by Band Back Together | Oct 7, 2010 | Encephalocele, Neural Tube Defects, NICU |
Even in the NICU, she made her temper known. Her furious bleats echoed from the previously calmer walls, disturbing the other tinier occupants and their parents, and I had the good grace to feel sheepish as my daughter wailed fiercely, her gigantically fat legs and arms pounding against the sides of the isolette.
“Let me the fuck outta here!” she hollered without saying a word.
I echoed the sentiment, with my own words, of course.
My daughter, she is a fighter.
At birth, my Amelia Grace, the fighter, born with her brain hanging from her head, she disturbed the entire labor floor with her angry screams. Indeed, one of the only clear memories I have of her birth is her shrieks, so loud, so furious over the grievous sin of having been forced to be weighed.
(I, of course, feel precisely the same way every Friday when I am weighed in, but, you know, I am much more in control of my tantrums, so I can shriek QUIETLY before having to see the number on the scale)
This trait, this fighter trait, it has never left my daughter, my warrior girl, and it is with intense pride that I see her furiously beat her hands against the floor, shrieking in anger over some injustice, because it is so familiar to me. She is her mother’s daughter and she should know how to fight.
Yes! I say to her, YES, my brave, sweet girl, you FIGHT against it. You get good and god-damned mad and you take that anger and you channel it into something good and you use it for all it’s worth. That is the tiger in you, my child. And you let that tiger out and you let it ROAR and God HELP anyone who gets in your way. That fight will remind you you’re alive.
My little Amelia is a warrior.
If anyone should be born with the spirit of a warrior, passed so handily down from her mother’s DNA, I think it should be a daughter, someone born with the odds stacked so heavily against her.
Still, she doesn’t speak to me and tell me the secrets of her heart, although when I look into her deep brown eyes that mirror so closely my own, I can see them there, just below the surface. The Little Prince was right, what is essential is invisible to the eye. And when my heartstrings pull painfully in my chest, imagining the times when it will be so hard for her, I comfort myself in knowing that the warrior heart that beats within my own chest beats within hers as well.
The secret place, the land of tears, well, that will be hers alone, as it is with all all of us.
As I look at her, awestruck, often bemused by her anger, flared up by the terrible injustice of having been told, “no, no we’re not having candy for dinner,” I never forget how lucky I am to have her by my side.
Her speech therapy will begin soon. She’s operating at quite a delay, backsliding from even where she was several months ago. So now we put on our platinum battle armor, polish our diamond coated swords and get ready, because it’s time for the fight to begin.
My Miracle Mimi, my Warrior Principessa; it’s you and me against the world, kid.
So watch out, world.
by Band Back Together | Oct 7, 2010 | NICU, PICU, Special Needs Parenting |
hen I showed up to the pediatric transplant unit for my first day of residency, it was mercifully dark and quiet, the nurses flitting purposefully about as stealthily as they could. The only sounds I could make out beyond the steady mechanical hum found on any hospital unit were the occasional IV beeping, signifying, perhaps, an occlusion in the line or that a bag of fluids was now emptied. It was quieter than any unit I’d ever been on before.
Reds and blues and bright yellows lined the hallway and I noted cheerful balloons painted on the walls as I thought to myself, how wonderfully non-clinical it all looked. How perfectly child-like. It seemed only fair that if a kid were sick enough to have to be in the hospital, at the very least, they could feel at home.
I spied a television with a DVD player and PlayStation stashed in a corner, and marveled at how this hospital really had been designed with children in mind. The unit fridge was stocked with puddings and chocolate milk and chips and graham crackers; all stuff my own two-year old would have happily eaten. I felt as though I might actually be in some sort of elaborate daycare facility rather than a major children’s hospital. There was even a McDonald’s in the basement.
It wasn’t until I got my first assignment -a baby; severe liver failure- and saw that my one-year old patient was the size of a three-month old that these children weren’t having much fun. These kids weren’t on vacation. They weren’t at daycare. They were sick as hell. Some were well on their way to dying.
And still, even as these children died, life went on outside.
People bustled by on the streets, knowing, perhaps, the name of the hospital and the types of patients, but never knowing that fear. The fear that lives in your gut once something horrible happens to you and you know how in the cosmic scheme of things, there is no “fair.” They’d never know how terrible it is to listen to children -innocent children- in pain. These people would never have to voluntarily inflict pain upon their own flesh, their own blood, because sometimes life deals you a wild card, and you do the best you can.
They’d never know about the secret places in the hospitals, the PICU’s; the NICU’s where small, but real lives routinely hung in the balance. Where cosmic scales made absolutely no sense. Where kids lived and where they died.
This secret place, the land of tears.
