And in her never-ending quest to keep Cowden’s Syndrome firmly in its place, my girl blew me away yet again.
I am just along for the ride.
She looks like me. She and I share a broken PTEN gene, and all the ramifications. She inherited my tendency to grow things, and perhaps her body is even playing harder with her.
We are roughly the same size. We have curly hair. We share some clothes. She and I are both stubborn, sometimes to our benefit and sometimes to our detriment. We are strong-minded and strong-willed.
And that is probably where the comparisons stop.
Yesterday after a full day of school, she fit in a PT session, 2 hours at after school drama, a good run at her abbreviated swim practice schedule (for the second day in a row,) and came home to complete some lingering homework.
Tonight, her father and I took her to the school’s chorus/drama performance. It was hot. It was long. It was so worth it.
The kids have amazing talent. I guess what I didn’t really get until tonight is that mine fits right in.
After a skit on Helen Keller, where she played Annie Sullivan, she stood with several 6th-8th graders and they each sang acapella, an excerpt from a Broadway show tune.
Meghan had never heard of “Fiddler on the Roof.” She downloaded the song she was told to learn. She practiced. I fought back tears of pride and joy.
I told her drama teacher I had no idea she had that in her. The teacher told me to “wait and see what we bring out of her in the next 2 years.”
What a gift. Two happy places. The stage AND the pool. BAM!
People count all sorts of things. Among the things we count are surgeries.
Although the most recent ones have been predominantly knee related – 2011, 2012, 2012, 2013, 2014, 2015… we don’t forget the others that fit in. And we don’t even try to talk about them without the three page cheat sheet detailing the most pressing medical information. We don’t talk to over zealous residents without the 32 gig flash drive pulling up PDFs of old blood work and reports. (Saved her another stick today when I could produce a recent normal liver enzyme panel!)
So today, surgery number 13, was not a surprise. It was anticipated and planned very deliberately for months on end.
The day started before 5, scheduled for a 6 AM arrival. But, in reality it started last night. Bags were packed to include clothes, toiletries, snacks, electronics, chargers, and our shakes too.
We got up and out quickly. No fanfare. No time for a “selfie” of the three of us in our “Never Give Up” T-shirts. We checked in just past 6 and shortly after were performing all the typical surgery routines.
It is funny. There are two groups of people in my life- those who have similar numbers of surgeries to us, and the larger group – those who have had next to no surgeries. The first group understands surgery “routines.” The second group raises some eyebrows. They are horrified at our use of the camera in the hospital. But this is our reality, and I can pack for surgery as well as I can pack a carry on for vacation.
We were greeted in pre-op by about a half dozen people all asking exactly the same questions (even though they and I had the cheat sheet, we still had to play the question/ answer game.) Several consent slips were tossed at me. The anesthesiologist and Meghan made a deal involving the timing of the IV and the mask. Felix was given the necessary garb to walk into the OR. I stole a few extra minutes to clarify the plan with the orthopedist.
And I must confess there was some major anxiety. See, the plan as I saw it was for her to have the AVM embolized while the orthopedist cleaned out and searched for the elusive “leak” in the artery. That’s why we coordinated surgery times. Except, as it was presented to me today – the vascular guy wasn’t touching the AVM unless it was absolutely necessary. This was a far cry from the report after the MRI in January when we were told another embolization was necessary. But, it was now in the moment. They had a plan and I had to play along. The orthopedist promised me the vascular guy would be there while he poked around at the beginning in case he was necessary. He also promised me he would do his best. What more was there to ask, I guess.
In the waiting room I thought. Too much. But, when I was just about insane with my thoughts, I let them wander to Ashton and Suzannah, and the number of hours involved in EACH of those procedures, and I tried to feel better.
After about three hours we were greeted by the orthopedist. His words were varied, but included “not as bad as I expected,” “quarterized several spots that were leaking blood,” and, “cleaned out a good deal of scar tissue and debris.” He gave us some pictures to see his work, and left us to meet up with Meghan in recovery.
She woke up slowly, but well, and soon she was alert. While she spoke to her dad I fielded detailed questions from several more people who held the cheat sheet. I took out my copy and obliged them with answers. She woke in the most terrible kind of pain, curtailed by a dose of morphine and some ice. Lots of ice. For Meghan. And for me- as I managed to bang my head on the table. Insert exhaustion here.
