Sunday, September 17, 2017

It's possible

Yesterday was my husband’s birthday.

To me, birthdays mean a lot more than a celebration and cake and presents. To me, birthdays mean that I got to spend another year with this person I love. When you only get one, single solitary birthday, ever, with someone you love things like birthdays change in your heart.

If you’ve read much of what I write here, you know that my husband is the rock of this family. You know that he held us together through the aftermath of Damon’s death, holds us together still as the waves swallow me and regularly render me helpless. You know that he held us together when our Rainbow was born premature and he had to leave his wife alone in a hospital bed and follow an ambulance carrying his infant son. You know he woke with me every three hours for months to help me as I struggled to feed our baby from my body, desperate to provide whatever protection I could. You know I adore him and that he deserves it.

What I want you to also know is that it’s real. The crazy, obnoxious, over-the-top adoration I blubber on about here is real. It isn’t a “public face” fabrication or my way of trying to convince myself we are ok.

The reason it matters to me that you know it is real is this:


It’s possible to be wildly, passionately, soothingly, simply in love.

It’s possible to feel magic in someone’s touch.

It’s possible for that magic to get stronger the longer you’re together.

It’s possible to be someone’s perfect match and for someone to be yours.

It’s possible to fight for your relationship and to win.

It’s possible to forgive, really truly forgive, even really big stuff.

It’s possible to want nothing more in all the world than to be blessedly alone, and to still be wildly in love.

It’s possible to have great sex, often, and for it to feed your soul, not just your body.

It’s possible for true love to start in a bar or a church or a school… and it’s possible for it to start of rocky, really rocky and still be real.

It’s possible to be impossibly irrevocably broken and still in love, still worthy of love, still able to give love.

I really don’t think until my husband and I had been married a good 4 – 5 years that I finally started to settle in and believe this lovely madness wasn’t going anywhere. I finally started to trust that we were going to make it, not just make it, but want to make it, together.

No one ever told me this kind of love was possible, or even real. I didn’t think it was. I didn’t know to look for it, to hold out for the one person that could calm my ever-rolling internal chaos. The one person who is home.

It is possible.

It is possible.

Happy Birthday to the one, murmur.  

Tuesday, July 25, 2017

The fallacy of bootstrap pulling (I'm pissed and it shows)

I grew up with the very southern mentality that everyone should just pull up their bootstraps and work harder. If you just work harder, try harder, if you're just good, it will come around. Things will work out, things will be good, if you just keep trying.

This mentality is bullshit and its harmful.

See, the thing is there are lots and lots and lots and lots of admirable marvelous people who are busting their asses, trying to keep food on their family's table, trying to keep their babies healthy, trying to get that raise, trying to beat that disease. And it just doesn't effing work that way.

Some people just plain start life a thousand miles behind the privileged, or a hundred miles behind, or ten... And when you start behind you tend to get kicked down a lot more. And when you get kicked down what resources you have managed to scrape together (if you've even managed to scrape any together) are decimated. Emotional resources, financial resources, social resources.

The people reading this who've had generally happy lives, whose (allbeit imperfect) parents raised them with love, who had money to have interesting experiences, who lived in a safe neighborhood, who weren't belittled for their skin color, religion, sex, or sexual orientation, who didn't graduate from college with hundreds of thousands of dollars in debt, who got to go to college, whose children are all alive and healthy, will probably find this offensive, because you don't see your privilege.  You think we should all just try harder.

Well, I graduated from highschool with honors, graduated from college with honors, have 13 years of higher education in, what I am realizing is, one of the most demanding and rigorous disciplines. I have a list of honors I could bore you with but I wont. I did most of my master's as a single parent, still have that boring list of honors. A year into my PhD my child died. You have NO IDEA... you just don't. A year later my youngest was born. He was born beautiful and perfect and his body doesn't work right. His immune system can't fight infection. Still have the boring list and am less than a year away from the highest degree anyone can earn, anywhere.

What prompted this rant you many wonder?

