Friday, July 26, 2013

Socks and Shoes

On June 30th, my "Christian" was running around playing….it was the last day he wore socks and shoes ...until today.  Today was the first day since the 30th that my sweet, 7 year old has put both socks and shoes on and did not need the wheelchair.

He's not 100%, but he is so much better.

When I suggested to Christian that we make a SONIC run, it almost took my breath away seeing him with his shoes on.  It completely caught me by surprise. 

When your child does not have a medical condition there are things you expect:

  • That they run and play without pain.
  • That they can walk in and out of stores when you run errands.
  • That they never grace the halls of a hospital (and know so many people on a first name basis).
  • And that your worries center around spelling homework, getting to piano lessons once a week and trying to decide which sports team to participate in for the season.

We all worry about our children.  Not that it does anyone any good.  Worry does not change the outcome of the situation, it does not make the days move along faster and it definitely does not contribute to our health. 
But today I am extremely thankful for the little things...the socks and the shoes. 


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Wednesday, July 17, 2013

A Funky Season

I admit, I enjoy Facebook.  I'm more of a "lurker" than a "poster" but I do like keeping up with folks and seeing pictures of my friends children and grandchildren.  There was a picture that took my breath away yesterday.  One of our friends, who also has a 7 year old with hemophilia and inhibitors, posted his basketball picture.  He was so handsome and looked so happy.  He was down on one knee with the ball in the other hand with a big smile for the camera and I immediately thought, "My Christian can't do that."  Christian has an awful target right knee and honestly, it has not been good since early January.  He has one struggle after the other and is trying to heal from a new bleed in that knee that started on July 1st.  There are so many things that my son can do, it's just that sometimes I focus too much on what he can't do. 

I've had people tell me that I am positive and encouraging through our hemophilia/inhibitor journey, but sometimes I just don't feel like I am.

I feel selfish because I feel "trapped" at home when a bleed is happening….but I am blessed beyond measure because I can work from home.

  • I get tired of having to haul the wheelchair in and out of the car and walk Christian to class on those days...but I am fortunate to have a wheelchair that is easy to use and the flexibility for my husband and I to be able to take him to school everyday.
  • I hate that Christian must wear a brace to help alleviate his ankle issues (and look different)...but I am so thankful that my insurance allows for us to have a special orthotic created for him.
  • I especially hate the fact that we must travel out of state for direction on Christian's treatment...and again, I am fortunate to have the resources to be able to get on a plane and get where he needs to be.
  • I am sad that Christian can't start Immune Tolerance due to his allergy to Factor VIII...but at least it is now down to 10 from 2,200.

I am just in a funky season of seeing the really yucky stuff.  I pride myself in always working to find the good in every situation, but when your child suffers and you just want him to keep up with his friends sometimes the white flag is raised and you have to surrender….to the fact that the journey is just more difficult than most. 

But there is always hope.  I have to keep telling myself that there is always hope.

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Thursday, July 4, 2013

In An Instant

Wham!  Our lives can change in an instant.

  • When the phone rings, the news on the other end could be a terminal diagnosis or a family member could have lost their life.
  • You drive to the local grocery store to get a gallon of milk and be involved in an accident.
  • You get a promotion at work and you are truly working at your full potential.
  • You stop and help someone in need and your day never gets back on schedule.
  • A little boy with hemophilia spontaneously starts to bleed and is bedridden and on pain medication for days on end...and mom and dad have to rearrange their worlds until he heals.

It can happen so fast with no explanation.

I often wonder why people have to suffer; especially children.  The only way I can make sense of it is to believe that when a child suffers they have an amazing purpose in this world.  It may be that they grow up to do amazing things; or if their life is short they are here to help pull those around them together and heal them in a way they never dreamed.

Maybe it sounds too simple.  But what I do know is that through my son's suffering, I have become a changed woman.  I am not the same person I was before he was born in January 2006. 

I just thought my son was just an answer to my prayer for having another child (after years of infertility).  I didn't know what God was doing at the time. 

I had no idea that his hemophilia would change me into a stronger more resilient woman.

  • I know what it is like to hear my son scream in pain for hours on end with IV pain meds not working.
  • I know what it is like to see my son not be able to "keep up" with his friends on the playground because his ankle and knee are in constant pain.
  • I know what it is like to see people stare at my son because he is in a wheelchair and he "looks okay"...they have no idea that two of his joints are shot.
  • I know all too well the horror in watching my son be overmedicated in the hospital and a team of clinicians surround him to wake him up.
  • And I know the fear that races through my body when my son is heavily medicated and I stay up all night counting his breaths.

My heart has stopped more times than I can count with my little one, and the crazy part of it all is that I never knew I had it in me to love as intensely as I do.  It's almost too much to comprehend sometimes.  

I can't take his pain away because I would in an  instant.

What I can do is advocate for my children, always ask questions, demand "out of the box" thinking on treatments, and never give up on finding the treatment that works best.

Hemophilia is awful...but it is part of our lives.  We do what we have to do to the best of our ability. 

I'll never give up.

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