The pediatrician on call was relentless reviewing the three sheet medical history. Eventually we got our room, and some time around 2 we were greeted by friendly nurses, a nice bed, and some more pain meds.
Things were settling a bit until the “Inquisition” took place in the form of that previously mentioned pediatrician. I have to tell you she succeeded on really aggravating my last nerve. She actually handed me her copy of the “sheet” which had been copied to just about every department so she could ask me the same questions. By now the fatigue was starting to set in. I resented the implications that it was somehow my fault no one was “running” my daughter’s medical care but me. I explained carefully that I was jaded by years of dealing with sub par medical professionals. She did not take the hint and proceeded to contact my pediatrician to tell him she disagreed with one of Meghan’s medications. Whatever… Truly. Spend some time learning about Cowden’s or ANY Rare Disease. Then we’ll talk.
Arrogant self- importance. Ugh.
We were called down to radiology at 2:30 so the feet could be X-rayed. The orthopedist believes, acknowledges, and is searching for an answer on the foot size discrepancy. Results tomorrow. In the mean time his caring makes him my current favorite.
Pain medications in place. Crutches safely in the corner. Lights are off. Movie is on. And the day is just about over.
Tomorrow we SHOULD be home.
For now, number 13 is in the books.
And my happiest news of the day came when the anesthesiologist said
The early hour usually means I would be at work. Instead, I am sitting on the 10th floor, in the waiting room. Again.
Right now my beautiful girl in undergoing surgery number 13, the 6th on her knee. The goal is to stop the blood that has been leaking into her knee and causing degeneration and chronic pain. This time there is a new doctor at the helm, an orthopedist from Long Island. Our vascular guy, the leader of surgeries one through 5 on that same right knee has taken a back seat. He is on standby. We are sitting.
Waiting.
Alone with our thoughts. Not always my favorite place.
These last few weeks have been a whirlwind. When we met the orthopedic surgeon in February, and Meg said May was a good time for surgery, she had certainly calculated her plan.
Over the last few weeks, we have been busy packing in as much good stuff as we could fit.
The school play, her first production, was April 30, and May 1. It was such a thrill to watch the spirited enthusiasm from my daughter and all the other children. She is hooked. And while drama practice was going on 5 days a week, she was still making three swim practices a week, working hard to finish out strong. As a result she received the “Coaches Award” at the team dinner last week, and she was moved “up” a level. She was able to practice with her new group starting Monday, so she got in 2 practices before this procedure will derail her for a bit.
She also almost finished the CYO Swim season. Making 7 out of 8 meets (the last one is May 9th) she swam hard and strong one day each weekend as well.
In the midst of all this, she managed to balance her time well and was inducted into Arista, the National Honor Society.
All the while we looked for spring clothes, and shoes (in 2 different sizes) for my beautiful 5 foot 5 young woman.
I know there are people who are busier. I know multiple kids jostles the world. But, I also know I am proud.
She ran on raw nerve. She pushed and pushed in ways that would have taxed a healthy child. And she made it. Sunday’s morning swim meet was a no – go, but I am just so impressed she accomplished all she did.
And just for fun she broke her first pair of glasses yesterday. Not bad for a kid whose had them since K. New pair already on…
And I’m impressed I got her there.
We like to convince ourselves that we are just like everyone else. But the reality is that this genetic disorder messes with our bodies and our minds.
As I said to the nurse this morning when she wondered why Meg was a little edgy, “It’s not you. You are just an ACCUMULATION of her life. Step by step. Poke by poke. Surgery by surgery.”
I think she got it. Maybe. As the woman in the bed next door in preop – clearly in her 60s, said she had never had surgery before.
So very hard to believe.
I’ll update later. I’m waiting. Cheering my kid on as she continues to be BEATINGCOWDENS.
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.
To some people the idea of celebrating a “cancerversary,” or the anniversary of the day you became a “survivor,” is silly. But, to someone who is date obsessed, it makes sense to celebrate the victory. It’s not about remembering the bad. It’s all about celebrating the good. The reality of the here and now.
This morning my daughter handed me this letter – typed from her computer by her own hand. I am sharing it – as it was written – with her permission.
