I don’t actually fit the “stereotype” of a middle child, as I was a younger sibling to my sister, (three years older) for 15 years, before my little sister and brother came along a few months apart.
I got the live the life of a “younger” and then later got to have some fun times, and responsibility as an “older.”
It worked.
On the other hand, this journey with this “invisible illness” we call “Cowden’s Syndrome” isn’t quite as smooth. It has to work, but right now it’s the “typical” middle child. It’s having a tough time fitting in where it belongs. Actually it is definitively trying to take over, but either getting ignored, or getting too much attention for all the wrong things.
In February of 2014 there was the complete removal of her thyroid.
In May of 2014 there was a week in the hospital from complications from the medicine that was controlling the AVM.
In November of 2014, almost on schedule, the AVM bled and required emergency surgery.
In February 2015 I addressed another vein gone awry in my leg.
In May 2015 there was the arthroscopy for the AVM knee to quartarize some bleeding.
In August, on the 25th, there will be her second-hand surgery in two years to try to stay ahead of the vascular malformations now forming in her palms. That was an unintended result of Monday’s visit to the hand surgeon.
There are a list of appointments to make, and bills to settle, and I seem to be doing nothing more than surviving.
More blood tomorrow. An Abdominal ultrasound Friday.
The summer is not for carefree adventures. The summer is for doctors. I hate that. But, its true.
And as we met with the oral surgeon today who perused her multiple page medical history, his cavalier remark, “She looks good,” should have pleased me. But, if I may be frank, it pissed me off.
Not because she doesn’t look good. She’s stunning, and tall and polite and well-mannered, and has a beautiful smile. But that is NOT the point.
The point is he never mentioned anything about the medical history, and in our world, being validated matters. Someone needs to say its unusual (read unfair) for an (almost) 12-year-old to be discussing the removal of her wisdom teeth. And while this may have nothing to do with Cowden’s (although I’ve come to know EVERYTHING unusual has SOMETHING to do with Cowden’s,) it is still just grossly unfair. More unfair is that this is ALREADY her second stint in the chair of an oral surgeon, as a mass was removed from her gums some 5 years ago.
We remain “stuck in the middle.”
Again, I have the “healthiest looking sick kid.”
My kid who still ices her knee, and needs to walk a lap or two during swim practice, but still makes practice. That kid will spend a week in a wheelchair at Disney, as she is not to walk more than about 1/2 mile consecutively. The child who still hasn’t gotten clearance from her last knee surgery. Clearly, she doesn’t “look” sick, but the stares and judgment are inevitable. And to some extent I get it. Invisible illness is hard to understand.
It is during this week I feel most “stuck in the middle.” I am so grateful the accessibility issues are limited. I do not fit in with the parents of wheelchair bound children. Although, it is a necessary tool to allow us a much-needed vacation. But, what is not limited are the “invisible” elements of her condition. The chronic surgeries, the doctor visits, the traffic, the blood work, the scans, the inability to just “go”; to the museum, the beach, the park, or anywhere because it hurts to walk too long, the isolation from friends who have no limitations, the poking, the anxiety – well, they never ever go away.
We’ve learned not to talk about them much. But, they are always there. Hers and mine.
She learns to appreciate what she can do, and acknowledge what she can’t. Begrudgingly.
My kid who holds it together through all things, and has grit and determination I marvel at, will act in her summer production at school.
She learns to use the anxiety as a tool.
She masters her emotions. She is the boss of her body. She amazes me.
And on September 18th when she gets her bottom two wisdom teeth removed, the course of action will be no different.
They will never know the powerhouse of a young lady that just left their chair. Until she comes back for the other two a few months later.
“Stuck In The Middle With You” (originally by Stealers Wheel)
…Yes, I’m stuck in the middle with you,
And I’m wondering what it is I should do
It’s so hard to keep this smile from my face,
Losing control, and I’m all over the place
Clowns to left of me, jokers to the right,
Here I am, stuck in the middle with you…
To the Midle School Girls who doubt my daughter’s medical conditons:
I want to start by telling you, I know it’s not your fault. You are generally healthy. You were raised by people who are generally healthy. You get sick. It gets better. You want your share of attention. You resent that sometimes my daughter needs a little extra help in the halls. It’s not fair that sometimes she needs to sit out of Physical Education. You are tired too, right? It doesn’t seem fair that she needs to leave early from the class right before lunch. You’d like to stretch your legs too. Why does she “get” to being her own food everywhere? And is she really “allergic” to all those foods? Because she doesn’t seem “allergic,” and why does her food wrapper say “milk” when she’s “allergic to milk? She must be lying, right? Looking for attention again? Why does she get to leave early so often? You’d like to get out of last period too. I get it. I understand. You look at people who look sick, and you are probably really compassionate. Except now that you’re older, it’s time for me to let you in on a well kept secret.
Not everyone who IS sick, LOOKS sick.
Take a moment and process that.
Now I’d like to tell you a little about my daughter. The real Meghan. Not the one you always see, but the one I see. The one who I have kissed before 13 surgeries, as she left me for the operating room. The one I have slept beside for nights on end as she gets poked and prodded in hospital after hospital. The one who has shed tears of pure frustration and anger over the things that have been restricted from her life. The one who longs for you to understand, but will not talk about it in depth, for fear that she will isolate you, or worse, that you really won’t care at all.
Let me tell you about the Meghan who knows your problems. The one who genuinely hopes you, and your head cold, stomach virus, sick grandmother, and hurt ankle are all ok. The one who understands deeply your anxiety about getting a blood test. The one who “gets it” on levels you’ll never understand.
Let’s talk about the paraprofessional. While she has been blessed with the classiest, most professional women through the years, do you think for a moment she WANTS to need help? Do you think she WANTS an adult escorting her through the halls? Think about that for a minute. She doesn’t WANT to be different. Six knee surgeries, and a Rare Disease diagnosis have taken that option from her.
And about the trips to the nurse. Any idea how annoying it must be to have to detour to a nurse to hand you medication before you can eat anything at all? Any idea what it is like to never be spontaneous about just grabbing a bite of something? Because your body simply doesn’t make the enzymes it needs to digest food without help.
Please don’t even get me started on the cafeteria. In our house her Dad is a masterful cook, who makes eating gluten, dairy and soy free taste fabulous. But, out of the house? Not so easy. You want to know about her allergies? About how she can be “allergic” to milk and eat a product that contains milk? I get your confusion. But, here’s a tip; when you are confused, ASK, don’t assume. She’ll probably willingly share the reasons with you if you are actually interested.
She spent a large part of her very young years vomiting a lot. Sometimes so much that she ended up in the hospital. Her stomach hurt all the time, and she even had to have her gall bladder taken out when she was 3. She had ear infections all the time and her head was full of fluid. She didn’t talk much, (I know – hard to believe) because her head was clogged up. She cried because she hurt so badly. She was allergy tested for lots of things. Nothing came up. Nothing at all. Then I used my brain. And my instincts. And we targeted some foods.
