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 4 #HAWMC: Care Page

Your child, or you, have been diagnosed with Hemophilia or another bleeding disorder, so where do you go on line to find help? I have found a few places that have helped our family through the past 5 years.

1. National Hemophilia Foundation

2. Hemophilia Federation of America

Both of these are great websites to learn about your child's, or your bleeding disorder, product safety, research updates, educational conferences, news and advocacy.

3. Find your local chapter. I feel this is key in finding local support and finding other members of the bleeding community.The bleeding disorders may be considered a rare disease but there are still others out there...you are not alone. As a caregiver it's great to meet other mom/dads that are going through the same things we are. It also helps my son be able to meet other kids around his age that have a bleeding disorder.

I feel the more you know and can educate yourself on the bleeding disorder the better equipped you'll be in advocating for your child in daycare, school, sports and life. Advocate can be a scary word. But it doesn't have to be. Advocate could mean going to Washington, DC and talking with lawmakers. Or it could mean finding your voice to advocate for your child at school in gym class or the classroom. You define what advocate means to you and your situation.

Hopefully I've given you a place to start and find a home in the bleeding community.

Day 3 #HAWMC

Wordless Wednesday...

Post a picture that symbolizes Hemophilia...

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

Day 2 #HAWMC: Introducing Hemophilia

Today's blog challenge is: Introduce your condition to others. What are 5 things you want people to know about your condition.

"Well...Everyone, meet Hemophilia; Hemophilia, meet Everyone."

For those who have never met Hemophilia it is a bleeding disorder that is most usually found in males. It is genetic yet can occur through a spontaneous gene mutation. In a nut shell Hemophilia is a disorder in which your blood will not clot. There are different types of bleeders, if you will. There are mild, moderate and severe. There are Type A's and B's. There are Factor 7,8,9 and 10 deficient levels and then there are inhibitors. While back years ago the life expectancy was not good for Hemophiliacs my son, who is Severe A, Factor 8 deficient, has a normal life expectancy. He is treated twice weekly (sometimes more if there is a bleed) of a medicine through an IV infusion that helps his blood clot. Studies have discovered that treating proactively helps prevent bleeds or at least catches them sooner. Early treatment is helpful in less joint damage and better overall recovery.

5 things I would like you to know about Hemophilia:

1. My son will NOT bleed to death from a paper cut.

2. My son CAN do anything your kid can do...he may just need to infuse before or after an activity.

3. You DON'T need to bubble wrap a Hemophiliac.

4. Hemophiliacs DON'T just bleed out. They can have spontaneous joint or muscle bleeds. So even though you may not see blood...there can still be a bleed.

5. Yes, my child may be covered in head to toe bruises but we DON'T beat him...he is a bleeder...this means he will bruise more than your typical kid.

Thanks for dropping by and meeting my son's health condition...Hemophilia.

Why I Write...

Hello Everyone! We've just come off March as raising awareness for Hemophilia. I tried very hard to post, on my personal facebook page something almost everyday about Hemophilia. In doing so I tried to educate my friends and family about Hemophilia and its causes, problems and daily life. I've decided to participate in the WEGO Health Challenge this month. I will be writing, with the help of some daily prompts given by WEGO Health. I hope you enjoy my month long blogging!

Today's prompt is Why I Write:

That's easy...I write for my son, Jackson who has severe Hemophilia A, Factor 8 deficiency. He came into this world with a 50/50 shot of being a hemophiliac...and has taken to his "normal" like a champ. Be it a challenging champ at times but a champ all the same. I write for my family and friends to understand what our lives are like. I don't want sympathy or pity...I want to educate. I don't want my son excluded from things or treated differently. There is no need for all that! With a few precautions and a little planning he can do anything!

I found WEGO Health's Writers Challenge last year when I was blogging for the Blue Heel Society, a group of fab people who advocate for diabetes, as I have two daughters with Type 1 Diabetes. So I thought...why not do the same for Hemophilia? So here I am writing to you about Hemophilia...enjoy!

Part 2...Our Story

Welcome back...I thought I would be back sooner but such is a life with a busy schedule.

To get you up to speed I left off at the initial diagnosis of Severe Hemo A, Factor 8 deficiency for our son, Jackson. We had asked our Hematologist what our son's life expectancy rate was. The look on his face was surprise...he said very calmly, "the same as if he wasn't a hemophiliac". That put us at ease but still we were so scared...of the unknown. We knew how to take care of a Type 1 diabetic but how do you take care of a hemophiliac? I envisioned padded walls and corners, no hyper dogs to knock him down and a life full of bubble wrapping my son. We explained our family history to the Doctor and how our hemo family members had all passed on. He then understood our life expectancy question.

Through the course of all this craziness the Hemo team discovered a raised bruise on Jackson's upper temple area. Most likely caused from the OB pulling him from the birth canal. He needed his first dose of factor at 3 days old. Jackson was admitted to the NICU at Cincinnati Children's for three days of factor. Our Hematologist rode with us down the elevator to the NICU floor. I don't even remember what we talked about. I do remember him apologizing for not being available the upcoming week as he was leaving on vacation and felt sorry he couldn't cancel it! (GREATEST Doctor you would ever meet!! I'll blog about him another day) We set Jackson up in his room. Had him attached to all kinds of monitors that kept beeping. All I wanted to do was take my new born baby home to be with his sisters and we were stuck in the hospital.

The next few days were full of visitors, a CT scans of his head, factor, meeting with Jackson's Hemo team...all of which is a blur. I stayed with Jackson while Joe went to be with our girls at night. He likes to Google things so he was searching one night and came across a Hemo Mom blog (he doesn't remember which one). He came to me the next day with a glimmer of hope and said he read on this Mom's blog about letting your Hemo kid be a kid. Don't bubble wrap them. There is factor to fix almost all the bleeds that may happen. But nothing to fix the potential emotional damage you may cause by not letting your kid be a kid or being super overprotective. It was from that point on I knew I had to help my son be all that he could be (with a little precaution if needed).

Jackson was finally released from the hospital factored up and doing well. The Hemo team had decided to start him on prophy dosing once a week. (Prophy dosing is giving him his medicine, called factor, once a week to help prevent any break through bleeding.) We had an action plan and took our baby home.

Looking back I'm glad I didn't know that Jackson was a hemophiliac. I would have looked up all the "bad" things that are Hemophilia related. I would have worried. It would have second guessed everything. Instead I stared Hemo in the face and said "Let's do this!" We would learn, we would adapt but MOST importantly...

we would LIVE!

So that's our story...the beginning anyway. Jackson is getting ready to turn 5 so I have to catch you up! I'll be back soon!

My boys! <3