Oy with the poodles already!

Disclaimer: If you do not understand the title reference then I am sad sad sad that you have not discovered and obsessively watched the best show ever made: Gilmore Girls. My most favoiritist show in all the world. 

Oy with the poodles already!

So, pain... I have a bit of a knack for metaphorizing (is that a word? Well, it is now) emotional pain. It's central to my life. It's all day, every day, influences and underlies everything I do. Emotional pain I get.

But this post is about physical pain y'all.

Ho-ly CRAP.

Turns out I likely have a fun fun fun connective tissue disorder called Ehlers Danlos. A few months ago someone set fire to the low-lying-I'll-just-ignore-it pan in my back and joints and put sedatives in my drinks. 

Lets back up a bit so we can do that fun pan in thing movies always do.

When I was about 13 I blocked a shot in a basket ball game and ripped all sorts of muscles in my left shoulder. As a result I was immobilized and had to sit out two weeks of basketball games. At this point in my young life that was maybe the worst thing that could have possibly happened so when I was finally allowed back on the court I emphatically insisted that I felt fine, my shoulder was fine, everything was just fine, peachy in fact.

It wasn't. I managed to hide the pain until my shoulder started randomly falling out of "socket" (the quotes are because the shoulder isn't a true ball and socket and I'm a scientist and I just can't) and my mom was like "um, no." Long story short I had to have my rotator cuff surgically repaired then spend 6 weeks completely immobilized in a "gunslinger" brace (imagine the most obvious back brace you can then add and equally bulky arm piece sticking straight out at a 90 degree angle with an oldschool video game stick at the end; yeah I was cool) then three months learning to move my arm again. I started practicing again before I was released and less than a year later had torn the other shoulder (repeat above surgery, super sexy brace, and PT) and then quickly retorn the first. 

All that to say upper back/shoulder pain was pretty much the norm for me. From that first injury on I don't remember my shoulders and back ever not hurting. It was my normal. 

Follow this with bursitis and tendonitis in my knees (which I wrote off to being a runner), a slipped/bulging disc in my lower back, temporomandibular joint disorder (my jaw locked down completely about two years ago), and "flares" when every thing hurt so bad I couldn't open a pickle jar occurring with increasing frequency and I probably should have clued in that maybe I'm not the normalest human physiologically. 

Turns out I'm not. After two solid weeks of hurting so much at the end of the day that I could barely participate in getting my kids into bed I broke down and talked to my doctor. My likely diagnosis (pending testing and consultations with, you guessed it, a battery of more doctors) is Ehlers Danlos and Mast Cell Activation Disease (maybe I'll write another post about how my food sensitivities nearly put me in the hospital a few years ago but I'll spare you now). 

I had never heard of these conditions, like ever. Last week we went on the Rainbow's doctors world tour (we saw 4 doctors in 7 days in 4 different towns and 2 different states) and it came up TWICE! New neurosurgeon (talking to me) "I was looking at your hands and was going to ask if anyone in your family has Ehlers Danlos." After leaving I realized I was too distracted by the on-going discussion about possible cranial surgery on my 3 year old to ask him: "My hands? Whaaa?" because in this context we were discussing the likely possibility that my Rainbow shares this shitty condition. 

Oy. with the mother friggn. poodles. al-ready.

Oh... and the Chiari Malformation... I may have that, too.

You know what that means? That means that these two debilitatingly painful, dangerous conditions came from me. It means that I gave him this and now I know how painful it really is. I can now look back and see so many times that fit perfectly. So many weird dislocations and subluxations, so much damn pain... I gave it to him. There is no cure, only "pain management." 

All I want in all the world is to protect my children an my very DNA poisons them. Sounds so dramatic but, for the love, it's true and it hurts and it sucks and I'll be danmed if he is going to hurt like this his whole life. 

For the eleventy-gazillionth time she thinks "Why didn't I go into medical research!?"

Signing off from my bed where I am propped up on 6 different pillows so I can whine at y'all from the perfect angle.

Until next time...

Well hello there...

I've heard child death described as an amputation by those trying to find the words to explain how it completely changes your life. I think this is as close as you can get to explaining it in a physical way. Except it's a double amputation performed without anesthesia, you're wide awake and helpless, feeling every single stroke of the blade.