When they’d think of hospitals, they’d think of the places where old people went when they were ill. Where your appendix or a foot or two of colon would be removed and you’d go home. Cured. Where you’d splint your broken arm, x-ray a broken leg, and bandage up that nasty gash on your finger. Where old people died.
Hospitals weren’t places for children. Because in a fair and just world, kids wouldn’t get sick and kids wouldn’t die.
Kids wouldn’t be born without brains, or with only part of their brains, or born too early, too soon to live. Babies wouldn’t be born still. Kids wouldn’t need dialysis or organ transplants. No kid should have to know the torture of chemotherapy. No parent should have to send their kid to the morgue. No family should have to plan a funeral for a child.
Death, dying; transplants and cancer, those are things that should affect the old, the people who had loved and lost, married and had their families, kids, grandkids; people who had lived.
—————–
My universe is less random than I once thought it to be.
When I birthed my sick daughter, Amelia, it just so happened to be where the very same children’s hospital where I’d previously worked had just opened up a satellite unit. At three weeks of age, she underwent neurosurgery, and for the second time in her life, she became a patient there. First in the NICU, then the PICU.
The monitors blipped intermittently for my daughter, gown bearing the same logo I’d seen so many times before, when her heart rate dipped or she’d forget to breathe and watching them, I’d shake her tiny feet, whispering breathe, baby, breathe into her pink shell of an ear. And then she would inhale, those glorious oxygenating breaths filling her lungs as the monitors would once again blip normal vitals. The alarms would stop shrilly alarming and yet another crisis would wink at us in the rearview mirror as it passed.
Her father and I signed furtively in and out of the NICU, then PICU after we were buzzed in by some unseen, nameless, faceless person into a locked, secret unit; mere ghosts of ourselves. We’d drift in and out for the tenth or sixtieth cup of coffee to keep ourselves awake and functioning, getting gluey food from the cafeteria to put into our mouths and chew, never tasting it. Sometimes, our paths would converge with other shells of parents. We’d smile knowingly as we passed; the kinds of smiles you smile without any trace of joy. Those commiserative, “you too, eh? Well, FUCK,” smiles, not the, “hey, friend, how are you?” kinds.
We learned later that we were the lucky ones. The ones that were buzzed out of this unit with our daughter in her carseat, strapped tightly in and screaming her head off.
The unit of sadness, of broken dreams and tears. Laughter and heartache.
This secret place, the land of tears.
by Band Back Together | Oct 7, 2010 | Anger, Anxiety, Coping With Divorce, Divorce, Loneliness, Marriage Problems, Sadness, Shame |
It was August third, 2001. A Friday. It was hotter than Hell outside, and it had been a long week. We’d talked about what we should do that night, and going out to a movie seemed like a good idea. I made dinner. We ate. You went upstairs to take a quick shower: “to wash off the day,” you said. I lay on the couch under the ceiling fan, dozing, and waiting for you.
When you came downstairs, I stirred. You smelled clean, ready to go. You sat on the loveseat across from me and said, “I need to tell you something.”
The rest is a blur, really.
I remember hearing the words, “I’ve been thinking about leaving” come out of your mouth and hit my ears like boiling lead.
I remember simultaneously wanting to vomit, hit you and run away.
I remember screaming, “NO! This isn’t high school! You can’t just ‘break up’ with me!! We took vows! In front of our friends! In front of our parents!”
I remember having a hard time catching my breath and my top lip swelling like it does when I cry really hard.
You were cold, despite the August heat. Firm. Unswayable. I wonder now how many times you’d practiced telling me that you were done. I wonder if you rehearsed in the shower and in the bathroom mirror just before you came down the stairs: “I’m leaving. No, I’m thinking about leaving. Yeah, that sounds better.”
I ended up begging you desperately: “Anything. I’ll do anything you want, just please don’t leave me,” I said. But your heart was closed. You were already gone.
The rest of the month was almost unbearable. The heat. The shame of explaining what was going on. The feeling of utter abandonment and failure. Hearing you move around upstairs in our bedroom while I tried unsuccessfully to sleep in the guest room below. Moving through the days numb, dreading my return home from work to see your things slowly leaving in boxes, headed for your new apartment. Crying on the phone to my mother and my friends about how you’d changed my chemistry and how there was no fucking way I was going to be able to go on without you.
And then it was September, and—just like that—you and the dog were gone.
I moved into a shitty eighties town-home that I loathed. My last living grandparent died, and I felt nothing. The Twin Towers fell, and I began to fall apart. I had one-night stands. I drank alone—something I’d never done before. And when I’d start to get disgusted with myself, I’d blame you. If you just hadn’t left me, none of this horrible shit would be happening to me. I’d be at home with you and the cats and the dog, hanging out. Being your wife. But you didn’t want that, and everything had turned to shit.