Yesterday we received test results for my Rainbow's vaccine challenge. When you are vaccinated your body responds as if you were infected (this is why you often feel sick after a vaccine). As a result if you ever do encounter the pathogen against which you were vaccinated your body is ready. This is a really big deal. Vaccination takes advantage of the way your immune system naturally works. So, a vaccine challenge tests whether or not the immune system is recognizing and arming itself against pathogens.

His isn't, not even a little bit. His numbers were actually LOWER after the challenge than before. He had zero response. His body didn't react.

I. am. devastated.

I had let myself hope. I had let myself hope that maybe, just this freaking once, whatever asshole cosmic force that hates our guts would cut our baby a break.

I let myself hope. I let myself believe that all that work. All that "being good" would matter.

It doesn't matter.

I always tell my kids that their behavior and choices are about them, not about rules, or what other people think, but about the person they want to be. I believe this and I haven't done the work I've done, tried to be an attentive and loving parent and wife I've tried to be, the trustworthy student and friend, because I want accolades. I do it because this is the person I want to be.

But my above statement holds. You can't pull yourself up by your bootstraps guys. That is the illusion of those who are already up.

When the country loses its mind and thinks its ok to take healthcare away from your immune deficient four year old - you can't effing bootstrap that.

When the country loses its mind and defunds your area of expertise so most of the people you admire aren't finding jobs (meaning your wont either) - YOU CAN'T BOOTSTRAP THAT

When your 19 month old baby dies in your arms and you are never ever right again

When your Rainbow baby has to endure endless pain, and tests, and fear

There is no pulling yourself up by your bootstraps... I know, I've been trying for years.

I'm tired. I'm scared. I'm sad and I want to quit... only there's nothing to quit.

I don't need platitudes, so just don't. Don't tell me its going to be ok, for the millionth time it wont be. Don't tell me to keep my chin up or whatever other stupid, meaningless thing you're thinking about saying that would just make it hurt more.

Just don't.

Monday, July 3, 2017

Well, I'd be happy to

My Papa died very recently. He was one of those very rare people who always meant what he said. There is so very much about this man that I miss. Grief and I know each other well and while this type of grief is clearer I know that the ache will never leave.

But unlike with Damon's death I can look back on my memories of this man with a mixture of the ache and the joy. His last name was Lovejoy and never in all of human history has someone so embodied their name. I wrote for his memorial service "to me, Papa was walking, talking, whistling, smiling unconditional love" and he was. To be the focus of his attention was to be in a place where you were protected, safe, and loved.

There are a million of his characteristics that I hope to embody. His incredible kindness. His unabashed generosity. His smile. His organizational skills! (seriously, his garage is a thing of beauty). And my mind overflows with memories of him, often accompanied by the smell of fresh cut grass (my sister-in-law calls his ability to keep a perfect lawn one of his "spiritual gifts").

Among all of this, something I heard him say every single time I saw him sticks in my mind.

"Well, I'd be happy to!"

I can hear his voice.

If you ever asked Papa to do anything this is how he would respond.

From my boys asking him to get out his stash of toys to me asking for much bigger favors that was always his answer; he would be happy to.

Every single time I heard him say it I made a conscious effort to answer my family this way. I wanted them to feel as loved as this man always made me feel and this phrase, to me, embodied so much of who he was. I failed... miserably.

In my defense it's really hard to say "Well, I'd be happy to!" to the 47th "Mooooooooooooooommmmmmm!!!" Nevertheless, I kept trying, and I kept failing.

In the past few weeks, however, I've found this answer creeping naturally, unconsciously, into my responses. I don't say it exactly the same. I say "I wouldn't have it any other way!" when my Rainbow wants to help make pancakes. I say "Sure thing, love!" and occasionally I manage a "I'd be happy to, baby."

The point isn't the words exactly. The point is that I had the rare good fortune to be loved by a man who meant what he said and always said "Well, I'd be happy to!" I knew he was happy to and I want my babies and my husband to always feel some of the golden warmth my Papa radiated filtering down through me.

I consider this the last of so very many gifts my Papa gave to me.

Papa with the eldest

Papa with Damon

 Papa with my Rainbow

Sunday, January 22, 2017

fireworks and sunshine

We met with Rainbow's new(ish) immunologist a few weeks ago. I've been processing the news we got since then (it's not bad).