And do you know what we learned? We learned that without milk, she doesn’t get ear infections. And she learned how to talk right away. And her head stopped being so full all the time. And she could rest.
Then I kept looking. And I learned that soy, in its purest form, caused a rash all over her body.
And when I took out gluten, slowly her joints began to ache less and less, and I was able to decrease the medication she needed just to walk up the steps onto the school bus.
Are they “allergies” in a technical sense? No, I guess not. But, they are just as important. I am forever grateful that she doesn’t carry the danger of anaphylactic shock, but she does have the ability to end up in the hospital from dehydration after vomiting for days when she eats certain foods. Even strawberries. Or anything with seeds. Or anything too greasy. Or cross contaminated. (Like last year in DISNEYWORLD when we needed a doctor after a FULL day in the hotel vomiting.)
So the meal bars she eats at lunch, yes they say, “conatins milk.” But, you know what? They agree with her. She doesn’t love them, but she eats them for NUTRITION, so she can function through the day. The “milk” in there is primarily undenatured WHEY protein from NEW ZEALAND where the cows are GRASS FED and roam free.
Why would she be anything less than honest about not being allowed to have regular milk products? Do you know she has never had ice cream from the ice cream man? I have to send her own pizza and chips and cake to parties. Do you think she doesn’t want the donuts and cookies, and hot pretzels in the cafeteria or at fairs? Does that really make any sense? Ask yourself of all the things to be less than truthful about, does that even enter into logic?
And about physical education. Let’s talk about my daughter trapped in a body that likes to betray the athlete inside of her. Let’s talk about the young lady who can run like the wind, but might trigger a bleed of the vascular malformation in her knee, and at the very least will pay in excrutiating pain. The girl who wants to play longer and harder than any of you, but can’t. The child who craves the idea of just coming in in a gym uniform and competing, for better or for worse, all the time. But, she can’t. Because the surgeon said not yet. And even when she’s able to join in, it will likely be on a restricted basis. Let’s talk about the girl who won’t run Main Street in Disney because she will have to navigate the parks confined to a wheelchair. Walking more than about 1/2 mile consecutively is too stressful on the knee.
Oh, and the tired. Yep, you are tired too. I get it. You were up late last night. Probably watching a movie, or doing something fun. So you are tired. But, she went to bed at a decent hour. Hers is a different tired. Hers is the tired that comes from a body that refuses to accept the synthetic thyroid hormones as normal. Hers is from a body that makes a hobby out of defying her. You’re both tired. But, it’s not the same. Trust me.
This is the girl who stays on stage during drama even if it kills her. Even if the pain is at its greatest intesity, because no one has restricted her there, yet.
This is a girl who gets to swim practice as consistently as she can, so that she can feel, “normal,” while she pushes through the water. This girl has to go to PT 2x a week just to get into the pool. This is the girl who overcame emergency surgery in November of last year for a bleed in her knee to qualify for Silver Championships 2 months later on raw nerve. This is the girl who took less than 2 weeks off from swimming after her knee surgery in May. Because she WANTS to play.
And all those times I pick her up early. It’s not for a manicure/pedicure. Turst me. See, Meghan has a rare disease called Cowden’s Syndrome. She’d be happy to tell you more about it. She got it from me. It causes non-cancerous, and cancerous growths to grow all over the body. She’s been lucky so far, and even though it was a close call when they removed her whole thyroid last February, she is to date a “previvor,” (one who has surgery to remove genetic cancer risks.) But, there is a doctor, and often a surgeon, for just about every body part. There are MRIs and scans, and hours travleing to Manhattan. No, not to museums, but to NYU, Sloan Kettering, Lenox Hill, and St. Luke’s Roosevelt. We do the hospital tour. The average round trip is 4 hours, usually after a long day of school.
This is a girl who has watched her mother undergo surgeries she shouldn’t have to think about yet. This girl has had her mother diagnosed with cancer when she was in 3rd grade. This girl has the same genetic condition as her mother, and the same cancer risks. Some days she has a lot on her mind.
Meghan is not perfect. I know this, and so does she. And if you have a problem, talk it out. Sometimes you’ll be right, and sometimes she will be.
Just don’t assume things. There’s a saying about that… and it’s all true.
You see invisible illnesses, like Cowden’s Syndrome are very, very real.
Meghan is only one of MANY people you will meet in your life who “don’t LOOK sick.” They would ALL benefit from your compassion.
Constant doctors appointments, scans, and blood tests, are not where we want to spend such a giant chunk of our lives.
Food allergies is a term we use to protect her from ignorant or uneducated people who think sensitivities and intolerances are not serious. Forgive me the word adjustment. It’s necessary to ensure her safety.
You see the hardest part about all this for me, is not being able to give you this speech in person. For the last 12 years I have been her voice, her mouth, her protector. Now, on top of everything else she has to handle, she has to find her own way of speaking about all of this. She has to find her own comfort zone.
And I have to watch.
My confidence in with my daughter. She will pick the right friends. She will speak up at the right times. She will learn all about herself. She will become her own best advocate, to you and to the world.
And once she has figured all that out, you’ll realize she’s a pretty fun kid to have around.
The awareness that one day we’re not going to walk this earth anymore.
Not exactly dinner conversation, but, for lack of a more gentle way to say it, mortality is everyone’s reality.
We face this reality at different points in our lives. Some are frighteningly young, and others are blissfully old. But, eventually, that awareness either creeps in or hits us like a speeding train. (Figuratively, or course.)
In my opinion, so much of the rest of your life is defined by what you do with that realization, that understanding that there is no promise of tomorrow on this earth.
For me, my solace, my comfort, and my focus, come from my faith. My deeply held belief in God, and that life does not end, merely changes, as we are welcomed into Heaven.
Whatever your own belief, is, your own reality, my hope is that it brings you comfort, solace, and gives your life on this earth purpose.
As a daughter of a cancer survivor (18 years and counting!!) I watched my Mom grapple with her own mortality at an age I consider very young. (young for her, and for me too!) She got it. She found clarity, but it was a few tough months. And even then as close as I was, I knew the significance of what I was watching, but I did not get it, not really.
I like to say my breast cancer was found, “by accident” or “divine intervention,” whichever you prefer. But, the moment in the surgeon’s office, that day in March of 2012 when I became a “survivor” by default, started my own journey with mortality. I was 10 years younger than Mom was at the time of her diagnosis. I had just undergone what I had prepared in my mind to be a “prophylactic” mastectomy to battle astronomical cancer statistics associated with the new diagnosis of a PTEN Mutation called Cowden’s Syndrome, that Meghan and I had received less than 6 months prior. When the word malignant was read, there it was; laying thick in the air for my husband and 8-year-old child to process with me.
