The sanctity of Rainbows and Darkness

It's been an eventful few days over here in it's-always-crazy-how-could-it-get-crazier world.

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...

Super Daddy preping the infusion medication 

This is after he finaly stopped crying. Can you see how sweaty his hair is? This little man is the face of invisible illness.

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.

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...

Rainbow update

I haven't written in a long time.

Partially because I'm a level of exhausted I didn't know was humanly possible. I'm one of those people who is too busy to remember to answer text messages or to eat sitting down. I've always hated those people. They make me feel unimportant. At the moment I don't know how to not be one of those people. I'm working on it...

And partially because amid the chaos my shattered mind is working on piecing together what it thinks about some really intense stuff that I'm not willing to sit down and write about yet. Usually when my hands start flying across a keyboard I can't suppress the tumult. I usually don't want to... but this one is too divisive and hurts too much. I'm just not ready.

So... not much writing coming from over here in busy, crazy land.

This morning I am at a coffee shop trying to study for the oral portion of my comprehensive exams. If you don't know what that means you are a blessed individual. Suffice it to say it's the biggest, most terrifying exam of my life. And I CAN NOT focus. See above with the busy and the exhausted...

So what's up with us beyond my mind's constant efforts to keep me as far off-track as possible?

The rainbow had his fourth IV infusion of gamma globulin yesterday. I write a little about his condition here. It is always horrible. The child is only a few days this side of three years old and he has been poked more times than anyone should ever have to endure. Yesterday was worse.

Long story short, our insurance emphatically denied our claim for his medication. Rather than continuing to fight that battle our immunologist worked with our pediatrician to find a way to help us pay for his first three infusions so that he could be enrolled in a clinical trial that will pay for his meds (this stuff is wicked expensive). So, he had to reach a stable point in IV infused medication before he could switch to the clinical trial, which will allow his medication to be delivered subcutaneously (under the skin, NO IVs!!!).

For the past three months, once a month, he has suffered through the insertion of an IV, hours of infusion, then days of side effects post infusion. Drawing blood on a pediatric patient is difficult, threading an IV is... I don't even know... whole lots more difficult.

We are incredibly fortunate that his immunologist is pretty emphatic about being in control of her patient's health. She has an infusion center in her office. She, and her staff, are on hand throughout the process. He isn't infused at a specialty pharmacy or an infusion center that just plugs and chuggs. He sees his doctor or his PA every single visit. This  is apparently quite rare and, holy frick balls, I'm grateful.

The sole downside to this is that his immunologist is not pediatric specifically, therefore, her office does not have pediatric nurses. There is ONE person in the office who can thread his IV (she's amazing by the way). By rainbow's last IV she could hit and thread his IV in one try, which is miraculous. Not this time kids...

Enter back story...

This amazing bright light of a child has endured a host of medical treatments and tests since roughly 30 seconds after birth. He was premature and spent the first month of his life in the NICU, intubations, IVs, wires, UV blankets, alarms... then another month at home on oral caffeine (so his brain wouldn't forget to tell him to breathe) and a bradycardia monitor strapped to his chest (so an alarm would go off incase his brain forgot to tell him to breathe). At ten months old we found out that, as we had feared, his immunoglobulin levels were low. So began blood draws for testing every three months and constant antibiotics, interspersed with flying visits to the E.R. anytime he ran a fever, more sticks, more blood work... A visit to the Mayo Clinic... more sticks, more blood work.

Then, roughly four months ago came the news... this is for real... this isn't transient. He is immunodeficient.

You guessed it.. more sticks, more bloodwork... and now, IVs

All that to say this kid is so very D.O.N.E. and I don't even kind of blame him for a second. He's not even pretending to be patient with our needles anymore. He starts screaming and kicking almost as soon as he sees gloves.

Annnnnnd... a little over a week ago he broke his collar bone.

Freaking out three year old with a broken bone that can't be casted who has to have blood drawn then an IV inserted...

Ugh, is anyone still with me at this point?? So this is where we are. Yesterday we suffered through SEVEN needle sticks. SEVEN!! In. One. Day.

No kid should have to endure what this child endures... none.

Oh, and did I mention the migraines? Yeah, those too because just wtf?

We have pushed through the last four months of horrors to get to next week. Next Thursday he will have his first subcutaneous infusion. This means that he will NOT have to have an IV. He will have to have blood drawn, which really sucks, a lot, but no IV. No more IVs for at least 6 months. I think that is the only thing keeping me from completely and utterly just fricking losing my mind.

I think I'm supposed to write some nice, pretty conclusion where I say something positive and leave you all feeling great about your lives but I just don't have the energy. If you guys have any to spare send some our way. Feeling stupid levels of done.

Until next time...