Rainbow is immune deficient, specifically over the past roughly three years his immunogobulin (antibody) levels have steadily declined. Immunoglobulins are sort of like your soldiers. When you hear about your immune system having a memory these are a large part of that, they do A LOT of important things. You can find some info about immunoglobulins here or here in case you'd like to learn more.

A year ago the three immunogobulins we monitor IgG, IgM, and IgA all declined below normal ranges (A & M were really really low). As a result we switched from prophylactic antibiotics to manage his deficiency to IgG infusions. Thus, while we do monitor his IgG levels they aren't really telling us anything about his native immunity. His IgM and IgA might give us a little bit of insight, however.

Fast forward to two weeks ago.

For the first time in a year his IgM and IgA have both inched up above the lowest "normal" cut off (by about a millimeter). This could be pointing to something positive. The thing is these numbers fluctuate like crazy and if we just caught him on an upswing and they are normally low this doesn't help him. Continue to monitor...

Also, our immuno points out: Just because they are present doesn't mean they are functional.


We hadn't even thought to confront that possibility... ugh.

But, what I thought was a really scary indication that his immune system (including his supplemented IgGs) isn't functioning well turns out to be the opposite.

Lately every three weeks or so little bit has woken in the middle of the night with a fever (102ish). We fight it and have terror stomach aches all night. Each time (except for the most recent when he had very obvious symptoms) he wakes the next morning with absolutely no symptoms and no signs of what went on the night before.

My fear was that his body was only intermittently detecting some pathogen then sort of "losing" it because one of the primary functions of Igs is to mark pathogens for destruction. Turns out his immunologist thinks this is actually a sign that Rainbow is picking something up then his (+ his supplemented Igs) system is kicking its ass. Wait, what? Really? This is one of the big things I've been processing. I really like the new immuno and he knows his stuff (bonus points because he has a PhD ;)) but this is still something I'm working to accept.

So, the take home from our most recent visit is: Dr is cautiously optimistic and wants to allow Rainbow to "grow out of" his current IgG supplement. Typically the dose is titrated up as a child gains weight. By allowing him to grow without titrating up we will get a slow and cautious clue as to whether or not he is producing Igs on his own. Dr also wants to vaccinate Rainbow against the specific pathogen that killed his brother and see if his body mounts a specific defense (this will again be a vague hint because of his supplemented IgGs). Dr cautions that there are roughly 485028496 things that could go wrong with the immune system and anytime Rainbow gets a fever he has to be seen by a doctor, every time. I'm down with that and now I have a mandate. So, slow and steady, keep testing, keep watching, and keep hoping.

Ok, finally to the big news... the thing I'm constantly turning over and over and over in my head.

Rainbow's immunologist thinks him starting Tuesday/Thursday school next year is a good idea. He's not pushy about it and is completely on board with us never putting Rainbow in school if that's what determine is best for him but... a good idea.

I'm a part of a few support groups for parents of kids with immunedeficiencies and the most common comment/complaint I see is: my kid is always sick/my kid was in the hospital again. These are statements from parents whose zebras are in school.

We've really never even considered him being in a group childcare situation because daycare is a petridish for every single childhood illness (one of my twitter acquaintances refers to it as "daycare pestilence). I used to be all about the "it makes their immune systems stronger." Then my child died of an infection and my mind changed to oh hell no!

But here's the thing. Rainbow is one of the most social human beings I've ever met. He aches for friends. You'd think, because he's been so guarded his whole life, that he would be introverted but he's not. He is fireworks and sunshine. He loves people.

He has spent so much of his life with adults I feel like we are keeping something beautiful from him. Children are magic. He deserves that magic.

So, we have a choice to make. A choice that keeps me awake at night with longing and with fear. What is best for him?

Hubby isn't even in a place where he can talk about it yet. If he doesn't get there by pre-school sign up time it will be a moo point (friends reference). If we aren't both ready to consider it then it doesn't get considered. So we will have to see...

Until next time...

Wednesday, November 2, 2016

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. 

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...

Saturday, October 15, 2016

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...