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.
I learned about narcissistic parentification today. I’d been aware of narcissism and parentification as separate things prior to this, thanks to my son’s father, but I didn’t realize these two things often went together.
Yesterday my 6-year-old son attempted to stab himself in the eye with a pencil. This occurred after being asked not to throw paper.
He decided he needed to punish himself.
Thankfully, my husband caught the pencil and it never touched our son’s eye. Still, it was terrifying. This is not exactly new, although this is the most extreme self-punishment to date. Often when my son thinks he is in trouble for something, he will self-discipline by hitting himself or knocking his head against something. I’ve asked him why he does this, and he tells me that it’s so that he remembers what not to do.
We have an extreme perfectionist on our hands. This, too, I’ve known for a while. He has always been the kid who won’t try anything if he’s unsure he has it mastered. I had to get down on my hands and knees and physically SHOW HIM how to crawl when he was a baby! He wants to do everything perfectly the first time, and he will hide the fact he knows how to do something until he feels he can demonstrate the skill perfectly.
We’ve told him again and again how much we love him and don’t want him to hurt himself. We’ve told him it’s okay to make mistakes, that it’s expected and even necessary in order to learn and master new things. We’ve emphasized the fact that he isn’t in TROUBLE when things like this happen – that we are just reminding him to help him learn for next time. Yet, it doesn’t seem to register. He hurts himself anyway.
He is a 6-year-old self-injurer.
Lord knows he has plenty of reasons to behave this way. He is fighting cancer, has changed schools and residences in the last year, and is about to become a big brother.
And then, well, his dad is narcissistic…
Since my son’s self-injury has escalated even though the rest of our life has calmed down, I looked up the effects of narcissism on children today. And that led me to narcissistic parentification.
I learned that children of narcissistic parents are more prone to pediatric anxiety and depression. They can be self-destructive, have an irrational fear of failure, and either have difficulties in school or strive to be perfect.
She’s angry at God. In her eyes, He’s the one who created her with this disease, it’s His fault.
She’s angry with me. I’m her mom. I am the fixer of boo-boos. Yet with this, I am powerless, and that frustrates her.
She’s angry with the transplant coordinator; afraid that she’s completely forgotten about her.
She’s angry with the organ donors who, as terrible as this is, haven’t died yet. She doesn’t completely comprehend that a tragedy has to happen to a family in order to have her transplant. She just knows that a donor has the liver she needs.
I try to soothe her anger, but I’m not very successful.
Maybe because I am, well, not angry, but frustrated too.
*Of course, no one can fight cancer alone. Or should. But that doesn’t mean that you don’t sometimes feel alone. Even if you aren’t the one who has the cancer.
I still remember walking with my son on his way to the OR. Trying not to fall to pieces. Wanting to believe that the neurosurgeon I had hardly met more than 24 hours before would fix my son. That his hands would be steady as he worked to remove the tumor that was slowly taking over my son’s brain. That the tumor really was “just” benign as he had thought.
Oh, how I wanted someone to promise me that my son would be okay.
The constant plea in my head… just please let my son be okay. Just please let him live.
Oh, dear God… my son was going to have brain surgery. My two-year old son. Brain surgery.
Then the bright white room, people moving about as if on a mission, my eyes locked onto my son.
“Time out!”
Me wondering, “What the hell?” and “What did we do wrong?” Only to realize that they are trying to verify that they have the correct patient and the correct procedure. I try to regain what little composure I have left. I can’t lose it completely in front of my son.
Then the anesthesiologist telling me to kiss my son as it’s time for me to go.
My son is howling as if betrayed. “How dare you leave me with these people?” scream his eyes. Then the medicine starts to take an effect and the life seems to fade from those same eyes as his body goes limp.
I walk out of the OR. Without my son.
I had never been more terrified in my life.
That was four years ago.
In the last few days, I’ve been teaching that son to Rollerblade. The one who before the diagnosis had problems with balance and motor skills. Now on rollerblades.
It’s one of the most beautiful things ever.
But he didn’t make it to this point alone. Nor did I.
Nearly a year after our son’s surgery, my husband learned of a program called Hero Beads offered by a local childhood cancer support group called Capital Candlelighters (soon to be renamed Badger Cancer Support Network). This string of beads documents the diagnoses, treatments, milestones, etc. along a child’s journey.
It’s almost indescribable seeing your child’s medical history as a string of beads. And regardless of outcome, there are always too many beads.
And while I treasure those beads, Capital Candlelighters offers kids and their families so many more concrete means of support. From financial aid to support groups to sharing information… anything that they can do to make the hell that is childhood cancer easier for children and their families.
Over time my family has begun to participate in events either sponsored by or to benefit Capital Candlelighters. We recently walked in our second Suzy’s Run. It’s a highly emotional experience. Seeing the families and kids who are still fighting or have beaten cancer. Seeing the families whose kids have lost.
So it’s time for me to do more, to give back. Because doing good feels good. But I’m not done yet.
“…because kids can’t fight cancer alone!” (Capital Candlelighters motto)
(I’ll be damned if I don’t tear up every time I read that motto.)
Cancer took my Daddy not even three months ago. The rest of the year hasn’t been much better.
2010 was supposed to be a fun year. A great vacation with my little girl – she was turning 5. We were so excited. First inkling that 2010 would NOT be cool? My 5-year olds dad would not allow me to get her a passport to take her on a cruise. The bastard didn’t think I’d bring her back! Wha? Obviously he knows me even less than he did when we were married. Idiot.
So my dreams of a Mama and Gigi vacation were put on the back burner.
February 2nd, I turned 32 and I wasn’t happy about it.
Where was my life? Not where I wanted it even though I did everything the right way. I graduated high school, went straight to college, graduated college, married college sweetheart and waited the right time after the wedding to have baby. We thought that three years was a good amount of time.