And there was reality. Unable to ignore. Cancer had lived within me. Could it live again? Would it? When? Why was I going to be OK when so many others were not? Was I going to really be OK? What if they missed it, something bigger?
I was fortunate. Fortunate in the sense that a double mastectomy removed the encapsulated stage 1 cancer. I needed no treatment, no medication. But, my status had changed. In the eyes of the doctors, I was now an even greater risk. Every single lump and bump would be scrutinized, scanned, poked, prodded, and usually removed. The loss of my uterus and ovaries weeks later were a testament to this new-found realization that I was a risk. A significant risk.
Cowden’s Syndrome is one of those diagnoses that forces you to face down your own mortality at sometimes alarmingly young ages. An internet friend just made a jubilant post today that her youngest was now 10 and cancer free, a title she did not have herself at that tender age. The things we celebrate…
My Cowden’s Syndrome people are known to me mostly through the internet. We live across the country and across the globe. We navigate through different time zones and support each other through scans, scares, surgeries, reconstructions, and cancer. While this syndrome does not manifest itself the same in each of us, there are alarming similarities that make us kindred spirits. There is that “Sword of Damocles” hanging above our heads. There is that constant sense of not knowing, of hyper-vigilance, of bi-annual screenings, and worry. We stare at our own mortality each time we look in the mirror.
We have an extra bond when it connects to our children. A universal acceptance of the unfair nature of these young ones even needing to understand a bit of mortality. We have juggled the questions, inevitable after MRIs, CT scans, and biopsies galore. We have gently answered questions about family, and future, that have no real answers to date. We ache for them. We wish to take it all away. We have some guilt in the knowledge that in most cases this disorder, (whether we knew it or not) was passed from us.
Mortality will bind you, and if you’re not careful it can blind you. That is why there are support groups, for cancer patients, and others who have come close to losing their lives.
This weekend I spent some time in West Virginia with another group of men, bonded by their grapplings with their own mortality some 48 ish years ago in the Vietnam War.
I will protect their privacy here, and tell their story as generically as I can.
I connected with Alan, about 6 weeks after my father died. Dad had earned a Purple Heart in my mind, for an incident that occurred while he was serving in the United States Marine Corps. The award was never granted, and I wanted to pursue it on his behalf. So, I sent some letters to Marines, whose contact information I obtained from a reunion Dad attended in DC in 2006. I wanted to know who remembered him, and his story.
Alan contacted me first, verified my information, remembered the story, and has been in touch with me since.
My Dad, the “Irish Marine”
I sent 20 letters out. EVERY SINGLE MARINE responded to me. EVERY ONE. Whether they knew Dad or not, whether they could help or not, they ALL reached out to express their condolences. Many shared some funny anecdotes. And as hard as I’m sure it was, they all connected with me.
I had heard about the Brotherhood of the Marine Corps. I could not have fathomed the depth of that bond. One after another, they all left me with the same heartfelt sentiment. “You are the daughter of our brother. We will help you always in whatever you need.”
Now, I knew, or at least I could infer that their lives had not been any type of peaches and cream, on the island of Vietnam, or when they returned. My Dad battled his own demons for many years before our relationship began to form. But the offers of these Marines were sincere, and genuine.
Alan proved that to me through regular conversations, and almost heroic efforts to get someone to listen to the story of my Dad’s injuries. In the end, we lost the battle on a technicality. Although “The statements provided clearly establish that your father was injured as a direct result of enemy action, the available information fails to establish that your father was treated by a medical officer…Wounds not requiring treatment by a medical officer at the time of injury do not qualify for the Purple Heart Medal.” The letter was cold. The case was closed.
We lost the Purple Heart but gained so much more.
I was sad, mad, angry and disappointed. But I was so grateful for the Marines who wrote letters of support. I was grieving the fact that my Dad had carried this close to him for so many years, and lived with chronic pain as a result. I wanted this for him, because he never fought for it himself.
And as things go, it was not to be, but Alan did as he promised and remained in constant contact with me. He heard my sobs as I glanced at Dad’s headstone for the first time. His were the comforting words that started my healing.
So, this weekend I headed to West Virginia to thank him myself. I met a group of Vietnam Era Marines, several of whom had served with my father. I watched them together, in awe an amazement. I was welcomed into their group with instant acceptance. And as I sat and watched them laughing together, I noticed the war stories were sparse, and funny when they were told. Surely a contrast to the realities they had faced as young men years ago. But, the bond between them was unbreakable. There indeed was the Brotherhood of the Marines, but there was something else.
Mortality.
They faced it in the most horrendous of ways. They lived it daily. They buried their brothers. They knew their return home was not a guarantee.
And once you’ve faced that kind of life altering lesson in mortality together, you are bonded for life. As Alan said to me, “If you weren’t there, there are no words to describe it, and if you were, there are no words needed.”
I was among a group of people who had faced their own mortality almost a half century ago. And they have a bond that can not be explained. It is amazing.
And among the most amazing to me was the woman I met. She was not local either, but she, like I, had traveled for this celebration. It was not her first time. She had been around for almost 10 years. About 10 years ago the woman, who was an infant when her father died a hero in Vietnam, met the men he served with. She had never met her father, but here were father figures galore ready to embrace her. And they did.
A bit ago her father’s diary surfaced from his time in Vietnam. She shared it with me and the last entry written before he died was about the thought that so many of them must have had daily. His diary ends with, “When will it be me?”
Once you have looked your own mortality square in the eye, you can not walk away the same person.
But, it is up to you what you do with the rest of your life.
As for me, I choose bonding with people who “get it,” be they old friends or new.
I choose focusing on what we can do, not what we can’t.
I will not choose reckless living, but I will daily live with the knowledge that there is no guarantee of tomorrow on this earth.
Whether facing your mortality is something you endured, something you will live with daily, or something you are yet to face, how it changes you is really up to you.
As for us, in this house, we choose to remain focused on
It wasn’t the loud sobbing kind of crying. It was the kind where the tears just run down your cheeks.
And if they’ve been held in there a long time, it’s really, really hard to make them stop.
I cried first when I saw the office, of the Long Island Surgeon, 30 miles, and 2 or more HOURS away from home. As I approached the room my heart sank and a tear fell. It was empty. That’s never a good sign.
Then when I spoke to the less than sensitive receptionist, she said, “The doctor isn’t here today.” Which I had figured out all by myself. But, I checked the schedule on my phone to be sure I was right, and I was. 2:30 June 25th. I left work early. Rushed to let the dogs out. Got Meghan. Braved the Belt Parkway. And, made it in just on time.
“Look,” I showed her the schedule on my phone.