For me, the pain knocked me out, for a year.

I've said before that I was something resembling comatose for a very very long time. I screamed and cried and agonized. I remember very little of that year.

Now, four years later... how has it been four years? I rarely have panic attacks and I can function pretty normally. I laugh and I mean it. My legs are gone forever and the pain never ever recedes but I've learned to function and find moments of happiness.

I find myself hesitant to talk about the good moments because people latch on to them like they are being sucked into a jet engine and refuse to acknowledge the swirling agony that underlies every smile. "I'm glad you're doing so well!" Um.. I'm not doing so well. I'm not all better and I'm so done with a society that glosses over pain and grief and the reality that is death. We will all die y'all. But I digress...

I tend to think I've reached a plateau of learning to live after Damon's death. Just learning to leave the house was a straight up vertical climb. Grounding out panic attacks, having conversations... seriously this was insurmountably hard for a long, long, long time. It was so damn hard to talk to anyone about anything. I could not do normal. I've worked so hard to get to a place where I can converse with other human beings, take my son to the park, laugh at my husband's terrible jokes, lecture a classroom full of undergraduates, present at scientific meetings... all of these took concentrated, purposeful effort to recapture, and still do, every time.

So, it has been a weird, uncomfortable surprise to realize that, without purposely striving for it, I've reaccessed a part of me that I didn't even realize existed. Now that this part of me is growing I remember, of course, but I didn't.

I don't know how to explain what this new/old thing is other than to say I want to do things... with people.

Um... yeah, everybody wants to do things Jodie.

Nope, not everybody. Not me, not before about a month ago. If you saw me doing things it was because I needed to do those things. There was a conscious effort in doing those things. I need to do this for my career, I need to do this for my kids, I need to do this for my husband, I need to do this because I care about this person and they've asked me to participate in the thing. I didn't want to. I wanted to go home, always. I wanted to go home and be safe inside my walls with my little family and dis-a-freaking-ppear.

I first noticed this weird new/old sensation when I was at TJ Maxx a while back. There were a few women there, obviously a group of friends just out spending the day together, and I ached. The moment was weird and disorienting. I didn't understand what I was feeling or why I was feeling it. Things like this kept happening, pictures of friends hanging out on social media (I know, it's the devil but there it is), mentions of going out to dinner, or some event participated in and I ached.

I can remember my close friends (most of them very far away physically) saying things like "I miss you" over the past four and half years and not being able to access those emotions. That part of me just wasn't there for me yet. I honestly didn't think it ever would be. This weekend when texting with a friend, who has undoubtedly considered just throwing her hands up in frustration with all the effort she has put in to staying in the relationship with almost no reciprocation, and I realized that I miss her.

I told Hubby this weekend that it's as if this part of my personality lay dormant longer than my consciousness and only now awoke to realize I've stranded it on  deserted island. Because I did. I withdrew from everyone and everything. There is nothing wrong with what I did. I had to but it has certainly left me very alone and entirely unsure of what to do about it. The fact remains that I'm super-dooper-crazy levels of broken. Even without the broken I'm super-dooper-crazy levels of introverted. Long story short, people freak me out, people in groups horrify me. Still, I want to do things... with people (or maybe person, maybe no more than 3 people at a time, did I mention I'm broken?).

So there it is world. I'm lonely... weird.

Until next time...

Where is that white horse?

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...

Where do I start?

We saw the first neurosurgeon a few weeks ago. He feels strongly that Rainbow's headaches can be managed pharmacologically rather than surgically. This is very desirable because surgery is very very dangerous for Rainbow. We have to see a neurologist to get started figuring out if there is a medication that will work for him. Neurologist isn't scheduling until January. Called around, pretty much everyone who is taking new patients is scheduling roughly that far out. We see the next neurosurgeon Oct 26th. Rainbow is no longer allowed to play on trampolines or in bounce houses because his Chiari Malformation makes those activities dangerous. His trampoline is his favorite thing in our back yard. Suck.

Additionally, Rainbow has a "malformation" of his back (his musculature is very asymmetrical and his spine is slightly "bent"). We showed this to his neurosurgeon and he said "Yeah, that's weird. He needs to see an orthopedist." Is anyone keeping up with the doctor count? Appt with the orthopedist in a few weeks. He also has symptoms the neuro doesn't think are associated with his chiari and may be autoimmune (Pediatric Rheumatologist for that one, add another).

