My haiku for Hemophilia

Needles, factor, flush

Prepping for an infusion

Hemophilia

Day 6 #HAWMC: Letters

Dear Hemophilia,

Just wanted to drop you a line and let you know I despise you. I hate how I have had to infuse my son, through IV, from the time he was three days, yes, DAYS, old. When most parents were taking their newborn babies home we had to take our son down to Children's Hospital for a diagnosis and three day stay while he was held for medicine dosage, CAT scan and observation.

You've made him endure several pokes from nurses who said they were good with IV access to bypassing them all together and having us request the IV team for his infusions. You made our son feel like a hospital was his second home. That everyone has to go to the hospital. When he sees the logo of Children's Hospital, no matter where we are, he says "there's my factor mommy!".

My son has had to grow up early...that "kid" is wise beyond his years. He knows his medication days. He knows when he has a bleed. He knows what happens when he has a bleed. Even so much to ask if he has to go to the hospital or if we can take care of it at home. He knows that he needs to take it easy if he has a bleed and believe me when I tell you this is NOT fun. He is an active boy who wants nothing more than to be well...active!

I hate that I have to worry about each whimper in the middle of the night...is he in pain? Is he hurt? Does he have a bleed? Or with each bump or fall if it requires a call to the Hematologist. Or each time he says, "this hurts" if it's the start of a bleed. I hate that I have to type bleed so many times in this blog!

You really make me angry because your treatments are expensive. I hate calling and fighting insurance to get the things needed to deal with you. We have FINALLY been able to take an extended vacation because we have learned to self infuse and didn't have to time our vacation based on nurse visits.

But then...

I want to thank you. Yes, I know...it's weird. But thank you. Because of Hemophilia my son understands and notices his body. He is in tune to how things feel and can tell us when things feel funny. You have made our family stronger in being there for each other. You have given us the opportunity to meet some wonderful people in the bleeding community. You  have helped us raise awareness. You have made us thankful for advancements in modern technology. You have made us appreciate life and to make it the best we can.

So try as hard as you can to be a pain (and you do)...but your messing with the wrong family.

Not so fondly yours,

the Loving's

Day 5 #HAWMC: Aspiration

"If I could do anything as a Health Activist..."

My biggest goal as a health activist is the well being of my kids no matter if it's for Hemophilia or diabetes. To ensure their health no matter where or what they are doing.

My next goal would be that I have empowered them to advocate for themselves because I won't be around to advocate for them forever.

Then:

I want to be a voice big enough that local government and national government listen to myself, my son and all people with bleeding disorders. To know that even with insurance our clotting medicine is STILL expensive. The medicine that Hemophiliacs use is THE second most expensive drug on the market...the first of which is cancer treatment drugs. For government to realize that even though our bleeding community is small we are still mighty. We matter. Our kids matter. Our loved ones matter.

I want to be a voice that helps Hemophiliacs in third world countries get the medicine they need to stop their bleeds. That no one should suffer or DIE because they don't have access to medication to help them live and thrive.

 I want to be a voice that lets my son's school know that even with a bleeding disorder he can do anything. That he shouldn't be treated differently. For his future Coaches to play him as they would a non-bleeder. To work with him, despite his Hemophilia, and develop him as they would each player on that team.

I want to be heard. I want my son to be heard. I want YOU to be heard.

Day 3 #HAWMC

Wordless Wednesday...

Post a picture that symbolizes Hemophilia...

This symbolizes freedom, courage and hope for the Hemophiliacs of today.