Numb

My mighty warrior, Christian, is doing so well.  He's been to school 30 days in a row and has not had any bleeds that have kept him down.  He has endured a couple of bleeds that we were able to control at home.  This has been a huge victory. 

But there is one thing that he continues to struggle with and it is a product of the Post-Traumatic Stress Disorder that has developed over time.  He has a huge fear of needles and accessing is extremely difficult.  Sometimes he does well and breathes and focuses but other times he is so fixated on the needle that he completely freaks out.  And getting accessed to infuse is critical so we have to hold him down and that is not the easiest thing to do.

The other night was not a good night.   My husband is the one who is sticking because he is best at hitting the "moving target" and my older son and I have a certain way of holding Christian so that he doesn't hurt himself or anyone else.  He is screaming, bucking off the table, tears rolling, his skin breaks out into hives and he is red as a beet.  And what are we doing?  Remaining calm and making the access happen. 

None of us misses a beat and then continue on with our night.  There is no crying from my husband or myself, there is no "I need to calm down"….we have just become numb to the whole process.  I often catch myself thinking about what just took place and it amazes me that it is just part of what is "normal" in our home. 

When you are in the middle of a crisis, or even a daily routine that seems like a crisis, how you handle the situation is how your children will develop their sense of acceptance of their bleeding disorder.  They feel our anxiety and fear and sometimes we are able to keep those feelings at a distance...other times we are not so fortunate.

Christian is going to therapy and whether or not it will make a difference is yet to be seen.  I just hope with every ounce of my being that this struggle begins to get easier for him. 

 

You do what you have to do even if it's not pretty.