One of my new favorite sites is “The Mighty.” They are encouraging people to write letters to the disease/disorder that affects the ones they love. Here’s mine.
Dear Hemophilia with an Inhibitor,
I didn’t know you could be so vicious. You destroyed my son’s ankle and knee. You put him in pain that was unimaginable and almost uncontrollable. You took away his ability to walk. You even had him at the point where he almost did not wake up after a series of medications. You put him in the hospital for weeks and months at a time and you made him miss more days of school in one year than most miss in a lifetime. You kept us from holiday’s and birthday’s at home and even made us cancel vacations as we were about to walk out of the door.
You caused our entire family pain and we shed many tears. You threw in an extra bonus by making sure the factor replacement he needed did not work with an extremely rare allergy. You made us travel out of state for more medical advice and fight for several doctors to work together for the good of my son.
For eight years we were in a constant war with you. And now, the war is over. We won. You aren’t even registering anymore…you are zero! Remember that rare allergy? What you didn’t know was that my husband and I traveled many miles to find a doctor who tried something new. We fought for this treatment and it worked. Now that we can use factor VIII, it did its job and annihilated you. You are zero.
I know people tell me to be ready because you can come back. But I refuse to live in fear of you. I know who you are and how to fight you.
I know you are wondering about a few things so let me get you up to speed. My son’s knee and ankle are damaged but healing. He doesn’t need a wheelchair anymore. The hospital? He hasn’t been admitted in six months. School? He is there every, single day and loves recess. Oh and by the way, we went to New York on vacation and he walked everywhere. He has not had a bleed in months. Did you hear that? Months.
You tested my family and inflicted pain on all of us, but you also taught us how to fight. We are warriors. Every single one of us.
And tell your inhibitor friends that when they mess with the family of someone with hemophilia that they will be in for the fight of their life!
If you dare to come back, we’ll be ready to fight again.
Sincerely,
“Christian’s” Family