Uhhh…not so much.
Marriage was not a happy thing for me. Every day, I was put-down. My self-esteem shattered. I found out I was pregnant (because, you know, that’s what happens when you have sex and don’t use protection. After, all it was “cheaper” to use condoms instead of birth control pills. Or something like that).
All my life I wanted to be a mother. My pregnancy was awful. Not because I was sick or anything but because my husband was an asshole. He called fat and crazy, I started believing him while I wondered what the fuck I was doing with this bastard? Well, I needed to work things out because we were having a baby. And not just a baby…MY daughter, the one that I been waiting my whole life to have.
She was born on a freezing cold St. Patrick’s day. Came screaming into the world and was…perfect. This child was sent to save my life, I knew that the moment I saw her. We named her Grace (I call her Gigi online for “privacy”). I promised that little girl on the first night of her life that I would never let ANYTHING hurt her. ANYTHING or anyONE.
Life went on with a colicky, very super-attached-to Mama infant. That child cried more than I thought anyone could ever cry EVER. I wore holes in the carpet walking with her jiggling her and whispering “shhhhhhh shhhhhhh” to get her to sleep. We moved to a brand-new city when she was five months old. Because it’s REALLY a good thing to uproot a mom with severe postpartum anxiety and depression from her only support system (her family) and move her with her colicky infant to a new place where she has to “bring home the bacon” while he leaves at 6:00 am every day to get a fancy-schmancy MBA. I was in a really good place in life. /sarcasm
Two months into the hell that was this move, I was on the phone with my mother while I was pumping in a dark, cold, hidden office at my work. I told her how awful The Husband had been. I told her that he’d said he would “rather me be dead than be Grace’s mom.” (Now there was more that happened but I’ve blocked most of it out. Some broken closet doors, a night spent sleeping with 911 dialed on my phone in front of my daughters crib and some other stuff)
Somehow, this didn’t concern me for ME…but for her. My mom decided that she and my father would hook up their trailer that night and make the 3 1/2 hour trek and move us home the next day.
The next morning I got up and dutifully kissed my husband goodbye. I called my parents as soon as he was out and could no longer be seen on the road. By 12:30 we were headed “home.” I called The Husband and told him that we were gone and things needed to change before we came back.
I fully believed that we WOULD be going back. But then? Then my colicky cried-all-the-time-unless-she-was-attached-to-Mama’s-boob became Super Happy Confident 7-month old. What? My child was picking up on every single source of stress in me and reacting from that. Weird. I’ve always said she is my heart and she truly was…we have been cosmically connected from the moment of her conception.
Anyway…4 years and much angst, tears, anger, hurt, hearings, court sessions, lawyers and judges later – I was declared free and divorced from The Husband. Whoopee! But yet I still had to hand over a piece of me every other weekend and every Tuesday evening. Grrr. I still hate him even though he is now The Ex.
Anyway…2010 was a year of promise. It was going to be good. I had a job that was as close to my dream job as I could get (or at least as close to my dream salary being somewhat geographically challenged). This was going to be a GOOD YEAR.
And then? It wasn’t.
February 4th. My Mama took a slip on the ice. A couple of scary moments where we thought she was bleeding in her brain. BLEEDING in her brain. That was bad. I took off work and ran to rescue my child (whom my mother took care of and didn’t know if she was at school or not because she wasn’t quite sure when or where she fell – a severe concussion will do that to you).
February 5th. I got fired from my job. FIRED FROM MY JOB. I’m a single mom who bought her very first house not even 5 months before and my jackass bosses FIRED me. I won’t get into reasons but let’s just say they aren’t exactly all “legal.”
Then my Daddy starts having health issues while we are still dealing with my Mama’s issues. Now yes, I’m 32 years old but when I say I’m close with my family – I am CLOSEWITHMYFAMILY. Multiple conversations with each of them a day. These people are not only my blood relations but my best friends.
So…winter turns to spring, I may or may not be enjoying a bit of unemployment fun and playing the “stay at home mom” gig. Never thought it would happen as I’m a single mom and well, I have no sugar daddy.
April…my fabulous Daddy is diagnosed with fucking brain cancer. BRAIN CANCER. It seriously doesn’t get much worse than that. He died not even three months after diagnosis. Motherfucking cancer and the motherfucking staph infection that came with his surgeries. I am not prepared to be half an orphan. I’m too young for this crap.
Then my sister…ahhh…my sister. There are not enough words or space on this site to even get into her. I love her, she drives me crazy and I love her 4 children as my own. She moved them 3 hours away. 3 hours away! Not the best choice given everything going on (and by everything I mean that this storyline could rival any soap opera…I’m NOT KIDDING). So my dad dies, my sister moves, my daughter-my heart-my sidekick in everything starts real life school and I have NO FUCKING JOB.
Add onto this that my nephew (0ne of the 4 that my sister has birthed) has leukemia. Yeah…unfortunately after everything we’ve been through this year that is an afterthought now. Poor kid. But he is doing well so that’s always a positive.
So…that’s my story. I have no “home.” This story could go under abuse (which I grazed with my marriage to The Ex), Divorce, Cancer, Parent Loss, Grief, Economic Struggles, Infidelity if I got into my sisters story, chronic illness if I went into all of my back story (Ulcerative Colitis), Depression, Anxiety, Postpartum Depression, Family Relationships, Pediatric Illness and it could go on and on. So I just choose to categorize it as “Things That Are Bullshit.”
So my Band friends, this is a small piece of the fucked up-person that is me.
I’m in a full scale “life sucks” moment now and just hope eventually maybe I can shit rainbows and see unicorns again. Maybe after I kick this damn strep throat that I have right now. School cooties.