Dear Mom,
I love you with to infinity and back. You are the best mom I could ever ask for and I am so glad that you found the breast cancer early. I could never imagine a life without you. You have always stood by my side, and protected me. Even when I say, or do some stuff, I hope you know that that does not change what I feel towards you. Love. Compassion. You have been my guardian angel in small ways and big. You make sure my shoes don’t get eaten!, you hold me tight and talk me through tough nights, and you are always there for me when I am in pain. When I am in the hospital you are there when I can’t walk, when I cry out in pain, and when too many thoughts come rushing into my head. You have this unique ability to just make people smile, and you are the most pure-hearted person I know. You do for others, even though often you never get a thank you, or some king of acknowledgment. You are kind to a fault. Mom, you have made such a big impact on my life, I would not be me without you. You know what, if I kept going on, it’d be the year 3001! Anyway, back to the point. I love you more than you could know, and I am so grateful to have you as my mom.
I love you mom,
my guardian angel
Meghan
Really? What more could I want? Except for a LOT more “cancerversaries” to watch her grow up and change the world…
Today Daddy and I watched you swim in the Silver Championship meet. It was your first qualifying meet, and it won’t be your last. We find it amazing that you qualified, and for the 100 butterfly no less, in only your second year of swimming. To say we are proud would not even begin to define how we feel.
Today was just another example of how you amaze us, astound us and impress us. I know, parents are supposed to be proud of their kids. I get it. But, when I think of what you go through each moment of every day, I truly am left in awe.
I get that you like swimming because you can feel “normal.” There is no special treatment in the pool and the clock forgives nothing. Cut times are clear and either you make it or you don’t. Believe me, I don’t look to make excuses for anything or anyone. You know that I can be kind of tough. (I get that from Grandma, along with a bark that’s worse than my bite… :-)) But sometimes in those moments when you are your toughest critic you have to allow yourself the same forgiveness your warm heart offers to others without hesitation.
Living with Cowden’s Syndrome is a tenuous balancing act. To stay on top of things the way you do takes intense effort. I think most people would be physically and emotionally exhausted to live your yesterday – let alone your every day.
Last night when your back gave out, and the pain was too intense for me to even touch you, I gave you every out. I gave you every excuse not to swim today. You wouldn’t hear of it. Your hips, the exact point you need your force to kick for your favorite butterfly were tender to even the gentlest touch. It took you hours to rest because your body allows nothing to contend with the pain. So I held your hand as you wiggled and squirmed for hours. I reminded you I loved you as you desperately tried to rest. I stroked your head when you finally passed out from exhaustion. And I was glad the lights were off to hide the tears that stained my face. Tears, not of pity, but of grueling agony of watching my dearest love suffer some more. I knew as I laid there it was unfair. That your knee was still hurting too, and now your back. I knew I made no sense for all this to be coming the night before something you wanted so badly.
That defines your life. Sometimes the hits are small and consistent. Sometimes they come out of nowhere, but you just keep going. You just keep fighting. And truth be told, you inspire me to do the same.
Yesterday we went to look at shoes. You’ve been complaining for months that your left sock is tight. The orthopedist measured your feet and acknowledged the 1cm difference between them. But, I don’t think either of us took in the reality until we were in the shoe store and saw this.
Left FootRight foot (AVM leg)
Another realization that we needed to go about things a different way. So we picked out your shoes, ASICS GT 2000 3 in a 9.5 and a 10.5 and we spoke to the store manager at Dick’s. He will help us. Because we asked. But, I know it got into your head. The wonder about the upcoming surgery in May and the worry about what this AVM is doing to your knee in its spare time. And I HATE not having any answers for you. But I don’t. I can only promise to be with you every single step of the way.
And as I got your pills out yesterday morning, and I helped open your thyroid pills, I thought about the year since you had a complete thyroidectomy. It was just over a year ago you became a thyroid cancer “previvor” when your 19 nodules, including three precancerous ones, came out with your thyroid. It occurred to me for about the 5,000th time this year, that your thyroid is STILL not balanced. We don’t give up. We keep trying. But its you who has to wake up every day and function ok soar, with levels that would leave people 2 and 3 times your age crying in their beds.
So when you took the block today, I took a moment to take it all in. I took a moment to take a good look at you, and I swear I could see the heart of a champion beating in your chest. I saw your green and black suit, and your prescription goggles, but in that moment I saw your raw heart. I saw the feisty determination that gets you through each day.