Last week Rainbow had a random (very low) fever, no other symptoms at all. We consulted with his immuno and it resolved on its own and we thought "huh, weird." Last night he woke up freaking out because his head hurt (not really all that new) but when I went to put my hands on his head he was burning up. His temp was 102. We spent a good amount of time on the phone with his immunologist's office (the on-call doc was new to us and was freaking awesome) and three hours on the ledge of "which is more dangerous taking him to the ER or keeping him home?" It took ibuprofen and acetaminophen to break his fever but then he slept from 3am - 7am. Woke up a little grumpy but ate and had no fever.

Dr D's (his immuno) nurse called at 8:15 "how soon can you get him here?" Um... crap, that's not terrifying.

His immuno did a full updated history, spent an hour with us, did a full exam, and.... nothing. Like, seriously, nothing. He doesn't even have a runny nose. That probably sounds like a good thing but to us it's scary. We don't know what we are dealing with.

She ordered bloodwork. Being the boyscouts that we are we were prepared with this numbing cream (don't leave home without it). So, we slathered it on and waited for it to do its work. We went to our usual blood draw lab (how screwed up is that, these people know us on sight) and Raz screamed and screamed and screamed. The phlebotomist hit a vein twice, I saw it, the blood wouldn't come. The phlebotomist's acted like this was the weirdest thing they had ever seen, awesome.

I slumped down to the floor and called his doctor. She didn't want him poked again. He's too worn out. He needs to hydrate like crazy and we will try again tomorrow. If it doesn't work we will have to go to the hospital where they have ultrasounds to do this...

He is sleeping now.

The Neurosurgeon

I do this thing when I'm freaking out. I research. I read and read and read and read and look up terms and read some more. In preparation for this appointment I read every paper this neurosurgeon had published in the last twenty years. I also read a bunch of related papers.

I think I do this because it makes me feel like I have some semblance of control over the situation, and because I'm a scientist. Research is what I do.

The thing is, in all of these papers, cases where Chiari Malformation was successfully managed non-surgically were never mentioned. We went into this appointment certain we were looking at an inevitable neurological surgery, on our immune deficient three year old. On the drive there we were both jumpier than a long tailed cat in a room full of rocking chairs.

So. Much. Fear.

Then, a crazy thing happened. We were given hope. We were given hope that our child may get to live a normal(ish) life without anyone ever slicing his head open...

We spend A LOT of time in doctor's offices. While we've developed strong relationships with Rainbow's regular doctors and feel heard by them anytime we see a new specialist we brace to be rushed and brushed off. It's exhausting and frustrating and infuriating. Dr. Mapstone asked tons of questions, examined Rainbow, then sat with us comfortably in absolutely no rush and talked with us about his evaluation. He took Rainbow's immune deficiency very seriously and factored that into his decision about whether or not to recommend surgery. He answered every question we had honestly. We felt heard and we felt that this doctor was going to make decisions with Rainbow's quality of life and health as his foremost concerns.

The bottom line is that there is a very strong possibility that we will be able to manage Rainbow's Chiari Malformation medically, avoiding surgery, possibly forever. If we can, working with a neurologist, find a medication that manages his pain without unacceptable side-effects then he will have an MRI once a year to evaluate his Chiari and go from there. The doctor made it very clear that if his pain cannot be managed or if he develops other symptoms Rainbow needs to come back to him as soon as possible.

We have a plan.

There are so many unknowns and this neurosurgeon was also very upfront about the controversy in his field regarding the best course of treatment for Chiari. Some of the other neurosurgeons with whom we've consulted are more aggressive in their treatment and we still have an appointment at Dallas Children's next month.

We will be adding three more specialists to his team to evaluate an apparent spinal malformation, to possible remove his "huge" tonsils, and to determine if he has Ehlers Danlos Syndrome or possibly some other condition causing the odd sensations and pain in his limbs.

But... No one is going to be cutting his head open in the foreseeable future and I'll take that.

Until next time...

Eff. Word.

