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.
It’s not unusual at all that a classic Beatles song would show up on a classic rock station in the car. And I could write it off as mere coincidence. But, there was my Dad this afternoon. In the car, with the sun shining. Reminding me…
Here comes the sun, here comes the sun And I say it’s all rightLittle darling, it’s been a long cold lonely winter Little darling, it feels like years since it’s been here
Here comes the sun, here comes the sun And I say it’s all right
Little darling, the smiles returning to the faces Little darling, it seems like years since it’s been here
Here comes the sun, here comes the sun And I say it’s all right
Sun, sun, sun, here it comes Sun, sun, sun, here it comes Sun, sun, sun, here it comes Sun, sun, sun, here it comes Sun, sun, sun, here it comes
Little darling, I feel that ice is slowly melting Little darling, it seems like years since it’s been clear
Here comes the sun, here comes the sun And I say it’s all right Here comes the sun, here comes the sun It’s all right, it’s all right
Dad never worried much. And that had its down sides – I’m not going to lie. But there was this calm about him that I was able to appreciate more as an adult. I would call him all spun around, and somehow without belittling what I was worried about, he was able to help me take a few deep breaths.
Our problems here are real. They are ever-present. They can captivate, and get a downright choke-hold if we let them. The worries are real. The concerns about the future. About mobility. The concerns about the present. About pain. About fatigue. About swelling. And looming surgery. The long-term effects of an AVM that seems to be affecting foot size, knocking a growing girl off-sides. The concerns about the uncertain make it hard sometimes for me to find the sun.
There are normal “issues” too. Ones we don’t write too much about here. Bumps in the preteen world. Learning as we go. Along together. Grateful for what, and who, we have to work with in this house.
Yesterday it was dark. Really, really dark. My gut drew me to the cemetery, where I hadn’t been for a while due to the snow. And as I walked up the hill I saw the white piece of granite. I think I knew it was going to be there. And simultaneously I was glad and sad I was alone. I cried like I haven’t cried in quite some time. There is something about the reality of loss etched in stone. The permanence strikes in a whole new way – and its like being kicked in the teeth all over again.
There’s a certain finality of reality etched in stone…
I sat in the car too shaken to drive. And I called my husband, and then I called Alan. Alan is one of Dad’s Marines who has stepped into my life in such a huge way over the past year. We have yet to meet, but we have spent hours on the phone. He has laughed and cried with me. He has told me stories of things, and people I needed to know. He sent me a book a few months ago called “90 Minutes in Heaven” and simply wrote, “Read this.” I haven’t read a book in quite some time, but I did as I was told… and I was so grateful. My Dad merited a Purple Heart during his service in Vietnam, but technicalities being as they are, it won’t be awarded. Alan’s efforts on Dad’s behalf over this last year and a half were Herculean. Marines never leave a brother behind. So, as I viewed the government issued headstone, without the Purple Heart I had envisioned, and fought for, it stung a little extra. But just when I was about to crumble these two birds flew in low and close. There was a peace about them as they flew past into the park. I understood. It’s about way more than the awards. It’s about the love. And the peace. And the lessons learned. And the heart and eyes open for growth. And “Uncle” Alan made me text him when I got home. Another testament to his love for his “brother” extending right to me.
This morning we all made it to church. It hasn’t been an easy feat these last few months. We three entered Castleton Hill Moravian, and I was struck by the sense of warm familiarity. Next Sunday, Easter Sunday, will mark two years of membership for us. Never did I expect to leave my home church. Never will I quite get over that loss. But, I am amazed, impressed, and inspired by the way my husband and daughter have become motivated members of our new church. Gratitude. Palm Sunday, a day of ‘Hosanna’ and celebration, foreshadowing the lowest days, leading us to Easter Sunday next week, and the promise of the Resurrection.
The winter was too much. In so many more ways than the relentless weather. The worry. The heavy hearts. I missed Valentine’s Day, and St. Patrick’s Day, and never took the eggs out for Easter. I didn’t realize how very much I needed the sun- literally and figuratively.
