Tangible

When you can touch something it's real and reassuring.

Not everything is tangible, but it is nice when it is. 

Children who are in and out of the hospital with chronic illnesses only know their illness as a way of life.  What most of us know to be true is that illness is not "normal".

I struggle with explaining  to my "Christian" why he has hemophilia when he tells me he hates hemophilia.  There is not a good answer.  God didn't "give" him hemophilia, it wasn't bad luck, he wasn't a bad boy…..it just is.  And I continue to tell my beautiful son that he just wouldn't be "Christian" if he didn't have hemophilia and that I love him exactly the way he is.

I would love for him to not have the bleeding disorder, but it is my responsibility to help him have an empowered life, hemophilia or not.

A few years ago at our hospital (University of New Mexico Children's) they began to participate in the Beads of Courage program.  It is a program that is found in many hospitals across the country that gives children beads for every procedure, milestone and event in their medical history.  It provides a tangible piece to their journey.  The Beads of Courage program hosted a nationwide event on Saturday, September 20th and my son was looking forward to watching the glassblowers make the beads that he treasures.  He was even able to request his "dream bead"….a Lego bead. 

Since he was in the hospital during the event, I stopped by to pick up his bead. 

 

It was specially wrapped with his name and the name of the designer…Nan Charif of Tucson, Arizona.

Oh my goodness….for my son, who had an extremely rough week in the hospital to open a special package with his dream bead was just priceless!

 

This completely warmed my heart today.  Maybe the beads are more for me than my son.  I know that what my son deals with is more than most people will ever endure in a lifetime, and he is only eight years old.  Part of me hopes that he doesn't remember everything in as vivid of detail as I do.  But I want him to know that what he has endured has been beyond limits.  That he has a strength in him that many people only dream to have. 

 

He is one of the bravest people I know.

 

 

 

 

 

In An Instant

My sweet "Christian" was admitted to the hospital Sunday night because his Dad and I just could not access his port.  The next couple of days were filled with IV's and a port that had a nasty rash on the outside.  Last night the IV infiltrated the muscle in is upper arm.  It was pretty awful.  It was painful, swollen and needed pretty constant monitoring throughout the night.  It is healing well, but still a source of pain.

We had no other choice than to access his port. My husband I tried, the nurses tried…we had two people in the room then seven people and the strides we had made to helping his conquer his PTSD seem to have vanished within one difficult day.

Fortunately the surgeon who placed the last four ports came in and was finally able to access. 

The scariest part about this is not the screaming and tears and physical fighting that he does.  It's when we have no access into a vein and cannot get factor into his system, that we become a little panicked.  In an instant you can lose venous access and struggle to find a new site.

Just as we thought we may get to go home today my boy develops a fever.  Blood cultures have been drawn and now we wait.  Hopefully it is just a virus that has nothing to do with the port, but when you have a port, you have to assume the worst first.

I am so grateful for the "good run" of time without much incident.  But one thing I know for definite sure is that it could always be worse.

 

Another good month

To battle my "Christian's" allergy to factor VIII, we are slowly increasing his dosage each month (in addition to 300 mgs. of Xolair every other week).

Yesterday was another big day….he tolerated 750 units of factor VIII!  It sure is a slow process, but things are going great:)

He looks great, is having a fantastic start to the school year and is just as happy as any little boy could be.  When I ask him what he like the most about 3rd grade he simply says, "Everything."  That does a mama's heart good.

I am so grateful that things are going well.  The truth is, things can always be worse.  That goes for all of us….bleeding disorder or not!

Here's what I know for sure today:

• I am not going to live in fear of the next bleed. 

• I am not going to "What If?" myself into being sick.

• I am choosing to take the good times and enjoy them and be right alongside my family (and not feel guilty about it).

I hope that you are experiencing a good season right now.  And if you aren't….it will get better. 

 

Hang in there.