Since 2003, the March of Dimes has led Prematurity Awareness Month activities in November as part of its Prematurity Campaign.
The goals of the campaign are to reduce rates of premature birth in the United States and raise awareness of this very serious problem.
Please, we encourage you to to submit your own stories of prematurity with The Band.
Four years ago I would not have paid attention to an event like Prematurity Awareness Month and I likely would not have even known about the work of the March of Dimes. Today I am proud to be a supporter of the March of Dimes and their important work.
On March 8, 2007, my niece, Lucy Clare entered this world after my brother, Jonathan and sister-in-law, Mary, made the difficult decision to have an emergency c-section at 25 weeks gestation. In the weeks leading up to Lucy’s arrival, Jonathan and Mary knew that there was a chance Lucy would have to arrive early. She wasn’t growing and the doctors said that if she didn’t reach 500 grams (1.1 pounds) there would be very little they could do.
We all held our breath as Mary went to each ultra-sound appointment, hoping that this baby (gender unknown to all but them) would grow – just a little bit more, just a few more grams. They were briefed by the ob-gyn on what outcomes to expect if she was born at 32, 30 or 28 weeks.
A few weeks prior to Lucy’s birth, they were given a tour of the NICU so that they would be prepared for what they may encounter. At their last appointment, on March 8, they were told they had to make the difficult decision – wait another week and risk that she wouldn’t survive in utero or deliver that day knowing that the hospital had never had a baby that small survive.
Wanting to just give Lucy a chance, they opted for the c-section.
Lucy was a micro-preemie in every sense of the word. She weighed only 400 grams (14 ounces) and was just 10 inches in length. At her lowest, she dropped down to 290 grams. She was given surfactant therapy – its research was funded by the March of Dimes – for her lungs.
She breathed with the help of a ventilator for five weeks before being switched to CPAP for two months and then on nasal cannula until she was discharged. Lucy’s time in the hospital was filled with ups and downs – it often seemed like one step forward and two steps back. She faced many of the challenges that preemies in the NICU face: infection, retinopathy, the struggle to breathe on her own, a heart condition and feeding challenges.
Lucy spent 182 days in the hospital – six long months – before she joined her family at home.
Today Lucy is a happy, funny, easy-going 3 ½ year old who adores her big sister Stella and is starting to enjoy her baby sister Mallory. She loves books, colouring, watching Yo Gabba Gabba and dancing. But she still faces many challenges: she takes medication for pulmonary hypertension, she relies on a feeding tube for 100% of her nutrition and she has deteriorating eyesight. She has therapy appointments with a feeding specialist, physiotherapist, and attends weekly sensory motor sessions.
The work that the March of Dimes does through education, Prematurity Awareness Month, March for Babies and so much more, is crucial to helping all babies have a healthy start. Our family considers itself lucky that Lucy is here today and we want to do everything we can do to raise awareness for prematurity-related issues. It’s our chance to give back just a little bit.
So why is my Friday child confused and behave as though he’s Wednesday’s child instead? B doesn’t stick to the old English poem. He got confused along the way. I know exactly when that was. When he was twelve days old and caught the dreaded meningitis.
That was the worst of times.
We were told he wouldn’t survive the night, but he did. We were told he would never recognize us or smile or manage any basic functions, but he did. I won’t bore you all with the setbacks, the heartache every night, the months spent in hospital, how none of our friends visited, the long, drawn-out wait to get home.
Those are for another time. Maybe.
This post is about now, this minute, how I am feeling. I have never written anything like this down before, but I am an avid follower of Aunt Becky and she told me to, in all her posts about Band Back Together.
I don’t know how to make this a nice flowing post rather than a list of illnesses, surgeries, appointments and setbacks. I suppose I’m having this issue because that could be how you would sum up B’s life so far. I know that’s how others see him. When we meet for a Girly Catch-Up date, it’s never, “how are you all?” it’s “what’s B having done now?”
My friends are great but I’ve been labeled The Coper; or she who deals with all that life throws at her. B is labeled as ‘poor thing.’ Not a great label for an intelligent, reasonably active eight-year old. We have settled into this comfortable way of coping that I don’t know how to let people know that sometimes I am not coping very well.
Maybe Band Back Together will be the friend’s ear I can bend.
