Thursday, December 18, 2014

The Carpool Line

I never thought I would be excited to wait in line to drop off and pick my son up from school.

Yes, the carpool line….I am thrilled to be in the carpool line!

A year ago my son was in the hospital and has been wheelchair bound until recently.

My "Christian" has been fighting like I've never seen a little boy fight to walk without needing his wheelchair.  Despite the damage to his knee and the hitch in his gait, nothing is holding him back from keeping up with his friends.

He even told his dad that he was ready to sell his wheelchair ... I don't think we are quite ready to do that :)

My son can walk into his school on his own two feet.

He is walking up and down the halls of his school.

He is eye level with his friends.

I don't need anything for Christmas this year…..I've already received the greatest gift ever…to be a mom in the carpool line once again.
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Monday, December 1, 2014

Zero is my favorite number

Today is huge!  As of this moment, my "Christian" has severe hemophilia!

Why the excitement?  His inhibitor (the bug that eats up the clotting factor he needs) is registering ZERO!  For the moment, it is gone.  No inhibitor!

This inhibitor battle began when "Christian" was 11 months old and he turns 9 in January.

In the inhibitor community we know that it is not always best to concentrate on the numbers and levels associated with the inhibitor.  But you know, even if it's only for a short season at zero, we are going to celebrate and not let the fear of the inhibitor returning steal our joy.

No joy lost here! 

No fear here!

I know that living in fear is debilitating. There are people in our community that have only known inhibitors for years upon years and they don't know if they will ever be inhibitor free.  My heart breaks for every person that has been on this path despite the length of time.

It is not easy.  But having hope for zero and having hope that treatment will continue to improve is sometimes all we have.

Today is a great day. 

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