You know, I really didn't expect it to go this way. Even after a divorce, ensuing pain and drama, figuring out how to do grad school as a single mom... That was hard but I still believed things were going to be good.
And for a while they were. They were really really good. Then it all came crashing down. I got knocked down so hard I didn't even begin to wake up for a year. Now, I walk through this life with a spear through my chest. I hurt. Always I hurt. There is no moving on after a child dies. There is learning to live around the anguish but it never goes away. It never diminishes. You just get used to it and you learn to function.
My rainbow baby brought light back into my life and we have fought for him to live from the first moment he entered the world. He was born unable to breathe, into the world before his lungs had developed the surfactant that would allow oxygen into his bloodstream. His brain wasn't developed enough to keep telling him to breathe and his little heart was so confused about what it was supposed to be doing.
We fought. We slept on the couch in his room, we maneuvered IVs and monitors and tubes so that we could hold him. We just sat and held him.
Every moment of his life that child has been a light.
As he grew it was clear that he was exceptional. He loves everything and everyone. He smiles, he laughs, he runs and plays. He lives. I wish I had words to describe the light he carries. The light that beams from his little heart.
All I want in this life is to protect that child.
Because of the financial strain (impossibility) of paying for the infusions he needs to survive we agreed to join a clinical trial. The trial would supply 6 months of free medication in exchange for data. That data is collected by blood samples.
We knew there would be a lot of blood samples. We had no idea how traumatic they would be for him, how hard it would be to hit his veins, or how much they would scar.
This week, after months of blood draws, he was supposed to go through "PKs." This means his blood was supposed to be drawn twice on infusion day, then the next three days in a row, then again every other day for two more draws.
Long story short, he is too scarred and too traumatized for them to get blood. He becomes hysterical as soon as the tourniquet is put on and kicks and screams through the whole thing. He is scared. After the first attempt on day three (after failure on day 2) he was crying and saying "I want to hold you!" I had had enough. I grabbed him, told everyone we were done and booked it out of the room.
Today, on a conference call with the immunologist I was told that the reason they can't get blood is he is moving too much and "hamming it up" because I am in the room. Not because he is scarred from all of the blood work. He clearly isn't genuinely freaking out because the three year old child has been stuck more times than most pin cushions. No, it's me. Despite the fact that I was holding him the only day they were actually able to get blood.
I was so pissed I almost missed the lecture about how we had gotten thousands of dollars in free medications and we have to follow the rules. We made a commitment, blah, blah, blah... (by the way, from the beginning it was made clear that we could quit the study at any time).
To stay on the study and continue to benefit from the generosity of the multimillion dollar pharmaceutical company Rainbow would have had to start the week of PKs over. That would have been 5 sticks in 4 days, again.
So, we are off. We are off and looking at an uncertain future. We are off and hoping for insurance approval so he doesn't have to go without medication, without protection, and I have a strong feeling his doctor is in no rush to get that done quickly.
I am terrified and despondent and worried and hurt that people I thought were my allies were more interested in using my child for their own gains.
This in addition to the knowledge that one of the people most dear to me in all the world will leave this earth in no more than a year and the memory of the person who loves me more than I could ever fathom will soon be gone has me feeling like there will never be light again.
I asked on Facebook today "Is adulthood just near constant pain and fear for everyone or are we just special?" Today, I feel like laying down and never getting up again. I'm tired of being "such a fighter" and "so strong." Do you know what I would give to have a simple, normal, scariest thing that happened to our child growing up was a broken arm, kind of life? What I would give to be able to believe that the world is safe?
I'm so sad, desperately sad, and there is no one riding to the rescue.
Until next time...
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