She was grossly unimpressed and contacted the doctors direct secretary. She said she called my cell phone on May 18th and left a message. Clearly the message never got to me, likely the result of a simple dialing error. I even flashed the less than sensitive one, my voicemail log on my phone. “See, no call on the 18th.” She was still unimpressed, and now annoyed as well.
Meghan told me this morning her knee hurt. I haven’t heard that with regularity in a few weeks. She told me on the way to the appointment that she was glad to see the doctor today. She said she feels like her kneecap is shifting again. This was a primary cause of her preoperative pain. I could see the swelling. I just wanted some reassurance.
But, it was not to be. Because to argue about a phone call would have no real helpful answer, because the bottom line was, there was no doctor.
And the tears just started to fall. At first I worked to wipe them away. Then I just let them go.
I was offered a PA, and initially said no. Then I asked Meghan. She said she’d try one.
“The mother asked the patient, and it’s ok to send a PA down,” mocked the less than sensitive one.
YES! I wanted to scream. YES! The MOTHER, asked the PATIENT, because the PATIENT knows her body better than ANYONE. Her age is irrelevant. Her experience wins.
So we waited for the PA.
He examined her knee, and spoke about the swelling, which he said was likely due to “irritation.” REALLY? I was told her right quad has a good deal of muscle atrophy (something our PT noted BEFORE the surgery,) and that she should suspend all activities for a week, ice and elevate, and return in 7 days to see the surgeon. We scheduled for 9:30 AM, so she can miss the second day of camp, only to travel from Long Island to Sloan Kettering for an endocrinology visit, and back home for PT. (Summer vacation? Anyone?)
He saw my tears, and saw a weak, unstable woman. I know he did. And for the first time ever I stopped myself from justifying my tears. I simply told him there were many things involved in my frustration that he did not comprehend. The end.
I am done apologizing for my feelings. And I am done trying to explain sometimes, although not often, I cry out of sheer frustration for the madness that is our lives.
And as we got 2 cups of green tea to go, I cried some more.
I cried for the stupidity of mis-dialed numbers, and for the 4 and a half hours of our lives wasted, again.
I cried because no one really cares. Not really.
I cried as I watched the teen bald from chemo get out of the car. I shed tears of gratitude that it could always be worse.
I shed tears of sadness, for my girl, growing up too fast. Advocating for herself. Standing her ground with doctors. Because she just shouldn’t have to. And I cried for the doctors, who are missing out on a valuable opportunity. They could listen to my young, articulate, “in touch with her body” daughter, and they could learn a lot. Then I cried in desperation at the reality that they don’t want to.
I cried angry tears for the ones who have no regard for Cowden’s Syndrome. Those who don’t understand it, so they ignore it. They skip over it like a child trying to read a story above grade level. Because they have never seen it, they deem it irrelevant, or unnecessary. They don’t know that our ENTIRE treatment plan ALWAYS need to be grounded in the reality that there is Cowden’s Syndrome, and nothing is as it seems to be.
I cried about the summer that should be free of, or light on schedules, polluted by these doctor’s appointments. Necessary to complete in the summer so I can keep my job, and she doesn’t miss too much school. I thought about the week to come, Monday- Manhattan, Tuesday- Long Island, and PT, Thursday Long Island again, then Manhattan from there, and back to Staten Island for PT. And the following week, appointments for me Monday and Tuesday, 5 in 2 days. Meghan on Wednesday, and the dentist… as soon as we can get a Thursday afternoon free.
I cried about HOURS of our lives we will never get back. Ridiculous trips that take 5 times as long as they should.
I cried because I am wasting her childhood with necessary evils. And I hate it. I hate it a lot.
I cried for the isolation and loneliness created by a disease that keeps us both busier than we want to be.
I cried for our friends with this stupid disease and their physical, emotional, medical, family, and life struggles.
Eventually the tears dried into a scream or two. My girl had no idea I have those lungs.
And, as we arrived LATE for PT, I breathed a sigh of relief. Behind the doors of Leaps and Bounds PT, they “get it.” So Meghan works on getting better, physically and emotionally in a place she feels safe.
I booked PT through the summer. I had hoped we wouldn’t need to. Not for any other reason than it adds to a schedule we’d rather not have. So that “doctorless month” we’ve been trying to plan for three years isn’t happening this summer.
“I’m over it Meghan.” I told her as we were driving. “I’m over the whole Cowden’s Syndrome thing.”
And in her infinite wisdom again, “I guess, but without it I wouldn’t be the person I am. I’ve learned a lot…”
And the teacher is the student again.
Tomorrow I will have the tears back in their proper place. Tomorrow. But this is today’s reality, and sometimes that’s OK too. Because regardless – we are
My daughter is a reader. She eats books up. One after another. I have pleaded with her to use the kindle, just to avoid the sheer volume of books in the house. I lack the responsibility to be a good library patron, as my brain can’t remember even one more thing. So the books build up. There are gift cards, and sales. And I never say no to a book. Ever.
Her early childhood teachers nourished a love, no a passion for reading. They gave her the skills to decode, to comprehend, and to find her genre of choice, and her escape. She has needed that escape so often through the years that I find myself grateful for how easily the reading comes to her, and forever grateful to those precious teachers who likely have no idea how deeply they have impacted our existence.
This was a weekend full of homework. It was a culmination of a month that began with being pulled from class for play practice, and continued through her surgery on May 6th, and seven days absent. There are 4 honors classes to maintain, and for a perfectionist at heart, striving to get it all done has been nothing short of horrendous. All the classwork, all the homework, all the projects, every last bit of it to be made up.
And I understand, to some degree, why nothing was forgiven. Why she had to do it all. I have sat in the seat of the teacher for 19 years and the reality is absent or not, sick or not, they are responsible for the curriculum. That didn’t stop me from questioning the VOLUME of work and how it differed drastically from unbelievable to totally reasonable. And it didn’t stop the stress and bitterness of the last few weeks from taking a toll on both of us.
I hate having to be the “heavy” all the time. But, I was the one who had to put the books in her hand days post-op. Still working the anesthesia and narcotic pain relievers out of her system, it was time to get started. Knee elevated and iced, we talked through one subject after another.
Normally she manages all her schoolwork alone, and does it quite well at that, but this month I needed to stay with her. Make sure all the pieces were getting put back in place. Junior high is a step closer to the “real world” I guess, and while there was some awareness of her absence, life marched right on.
She hopped in and tried to catch up at school. She spent the entire week there, despite my knowing by Friday she probably should have been home. Friday night the fears were confirmed, as the classic sore throat began. Honey syrup lasted through the night until the pediatrician was able to declare an ear infection, and likely strep throat. She was cultured. The script was filled, and even as she took dose number one, the books were open.
