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.

Guest Posting at BeingFibroMom.com

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.

To read the rest of the post visit www.beingfibromom.com/a-prisoner-of-hope.

Thank you, Brandi!

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.

World Hemophilia Day 2016

Just about every day, week or month can be associated with awareness.  World AIDS Day, International Blood Cancer Awareness Week, Dental Health Month….and of course there are the ones that are for fun like International Talk Like a Pirate Day and National Margarita Day. 

Today, April 17th is World Hemophilia Day.  It is a day set aside to spread awareness about bleeding disorders on an international level.  Maybe you know someone who has a child with hemophilia but have you ever considered that there may be a bleeding disorder in your family?  Asking questions is always a great place to start.  It may help you uncover some realities in your family that you had not considered.  I recently had an old friend reach out to me because she thought she may be having complications from a bleeding disorder.  It wasn't hemophilia or von Willebrand's disease, but she went in for treatment and started by asking me…her connection to bleeding disorders.

You may be that connection for someone else today.

The other thing that weighs heavily on my heart today on World Hemophilia Day, are the thousands of people around the world who are suffering from bleeds right now without access to clotting factor.  My sons have thousands of units of factor available in our home and others are suffering. 

• Suffering in pain that will not have relief any time soon. 
• Suffering because their mobility is challenged and the only way they can get from place to place is on an old set of crutches. 
• Suffering because the cost of factor is beyond their wildest imagination.

Tonight I pray for those all over the world affected by bleeding disorders.  I pray for continued strength and peace so that they have a new day to start the fight all over again.

Bleeding Disorder Awareness Month

March is BleedingDisorder Awareness Month.  It is a month when our community puts their best efforts forward to spread awareness about the disorders that our community live with every, single day.  Personally I don’t do anything different during the month of March except change my Facebook profile and cover photo.  I write and share my stories and struggles often and when I do I am making people aware that hemophilia is a chronic illness that brings a lot of struggles.  When your child is doing well, walking and using their limbs without problems, people don’t understand that they can still be in pain.  I think hemophilia is definitely an “invisibleillness.” 

My ten year old son, Caeleb, has significant joint damage in his right knee and right ankle.  If you watch him sit on the floor, you will notice that his leg doesn’t quite straighten all of the way out.  When he walks, he has a subtle limp that becomes more pronounced the faster he walks or runs.  And during the winter months, he aches.  He has pain that a ten year old should not have. He compensates and gets around very well, but I also wonder what kind of pain he has that is part of his normal.

If we go to a mall or a place that has a significant distance to walk, we will often use the handicapped placard to park.  Whenever I have the chance to cut down on some walking to alleviate achiness and soreness for Caeleb I will.  You should see the stares we get!  They are almost as bad as the stares we would get when he was in a wheelchair in the airport.  Once we arrived at the gate, Caeleb would get up from his wheelchair and walk in the waiting area.  Of course people thought, “There’s nothing wrong with him!”  I guess I should carry his MRI films with me to show them different. 

It’s no one’s business.

You just never know what someone is dealing with.  Everyone has a struggle that you know nothing about.  And often times an illness that can’t be “seen” causes individuals to need assistance that is not obvious.  We need to stop judging others and worry about ourselves.  When we do the right thing that’s all we need to worry about.

Easier said than done. 

I don’t want anyone to feel sorry for my sons or our family.  I want them to see that the disorder they struggle with is real. It is serious and I want people to know what hemophilia is so that they will be aware and pass information on to others.  We never know when a little piece of information can be lifesaving for someone else. 

I want people to see how strong and amazing my boys are as they live and thrive with hemophilia and inhibitors.  They could have easily given in and been scared to try new things, but they are both well adjusted and living with passion.