You might not have seen your best time on the board. But, me, I saw a champion.
The free dictionary defines a champion as:
cham·pi·on
(chăm′pē-ən)
n.
1. Onethatwinsfirstplace or firstprize in a competition.
2. Onethat is clearlysuperior or hastheattributes of a winner:a champion at teaching.
3. An ardentdefender or supporter of a cause or anotherperson:a champion of thehomeless. (or those with rare diseases – Ok I added that)
4. Onewhofights; a warrior.
And while you may not get a first place medal, you have won by walking through the door. You have overcome greater odds than anyone ever really knows.
You take the high road, even when it’s the tougher one to walk. You put other people first. You advocate for those less fortunate. You stand strong for what you believe. You excel in school. You soar at your extra curricular activities, and even within the pain that is relentless, you are an athlete too. You my girl, are a warrior, a true champion. Because as you get older you will come to realize that success is not defined by the highest grades, or the most first place ribbons. Success is defined by your character, by the person you are.
So my girl, when you lay your head on the pillow, know that I admire you with every aspect of my soul. Know that I respect that you daily work to be the best YOU, you can be. Know that YOUR BEST is ALWAYS good enough. Know that your compassion changes people. Know that you, in your own way are making an impact in this world. And most of all, know that you have two parents who love you more than you can possibly understand.
Thank you. For being more than I could have ever hoped for in a daughter. For even though we will hit rocky roads sometimes, we have seen so much, side by side and hand in hand. You my girl, have the heart of a champion, and there is no one I’d rather travel this bumpy road with than you.
World Rare Disease Day is February 28th. Although the actual day is February 29th (the rarest day…)
It is a day of raising awareness across the globe about the 7,000 rare diseases that plague 1 in 10 people.
Our fundraiser has ended for the year. Our checks have been sent. All that’s left for tomorrow is our denim ribbons and our shirts. This day is right up Meghan’s alley. Meghan, whose entire platform has become raising funds and awareness, relishes a day set aside for just that.
Although some days I suspect it would be easier to be an advocate, rather than a patient AND advocate, I suspect am sure that we are more effective advocates BECAUSE we are patients too.
I get that not all diseases, ailments, or medical issues are “RARE.” I also fully understand that that doesn’t make one more important than the other. It’s just that when you have a chronic illness, life is really challenging. When you have a chronic illness BECAUSE of a RARE disease, that really has NO treatment, and definitely NO cure, some days the hill seems insurmountable.
I texted my husband yesterday afternoon to let him know I was going grocery shopping. He told me I was nuts. A week post-op from vascular surgery that put 25 incisions in my right leg, he might have been right. Except he didn’t argue. Timing would not allow him to go.
Grocery shopping in my house is an endeavor. I cross a bridge, and hit not one, but two stores – miles apart before returning home after about a 4 hour round trip. It’s one of the few things easier in the winter – as I don’t have to pack ice!
Why such a journey? Meghan.
Among other things I have learned from my daughter, she has inadvertently schooled her parents on the value of nutrition. Meghan has had food “issues” since birth. Slowly we have played and peeled away and adjusted her diet to be free of Gluten, Casein, and Soy, as well as most dyes and preservatives, and highly acidic foods. She takes digestive enzymes with every meal, and a host of nutritional supplements.
She went from grossly behind in speech/ language to miles ahead. She surpassed extensive sensory issues.
I don’t cook. Ever. But, I shop. And it’s my job to make sure the tools are in place to whip up tasty meals for Meghan, and all of us. My husband never disappoints. He is creative, tasty, almost passionate about Meghan having a culinary experience she will enjoy. He is fantastic.
I shop at Wegmans. And at Whole Foods. Most things Meghan eats are organic, and by default a lot of ours is too. My grocery bill is usually about half a mortgage payment every 3 weeks by the time I feed the dogs too. It is the sole reason we don’t settle all out debt. And it is worth every penny. Nutrition is without a doubt the best investment I have made into the health of my child.
The game changer was the addition of a nutritional cleansing program I have come to trust into her diet. Felix has been using it for almost three years. Meghan and I for about 18 months.