Anyway, back to my child of woe.
We were lucky to get pregnant with B and we were lucky to have a nice ‘normal’ pregnancy. B was born on his due date and then things started to go wrong.
B was labelled with Torticollis and Talipes within the first few days of his life.
It threw us but we had just come to terms with all of that when B caught the dreaded Meningitis, caused by late onset Group B Strep. Again, not to bore you with that hell of a first 6 months, B managed to cling on and then thrive. He was considered a ‘floppy’ baby due to, what we figured was the brain damage caused by the meningitis, so all his milestones were delayed. He also couldn’t work his muscles properly, including swallowing, so B was fed through a gastrostomy.
When we thought we were through the worst year of our lives, we were hit with another side swipe, B’s hip was dislocated and deformed, it needed immediate surgery. That surgery was deemed successful and so we carried on. We even began to relax a bit and focused on having some more children. B still had some problems, mainly with his muscles, but we had got him off his gastrostomy and, again, he was thriving.
So, we relaxed and concentrated on other issues, such as my infertility and the long rounds of IVF, but again another story for another time.
During these years we were eventually blessed with twins Z and E. All seemed well in our household, the girls were healthy and B was doing well.
Then, when B turned 6 we were knocked over again by the diagnosis that his hips weren’t right still. So major surgery followed, which involved B being in an hip spica for 8weeks (not great for a 6yr old boy and a mum who also has 2yr old twins to look after) and wheelchair bound for many months more.
However, we all survived, well I am a’coper’!
B was just beginning to get mobile again when a doctor noticed his face was looking wonky.
A year of maxillofacial appointments followed which ended with us being knocked over again by the diagnosis of Juvenile arthritis. The arthritis had been attacking his jaw joints for some time unnoticed and had now deformed them to the point of major facial surgery required.
However, they cannot do this while the Arthritis is active, so cue major arthritis drugs. Now B has to have weekly injections, for years, that are lowering his immunity, great.
However, we are coping!
Now factor in his hips update as well last week and we are cooking! B’s hips have, again, grown wrong and further major surgery is required, probably in January. Again my lovely son will be wheelchair bound because of his hips, injecting for his arthritis, struggling to eat because of his jaw deformity and tiring due to his muscle issues. Again, I have taken on this diagnosis and have dealt with it and I am prepared for it. What I didn’t expect was for his orthopaedic surgeon to say that things don’t seem quite right with B’s muscles and they seem to be getting worse.
Well, yes, he has hypotonia from the meningitis. obviously his muscles are not right.
That is not what he meant, the surgeon knows of B’s past history and thinks there is something else affecting him.
So that is why my gorgeous, bright, loving son is now being tested for Muscular Dystrophy and the medical view is that he probably does have it.
WHY?? I mean, hasn’t B gone through enough?
Haven’t I gone through enough? Haven’t all our family gone through enough?
B has, at the moment, hypotonia, hypermobility, hip problems, arthritis, jaw problems and now possible MD. Any 1 of these diagnoses would upset a parent, my son has all of them.
I am not coping any more, outside it looks like business as usual, but inside I am crumbling. I look at my friends’ children and, selfishly, wonder if I can pass on just one of B’s problems to them. Why did he get all of them? Even the doctors can’t believe how unlucky he has been. When friends worry about their child’s broken wrist, I think that I wish B could do cartwheels and break his wrist like that as well.
Then I feel bad for not having sympathy for them. Then, I overcompensate for my guilt by offering help and being the friend they can always turn to. They take that help because they know that I am a coper whereas they aren’t. They make half-hearted promises of help in return but, they have their own families to look after and B and I would need too much help. My hubby is pretty hands-on with the house and the kids but he has never been to a hospital appointment with B, never.
I feel it is B and I against the world sometimes.
So, there you have it, my child of woe.
This has been quite therapeutic, I feel like I can now go out into the world and carry on ‘coping’ again.
There is a picture of me, somewhere out there, probably still on my dad’s phone unless they’ve turned into Christmas Card people, in which case, the picture is most definitely out there in the world for all to see.
I hope it is not.
