World Hemophilia Day

Today is World Hemophilia Day. 

It took me a really long time to figure out what I wanted to blog about.  There's so many different issues that I'd like to raise awareness about but I only picked a few. 

I wanted to explain what it is like to be a mother of a child with Hemophilia. A lot of times I try to put on a strong face and act like it's really not a big deal but sometimes it is. I think as a parent, you have all this craziness going on in your head and you really don't want to admit that you think it. It just seems a little creepy and over dramatic. But I think it's worth mentioning and talking about. I strongly feel that the mental health aspect of hemophilia is rarely addressed. 


Every time the phone rings and it's my son's school, really bad things go through my mind. I wonder... did he fall down and break something or did he hit his head? I can't help but think the worst when really it's just he bled through the Band-Aid and they're replacing it. I absolutely love that they call me for everything. I think that's a very valuable aspect of his school. It's just every time their number comes up on my caller ID my stomach drops and I try to brace myself from what might be on the other line. Thank God it's always been nothing. 

Or what about the time when he fell off the swing or the monkey bars and knocks the crap out of his head? Then I am patiently watching him without letting him know that I'm worried. Is he gonna throw up? Are his pupils equal?  

See, when you have a hemophiliac, you must have really good assessment skills. Act like nothing is going on but keeping your eyes glued to him to make sure he doesn't start having signs of trouble. I can't count how many times I infused his port before bedtime and woke up trying to feel his head and make sure he didn't have a fever. Sometimes I feel like a port is a blessing and curse at the same time. Like a ticking time bomb.... what if a piece comes off.... becomes an embolus and goes to his brain or his lungs or into his heart. It could mean disaster. It could mean I loose my son. At the same time, the port allows us to have freedom and it allows his veins to rest so they aren't constantly being assaulted with needles. This may sound a little bit crazy but with hemophilia you always have to be prepared for the worst. But you can't let people know that because they're probably going to say "oh that's a little crazy" or "maybe you should give yourself a rest"...or my FAVORITE...."Why worry, you never know. You could cross the street and get hit by a bus." Well, you bet your ass I will have factor near to treat my kid if said bus crosses our path. 

I think it's just good parenting. What's wrong with being really prepared for the worst and hoping that it never happens? So when it does, you have everything that you need and you have a plan in place. 

If you haven't had time to watch the bad blood documentary I highly recommend that you do. Every time I hear of a factor recall my stomach drops and I feel really.... really... sick and wonder is this the time that my son is going to be infected with HIV or hepatitis or something else. Mad Cows disease...don't even go there. It's a reality. It happened to 10,000 men/boys with hemophilia. TEN THOUSAND. Remember Ryan White? I am sure you have heard of him. Bet you didn't know that he had Hemophilia and that's how he got HIV. 




I never let my son know that these are the types of things I think about. I don't think it's appropriate for him to live his life in fear. That's my job. I'm the one, until he becomes an adult, that makes sure that we are as prepared as humanly possible.


I think another source of fear that's worth mentioning is insurance issues. We face a great burden maintaining medical insurance for our children. The medication he gets typically costs a dollar per unit. The dose is weight based so he gets about 1000 units per dose. Right now he's getting it three times a week minimum. That's $3000. What happens if I don't have insurance? I don't qualify for Medicaid and NO INSURANCE COMPANY WILL WRITE US A POLICY. I tried. I'm very blessed to work for one of the major children's hospitals in Houston, Texas. All of our care is very affordable and his ER visits or hospitalizations are payed at 100%. This is virtually unheard of. My fellow bruiser military moms who get TriCare....what a joke. You would think that the brave souls that put their lives on the line would get amazing insurance coverage for their families....but NO. That's only for elected official and secret service agents who, allegedly, use our tax dollars to buy Colombian hookers. Fan-freakin-tastic. 


With all of this said, I am not trying to elicit sympathy or pity from you. I only want to invoke a deeper understanding of what it's like. I hope you take something away from this. I hope that it helps you to teach your children about bullying because you never know if you might be hurting a child with hemophilia. Remember to drive safely because you never know...the car next to you might be holding someone that bleeds to much. Or what about criticizing parents that have their children on Medicaid? It's not what any hemophiliac parent wants to do but honestly, if you have a child with special needs, you'll do whatever it takes. I encourage you not to pass judgment on me or my family and friends. I don't think you'll ever really know what it's like to be in my situation... until you are. 


Although I would not trade another disease for Hemophilia, I do wish that he didn't have it. I wish there was a cure. I wish that this never had to happen. But because it did, I have some amazing friends and huge support from my family. Caiden takes comfort in the fact that his cousins have "chemo-philia" just like him. 


I hope that one day technology will change and there will be a cure for hemophilia. The only thing I ask of you is to pray. Pray for a cure. As we "celebrate" world Hemophilia day, remember to pray often and pray hard. Pray that there's more affordable access to care for our children, parents, and older hemophiliacs to take care of themselves. Pray for a cure. Pray now.