Sunday, December 22, 2013

Superheroes

The idea of a "superhero" is that they do things that most normal people cannot do.  They have super strength, x-ray vision, speed, determination...

My "Christian" is a superhero. 

As I write this he is lying asleep in his hospital room...a deep sleep because of the pain medications he is taking.  He has a hand that is black and blue and looks as if a truck rolled over it and a knee swollen to at least twice the size of his "good" knee.

He hurts.  He has pain I cannot begin to imagine.

He has endured more pain and trauma than many adults and he is seven years old.  He is not able to run well, needs a wheelchair to get down the hall at school (or risk starting a new bleed) and he has been poked by needles hundreds of times.

Despite all of the "yuck," he always seems to have a smile on his face.

He defines strength.  He defines love.  He is my superhero.

Our children with bleeding disorders are special.  For some reason they have this condition to live with...we will never understand "Why" and we will never be able to take it away.  All we can do as parents and caregivers is love them, advocate for them and ooze compassion and understanding as they struggle.  We need to help them struggle well.

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Sunday, December 15, 2013

And the tears came

Getting ready for church turns into a day in the emergency room.

Another day of plans put aside….a party cancelled, some needed work put on hold again…

A hand swollen, digits full of blood and a little boy who doesn't understand why.

Passing the time watching movies...praying for results that make sense and medication to work.

A moment of joy at not having to spend the night in the hospital.

Back home to the reality of school projects and heaps of clothes to be washed.

A quiet moment in the kitchen as I try to get back into the pace of a Sunday evening and the tears start to fall.

 

Tears that have been building up over time.

Tears from uncertainty.

Tears for the pain my son endures.

Tears that I cannot take the hemophilia away.

 

 


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Wednesday, December 4, 2013

Monitoring Anxiety



I have struggled with anxiety for as long as I can remember.  It took me years before I realized what it was and that it was real.  My mother also lived with it, but our family did not realize it until after she passed away.  It is a condition that can be handled in many ways; however understanding is half the battle.  I can usually control my anxiety with deep breathing and prayer, but there is one thing in this world that sends my anxiety to paramount levels:  the sound of the monitors in the hospital.

To read the rest of this post visit  http://www.hemophiliafed.org/news-stories/2013/12/monitoring-anxiety/.