She worked in my office this weekend, so I could oversee. Laptops side by side. Lots of togetherness. But, one subject at a time, it got done. The notes were put into notebooks, packets were completed, homeworks were stapled together. A science book was created and a newspaper for English class too.
And slowly as the last staple went into the last assignment, a smile crept over the corners of her lips. Her throat felt just so much better, and there was this notion that the weight of the world had been lifted from her shoulders. There may be more to do this week. The year is not over quite yet. But finally, she is all caught up.
So she retreated to her favorite spot on the couch today, alternating between reading, and watching a series on Netflix. She brought me her book, “Gathering Blue” by Lois Lowry. “Hey Mom, listen to this…“Take pride in your pain,” her mother had always told her, “You are stronger than those who have none.”
She offered me a free hug and a smile. Then she was gone, back to her day of much-needed peace, healing and rest.
But, the depth of her quote resonated with me. Not only in amazement that she is able to extract such meaning from the context she reads, but also in the context of today, Memorial Day 2015.
When I started writing this blog it was all about therapy for me. It was all about our journey, and what we were going through. And still, so much of my day, so much of our lives, are consumed by Cowden’s Syndrome, its ravages and its effects, that leaving it out of my writing would be impossible. For while it does not, nor will it ever, own us, or rule us, it had shaped us as we grow through this disease together.
Along this journey we have learned so many lessons. We have learned to have a keener eye to the suffering of others. We have embraced the reality that “everyone has something,” and we have a deep appreciation for the many blessings we have.
I spoke several times today with one of my Dad’s Marines, “Uncle Alan.” I learned about lowering the flag to half mast till noon to remember the fallen, and then raising it to honor the living. I learned about some more Marines, and for a short time I was able to provide an ear for someone whose grief on Memorial Day bears more than general images, but actual names and faces. He speaks with such grace, such poise, and such a deep connection to his “brothers.” I can not help but admire him, even as we have yet to meet.
I put together this picture last night. All four of the veterans I love so dearly, only one of whom is still with us here on earth. My Pop, pictured with my Grandma, almost 70 years ago in the top left. At 95 his wit, compassion, faith, and humor still inspire me.
I took some long walks today. I had a few long talks, with God, and with my Dad, and some others gone too soon. I embraced the beauty around me. I gathered my inner strength to handle whatever life has waiting in the wings.
“Take pride in your pain. You are stronger than those who have none.”
I went to college, and graduate school, and took 30 credits above my Master’s Degree in Education. I earned a job as an elementary school teacher, in the school I attended as a child. And, after 18 years on the job I still love those moments when I am alone with my students, and things just “click.” But, nothing happens by accident. And despite the belief that a teacher’s day ends at 3PM, many a long night has been spent with those very students in mind, planning lessons, and creatively trying to reach them where they need to be met. I am not always successful in my execution, but I am confident in my planning and preparedness.
Because, you see that is what I was always told a professional is, and does. You LIVE your “job.” You are still the teacher, in the mall, in the restaurant, or even in CVS.
As a professional educator, I take pride in TRYING to meet the needs of my students at their level. It is my responsibility to help every child, not just the easy ones.
But, lately I am wondering if every professional has that same feeling.
Now, I mean no offense to the various healthcare professionals who go above and beyond for us, and for their other patients.
It’s just, well, the rest of them.
Having Cowden’s Syndrome sometimes feels like, well like I would imagine it might feel to have a plague, or leprosy. People, doctors, whomever, look at you tentatively. They look with caution. They don’t want to get too close. They are afraid to treat what they don’t understand.
And worse – no one wants to be in charge.
We are the worst kind of liability – more dangerous than a safe full of cash or a rare artifact.
Everyone wants to see us, all the time. But, they just seem to want to check boxes that say they’ve met their “I’ve seen a Rare Disease” quota, and send us on our way.
I am the CEO of my daughter’s medical care, and while frighteningly competent to do the job, NO ONE is listening to me.
To My Daughter’s Entire Medical Team:
You are dropping the ball here. Someone step up and take charge. Talk to each other. Get your egos out-of-the-way. LISTEN to me. LISTEN to her. Put her picture on her chart to remind you she is a REAL person.
She is charming and beautiful.
Believe her when she says it hurts. Even when it is not “supposed” to. Validate her.
And sometimes. as unpleasant as it is to see, there is a lot of very real pain.
She talks a lot when she’s nervous. Care about what she has to say. Care that she is nervous. Learn about her love of swimming and reading and performing. Adapt your plan, your day, your treatment to fit MY child, just as I would do to yours in my classroom. Treat her as a whole person.
We are tired of spending hours in the car, missing practices and play, and relaxing time, just for you to feed us a line of “maybe,” “watch that,” and “come back.” We are tired of going places where no one wants to give us answers, or even answer our calls.
We are tired of surgery. But we do it. Over and over.
It’s a real person enduring those procedures.
Call back when I have questions. Like within 24 hours. Because I carry my phone until it leaves an imprint in my hand when I wait for you. Nothing else gets my concentration while I wait for the ring. I carry my list for fear of missing that precious window with you.
Oh, and by the way, the foot with the AVM had stopped growing. Take a look. Someone. Please. It’s a bit disconcerting.
She’s hot. Often. And at odd times. And I’m not just talking a little uncomfortable. Anyone want to help address that one?
And yesterday the dermatologist said it’s a vascular malformation in her hand. Another one. Please don’t tell me it’s not all connected. I’d rather you tell me you don’t know.
Don’t ignore her symptoms because you don’t understand them or can’t explain them. Trust me when I tell you, she’s not making it up. Any of it. She spends her time trying to make the world better for other people. Isn’t it about time you all got it together and started making HER world better?
And when the knee is at its worst, there is still a way to press on.
The pain in the knee is constant. Yep, I know it “shouldn’t” hurt either. But, she doesn’t even ask for medication anymore for fear of the same issues her last pain medicine caused in her GI tract. She just endures. All day. And then she goes to drama, and then she swims, and manages an average of 97% and the National Honor Society. She limps a bit by the end of the day. It’s the mornings that are the toughest.
To you she is one of many. To me she is my one and only. And this child, young lady, has the capability to effect great, positive change in this world. I know you are tired. I know your schedule is busy. I know research takes time. Start by listening to us. Listen. Care. Let her know she matters.
Then maybe, just maybe, she’ll start to trust you. Then, slowly, together, you can try to make her life more comfortable. Because, with or without you, she and I are BEATINGCOWDENS together.
Some time in the middle of this winter that lasted forever, I started to notice people complaining about a sidewalk near my school that was often left icy and uncleared. The grumbling that would take place was sometimes quite extensive, and I admit to spending a day or two doing some internal grumbling myself. Then I decided to cross the street. It was a simple idea. Just because I had ALWAYS walked on that side of the street, didn’t make the other side a worse choice, nor was it inconvenient. It was just different.