I didn’t see the picture until I was 5 months sober, staying in the unfinished basement at my parents house, grateful that I was no longer homeless, while I hunted for a job. Before this, I’d been staying there after a stint at a ramshackle, rundown motel, the kind of place you probably could dismantle a dead body, leave the head on the pillow, and no one would think anything of it. But it was my room, and despite the lice they gifted me, I loved it. Until money dried up and suddenly I was, once again, homeless. I’d moved in there after I was discharged from the inpatient psych ward, in which I was able to successfully detox after a suicide attempt. Got some free ECT to boot.
(WINNING)
Despite what you see on the After School Special’s of our childhood, I didn’t take a single Vicodin, fall into a stupor, and become insta-addict – just add narcotics! No, my entry into addiction was a slow and steady downward spiral of which I am deeply ashamed. It’s left my brain full of wreckage and ruin, fragmented bits of my life that don’t follow a single pattern. Between the opiates, the Ketamine, and the ECT, I cannot even be certain that what I am telling you is the truth; what I’ve gathered are bits and pieces of the addict I so desperately hate from other people who are around, fuzzy recollections, and my own social media posts.
About a year and a half before I moved from my yellow house to the apartments by the river, Dave and I had separated; he’d told me that while he cared for me, he no longer loved me. While we lived in the same house, we’d had completely separate lives for years, so he moved to the basement while I stayed upstairs. I’d been miserable before his confession and after? I was nearly broken. Using the Vicodin, then Norco, I was able to numb my pain and get out of my head, which, while remarkably stupid, was effective. For awhile.
Let me stop you, Dear Reader, and ask you to keep what I am about to say in mind as you read through this massive tome. I’m simply trying to make certain that you understand several key things about my addiction and subsequent recovery. I alone was the one who chose to take the drugs. No one forced me to abuse opiates, and even later, (SPOILER ALERT) Ketamine. This isn’t a post about blaming others for my misdoings, rejecting any accountability, nor making any excuses for the stupid, awful things I’ve done. I alone fucked up. My addiction was my own fault. However, in the same vein, no one “saved” me but myself. There was no cheeky interventionist. No room full of people who loved me weeping stoically, telling me how my addiction hurt them. No letters. Nothing. It was just me. I was alone, and I chose to get – and remain – sober.
The delusions started when I moved out, sitting in my empty apartment alone, paralyzed by the thought of getting off the couch to go to the bathroom. Always a night-owl, I’d wake at some ungodly hour of the morning, shaking. It wasn’t withdrawal, no, it was pure unfettered anxiety.
It was the aftermath of using so many pills, all the fun you think you’re having comes back to bite you with crippling anxiety and depression.
Which is why I’d do more.
Yes, opiates are powerful, and yes, I abused them, but things really didn’t become dire until I added Ketamine to my life.
Ketamine, if you’re unaware, is a club drug, a horse tranquilizer, and a date rape drug. You use too much? You may wake up at some hipster coffee bar, trying to sing “You’re Having My Baby” to the dude in the front row who may or may not actually exist. In other words, it’s the best way to forget how fucked you are.
The delusions worsen as time passed. I could see into the future. I could read your mind. I was going to be famous. I was super fucking rich. In this fucked-up world, I could even forget about me, and the life that I’d so carelessly shattered. I remember sitting in Divorce Class at the courthouse, something required of all divorces in Kane County, weeping at all that I’d thrown away – using a total of three boxes of the low-quality, government tissues. I left with a shiny pink face and completely chapped nose and eyes that appeared to be making a break from their sockets. I went home, took some pills, took some Ketamine, and passed out.
I retreated ever-inward. I didn’t talk to many people. I didn’t share my struggles. I was alone, and it was my fault.
The hallucinations started soon after Divorce Class ended and my ex and I split up. He’d left my house in a rage after a fight and went to live with his sister. I got scared. His temper, magnified by the drugs, the hallucinations, and the delusions, grew increasingly frightening. Once he’d moved out, the attacks began. I’d wake up naked in my bedroom, my body sore and bruised, and my brain put the two unrelated events together as one – he was attacking me. It happened every few days, these “attacks,” until I found myself at the police station, reporting them. I was dangerously sick and I had no idea.
My friends on the Internet (those whom I had left), sent me money for surveillance cameras. I bought them, installed them – trying to capture the culprit – and when I saw what I saw, I immediately called the police and told them the culprit.
