Struggling

My mighty warrior "Christian" is amazing.  He manages to be happy despite not being able to walk, despite missing so many days of school and even despite spending day after day in the hospital because of his bad knee.

His right knee started becoming a problem in January 2013 and here we are in the hospital again.  Again and again and he's not even walking.  It is so frustrating.  I sound selfish but the fact is that living with a severe bleeding disorder with an inhibitor is extremely difficult on the entire family. 

You try to keep a stiff upper lip and manage to tell people "It's okay, he's a tough boy, we are okay, we do what we have to do," etc. etc.  But honestly, I am exhausted.  Exhausted to the point that I don't know if I want to scream or cry or just crawl under the covers. 

One of the most trying parts of Christian's condition is that his treatment is being managed by a team out of state and getting that team to talk to our in state team and actively get on the same page is difficult.  They work well together, but right now we are running circles and always treating a bleed in a crisis management mode.  We need more and I think this hospitalization has opened the eyes of some of the clinicians working with us.  Finally.

With my oldest son hemophilia was a breeze.  I always wondered what the fuss was about.  I didn't understand target joints, pain and why some of the younger generation needed wheelchairs and walkers. 

 

For everything my "Lance" did not go through Christian is experiencing ten fold. 

I would love to see him run but walking on both legs without a walker would be amazing.

 

To see him walk up and down the stairs on his own instead of scooting on his bottom from step to step would be a victory.

 

And to watch him walking on his own without the stares a wheelchair brings would make my heart burst with joy and gratitude.

 

The time will come. 

 

I have hope and I'm not giving up.  I'm his Mom and I will do anything and everything possible to help him get to a better place!  I just have to look into his eyes, snuggle up with him at night and feel his breath on my face to remember that the pain will pass and the moments of joy and happiness we have far outweigh the painful moments of living with hemophilia.