Monday, April 22, 2013

The Playground

Last week I went to "Christian's" Spring BBQ at the elementary (where 1st graders eat lunch at 10:45 am) :)  I sat with him and his friends and enjoyed some great conversation followed by the playground.

The doors from the cafeteria opened and the kids raced off to the jungle gym and the ball courts.  But something was not able to happen...Christian could not run with them.  Even if he had not been in the wheelchair, he would not be able to keep up.  It took my breath away for a moment.  My son was not able to run and climb and enjoy his classmates.  I started to feel really sad and then Christian says "Come on Mom, let's go around the track!"  He excitedly takes me around the perimeter of the playground (his very familiar route) and keeping up with him was not as easy as I expected.

Something beautiful happened during that recess time.  Occasionally a friend of his would find him on the track and walk and talk with him.  Two really cute little girls came up and said "let's race", as they walked quickly beside him.  And then a little boy came up to him and started "dodging" him making Christian turn his wheelchair around in circles to find was like hide and go seek :)

Those children included my son and expressed a love only a child can express to one another. 

The wheelchair was not in the way, they saw past it.  He was just their friend.

My eyes were opened that morning.  I have a deeper appreciation for what my little one has to accept. 

I will be with him every step of the way.

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Monday, April 15, 2013


Our family had a great vacation to Colorado.  My "Christian" did not have any bleeds, just a horrible cough, "Lance" had no issues and the most exciting part of the trip was that blizzard like weather hit in the middle of the week and we did not have heavy coats :) 

The main reason for the trip was to see our second opinion HTC regarding Christian's inhibitor.  Not great news as of now.  His level is down to 11.9 but the doctor is truly stumped.  Christian is allergic to the Factor 8.  The avenue we are investigating is "desensitizing" him to the factor.  This would mean an extended stay in the hospital (in Denver).  But there is too much we do not know (and the doctor agrees as he is reaching out to colleagues across the country).  It's a little too much to even think about right now. 

We are reaching out via social media to see if others have endured this type of complication and will be attending an Inhibitor Summit this July armed with questions.  We are planning on taking it slow and getting our ducks in a row.

And yes, today was our first day back to work and school and the elementary calls...Christian has twisted his "good" ankle.  In the wheelchair he goes and is home with a bleed.  And yet again, another field trip is tomorrow and it looks like we may not make it.

There are many things in this world that are worse than missing his third field trip of the year...Boston, a wreck on I-40 yesterday killing a 7 year old child, losing a job, losing a spouse....but it still hurts that there are times when my son has to step back. 

It all depends on how we, as parents react.

I just pray that he eventually embraces his bleeding disorder. 

I know that sounds strange, but we all need to embrace ourselves just as we are, don't you think?

Thursday, April 4, 2013

Ready for a Break

We have been enjoying a little respite from the craziness "Christian's" inhibitor brings to our lives. His knee is doing much better, but is still swollen. I looked in his infusion log and the first knee bleed of the year started on January 5th....and it is still not healed.


His classroom is very far from the cafeteria, library and the front of the school, so he has been using his wheelchair (in the hallway). I hate depending on the wheelchair, but it sure has helped him. We are anxiously awaiting his new custom chair to arrive! It was a pretty penny, but I think it will be well worth the investment.


Our family is looking forward to Spring Break next week. We will be traveling to Denver for a follow up appointment at the HTC and are hoping to get a new plan of action for this inhibitor.


You just have to move a day at a time when you have the craziness of a chronic condition in the mix. It's so easy to get overwhelmed and find yourself worrying about what has not even happened. Be thankful for the calmness when it is present and enjoy the moments.


They just go by too fast.