Friday was Rainbow's first home infusion...
It's over and my stomach still turns with anxiety just writing that sentence. I was terrified.
Like, we are going to do this alone? Like, all alone? No back up? No nurses? No cavalry?
What I really wasn't sure about was if I would have to courage to hold my child down while his daddy inserted needles into his thighs in our home. This place is sanctuary. This is my safe place. This is where I come to escape the world, where I don't constantly fear someone sneezing on my rainbow zebra, or tossing a great big grief land mine in my lap (that still happens occasionally but you get my point). This is the place I fight with everything I have to make safe for my family.
I was about to violate that sanctity.
I know what you're thinking... It's to protect him. It's necessary. It's lifesaving for cheezus sake.
Yeah, I know, and he screams
Tears stream down his precious, innocent, three year old face as he yells "I don't want it! PLEASE!"
As I hold. him. down. and someone hurts him. That someone the last two time has been his Daddy. His superhero. I can't even begin...
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| Super Daddy preping the infusion medication |
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| This is after he finaly stopped crying. Can you see how sweaty his hair is? This little man is the face of invisible illness. |
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| The infusion site on his right leg was very painful. If super-Daddy held it in place Rainbow was happy. Daddy sat like that for almost an hour and a half. |
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| Done!!! That's Bumblebee covering our boo-boos. |
It's always rough. Every single time I come away emotionally bankrupt and just trying to pull myself through the next few hours, the next day, sometimes the next week. I'm affected by television commercials, I sob over fictional characters, a news story about an earthquake on the other side of the world can put me under for days.
This is my child. My rainbow.
I'm so tired of hurting, of fearing. The words just aren't coming. It's too deep and scary and overwhelming and today I just plain feel beaten. I feel like I can not keep this up.
Fortunately, contrary to my black mood, my rainbow is kicking butt and taking names. Yesterday he woke up and spent most of the morning tearing through the house as a race car or, alternatively, chasing the race car (aka Daddy) as the police car. We got to spend the day with my family celebrating my nephew's 13th(!) birthday. At one point Rainbow was literally (yes, literally) running circles around the coffee table at my Papa's house.
Thus far this is the first infusion of his entire course after which he has experienced no (zip, zero, zilch, not-a-one) systemic side effects. No fever, no nausea, no malaise, no headaches, no body aches. Naaadaaaa. Aaaaand he hasn't had a migraine in almost two weeks. Before this he hadn't gone more than a few days migraine free in two months.
This morning we went to the new splash pad.
Um, cute much?
There was a scary few minutes after we had played for about an hour when Rainbow just kind of shut down. He just wanted to sit. It scared me, a lot. I think he was overwhelmed. I'm really not sure what I was thinking doing the science museum (see adorableness below), an infusion, a birthday party, and the splash pad all in three days. I think I was so excited to give him the opportunity to do stuff. Note to self: do stuff at a slower pace with the Rainbow Zebra.
The thing I'm continuously learning is to allow each emotion, each place, each moment be its own. The awesomeness that we experienced this weekend, playing outside of our home, no side-effects, are exactly that, awesome. There will come a time, probably soon when I will get to enjoy these happies.
But I get really tired of having to fight for my sadness. The successes, the happiness, does not negate the sadness. The security in knowing that my son is better protected than ever DOES NOT make the torture he endures less agonizing. It just doesn't. People want it to. People tell you it does. It doesn't.
Much like grief, the heart simply expands to accommodate both joy and sadness. There are brief moments when they sit together and my soul finds peace. More often than not they are at war. But the most important point is that one is not more valid or valuable than the other. The pain and sadness I feel watching my rainbow endure his treatments is not less precious than the joy I feel when he runs squealing through the house at full tilt.
The pain sucks, the fear sucks, but these emotions are valid. Please don't try to take them away.
Until next time...
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