Today Meghan swam. Another CYO meet. She blew my mind. Again. I can not for the life of me get over her stamina in the water. It’s her “happy place” and she’s most terrified of her upcoming surgery because of the time she will need to be away from the pool.
Her team loses every meet. But the friendships they form, and the positive attitude can not be traded for high scores. She became a swimmer because this team took her in when she had never swam competitively.
The 25 fly… (red cap)
The first leg of the freestyle relay.
We had friends spontaneously show up to cheer her on today. Perhaps they sensed the lowest lows… We spoke of summer, and gathering in the yard – just because.
We drove home with the sun warming the car. The temperature read 50 degrees on the dash-board.
This week we will wait for the results of the blood drawn Saturday. This week will be just 4 days as Easter Vacation approaches.
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.
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.
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.
One of those multiple meaning words that seems to get tossed around a lot this time of year.
Reflections for me are necessary as a part of who I am.
As the new year approaches, I find that I hear the same sentiment over and over. “2015 Will be a (great, better, good, fabulous…) year.” Often I hear people say, they are “due,” and it’s their “time,” or their “turn.”
And that’s not to say I don’t know countless people who have suffered gross misfortune. And it’s certainly not to say I don’t wish them all a break. It’s just I’m not sure what difference a minute makes, really.
I am reminded of the conversation I have with my youngest students several times a week. December to January is a matter of a minute. One to the next, and the calendar changes.
I guess it’s none of my business this notion that the new year will make things better or different. But, I just don’t really buy it.
I like the idea that the year starts over again. I have always liked that about teaching – the ability to start fresh every September. But to me that is a more authentic change than New Year’s Day. At least in school it IS a new year, new schedule, new students…
Maybe it’s the fact that the last few years feel all drawn together in my mind. And they haven’t been all bad. Just quick. Fast-paced. And maybe a little tiring.
Truth be told, though, there is no real indication that 2015 will be any different from 2014, or 2013, or one of the rockiest of them -2012. The change of month and year will not alter many of the things currently set in place. There is Cowden’s Syndrome to fight. There are relatives and friends struggling with health issues. There are things that just are.
But, what will remain the case in 2015, is currently the case right this moment. I will wake each morning, put my feet on the floor and find something good to focus on. I will shake off the pain. I will be a role model for my girl. I will eat the most nutritious food I can find, and share my passion with whomever will listen.
I will question doctors. I will question everything and get the best care I can for my girl. I will adore my husband, and love him the way he loves me. I will follow the lead of my daughter and strive actively to help as many people as we can. I will work on staying calm, and not sweating the small stuff. Because that is how I get through every day. All year. And some days when we are very tired, we will just be. And that’s ok too.
Although, I’m not beyond reflecting on the last 12 months, in the year we often dubbed “The year that everything broke…”
I spent January sorting through my father’s apartment after his death in December 2013. It was a whirlwind that ended December 4, 2013, when he passed from a battle with pancreatic cancer, and the carry over was evident in my dining room for the early part of 2014. I made phone calls, wrote letters, and did what I could to address inquiries and settle affairs. And still a year later there are pictures to be sorted and water marked… soon.
In February Meghan’s thyroid finally gave out. And was taken out. In the middle of a huge snowstorm that led us into the Ronald McDonald House in Manhattan the night before. And we spent a few weeks with the largest part of the recovery, which included a medication reaction and another overnight hospital stay. Almost a year later her Synthroid dose fluctuates every 6 weeks and doesn’t seem close to being regulated.
Trying to distract the pain away.
There was the identity theft that targeted me in March and got right into my bank account. There were headaches, and police reports to follow, but they had nothing on the fraudulent tax return we learned had been filed in April. Hours and hours, and months of waiting. We have it all fixed. Almost.