Felix needed to lose weight. But almost as an after effect, after losing 50 pounds, he noticed he felt great. I cautiously introduced the product to Meghan in slow, low doses. Once I was clear she had no reaction, I went all in. For well over a year now she has had a protein shake for breakfast every morning, and since starting school she takes a meal bar for lunch on school days. Over 40 grams of healthy, well-digested protein a day, and this child has done nothing but grow!
Growth spurt? Maybe. But the hair, the skin, the nails, the teeth. She glows of good health. She missed her shake for 2 days a month ago. She had a tough swim and felt awful. Coincidence? Maybe. But she’s not even taking chances any more.
In my house we have a protein shake every morning, and Meghan has some organic, home-made waffles too. We don’t just trust any protein shake. Ours is high in whey protein from “happy cows” in New Zealand. And my girl who can have no dairy at all without severe pain – tolerates these like nothing.
Leaves a mom to wonder- maybe it’s not a “dairy” allergy, as much as a “what’s fed to the cows” allergy?
I could debate processed vs. natural vs. organic all day. What I have here is results.
When you are fighting a rare disease, you need to have the best food in you as possible so you can battle like a champion.
Meghan got out of swim practice tonight. She never gets out of the pool. Her coaches know that. I know that.
“It hurts Mom.”
Dropping stomach, smiling face…
She knows. All of it. Whether I say it or not. She misses nothing the doctors say, and despite my wishes they ALL talk right in front of her.
She has earned the right to sit out. Her coaches know how hard she works. She waited for starts – to get a few in before Sunday’s Silver Championship meet.
On the way to the car she told me she wasn’t sure the knee would hold till May.
I am still waiting for a call back from the orthopedist from last week. Apparently her notes are being typed. He can’t possibly speak to her case without them. He saw 65 patients the day we were there.
The knee is swollen. We will try ice. Hopefully that’s it.
“What if it’s blood?”
“What if it’s not?”
That’s kind of how the conversation went.
Truth is, neither of us know. So we will press on. We have the main plan – the one that lasts till May. And we have the back up. The one where we just yell “plot twist!” and go with whatever happens.
Why did I go grocery shopping last night? For Meghan. For her food. And so she sees me press on. Despite being hurt. Because if I don’t press on through tough times, how can I ask the same of her?
My Mom may not have a “rare disease,” but I learned stubbornness, stamina and work ethic from her.
Rare Disease Day 2015. It’s not so much about “celebrating” as it is about advocacy and awareness.
Because the under diagnosed, the underfunded, and the often ignored – matter. Very much.
I don’t know why at this point I’m not used to it yet. But, as I sit here with my leg elevated recovering from a vein stripping on Thursday, I find it hard to imagine it hasn’t been quite a week since “Jeans for Rare Genes” took place.
Acknowledgements have been sent by Email. Some are waiting for the mail, and others will be delivered to the local businesses that supported us in the next few days. We wanted everyone to know that what we considered a lofty goal of $10,000 to be donated to the PTEN Hamartoma Tumor Syndrome Foundation, and The Global Genes Project has been surpassed. The checks are still being counted, and the final payment from eventbrite is due any moment. But it looks like the total will clear $12,000 before we are through. Not too shabby for the vision of a feisty 11-year-old who has already begun to make tentative plans for what we will do even better “next year.”
And as I’ve digested the success, and have processed the overwhelming pride of a mother, and expressed our gratitude to family and friends near and far, (like the Yokleys from Colorado!) I’ve taken some time to reflect. Standing before a room filled with 150 of our friends and family on a bitter cold February morning left my insides warm and toasty from the love surrounding us.
Life moves quickly. For all of us for different reasons. But, with this syndrome x2 life seems to be literally swallowed by doctors, and tests and surgeries, with every spare moment trying to shove “normal” into the cracks. We miss stuff. A lot. We miss friends, and gatherings and social events, and celebrations, and ordinary get-togethers. We are absent more than we are present. Our friends and extended family are often neglected as immediate family has to occupy any moment that isn’t already full. I don’t actually remember the last time we had friends for pizza, or a casual summer gathering on the deck by the pool.
And I think about the pure innocence and wisdom of Meghan and Connor, as they finally met. Two friends from miles apart, with a life altering syndrome in common. Two bright, funny kids who have seen more than their fair share. Two kids who get compassion, and understanding, and life. Two sets of parents, immediately at ease with each other because we understand. And sometimes that’s all you need. And if you missed the two articulate, wise beyond their years, kids talking to the local news – click here.
