A Funky Season

I admit, I enjoy Facebook.  I'm more of a "lurker" than a "poster" but I do like keeping up with folks and seeing pictures of my friends children and grandchildren.  There was a picture that took my breath away yesterday.  One of our friends, who also has a 7 year old with hemophilia and inhibitors, posted his basketball picture.  He was so handsome and looked so happy.  He was down on one knee with the ball in the other hand with a big smile for the camera and I immediately thought, "My Christian can't do that."  Christian has an awful target right knee and honestly, it has not been good since early January.  He has one struggle after the other and is trying to heal from a new bleed in that knee that started on July 1st.  There are so many things that my son can do, it's just that sometimes I focus too much on what he can't do. 

I've had people tell me that I am positive and encouraging through our hemophilia/inhibitor journey, but sometimes I just don't feel like I am.

I feel selfish because I feel "trapped" at home when a bleed is happening….but I am blessed beyond measure because I can work from home.

• I get tired of having to haul the wheelchair in and out of the car and walk Christian to class on those days...but I am fortunate to have a wheelchair that is easy to use and the flexibility for my husband and I to be able to take him to school everyday.

• I hate that Christian must wear a brace to help alleviate his ankle issues (and look different)...but I am so thankful that my insurance allows for us to have a special orthotic created for him.

• I especially hate the fact that we must travel out of state for direction on Christian's treatment...and again, I am fortunate to have the resources to be able to get on a plane and get where he needs to be.

• I am sad that Christian can't start Immune Tolerance due to his allergy to Factor VIII...but at least it is now down to 10 from 2,200.

I am just in a funky season of seeing the really yucky stuff.  I pride myself in always working to find the good in every situation, but when your child suffers and you just want him to keep up with his friends sometimes the white flag is raised and you have to surrender….to the fact that the journey is just more difficult than most. 

But there is always hope.  I have to keep telling myself that there is always hope.