Soon after I decided to cross the street I found I was less cross myself in the mornings, most of which were rushed and hurried, navigating snow and ice covered streets and looking for parking safe for my very low Sonata. One day I even found myself talking to one of the neighbors near the icy house. She volunteered to me that the elderly couple was not well, and while neighbors did their best to keep up, it wasn’t always possible. Made sense. My grandparents are in their mid 90s and live in their own home. They have kind neighbors who often clear their walkway before family can reach their home. But, what if they didn’t. And what if we didn’t live close? It’s easy to judge. I’m guilty too. But I’m working on a simple move, we’ve come to call – “Flip it!”
We talk “Flip it!” when it’s something that can be fixed. When it’s a negative thought that can be changed.
I’m not suggesting the world go all “Ms. Mary Sunshine” all the time. As a matter of fact the person who always flippantly replies,”Could be worse,” to EVERY situation, often drives me mad. Sometimes things just stink. Sometimes they are even worse. But, for most of us, for the day to day stuff, if we just grab a different perspective, things change quickly and significantly.
I think all this came to mind tonight as I sit, preparing to return to work after Spring Vacation.
This was not a fabulous vacation, but yet nothing awful happened. We cleaned lots of things. We saw a few doctors. I made some phone calls. We got through some necessary spring shopping for my girl who managed to outgrow her entire wardrobe again. Yet, I have this feeling in my stomach, this queasy Sunday night anxiety, that reminds me no matter how much I like my job, I’d rather be home with my girl. Even in this “preteen” phase of our lives, she makes pretty good company.
So, as I started to get down, I was reminded of a dear friend, buried under more than her share of worries, who called to tell me she was being laid off. By no fault of her own, I might add, and I was jolted by the reality that the job market isn’t as good as those of us in pretty secure jobs like to think. It made me think that going to work tomorrow, in a building where I am comfortable, with staff and students that are generally nice to be around, and where I will get paid via direct deposit on the 1st and the 16th is a privilege. The alarm will hurt a little. But I will, “flip it.”
Shopping wasn’t easy. There are shoe challenges for this beautiful girl whose feet are each growing at their own pace. But, we found what we needed, even when I had to buy two pairs and toss one of each a few times. There is a dress for Arista, and a dress for the swim dinner, and one for her grandfather’s 80th birthday. There is a beautiful young lady. So while the shopping pricey, that job security was a comfort. When shopping for shoes was terribly frustrating, like a kid in a candy store who can’t eat anything she wants, we remained grateful. In the most basic forms of gratitude, she has her mobility, she has immense upper body strength to compensate for a weak knee. We have the means to keep her dressed as she needs. Can’t always have what you want – but, rather what you need. “Flip it.”
We didn’t make church as a family of three today. Meghan didn’t leave her bed till after 1, even with the blinds wide open and the bright sunny day on her face. The fatigue was too much. The thyroid hormones still unbalanced. The exhaustion from just being “normal” is too intense sometimes. But I got there. To celebrate our pastor. To worship in a room full of kind souls. To watch a baptism, and to pray. I was alone, but yet I was reminded that I am never alone. “Flip it.”
On April 20th we will make an unscheduled stop to the dermatologist. There is a suspicious mark on Meghan’s side. While no one is panicked, living with Cowden’s Syndrome, and our obscenely high cancer risks, make everything all the more unsettling. We will get it checked, and hopefully it will become quickly a memory. But, we won’t wait. Cowden’s Syndrome is a burden. There is never a break from screenings and testing, and checking. But, we get to strike first. And no matter how overwhelming this battle becomes some days, I am always close in heart with my loved ones who have battled cancer, and those who are battling it now. Our screening and preventative medicine while cumbersome is a gift. “Flip it.”
My heart and my head are full all the time. Sometimes I can keep it in check, and other times I need to remind even myself to find way to “Flip it.”
In every house, on every street, in every city, in every state, in every country in the world, EVERYONE HAS SOMETHING. It is our awareness of others, our ability to see things from another perspective, to know when to make others laugh, and when to hold their hand, to know we are not alone in our struggles. That is how we define where our life will go, and the mark we will leave on the world.
I’ve wanted to talk to you ever since you rudely introduced yourself to my family in 2011. Actually it wasn’t even a proper introduction. It was more like, “I’m here. I’m staying. What are you going to do about it?” In hindsight, you’ve probably been with me from the very beginning, an explanation for the years spent in surgery for random growths all over my body. And you know what? I could have kept quiet about things. I could have plodded along removing lumps and bumps as they surfaced, praying they remained benign. But, you crossed a line. You messed with my girl.
I went all those years not knowing. I never understood why I seemed to spend an inordinate amount of time in doctor’s offices, generally being made to feel like an idiot for things they could not explain and did not understand. But, I’m a mother now, and mothers get over those things because nothing is more important to them than the health of their children.
So when my then 8 year-old was introduced to you at an incredibly tender age, the mother beast in me came alive. Before I could even contend with your existence I had to run damage control and get out in front of the storms you were plotting and planning. I had to read and research and learn, because with an occurrence rate of 1 in 200,000, I typically knew more than any doctor we met. And with our PTEN (tumor suppressor) gene officially listed as broken, the words cancer, cancer risk, and potential malignancy became part of our every day vocabulary.
That entire first year I was sure we had lost our very existence to the routine screenings you require. A doctor for every body part, and a pediatric and an adult version of each no less. Scheduling was a nightmare. It’s a wonder I kept my job and my sanity. And my girl, almost like a deer in headlights, tired of being poked and prodded and treated like a pincushion was getting plenty annoyed. She’d already had 8 surgeries, and a ridiculous number of biopsies and MRIs before we met you. Now there was this road ahead that was just flat out exhausting. There were worries heaped upon worries. And it got old real fast.
Our friends have tried to hang with us. And they are an incredible lot. But, it gets tiresome to hear that things just keep on coming, and that nothing here is “all better.” Understandably, many of them have had to pull back. Their own lives are busy. Things continue, and just because you want to have your way with us, the world can’t stop spinning. We miss socializing. We miss casual get-togethers. It’s hard enough to even visit properly with our family in between appointments, and hospital stays and the few activities you haven’t taken from my daughter.
Let’s talk about that for a minute. Let’s talk about the pain. The unforgiving knee pain that affects every aspect of her life. Let’s talk about having to quit soccer in 1st grade, and dance 2 years later. Let’s talk about her desire to run track that can never ever be. Let’s talk about my girl, born with the heart of an athlete who keeps getting the rules changed on her.