Today Rainbow had an office infusion. We infuse 3 weeks a month at home, the 4th week we have to make the trek to a nearby town, endure a blood draw, and infuse at his immunologists office. We don't usually see his doctor on these monthly sojourns. He has a separate appointment with her every three months or more frequently as needed.

I was running behind the hubs and Rainbow and as I walked into the infusion room hubby looked at me and said "Dr. D is coming to talk to us."

Eff. Word.

That's not good. That's never good.

The thing is just two days ago Rainbow underwent a sedation MRI. His immunologist and a neurologist who spent all of 20 minutes with us (not a fan, in case you can't tell) both suspected he had a certain condition. The MRI was to determine if he did.

He does.

Rainbow has a Chiari Malformation.

His increasing number of migraines, he whole body aches, his frequently "cold" hands and arms... because there is something wrong with his BRAIN.

For ****s sake! Are you serious?!

The treatment is decompression surgery. They will have to cut open my three year old's skull and through his meningies to relieve the pressure of his swelling brain and provide the space for his cerebellum to lift out of his spine.

See cussing above.

We're seeking appointments with at least two Chiari specialists. As much as we are desperate to fix this we are more desperate to be absolutely certain every question is answered, every base is covered, and we secure multiple professional opinions. So, we are likely on a months long journey to major surgery.

Eff. Word.

Until the next crisis...

We Fight

Some time back in a conversation, I think subsequent to one of my FaceBook posts, a few friends and I were discussing our children. We were discussing our love, our fear... our fight. At some point someone said something like "what can we do?" The response "We Fight."

"We need that on a T-shirt" my friend, yoga teacher extraordinaire, and therapist said.

Later, one of the most supportive people I've ever known, a person I've met in person all of twice but loves our family more steadily than most I see every day contacted me. She asked me to create a piece embodying that fight to be used as a fundraiser for our family. For our fight for our rainbow. For our fight for our eldest.

And I did.

And Kathryn Hager at LITTLE h CREATIVE turned it into this amazingness: 

This is for the fighters. I know there is power in our armor. This is why I wear five circlets, permanently inscribed on my skin. Two parents, three precious boys, always 5. This is why my wrists, toenails, and neck are always adorned with orange, for Damon. Why 19 orange flowers flow from my hip, where Damon sat, to my chest where he laid his head for nineteen too-short months. Life, is hard. We fight.

We fight, as a semicolon because it has come to represent the pause. A pause, a choice, to keep fighting. A pause where there could be a stop. This is the endless treatments that stave off the stop, keeping our children alive, beautiful, healing, mentally and physically. This is the quiet desperation of our tears in the silence when we are simply sure we can not keep going, then we do.

Wings of fierce protection encircle the pause. We stand guard over our precious children, buffeting the wind, providing the warmth of our love, giving them every ounce of ourselves in the moments of pause. We protect them, with everything that we are. The wings represent those guardians who encircle us as we stumble, as we cry. Those who give us space and permission and warmth to be who, and what, and wherever we need to be along our path.

We fight so many battles, illness, depression, anxiety, grief... these are just the ones intimate to my struggle. This is for the fighters and, more importantly, what we are fighting for.

You can purchase the shirt here. Please share. I know there is an army of fighters out there.

Until next time...

Chronically Ill

The fact that my child is chronically ill isn't something that I think about a lot.

I think about how to keep him healthy. I think about washing his hands and making sure every vehicle is stocked with sanitizer. I think about making sure we have his infusion meds stocked. I think about his temperature. I pay excruciatingly close attention to his behavior. I'm on alert for any migraine "tells" and a thousand other things but that's just how we live. We live our lives on high alert.

Then, there are times like now.

Now I feel like "chronically ill" is an appropriate moniker.

Most of the time Rainbow lives his life fairly normally. He plays and reads books and goes to the park. Since stabilizing on IgG infusions he even goes to the children's museum. Most of the time the fact that he can't go to pre-school or be around his cousins if they are sick and keeps us all vigilant about sanitization just feels like life. Most of the time it isn't obvious that he is sick.

Then, there are times like now when its obvious he isn't a normal kid, when he fights rolling migraines for two solid days and new symptoms are appearing for which his team has no explanation. Days like today when, despite our fears regarding the list of medications his little body must filter, we can't take even a short break from the meds or he devolves into systemic pain.