The videos in my bedroom captured an incredibly stoned, dead-eyed, version of myself, violently attacking myself, brutally tearing at my flesh. In particular, THAT me liked to beat my face with one of my prized possessions – a candlestick set from our wedding, take another pill or hit up some Ketamine, then violating myself with the candlestick. It lasted hours. I’d wake up with no memory of events, sore and tired and unsure of how I’d gotten there.
I’d never engaged in self-injury before – not once – so the very idea that I’d hurt myself was unbelievable, but right there, on my grainy old laptop, was proof of how unhinged I’d become. Charged with filing a false report, I plead guilty.
In early September of 2015, I decided to get fixed, and made arrangements with work to take a few weeks off to do an inpatient detox, and, for the first time in a long time, I woke up happily, rather than cursing the gods that I was still alive.
It was to be short-lived.
Several days later, sober, I was idly chatting with my neighbor about her upcoming vacation (funny the things your brain remembers and what it does not), standing by my screen door, when karma came calling. It sounded like the shucking noise of an ear of corn, or maybe the sound that a huge thing of broccoli makes when you rip it apart – hard. It felt like a bullet to the femur. I crumpled on top of my neighbor and began screaming wildly about calling an ambulance, yelling over and over like some perverse, yet truthful, Chicken Little: “my leg is broken, my LEG is broken!”
I don’t remember much after that. I woke up in (physical rehab) and learned that my femur (hereafter to be called my “Blasfemur,”) had broken, fairly high up on the bone, where the biggest, strongest bone in your body is at its peak of strength. Whaaaa?
The doctors and nurses shrugged it off my questions, with a flippant “It just happens” and sent me home, armed with a Norco prescription, in November, to heal. I added the Ketamine, just to make sure.
A couple of weeks later at the end of November, I was putting up the Christmas tree with the kids and my mother. It was all merry and fucking bright until I sat down on the couch and felt that familiar crunch. Screams came out of me I didn’t know were possible, but I’d lost my actual words. My mother stood over me yelling “what’s wrong? what’s wrong?” and I couldn’t find the words. I overheard her telling my babies that I was “probably just faking it” as she walked out the door, my screams fading into an ice cold silence. They left me alone in that apartment where I screamed and cried and screamed. Finally, I managed to call 911 and when they asked me questions, all I could scream was my address.
I woke up in January in a nursing home. When I woke up, I found myself sitting at a table in a vast dining room, full of old people. For weeks to come, I thought that I’d died and gone…wherever it is that you go.
This time, I learned, my (blas)femur and it’s associated hardware had become infected after the first surgery, which weakened the bone, causing it to snap like a tree. They put me all back together like the bionic woman, but the surgery had introduced the wee colony of Strep D in the bone into my bloodstream, creating an infection on meth. I’d been in a coma for weeks. Once again, I learned to walk, and once again, I was sent home in late January with another Norco prescription. The nursing home really wanted me to have someone stay with me to help out, but I insisted that I was fine alone. In truth, I had nobody to help me out, but was far too ashamed to tell them.
The picture I referenced above was taken some time in May, as far as my fuzzy memory allows me to remember, after my third femur fracture in March. This time, I’d been so high that I fell asleep on the toilet and rolled off. Glamorous, no? Just like Fat Elvis. Luckily, my eldest son was there and he called 911 and my parents to whisk him away. I remember my father on the phone, telling Ben that I was a liar and I was faking it. I was swept away in the ambulance for even more hardware, and finally? A diagnosis:
HypoPARAthyroidism.
It’s an autoimmune disease that leaches calcium from the bones, resulting in brittle bones. It is managed, not treated. There is no cure.
But, I had the answer. Finally.
After my third fracture, I once again was sent to the nursing home, and quickly discharged with even higher doses of Norco, when my insurance balked, I’d used up all my rehab days for the year. By this time, I’d lost my apartment, my stuff was in storage (except the things that we’re thrown away, which my father gloated about while I was flat on my back) and my parents let me stay with them, which was about the only option I had. They couldn’t really kick me out if my leg was only freshly attached. I feel deeper into a depression, self-loathing, and drug abuse as I realized what a mess I’d made with my life. How many bad choices I’d made. How many people I’d hurt. How much I’d hurt myself. How much I loathed myself. How I once had a life that in no way resembled sleeping in my parents dining room. How I’d been a home owner. How I’d been married. How lucky I’d been. How I threw it all away. My life turned into a series of “once did” and “used to.”
