Saturday, July 19, 2014

A Little "Normal"

Tonight we went to have dinner with friends.  They grilled steaks and we had great conversation.  My "Christian" was looking forward to playing with their children who are both close in age.  Our friends were so thoughtful because they had already planned for their children to bring toys from upstairs to the floor level since they knew Christian is still not able to walk. 

But it takes more than a bent knee to stop my warrior.  He went outside, played in the sandbox, loved on their big, cuddly dogs, made it up the stairs several times (scooting on his hiney) not missing a beat.

When we left he was sweaty and flushed.

It was a great evening :)

Christian had an evening of "normal" kid stuff and no one even gave his bent knee a second thought.  They just wanted to play and they played hard.

I find that hemophilia takes so much away from my son and our entire family sometimes.  But despite the roadblocks that are put in our way because of this nasty disorder we all manage to move forward.  How we get past the roadblocks may take some creative thinking, but we always manage.

I love those moments when I see my son keeping up with others.  He may be a little slower to get around, but his smile and his spirit are alive and well.

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Sunday, July 13, 2014

A Big Realization

Sometimes you just play the cards you have been dealt the best you can.  You don't even know the difference.  For me I don't know if I would know what to do if I had a child without a bleeding disorder!  Both of my sons are extremely different but the fact is that they both need clotting factor to live as normal a life as possible.

This past weekend I attended the NHF Inhibitor Summit.  I always enjoy being in the same room as other families who also deal with medical issues that are similar to those of my youngest son.  The truth is when you have hemophilia, you are one in several thousand in the United States and that is pretty rare.  But this weekend a statistic hit me between the eyeballs.  Those affected with an inhibitor, like my youngest son, are an even smaller group.  About 1,000 in the country.  And when the doctor leading a discussion was talking to us about immunology she even mentioned, as she looked straight at me, that there are even instances now occurring with inhibitor patients developing allergies to factor VIII…and she only knew of four cases in the country and we were one of those.

I knew our case was rare and I am so glad that my husband and I have been fighting the good fight for the past few years to find something that works.  Traveling out of state for treatment, helping doctors "play nice" and develop relationships, fighting with insurance companies to cover a drug that just might be the answer...

I don't regret a thing.  I would love to take away the bleeding disorder!  I would love for my children to have never experienced the physical pain they have endured in their lives…but what I know is that my kids are rarities…unique personalities…exceptions to the rule.  How can that be a bad thing?

My big realization may have initially been the reminder that my children really do live with a very rare, serious medical condition, but the greatest realization today is that I have been blessed with a passion for my children.  A passion to give them the best medical care possible, never taking no for an answer and making sure the next person to come along benefits from what we have experienced.

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