Despite all that, because his body doesn't make a key component of his immune system, we have to infuse today.

My child is chronically ill...

I think it's weird how people will try to take that away from us. Much like the way people try to white-wash grief, we are supposed to act like its all ok, we are supposed to say everything will be ok, we are supposed to be strong, "focus on the positive," and only acknowledge those rare cases of people who live "perfectly normal lives."

My son is three, he has endured 76 needle sticks (that actually got documented), 26 nights in the hospital, a lumbar puncture, 17 X-rays/CTs/MRIs, 10 (and counting) infusions, and 56 other various procedures. He has been up in the wee hours of the last two mornings crying because his head and body hurt so badly.

I'm so tired of the cultural expectation that we all act as if our struggles are minor. I'm tired of people's impatience with the suffering of others. In the end, it's entirely selfish.

My grief makes people uncomfortable. Rainbow's illness makes people uncomfortable. Maybe it would be better for our world if we were all a bit more willing to be uncomfortable?

If it isn't obvious by now I'm not in a particularly good place. I'm tired, so damn tired and, on the whole, if you're reading this you've accepted our struggle into your life. For that, I am immensely grateful, more than you will ever know.

Until next time...

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...

Cry

Emotional turmoil and short tempers alleviated only nights spent in tears are not uncommon over here. We're all seriously, deeply, irreparably damaged.  We hurt always, we miss always, we are shattered always

But March is its own special hell

The pain, the wrongness settles over us like a lead cloud. Sometimes we spend half a day thinking "what the crap is wrong with me?!" and then the realization hits... it's almost March. My stomach hurts the whole month.

This is an always for the hubby and I. It never gets easier. We never get use to it. I cry... a lot.

This is the first year that March has visibly taken a bite out of my eldest child. He's been angry, then crying, then exhausted, then angry. He can't nail down where the blackness is coming from so he strikes out at everything desperate to annihilate the source.

He curled up his five feet and ninety pounds in my lap two nights ago and full on sobbed.

I stroked his hair and said "Just cry, just cry, just cry"

I've learned that grief, and honestly just being human, takes a lot of space. Much of that space we need granted from those who love us. We need space to hurt, space to rage, space to cry. And we need that space to be safe.

I'm still terrified of opening the doors to my pain when I'm alone. I'm afraid that if I do it will suffocate me. I'm equally afraid of exposing that pain to 99% of humanity. My husband is my safe place. He just lets me cry. I just need to cry, without question, without "comforting words," without for-the-love "don't cry."

I never never never ever tell my children "don't cry," never. Tears are healthy, tears are healing, tears are bought at an unfathomable cost.

Sometimes you just need to cry.



Until next time...

I'm the Rainbow Baby!

I think anyone who knows our Rainbow would agree that the kid has personality. He lights up and fills up most any room he enters. He's always been that way, a charmer.

We really never dreamed that we were only seeing part of what he had to offer.

Rainbow had his first immunoglobulin infusion two weeks ago. I'm not even gonna try to explain how hard it was... it was hard. He was sick for four long days after, while his parents cried and fretted and wondered if we had done the right thing to put our two year old through this.

As he started to emerge from the headaches, fever, and nausea we were so happy to see our bright light return. Then something new happened. He started to run circles round and round the back yard, pretending to be an airplane, chasing his daddy, winning all of the races "I win!" His baby sitter started telling us that he was different... that he has more energy. Then, this week, he started to eat. As in first breakfast, second breakfast, elevensies, lunch... you get the picture.

Yesterday Hubby and I were talking and failing to notice Rainbow's adorable antics so he shouted "I'm the Rainbow Baby!" with a huge grin...

I think if his caretaker wasn't absolutely insistent that the kid is different we wouldn't believe it. We would tell ourselves that we were imagining it, that it was wishful thinking. After all, he has always been incredible... always.

Hubby and I have each sat on the floor of the bathroom while he bathes most every night marveling at the fact that the only medication he's taking is Zyrtec. Never, never in his life has he been on only an allergy medication!

We were so afraid, afraid of the side effects, the horror stories, the many many things that could go wrong. It was rough and in two weeks we do it all over again but for today I am basking in my Rainbow's light... and trying to keep up.