The only one who hated me more was my father.
While we were once close confidants, in the years after my marriage to Dave, his disdain had become palpable. My uncle had to intervene one Christmas, after my father mocked me incessantly for taking a temp job filling out gift cards while I was pregnant with Alex. It may seem normal to some of you, this behavior, but in THEIR house, NO ONE was EVER SAD and NOTHING was EVER WRONG. WASPs to the core, my family is.
When I moved back in, broken, dejected, and high, our fights became epic. For the first time in my life, I stood UP to one of my parents. Then, I was promptly kicked out.
Guess I’m not so WASPy after all.
I want to say that the picture was taken around May of 2016, but my estimate may be thoroughly skewed, so if you’re counting on dates being correct and cohesive, you’ve got the wrong girl.
This is a picture of me, though you probably wouldn’t recognize me. I am wearing the blue scrubs that you associate with a hospital: not exactly sky blue, not teal, not navy, just generic blue hospital scrubs. These are, I remember, the only clothes I have to my name. I was given them in both the hospital and the nursing home, a gift, I suppose, of being a frequent flier, tinged with a bit of pity – this girl has no clothes, we can help. Whomever gave them to me, know that you gave me a bit of dignity, which I will never forget. Thank you.
I am wearing scrubs, the light of the refrigerator is slowly bleaching out half of my now-enormous body, as opposed to the darkness outside. There is a tube of fat around my neck, nearly destroying any evidence of my face, but if you look closely, you can make out my glasses, my nostrils, my hair cascading down. My neck is stretched back at nearly a 90 degree angle from my body, my head listlessly resting on the back of my wheelchair. My mouth gaped wide, which, should I been engaging in fly catching, would have netted far more than the average Venus flytrap. I am clearly, unmistakably, and without a single shred of doubt, passed the fuck out.
It is both me and not me.
High as i was, I don’t remember a thing about the photo being taken. But there I was, in all my pixelated glory.
By the time I saw the photo, I was once again in my “will do” and “can do” space. I’d kicked drugs in September 2016 and had found a job that I enjoyed. I stayed with my parents while I began to sort out my medical debt and save toward a new car and an apartment of my own. My spirits were high, my depression finally abated to the background, and I was tentatively happy. I’d apologized until my throat was sore, but my fragmented memory saved me from the worst of it, but I was not forgiven. I don’t think I ever expected to be. And now, I never will.
It’s okay. I can’t expect this. I know I fucked up.
My father, who’d actually grown increasingly disdainful of me, the more sober and well I became, confronted me when I came home one day after work, preparing to do my AFTER work, work.
My mother shuffled along behind him, Ben, the caboose. All three of them were in hysterics, tears rolling down their cheeks as I sat down in my normal spot on the couch. After showing them a video of two turtles humping a couple of days before, I eagerly waited to see what they were showing me.
What it was was that picture. Of the not me, me.
They could hardly contain their laughter, my father happier than ever, braying, “Isn’t this the best picture of you?” and “You PASSED OUT, (heave, heave) IN FRONT OF THE FRIDGE!” punctuated, with “I’m going to frame this picture!” The tears welled in my eyes while my teeth clenched, they laughed even harder at my reaction.
Like I said, if they’ve become Christmas Card sending people, this will be the picture of me they show, expecting others to laugh uproariously. Before I moved out, in fact, my father made certain to show the picture to anyone who came over. “Wanna see something hilarious?” he’d ask. Expecting memes or a funny cat playing the piano, they’d agree. I could see it when they saw it, my dad chortling with laughter, nearly choking on his giggles, the looks on their faces: a mixture of confusion and pity. Even in my drug-hazed “glory,” I’d never felt so low.
Maybe that picture is splashed all over the internet, in the dark recesses I don’t explore, and maybe it’s not. Maybe it’s hung on their wall, replacing all of the other pictures. Maybe it’s not.