Somehow, I woke up each day and lived my life. By April, I’d lost forty pounds, dyed my hair aubergine and pink, and gotten a promotion at work. I began dating. Then one day I looked at the calendar, and more than a year had passed.
I was still alive.
Life was still happening, even though you weren’t a part of it anymore. Big, important shit was going on, and it was no longer my first impulse to pick up the phone, call you to tell you about it. And one day, I woke up, and loneliness and abandonment were not the first things I felt.
Letting go of my anger toward you was a like digging to China with a teaspoon in the desert sun. I hated you and wanted bad things to happen to you. I don’t anymore. I survived you, and I want to thank you. You leaving taught me how strong I am. You showed me how deeply I am loved and supported by my friends and family. I’d always suspected as much, but when you left, I became more confident of that strength and love than ever before, which set the foundation for the biggest challenges, the most terrifying and thrilling adventures and deepest love of my life.
by Band Back Together | Oct 6, 2010 | Breast Cancer, Cancer and Neoplasia, Chronic Illness, Coping With Cancer, How To Help A Friend With Chronic Illness |
I met her in the Fall of 1999. I hadn’t set eyes on her until I showed up with my moving van in the Southie alleyway. The house where we would become roommates. A mutual friend put us in touch as I needed a place to stay and she needed a help on the rent.
We didn’t actually live well together. Sure, we were cordial and hung out a bit, but she wasn’t more than a roommate. I’m kind of that way with girls, to be honest. It takes me a long time to let someone “in.”
The next year I got engaged and my then fiance lived just 8 blocks away, so I moved out. This is when she and I became close friends. We exercised together, commuted to work together, met for happy hours, had sleepovers. She worked her way “in” and we’ve never looked back.
She is my son’s Godmother. She is my husband’s confidante in all things, “WTF is up with my wife?” She is my girl. She holds my secrets and my heart.
And she is sick.
Yesterday, my girl found out her biopsy results. She has cancer. The Big C. It’s in her breast and her lymph nodes. This is all she knows. She’s scheduled to see the oncologist tomorrow and on Saturday, Team A will get together with her for her self proclaimed “pity-party.” We’re going to figure out where to go from here.
I’m trying very very hard to not make this about me. But I’m scared. And I’m pissed. I’m fucking irate. I’ve cried a lot of tears and I’m sure more will be shed.
But on Saturday and every day that I’m with her, I will be her strength, no matter what it takes. Hell, if it comes to it, and she’s in throes of chemo and she loses her hair, I’ll shave my head with her. I’m in. I’m so in and will fight with her.
She’s my girl.
And she’s sick.
*********************
originally written on thursday, 9/23.
An update. Initially, A’s MRI and CT scans showed that she had no more cancer. She was due to have her lumpectomy tomorrow, her 37th birthday. Instead, she had another biopsy on Wednesday last week and found out the cancer is spreading. So instead of the lumpectomy, she’s going for the double mastectomy. Losing both ladies. In16 days. And chemo right after. Fucking sucks, to be honest. I’m pissed off all over again. Her one positive note – she said “at least I’ll never again have breast cancer.” How’s that for a positive spin. She’s goddamn amazing.
by Band Back Together | Oct 6, 2010 | Multiple Sclerosis, Stress, Trauma |
Three years ago, I was diagnosed with MS. It took about six months from the time I first saw my neurologist to get the actual diagnosis, but he and I were pretty sure we knew what it was from the beginning. I loved my neurologist.
When I say “my neurologist” I actually mean my second neurologist. My first neurologist was a ball-licking douchebag with the bedside manner of a used tampon.
For a couple years before I was diagnosed, I felt “off.” My memory wasn’t as sharp as it had been. I had occasional periods where I would lose my train of thought. I had periods of shaking and twitchiness and I often felt like I was in a fog. My primary care doctor sent me to Dr. Douchenstein, who spent all of five minutes with me at my initial appointment.
He examined my eyes, asked me how I felt, banged my knee with the hammer and said he thought I was fine…but if I really wanted to pursue this….*deep sigh*….he would go ahead and order an EEG.
When my EEG came back with “some small slowing in the left frontal lobe,” he said it was no big deal. He saw nothing remarkable and that there was no seizure activity indicated on the EEG.
In short; I was fine.
I saw him about 9 months later and he spent even less time examining me and indicated that no further tests were necessary. I could see the receptionist on the way out to give her my co-pay. Wham-bam-thank-you-man.