Until next time...

Come at me bro

I joined two facebook communities for people with Primary Immunedeficiencies (PI). Some days I think that was such a total and complete mistake. One of them is a community for "Zebra Moms." Of course this is where parents facing the fear and battle of raising an immune-deficient child go to tell their horror stories... no one else understands, but I'm starting to wonder if I can continue to read these stories and maintain my sanity.

I've been reading about how these kids have to stop their infusions because insurance wont pay or because a doctor just isn't convinced that there is "actually" anything wrong. It makes me crazy. I reply over and over and over "trust your instincts momma and keep fighting until the doctors do, too" It's everything I wish I had done and everything I'm doing now.

These posts have also made me realize something. Yes, we are battling the insurance company, yes, this treatment is going to be hella expensive, yes I'm terrfied, yes yes yes...

But we also have two doctor's offices going to bat for us, calling every available resource, faxing in paperwork, filling out claim forms, calling us to check in, emailing every other day. I have a "little" brother who organized a gofundme campaign that has raised more money than we could ever fathom and is threatening to kick someone's ass if more doesn't come in (ya gotta love that about brothers). And we are far from defeated. Unlike those who are unuse to having the crap kicked out of them daily we get up of the ground, wipe the blood from our wounds, and say "bring it on." We're fierce as all hell people and we are going to get our child what he needs, period.

I suppose there is some twisted sort of power that comes from knowing the worst. The worst is not a second mortgage. The worst is not weekly or even daily trips to a phlebotomist or IV tubes connected to my son. The worst is a casket.

I'll do whatever it takes. That, my friends, is power.

Until next time.

the helpers...

I've heard it said in times of distress "look for the helpers."

I would really like to be a helper but for nearly five years now that position has been far out of my reach. When you're held together by saran wrap you really cant effect much good in the world.

I had a particularly bad episode these last few days, worse than I've been, I think, since the year after Damon's death. All I wanted to do was lay down and die. I couldn't think. I couldn't function. I can only write about it now, as the cloying black fog has started to recede from my vision, the weight lift from my chest... a few days ago I couldn't have put these sentences together.

I'm not afraid to tell you that part of the relief is chemical.

I am depressed. I have PTSD. I have anxiety.

All but the PTSD were present before Damon died. It's chemical, biological. I could go on a long rant about my complete impatience with the perception that "mental" illness is not actually a physiological illness but I leave it at this: Its body chemistry, no more under a person's control than asthma.

I live my life on an antidepressant. I keep anxiety meds near by. Sometimes, though, I have to come at the thing with a double barrel shot gun rather than the more subtle knife's edge approach I prefer. It was a double barrel shot gun kind of black.

Its weird how the depth of pain, anger, depression, guilt, fear, you name it, can take me from behind with a knife at my throat. You would think I would know its scent too well, feel the prickling on the back of my neck, heed the signs. Sometimes I just don't know its coming.

In the middle of Walmart, totally unprepared, it took me. It's been a while since I had a full-on, vision-blackening, heart-racing panic attack.

They give you tools. You're supposed to anchor, find 5 things you can see, 4 things you can touch... so on. The thing about panic is, your brain sort-of (completely) stops working. Those tools go out the window and you start to panic about panicking.

I managed to make it home, chalk that one up to experience. My helper, my husband, my rock was stationed on the bathroom floor reading a book while lending moral support to our potty-training rainbow. I crawled into his lap and just went sill. He didn't ask any questions. I don't think he said anything at all. He just gently started running his fingers through my hair. He stayed there with me, on the floor, between his naturally-needy 2 year-old and his emotionally straight-jacketed wife until I started to come out of it.

He gently eased into the parenting lead that day, like he did for nearly a year after Damon's death. He was patent for the days after while I slowly regained my strength. He let me cry in his arms and never questioned me.

He never does.

In all the tumult that is me, the wild flying emotions, the highs and lows... He never questions me. He never criticizes my "crazy." He just quietly waits.

He is my greatest helper.

I often wonder what it must be like for him, to be the backbone of such a devastated family. To hold the highground in a constant onslaught. I don't know but to say I'm glad he does would be a grievous understatement.