Lyme has done some awful things to me. I think the worst are the feelings of despair, anxiety, loneliness. The physical symptoms are not permanent. And although it is sometimes hard to believe, the emotional and psychiatric symptoms are not going to linger forever either. No one can understand how disabling this can be if they haven’t walked this path. If I said I had cancer or MS, I think people would relate (“oh, so and so has that”). We’ve made those illnesses a part of our vernacular. Chemotherapy is almost universally understood. As a society, we know what to expect when someone gets those diagnoses. We are compassionate, sympathetic. I know when my dad was diagnosed with cancer, people came out of nowhere with cards, meals, time.
Lyme is not yet seen the same.
Late-stage Lyme is debilitating. But it is invisible. There is a great website called “But You Don’t Look Sick” that has some great stories about perseverance through invisible illness. I’ve been called a hypochondriac by people who claim to love me. That’s heart-breaking. I sometimes don’t have enough energy to get out of bed to make dinner. I certainly don’t have the energy to convince someone that my whole body hurts and that I have fatigue that can only be temporarily overcome by several large cups of coffee. I’ve realized that putting on that front though only makes it less obvious that something is wrong.
I don’t want to be a burden to those I care about, so I try to minimize my complaints. But truly, I feel very alone. When my dad was sick, I felt there was no other choice but to move in with him, make sure he was cared for, that healthy food was on the table, that he didn’t have to worry about driving home from chemo. Where is my caregiver? I don’t mean for that to sound desperate or clingy. I guess I just don’t understand. I would do anything for friends and family. Quite frankly, I have, sometimes to a fault to where I haven’t left anything for myself and my family.
I am ready to be healthy again. I want to have non-caffeinated energy. I want to be able to work out without feeling crushingly fatigued from lifting ten pounds. And I want a social life back. I know it takes time to maintain friendships, and I feel like I have lost my ability to do that. Mostly I’m just tired of being alone.
And being sick is just one more reason for me to feel distant from others.
This is her struggle with Lyme Disease and a happy update!
I’ve been on some version of antibiotics since late last fall, first killing Bartonella and then working with a combo of drugs to attack the Lyme bacteria.
A year ago, I had no idea why I was sick. Each month brought with it an unknown set of new symptoms. I would cycle through the month with a flare up every 35-ish days. I often predicted when I would get sick again because the cycles were so regular. No one wants a diagnosis like this, but at that point, I just wanted to know what the hell was wrong with me!
I have had several people question whether I was legitimately sick and then a few more question the Lyme diagnosis since it is far from fool-proof. But a year later, I have to say, I feel SO much better and am so thankful for the doctors who risk their licenses to treat this disease. I may not be 100%, and I certainly still have some neurologic deficits, but compared to a year ago, I am so much healthier.
The shooting electric shock pain is gone.
Where I used to be tired from doing nothing, I now am only tired from doing. I may still get more easily fatigued than I used to, but at least I can be somewhat productive. (And this week has been a record for energy I think since before I got pregnant TWO AND A HALF YEARS AGO!)
My joints feel much better and are only stiff momentarily in the morning.
The all-over body pain is gone.
I still get dizzy, but it’s becoming more and more related to over-stimulation and florescent lights, as opposed to just being dizzy because I’m awake.
I still forget how to spell words sometimes and can find myself lost in a conversation. My eyes still get tired. And the Bell’s Palsy isn’t fully resolved.
But I am better, and that’s a reason to be optimistic that I will make a full recovery!
I have a dear friend who has Hepatitis C. He went through interferon treatment, which is considered the gold standard for hepatitis C treatment, last year. The side effects were severe but it didn’t kill his disease and he will undergo an experimental protocol in January.
His wife, an even dearer friend, lived through hell during his treatment and now she has to return.
All I know how to do for them is be there when it starts. I will to walk through hell with them. They would do the same for me.
Ironically, they will probably have to one day. My better half has tested positive for Hepatitis C. I am just grateful that his viral load is still low enough that the doctors recommend against the interferon treatment; instead they are waiting, watching.
It is bad enough that these two men, so full of life and benevolent mischief, have this disease that wants to kill them. Yet, to add insult to injury, all four of us are recovering addicts. You’d think we had walked through enough hell just surviving addiction, getting clean, and finding a new way to live.
I feel so powerless, so inadequate. I want to scream. I want to fucking punch something
Living with Lyme Disease can be a brutal burden.