The knee! The right knee. The one that has hurt since birth. The one where the AVM (arteriovenous malformation) was supposed to be resolved in or or two embolizations. Until they learned of you. You would be the reason it continues to plague her, change the course of her life, and cause her undue agony on a daily basis. You would be the reason the 5th attempt to fix it in November after 50ccs of blood leaked into her knee joint essentially failed. You would be the reason we are awaiting a 6th surgery on the knee. This one with the orthopedist and the interventional cardiologist at the same time. One will assess the damage from all this blood, and the other will have another go at this AVM.
The AVM. The likely reason the feet are now a size and a half apart. Continuing to make life easy for my girl aren’t you?
And while we’re at it, let’s talk about the thyroid. The 19 nodules you allowed to grow there, until “precancerous” prompted complete excision. We beat you. We got it out in time. But, it was real close, and I didn’t like it one bit. And as payback, 13 months later, the synthetic hormones still leave her chronically wiped out, and running on raw nerve. The endocrinologist is confused. He offers no explanation as to why it’s not ok. They offer me no answers about the effects on the body. Because they don’t know. You’ve kept them confused, and it’s wearing on my nerves.
But, you know what? You won’t win. Not here. Not in this house. Not with my daughter and I fighting you every step of the way. We like to call ourselves “Beatingcowdens,” because we are. And we will continue to.
See, you messed with the wrong women here.
After we dusted ourselves off and learned to schedule the screenings and tests and surgeries on OUR time, we started to breathe a little. There are so many. But, they don’t OWN us. Plus, I went on ahead of you and got some things removed. That “prophylactic mastectomy” that turned into “thank goodness she got that DCIS we didn’t know was there out in time…” well, that was a HUGE win. And the hysterectomy before the uterine polyp could change its mind from benign to malignant. Winning.
My daughter has decided to become an advocate for rare diseases. Her work has begun small, out of a need to educate the people who judged her for sometimes needing a wheelchair to contend with that knee. It started with some business cards that explain what Cowden’s Syndrome is. It blossomed into assemblies at school, newspaper articles, and a friendship with our Borough President.
She took to the Global Genes Project, and their logo, “Hope, It’s in our genes.” She had a friend make a denim ribbon necklace. And “identity piece” for her. She learned about all the rare diseases she could, and how so many of the babies who can’t speak for themselves need our help.
She embraced the creation of the PTEN Hamartoma Tumor Syndrome foundation in 2013. She carries hope that one day their work will affect change directly in our lives.
She met up with friends through my online connections. She corresponds with Colorado and Australia.
In February, with only guidance from me, she organized a “Jeans for Rare Genes” fundraising breakfast that generated $12,200 for her two favorite charities. Over 150 people attended that event. Community support was overwhelming.
Oh, and the heart of an athlete you tried to take from her… you lost there too. She is a swimmer now. And this year she qualified for Silver Championships in the 100 butterfly for her age group.
So, despite what you may have tried to do to our lives, you are losing terribly. You are something we will have to deal with for the rest of our lives, but you will NEVER own us. You may try to be pushy. You may be downright rude, hurtful and insensitive at times. But, that’s OK. We’ve handled worse than you, and we’ve come out just fine.
As a matter of fact, maybe I should say thank you. Thank you for lighting the fire in our bellies. Thank you for helping us find our self-confidence. Thank you for giving us the fight that forces us to never ever give up. Thank you for teaching us that we can make a difference. Thank you for empowering my beautiful young lady with a forceful strength that WILL change the world.
It was about 4 in the morning on March 5, 2012. I was laying on the bathroom floor, vomiting the contents of my “nothing to eat or drink after midnight” stomach. I was dizzy, lightheaded and weak. The task looming ahead that morning was unlike any I had ever been through.
As I lay there, trying to gather every ounce of strength in my body, I thought about the whirlwind that had been the last 6 months. Just barely 6 months prior my daughter, and then I, had been diagnosed with Cowden’s Syndrome. I had read and researched and didn’t like much of what I saw. I digested elevated cancer risks in just about every body part – some of them astronomical – as I tried to triage the onslaaught of new specialists taking over our lives.
Cowden’s Syndrome was an explanation. It wasn’t something we had just “caught.” She was born with it, and its likely that I, a “spontaneous mutant” was born with that “frameshift mutation” on my PTEN gene as well. But now that it had a name, and a definition, now that there was knowledge, there was also responsibility.
We had Meghan to the endocrinologist almost immediately and 4 nodules were discovered on her thyroid. Emotionally scarring biopsy followed. We met an oncologist for intake as well. And I, I was set to deal with all those “peak at 40” risks that were now presenting like a time bomb in my own body.
I sat up when Felix came into the bathroom. I don’t remember much of our conversation. Somehow I got myself up and dressed and into the car.
We drove to NYU in a good deal of silence. I am sure I cried a lot. I shook quite a bit too. But it was time. The decision had been made.
Soon after diagnosis I was sent to a breast surgeon to address the 85%+ risk of breast cancer in Cowden’s Syndrome patients. I forwarded her my medical records before the appointment. At the age of 38 I had racked up 7 breast biopsies and had a mother who was a bilateral breast cancer survivor 15 years earlier. We barely had said our “hellos” when she told me, “It’s time to schedule a bilateral mastectomy.” I wasn’t stunned I admit, because I knew it was a possibility, but the matter-of-fact certainty with which she spoke was a bit unnerving.
“You will get cancer,” she told me. “It’s not a matter of IF, but WHEN.”
I asked if it could wait till July. She said absolutely not. March 5th was as late as I could push her.
She ordered an MRI in February “just to be sure” everything was ok. The MRI was clean.
Just a normal “prophylactic bilateral mastectomy.” If there is such a thing as “normal…”
I met with the plastic surgeon, arranged for the implants. I blatantly refused tissue expanders, much to her chagrin.
My mom, during the time of her surgery had once called her breasts “superfluous tissue.” I tried to keep that in mind when I was making mind- numbing decisions.
We got checked in at the hospital before 7 AM. There was a whirlwind of doctors and nurses traveling through. Some had me signing consent, others were checking various things. I wanted to run, and scream. I felt like I was stuck in a bad horror film. But, I sat. And I signed papers. And I waited.
And then it was time.
It was a long walk to the operating room after I kissed my husband. I couldn’t much control the tears. I was terrified. The last thing I remember preoperatively was my surgeon looking me right in the eye and telling me, “You’re doing the right thing. You’re doing the brave thing. There is NO other choice for you.”
I woke up hours later in recovery, and after first verifying that the anti-nausea meds had worked, and I had no urge to vomit, I checked out the bandages covering my chest and I felt… sweet relief!
Even now, as I think back three years later, I am certain that was my first, and most genuine emotion. I felt relieved. I felt empowered. I felt victorious. This was one battle Cowden’s was not going to win. We played on my rules and my time… ok, well the doctor’s time… but still! I knew of too many lives lost to breast cancer, and I would not be one of them. One less worry. More time to be the Mom and help my girl through this genetic mess.
