had my last emotional breakdown.  A day since I worried about Deacon and him saying his foot hurts.

Life is getting back to the normal we knew before.  Everyone has somewhere to be after school.  The mom taxi is back in full swing.  My heart is still heavy with concern for Deacon BUT I am learning how to handle it better.  Breaking down every time anyone asks me about my boy is not a way that I can live.  So many people love him and us and so many people tell me they are praying for him.  I have to see the positive in that instead of the reason that they are speaking out to us.    This week I have done that.

Deacon is doing great. He is rocking the tball field and made it on base this week, 3 times!  He hasn't scored yet but he will.  Aquatic therapy is his new pt and he is doing well in his regular physical therapy.  Overall, he is strong and continues to do new things.

The other kids are doing great as well. Grace turned 7 and is listening to her new iPod as we speak. She likes to sing and hum so it is fun to hear her kinda know the songs and guess at the words.


Cannon is in baseball heaven right now. He loves the game and is off to practice several times a week.  He would play every day if we let him.


Kaylee is doing well and is finishing up her last year at the middle school.  Friends and music are completing her time and she is becoming such a beautiful young lady.


I am so thankful that God gives us people who support us and lift us up when we so badly need it. I would be a pile on the floor with out a few of my very best friends helping me through this time.  So as we continue to live, I will try to be positive and see the beauty in our situation.

Friday, April 11, 2014

every day

Every day I think about Deacon and what his future holds.  Every day I read something about Duchenne Muscular Dystrophy. Every day I cry or am on the verge of tears.  Every day I ask God why.

My husband said it best a few days ago while we were watching another boys story with DMD.  He said that we watch someone else's story be told. We watch them suffer and grieve. We pray for them always and in some cases help support them.  But now it is us. This is our reality. All of the stories that we are reading about little boys with DMD.  That is our story.  Our son will die.  We will be the parents trying to figure out how to go on without one of their children.  Trying to teach our other children how to be brave in a tragic situation and to let God's love shine through us in our darkest hours.  This is hard.  

Every day I hug this sweet little boy. Every day I thank God for him. Every day I am reminded that we don't have many more days.


   

Thursday, April 3, 2014

the call came

Finally on Tuesday, the call came in that the neurologist had received the DNA test results.  We were able to get in on Wednesday morning.  48 days after hearing the words "I think Deacon needs to be tested for Muscular Dystrophy" the results did confirm that our sweet boy has Duchennes Muscular Dystrophy.  His is a deletion of Exome 19.

Right now he is too young for any clinical trials and there aren't any clinical trials being processed for his deletion.  So we wait. We wait for him to turn 7. We wait for more trials to be developed and started.

We do have several things that we can do and are doing for him now to keep him strong.  That is the goal is to keep him active and walking and as strong as he can be.  Stretching, night splints, physical therapy and medicine will help us do this.  He is such an active little guy that he will be his own physical therapy for a while.  Climbing on the play equipment at school is a great way for him to keep his muscles going.

This will continue to be a place for me to journal and to get my emotions out.  All we can do right now is pray that a cure will be found before it is too late for Deacon.  We appreciate your prayers.

                                                                         My Boys