When you live with a chronic condition you have to be hopeful and positive. I find that if you don’t try to find the positive despite your situation, things will always look bleak. And when you have a child with a chronic condition you not only have to keep your chin up for yourself but for your child so that they will have the best attitude possible about their condition.
My “Christian” is not your typical child with hemophilia and an inhibitor. To top it off he is allergic to factor VIII, the clotting factor he needs in his body. His inhibitor levels are finally low enough to start Immune Tolerance Therapy (ITT), but because of the allergy situation, it is impossible to start ITT. He has been living with this inhibitor for over 6 years and when he has a bleed it takes much longer to heal than a person with “just” hemophilia and no inhibitor.
We are in the hospital again for a bleed and not having a product that truly works for him is exhausting. Here we go again with tons of pain meds to keep him comfortable. Many days missed from school because we cannot control the pain and the bleed at home. Cancelled appointments, missed days of work and an upheaval of routine for the entire family.
But this is one of those times I just want to crawl under the covers and cry…
….for the crazy, awful pain my son endures
….for the lack of a proven protocol (product) that will work for him.
….for the fact that he feels different than the other kids.
….for not having my mom to call.