My primary care doctor believed something was wrong, though she didn’t know what. She sent me to see a new neurologist and this dude was the polar opposite of the first one. The initial appointment was over an hour long and he asked about everything.
Through his questioning we found out something very interesting.
As a child, I’d remembered taking an orange liquid-filled capsule. I’d stopped taking it when I was around 16 or 17 and I never knew what it was for. The truth is that when I got old enough to question what it was, I had taken it for so long that I didn’t think twice about it.
Dr. Raddude had me ask my mom what the pill was for and (finally) at age 40, I learned that I had petit mal seizures as a child. You would think that would be the kind of info I would have known, but nope. With this new information in hand and an extremely thorough initial evaluation, the doc went to work investigating.
Approximately 15 MRIs, a CT scat a PET scan, two EEGs and a spinal tap later, I had a diagnosis of multiple sclerosis. I was having small seizures still but honestly, at the time our focus was on diagnosing the MS. The diagnosis of the actual type of seizures has been in the last month, mainly because they’ve returned and have been getting worse.
MS affects everyone in different ways and for varying lengths of time. If you’re not sure what MS actually is, it’s a degenerative disease of the nervous system. It’s not fatal, but it does lower your quality of life. There are four types of MS and each is slightly different than the others, but there is one common thread: no two people will necessarily have the same symptoms.
My symptoms tend to be dizziness, loss of balance and coordination, dropping things, stumbling over my words or slurring words, losing my train of thought, straight up forgetting things (things that I should absolutely know) and (this may sound funny, but is NOT a joke) I had one more symptom in my head to tell you, but I cannot remember what it is. Whatever it is, it’s kind of new to me and I was going to tell my doctor about it, but as I said, I forgot to write it down.
When I was first diagnosed, I was in the midst of my first big MS attack. It lasted about a year, and in that time I had to use a cane, could not walk more than a block or two without getting completely exhausted, had to write everything down in order to remember it, fell I don’t know how many times, including a half dozen times in the shower and went through a two-month period where I needed to sleep 16-18 hours a day.
This wasn’t stay-in-bed-like-I-have-depression, this was sleeping because my body needed the rest. My neurologist said it’s not uncommon for some MS patients to go through that and it completely sucked for me.
Throughout all of this, I had full custody of my daughter. Luckily, I had nearby family who could help me out. For a while, I was having a hard time with doing simple things like fixing dinner. There were nights when I would try to cut veggies and my hands were shaking so badly that I was afraid I would cut a finger off. Other nights, I repeatedly dropped whatever I was carrying–plates, food, knives, you name it.
I couldn’t drive for almost a year because of the dizziness. Luckily I got state disability for six months, but was denied SSI. Why? I really have no clue. The crack medical team that evaluated patients for Social Security was holed up in a shitty storefront office with 1970′s equipment and they said I didn’t need it and that was that.
Assholes.
The kicker was the woman I was dating at the time. She is a RN at a very well-respected hospital and one night she told me this, “If you can’t work and can’t do the normal things you should, what good are you?” And with that, she dumped me. Swell, huh?
For two years, I did pretty well. The symptoms were minimal and except for a couple of small episodes I remained symptom-free. Until about two months ago. Things haven’t gotten as bad as it was the first time. Yet. Maybe it never will. That’s the thing with MS–you just never know.
Since the first attack I’ve moved far away from my family. I have a new neurologist that I absolutely love. She’s as thorough as the first one and is the one who actually diagnosed my seizures as Juvenile Myoclonic Epilepsy or JME.
Thanks to the seizures, though, she is pulling my drivers license which means I need to look for a new job.
My current job requires a license. Plus, I deal with people on a daily basis and it’s tough when I keep stumbling over my words. I’ve been mocked by some co-workers on a regular basis as well. A couple of days ago, I was standing in front of my boss’ desk for about five minutes and we were talking. In that short time I dropped my pen three times. He never said a word, but the last couple of days I’ve had co workers pass me in the hall and drop whatever they had in their hand. They will generally bend down to pick it up and say something like, “clumsy me.” It’s childish and makes me feel both pissed and like less of a person–though I know I’m not.
Things are starting to suck ass again, but it’s not the end of the world. I have a couple of friends here that I can count on and I have a wealth of them back home and ones that I’ve made through my writing. I consider Aunt Becky (ed note: I love you, yo) a close personal friend and I would help her in a second if she needed it.
The bottom line is this: I have MS and JME and they will both (to a degree) diminish my quality of life and will make things more difficult for me, but neither disease is who I am. I will find a way to get by. I’ve taken this and put my own touch on it. I occasionally have to use a cane, but I found one that has flames painted up it.
It looks way awesome and it’s my way of looking at the MS and the JME and saying, “blow me.”
