Saturday, May 21, 2016

A "Normal" Year

My mighty warrior, Caeleb, just completed the fourth grade.  For most families moving from one grade to the next with their children is not a horribly big deal.  In our home this is a huge milestone this year.  Caeleb's fourth grade year has been the first year since Pre-K where he did not miss school because of bleeds and hospitalizations.  It has been the first year that he has attended school with no hemophilia incidents (just a few ear infections).  The. First. Year!

His reading and math scores have shot up, he has figured out how to relate to his friends socially and he has just had a wonderful year.  And to top it off, he has decided he is ready to learn how to self-infuse, so he is going to hemophilia camp in June.

Hemophilia was the center of our lives for quite a long time, and now it's not.  It's just part of our day.  That's our normal.

God is good.
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Tuesday, May 10, 2016

Guest Posting at

When I read stories about people living with chronic illness I am absolutely fascinated. It’s not that the details of their illness particularly fascinate me, but it’s what I have in common with them that deeply resonates in my heart. I am the mother of two sons with severe Hemophilia A and life with a bleeding disorder can be very difficult. My oldest son, Julian who is 19, has not had many complications throughout his life. He infuses himself regularly, and a young man self-infusing is not “normal” for most, but for him it’s just part of his world. My youngest son, Caeleb who is 10, is my mighty warrior. This precious boy has endured six ports, thousands of infusions and more hospital stays than I can count. He lived through some of the most excruciating pain I have ever witnessed, lost mobility for over a year and has severe joint damage. Despite all of that, he is a happy, well-adjusted boy who enjoys school and recess and has a compassionate heart. It’s been a rough journey.
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Thank you, Brandi!

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Saturday, May 7, 2016

My stomach turned

For about two years my son, Caeleb, was in a wheelchair.  He was able to use a walker in the house and sometimes in his classroom, but if you have ever seen a child use a walker, it breaks your heart.  I don't know why I could handle seeing him in his wheelchair without any issue, but the walker...not so much.

Last week Caeleb was playing outside without his shoes on (because he's never been told to wear shoes outside....yeah, right).  A nail got the bottom of his heel and my husband had to take him to the emergency room for a tetanus shot.  When he came home he was hobbling quite a bit and took out his walker.

My stomach completely fell out of my body.  For a second I thought back to those years of wheelchairs and walkers and it was like a horrible flashback.  He managed to get where he was going and I put the walker away.

Sometimes when we are in the middle of the worst of the worst with hemophilia we can't see the "forest for the trees."  We forget that things will eventually get better.  But on the other hand when things are going so well for such a long time, we get complacent in our thinking and forget how bad things can get.

At least I have gotten better about not worrying about what might happen anymore.  We have to take each day and do the best we can.  And hopefully we'll have more days without hemophilia being the center of our lives.
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