I think about Georgia, a world away in Australia, and how she and Meghan have hit it off in a way only girls who share such a bond ever could. I think how wonderful it will be one day to get them together too.
And I think about Ashton, older than Meghan, but a girl on a mission all the same. And I think of all she has to offer the world, as she endures her 14th procedure on a stubborn AV fistula in her brain this week. I think about all the prayers we say, and all the questions Meghan asks. And her Mom. My peer. A Cowden’s patient too. A school teacher turned full-time mother later in life. Because it was meant to be. I think about the hours spent texting and messaging. And how I already feel so comfortable…
And I know that the room was full for them too.
I am grateful beyond measure for the ones who understand. Who don’t give up on us. Who stand with us, beside us, behind us, or just about wherever we need them to be.
I will resolve to try to reach out more. I just don’t know how many more hours I can squeeze out of a week. But I will try. Because the speed of life is astounding.
Sunday some of my college friends were delayed to the fundraiser. They were in the hospital with one, as her father was very ill. Yet, they found the balance. They stayed with her, and then came to us.
Thursday as I came out of I think my 7th vascular procedure I got the texts on my phone that things weren’t good. Her Dad passed away Thursday morning. My heart hurt. It was ironic really, as I had felt my own Dad ever-present as I got checked in and prepped. I got to thinking that out of 5 of us from college that I really stay in touch with, three had already lost a father, and one a mother and a brother. How did we get to this stage? How did life move so fast? And although my own recovery will keep me from making it to her side tomorrow, – I know she will feel the love in my heart.
We have to try to slow things down. Sometimes.
But, I’m not sure when. Or how. Because yesterday I sat in the back seat with my heavily bandaged leg, and we made the trek to Cohen’s Children’s Hospital on Long Island. And we saw an orthopedist about Meghan’s knee. Her vascular surgeon suggested we go – before the next embolization procedure in her knee.
Her MRI shows some damage to the knee structure. “Blood is a terrible irritant, even in small quantities…” And I would imagine that this AVM, probably active since birth, has been slowly eroding the knee. So there is swelling in the bone marrow, and issues with the patella, and all sorts of explanations as to why it keeps hurting. There is no real solution, but a synnovectomy will get him in the knee. He can “clean out” some of the scar tissue, and we can pray that gives relief and doesn’t provoke a “hyper healing” Cowden’s type response. But we have to try. They have to see. It’s time to get a real baseline.
So they will present her case next week. And we will hope that the recommendation is for the vascular surgeon to do his work on the AVM at the same time the orthopedist does his work. Because the recovery from the embolizations is tough. This one promises to be outright nasty. “At least a week on crutches. Minimum 4-6 week recovery. PT to build back the strength in the thigh muscle.” They will fill the knee with saline to get a clear view…
So he asked about her activities, and approved of swimming. Almost relieved when she told him she had given up soccer and dance because they hurt too much. He asked what strokes in swimming, almost tentatively, as if he was hoping for the answer he got.
“Butterfly is my favorite!”
And he looked relieved as he explained to Felix and I that butterfly kick was best on the knees. Meghan chimed in, “because you kick from your hips!”
We were once again impressed by her instincts and her depth of knowledge of her own body. She gravitated to a stroke most hate because it probably hurt her the least. We got the nod to let her continue freestyle and backstroke. But breaststroke is off-limits. Probably forever. Ironically – she never like that one much anyway…
We asked about the timing of the procedure. He thought before he spoke and told us he wanted to hear what his colleagues had to say.
We pressed him for early May. The tail end of the CYO season. The week after her first play, “Hairspray” at school. He told us to take it very easy. And if she doesn’t have another bleed before then, that’s probably a reasonable time frame.
“If… Probably…”
We should be used to all this by now. But, I think you never get used to watching your child get beat up over and over again. That’s why we pushed to try to plan… to try to squeeze in all the normal we can. Because she can’t keep having the fun taken away for the medical. It’s not ok. But, we plan very tentatively.
The speed of life can be overwhelming.
Thankfully we have so many of you along for the ride.
Next Saturday, February 28th is World Rare Disease Day.
Next Sunday, March 1st is Meghan’s first championship swim meet. Silvers. For the 100 butterfly – naturally.
beatingcowdens 