I left the hospital about 28 hours after I got there. The drains were the worst of it all. There was pain, no doubt, but it was all tempered by the peace in my soul. Mom stayed by my side for days, and we had some of our best conversations as I sat in the glider I had used to rock my baby Meghan to sleep 8 years prior.
Pathology was almost an afterthought for me.
That was why I was taken by such surprise when, 8 days later, the surgeon removing the drains said, “you made the right call.”
At first I was confused. I thought maybe she was just advocating my decision. Then she showed me the multiple page pathology that cited 1cm of DCIS (Ductal Carcinoma in Situ) a “self-contained” malignancy. There were all sorts of other markers too. Cellular changes to indicate things were starting to go very wrong. Because the DCIS was so far from the chest wall, I would need no treatment at all. An hour before I didn’t even imagine I had HAD cancer. Now, I was being declared cancer free.
“If you had waited for July to get this done, you would have likely been in a fight for your life.” I will probably never forget that sentence.
I stepped onto the street in NYC with my husband and my daughter. We all took a moment to digest what had gone on. We hugged. Then I grabbed hold of Meghan.
“You my dear, saved your mother’s life.”
Confused, “How do you figure?”
“If it wasn’t for you Meghan and your diagnosis, no one ever would have pushed me into this surgery. I would have found the cancer much later. Possibly too late. I am going to be Ok BECAUSE of you…”
As we let the gravity of that sink in, it was the ultimate lesson in perspective.
The steps that put us in line to have her, and ultimately me, diagnosed were life altering in so many ways.
Every piece of our past is a bit of the puzzle we are forming with our lives. Some of the pieces are confusing, and don’t seem to fit. But, sometimes we just have to wait patiently and watch.
Well, I wish I had a short term memory
Wish the only thing my eyes could see
Was the future burning bright right in front of me
But I can’t stop looking back
Yeah, I wish I was a perfect picture of
Somebody who’s never not good enough
I try to measure up but I mess it up
And I wish I wasn’t like that
I wish I wasn’t wishing anymore
Wish I could remember that nobody’s keeping score
I’m tired of throwing pennies in a well
I gotta do something
Here goes nothin’
It’s day one of the rest of my life
It’s day one of the best of my life
I’m marching on to the beat of a brand new drum
Yeah, here I come
The future has begun
Day one
Well, every single day Your grace reminds me
That my best days are not behind me
Wherever my yesterday may find me
Well, I don’t have to stay there
See my hourglass is upside down
My someday soon is here and now
The clock is tickin’
And I’m so sick and tired of missing out
It’s day one
And here comes the sun
Every morning, every morning
Every morning, mercy’s new
Every morning, every morning
Every morning, I will fix my eyes on You
Every morning, every morning
Every morning, mercy’s new
Every morning, every morning
Sun’s coming up, the beginning has begun
Starting over, I’m starting over
Starting over, I’m starting over, starting now
I’m starting over
Starting over, I’m starting over
Starting over
Starting over, starting now
I’m starting over
I vaguely remember a shirt my older sister used to wear when she was swimming. The message was something like this.
It was motivational, meant I am sure to remind the young swimmers that their fatigue from grueling practice would translate into race times that would forever keep them proud of their accomplishments.
And in that case, I hope the pain, the pain of lap after lap, translated into successful meet times that led to a gratifying feeling of pride.
But what about when it’s not that neat? What about when you can’t sort it out in a package, or tie a bow on it?
There is emotional pain. The empty pain of loss.
As I type, I have two lit candles on my desk, celebrating the 60th birthday of my uncle in heaven. The pain of his wife, his children, his mother, my dad, (his brother,) can not be explained. The loss is raw. The pain is an open wound.
I think of my college roommate, and her nephews and sister-in-law preparing for Christmas without their 36 year-old father.
I think of the loss of my Dad, just over a year ago, and the flood of memories and seasonal connections complicating my every thought.
I think of the loss of our beloved Allie Girl last week.
I think… and I think. And I know how badly it hurts. And I know we are so far from alone. I am grateful not to be able to imagine the depth of the pain some feel.
Pain is temporary…
There is the pain of anxiety. Very real. Depression. Equally crippling. I’d be lying if I said I haven’t battled with both my whole life, amped up by this Cowden’s Syndrome torment under which my girl and I will live forever.
Try as I might, the worry is stifling. The sense of urgency all the time is exhausting. There is little room for error. Screenings, medications, lab work, surgery. All scheduled with precision to conserve sick days and minimize missed school. Except when I can’t. Like when it’s an emergency. Then we just roll with it.
The anxiety weighs on my girl as well. 11 years old, trying so hard to be normal, and to fit in. But, the reality is there is no “normal.” So she fakes it as best she can, blessed to be surrounded by some spectacular kids.
But, she gets mad. Mad at the doctor, mad at her knee, mad that she takes two steps forward and three steps back, in this poorly choreographed dance she is forced to participate in. Mad that she can’t be “the best,” because her own best is unacceptable to her. And some days when she is extra mad, I wonder about the thyroid. Cause its absence affects all things. And this week came the phone call that the numbers have increased 400% over the last 3 months again. So we continue to raise the dose of a medication that I don’t think does a damned thing for her. We play the game while I search, frantically for someone to “get it.”
Pain is temporary…
Except when it’s chronic. And it involves every single minute of every day. And the one medication that does work is off-limits. And the surgery to plug the hole in the artery that was likely provoked by the absence of THAT medicine, causes and abundance of scar tissue and this feeling of a lump the size of a cashew or two exactly where the knee should be able to bend. And you have no way of knowing if its going to get better, or happen again. Any minute.
And the pain, well if it was only in your knee it would be better. But it’s in the shoulder, and the neck, and maybe it’s caused by the feet over a 1/2 size off, or that slight curve in the lower spine, or something else no one cares to figure out.
So, you gather your spoons. And you borrow a few.
And you press on. Through sixth grade and onto the principal’s honor roll, and through student council, and drama club, and fundraising activities, and swimming your butt off. Cause what choice do you have?
Pain is temporary…
We talk about injury pain, vs healing pain. Tonight’s pain counts as the healing type cause it was generated largely by exercise. This pain is movement in the right direction. Swimming heals the soul.
You have to find what heals the soul, or you will lose your mind. There is no other way.
Pain is temporary… cause it needs to be.
You have to find what brings you peace.
Two weeks ago on December 4th, I chose this. The butterfly breaking out of the cocoon. Free forever.
I miss my Dad.
My heart is full.
But we press on. Because pain is temporary. Even for all of us in the middle of the worst pain of our lives. The sun will shine again.
Channeling that energy into raising awareness, fundraising, and helping those whose sun hasn’t come back up.
beatingcowdens 