#HAWMC: Day 28: H.E.A.L.T.H.

H-Hemophilia

E-Educate

A-Advocate

L-Live

T-Tourniquet

H-Healthy

Hemophilia graphic thanks to Google Images

#HAWMC: Day 27 Bye, bye, bye

Dear Hurtful Person,

Consider yourself lucky that you or your child doesn't have a bleeding disorder. 

Consider yourself lucky that you have never had to poke your baby and do an IV infusion three times a week; sometimes more.

Consider yourself lucky that with any bump, scrape, bruise you can hug your kid, dry their tears and send them on their way without wondering if that is something you might need to infuse for.

Consider yourself lucky that you have no idea how expensive it is to have a hemophiliac. 

I have a 7 year old son, Jackson. He was born with severe hemophilia A, factor VIII deficiency. He is missing a protein that makes his blood clot. We administer infusions twice a week to clot his blood and let him be a "normal" boy. You cannot see hemophilia. What you can see is a handsome blonde haired, hazel eyed boy who is solid, has a great smile, is competitive, loves to give hugs, has a caring heart and talks about and play sports.What you cannot see is an internal bleed. He can feel it and many times he feels is before it swells and we can physically see it. He may need to ride in a wheelchair, even though he has no visible broken bone casts, because he can't bear weight on his foot due to an ankle bleed. He may need to use crutches because he has a joint bleed. He may look like he is "faking" an injury but he isn't. Just because YOU can't see it doesn't mean it doesn't exist. 

I'm not sure what myths/lies you've been told about hemophilia but it did not come about from incest, as much as TV loves to glorify things. Yes, hemophilia was known as the Royal Disease as members of many royal families did have hemophilia. No, hemophilia is not contagious. No, my son will not bleed to death from a paper cut...he will bleed, a little longer than you, but he will not die (and we've been asked that a million times!!) My son can be a rowdy, rough and tumble boy like any other boy. 

Hemophilia can side line him from having fun just as a cold or allergies can side line us for a day or two. We have brought our son up letting him know that hemophilia is just a part of him...it doesn't make him who he is. Jackson is wise beyond his years. He understands compassion for all. He knows physical pain and emotional hurt. He knows empathy. 

I don't blame you for not knowing about hemophilia. There are plenty of illnesses and diseases I know nothing about. Ask questions, don't assume you know anything about hemophilia. And if you are asking question please listen to what we have to say. And most importantly, treat my son like a human. He has thoughts and feelings too. Showing compassion is a wonderful trait and appreciated by the ones who need it most. 

Sincerely,

Jackson's Mom

Photo credits: Google images

Day 26 #HAWMC: Make it a Great Day!

As we all know, hemophilia gets in the way sometimes. A bleed can stop us from having fun. A bad stick, be it an IV infusion or a port stick can be awful. Unfortunately, we've all had bad days. But today I'm to share with you 5 tips on how to make a bad day, a good day!

1. Take a deep breath. It's a moment in time...take it minute by minute if you need to but know that it doesn't have to ruin your entire day.

2. Focus on the positive. You've got a bleed...now you have time to watch that series on Netflix that has been on your wish list!!

3. Lean on your family or friends. You know, the supportive ones. And if you don't have one then go on Facebook and chat with the hemophilia community...there is always someone on line!

4. Tomorrow is a new day. Fresh eyes on a new day gives you perspective and the opportunity to be thankful, yes, thankful, even for those crappy days.

5. Get some rest. I know, I know, I need to listen to my own tips but even a 15 minute cat nap can make your attitude and mood that much better. It can give you the added strength to tackle the situation.

I hope you have a great day!!

Thanks Google Images for a fun great day smiley face!! 

Day 22 #HAWMC: Hobbies

Today I am to share my favorite hobbies. If you’ve been reading my posts since the beginning of the month then you know that I’ve talked about running, painting, coloring and now that I think about it…writing. While I’ve mentioned these activities as stress relievers they are my hobbies too. I don’t nearly have the time to do all of them but I do enjoy them when I get the chance to participate. I like being creative. It allows me to submerge myself in the craft and not worry about doctor appointments, insurance bills, emails, pharmacy concerns or chronic illness. Pounding pavement helps me work out any stress and let’s face it…it’s good for me too.  What kind of hobbies do you like to do?

Day 21 #HAWMC: Reflection

Reflect on your journey today. What are your thoughts and hopes for the future?

I cannot imagine what my life would be like if it didn't take the path that it is on now. I cannot imagine a life in which I only went to Doctor appointments because the kids needed a well check up or sick visit. I cannot imagine not traveling down to Cincinnati Children's Medical Hospital monthly (sometimes weekly) for the kids various appointments. I cannot imagine what in the world I would blog about!! You see, I wouldn't wish this journey on anyone else but I have to say we've had a pretty good journey. We are blessed with a top notch Children's Hospital not 40 minutes away from our house. We are blessed that I have a voice and can use it, very loudly at times, to advocate for my kids when it comes to care, insurance and with members of Congress. And for those of you that really know me...I'm sure I could find something to blog about!! On this journey we have met some amazing people in the hemophilia community that I wouldn't have met any other way and for that I am grateful. We have been given opportunities that we wouldn't have been given if not for Jackson having hemophilia. Do I wish he didn't have hemophilia...you bet; however, he does and I can't change that fact so why not make the most of it, the situation and the journey?

My thoughts are many as are my hopes for the future. We are grateful to live in a time of prophylaxis

treatment so that we may treat proactively and on demand if needed. We are also grateful to live in a time of new factor products coming to the market that will prolong the life of factor in the body which mean less pokes for my son. I'm not sure what the future holds for us but I am ready to see where it takes us as this is our journey to live. 

Thank you Google images for this photo.