It is my tendency, perhaps my nature, to never shut up... to question, and blab, and even to criticize things I don't remotely understand. I don't know where I would be if he were like that but it wouldn't be anywhere good.

Here's to all of you helpers, thank you.


Until next time...

We're in

Since finding out that Rainbow is terrifyingly underdefended by his own immune system we've been battling to find a way to pay for his treatment (insurance is not interested, awesome). I don't know how many hours I've spend on the phone, filling out paper work, back on the phone, researching Primary Immune Deficiency websites... you name it, I've done it. I've been a woman possessed.

Yesterday I got an email from the infusion nurse at Rainbow's Immunologist's office

I think we've come up with a solution
Call our research director at ###-####

I called
Voicemail

I thought my head was going to explode. I cranked my ringer as high as it would go, shoved my phone in my pocket, then proceeded to take it out and look at it every 30 seconds... because, you know, maybe I missed the call.

5pm came and went, no call

That's ok, they call me after 5 fairly frequently...

5:30, holy crap I'm going to have to wait until tomorrow?!

6:00, resignation...

6:30, my phone rings

It was her. It was her giving me hope. It was her telling me that if we can get Raz stabilized for three months on IV infusions she can enroll him in a clinical trial that would give him free meds for 6 months. Six months is a long time. Six months is a lot of money and this means he could start getting protection soon, really soon.

"You don't have to make a decision now," She said, "I'm going to email you the Informed Consent. Take your time and read it and I will answer any questions you have."

In case you're wondering "Informed Consent" is a pseudonym for "Terrifying document outlining every possible thing that could go wrong, no matter how remote, and detailing every agonizing time your child will have to be stuck with a needle to put stuff in or pull stuff out."

I rode a high of relief through dinner and started reading the document of terror while Rainbow played in his bubble bath.

I had to remind myself roughly three-thousand times that this is something he must have. This isn't a medication he needs to improve his quality of life or diminish pain this is a medication he needs to stay alive.

I've read A LOT about gammaglobulin replacement in the past few weeks. Every medication comes with the same risks, the same list of possibilities. This list was no different but the beast I had been fighting, my primary worry "how are we going to get him what he needs?" had sustained a wollop that would take it down for a good 6 months.

Without a monster to conquer I had to face the reality that, likely for the rest of his life, my son will need a blood product to survive. A blood product that has to be introduced to his little body through needles. A blood product that must be constantly monitored through blood draws, at some points on back to back to back days.

Hubby is glad for the caution. He's glad they will be obsessively checking his blood over and over and over and over, making sure he is ok, making sure his body is tolerating the foreign presence, making sure he doesn't have an infection.

I'm just afraid for my child.

Repeat the mantra "he needs this to survive"

"he needs this to survive"

"he needs this to survive"

I emailed the director this morning

We're in, we're terrified and worried but we're in.



Until next time...

That moment when...

Nine, very close to ten... the number of years since my eldest made me a mommy.

Sometimes, I think he feels lost in the shuffle. He lives between one dead brother and one brother who is constantly the center of tests, and fear, and caution.

"You made me a mother" I told him a few months back. "Before you I had no idea what love was. You showed me love."

It's true. My eldest taught me love.

Tonight, after bed-time snacks, and baths, and tucking into bed he called me into his room. Another thing this sensitive child has taught me is to read between the lines. Expressing the fear and pain that lives inside him is difficult. This kind of thing is difficult for adults. Tonight, he was worried about his little brother. He was worried he would die. He was worried he would be the one to get him sick...

We all are.

It may be a mistake. I know we all need security. We need our false sense of safety and control just to function. My tattoos make me feel like I have a choice in something. Organizing my house makes me feel like I have some semblance of control over something. I don't but I need those moments. Still, I refuse to tell my eldest that everything will be ok. I refuse to tell him that Rainbow will stay healthy, that he will live because I don't know that.

I feel like I was lied to my whole life. I was coddled with the false security of a protective deity. The failure of the illusion, second only to the actual death of my child, has ripped my world apart.

I wont do it to my son.

The best I could give him was "me too" and "I love you so much" and "We will all be so careful."

That moment when your nine year old is afraid he will accidentally kill his little brother... just another day in my life.

Until next time...