The spring was a constant juggle of pain. An indicator that the thyroid removal had altered the balance in the body as far as I am concerned. That theory was further confirmed when Meghan spent a week in the hospital in May with severe gastritis. It was the culmination of a spring where things just seemed to be getting worse. We met a gem of a gastroenterologist who was able to settle a few things, but after an endoscopy we left with news of severe esophageal damage. Her medication was blamed. The same one that had been helping us manage her constant pain, and had been diffusing the activity of the AVM in the knee. We also left with a diet exponentially more restrictive than the one she was already on. Ironic maybe that the fryer we had, had broken the night before we went to the hospital. We certainly didn’t need THAT anymore.
And then we said goodbye to the Saturn. The 1996 Saturn that was the “extra” car that was so handy to have, was towed away in the spring after a few failed attempts to fix what surely was the start of a failing transmission. We are a one car family for now.
Even in the “happiest place on earth” Meghan’s stomach “broke” again. Scaring the heart out of us, causing a visit from a Disney doctor for which I am still trying to coordinate payment from the trip insurance company. Fortunately it didn’t derail our trip. But, it reminded us that everywhere we need to have our guard up. Everywhere.
And our Allie Girl in July had 5 teeth pulled in quite the procedure of a surgery. It didn’t take her long to start eating again, but my nerves, and my visa were permanently affected.
There was the pool that kept having a “little” leak. Until it was consistent enough that we left a hose in the pool. Until I finally bit the bullet and called for a leak assessment. And just like that the pool was being emptied for its liner to be replaced. At least it will be ready for us in the summer.
And the bay window. The one that developed some dry rot after a call to the window company 2 years ago led to a ton of red tape. By the time they came to see if the damage was covered it was too late. And just like that we were replacing the bay window we had put in 14 years ago. And once you cut a hole into the wall… It was like a bad version of the book “If You Give a Moose a Muffin…” Almost the whole house got painted as Meghan moved her room upstairs, and we cleaned and sorted and purged…
The very end of August my Grandma, Dad’s mom, had a stroke. And we hoped and hoped that it would get better. We visited, and chatted, and spent as much time with her as we could. And she went from the hospital to rehab, to the nursing home, and declined every step of the way. She remained pleasant and agreeable until she passed away October 22nd – less than a year after we lost my Dad.
The first “great-grandchild”
Early in September Meghan fell and there was a stress fracture in her foot just in time to start 6th grade and a brand new school.
And in the fall the washing machine gave up, and a new one found its way into the basement.
In November Uncle Jerry, my Dad Ken’s brother passed away. Just shy of 60, he was taken way too soon by cruel cancer. GGPa, his Dad, was taken from us in June of 2012. Too close. Too much. Too sad. Just wrong.
And as I traveled home from the funeral in Vermont I went to pick Meghan up at swim practice. And as she walked out of the locker room she collapsed. The pain in her knee was too much. Emergency surgery the next day at Lenox Hill revealed a pea size hole in the artery of her right leg at the AVM. And what we saw coming 6 months prior when she stopped the medication because of the gastritis had happened. The AVM was back in a foul mood. 50ccs of blood drained from her knee joint. After 5 procedures in there, at only 11 the knee will never be what it should be.
This is about 50ccs of water – roughly the same amount of blood that filled her knee joint.
We spent Thanksgiving at home, just the 5 of us. Felix, Meghan and I, and Allie and Lucky. We decorated for Christmas, while Felix made a fantastic dinner. And it was ok to be housebound. Together.
There had been too many funerals this year. Too much loss. In my immediate and extended families, and the families of friends. We needed some time to enjoy our innermost circle of 5.
By that time memories of my Dad’s passing a year earlier were taunting me. Maybe I looked the other way at the earliest signs that Allie didn’t feel right. Maybe it wouldn’t have mattered. But, we got home from celebrating cousin Kim’s wedding, and it was evident that my Mom was even worried about Allie. A walk the next morning with Felix where she gave up mid way prompted a vet visit that Sunday. After x-rays of her belly that were inconclusive, and some medication for pancreatitis that we were pretty sure she didn’t have, we took her home. We diligently gave her medication and prepared chicken and rice as directed, but by Tuesday she wasn’t eating. And THAT was NOT like her. So I took her back on Wednesday hoping for a new medicine and grossly unprepared for the vet to tell me it was time for her to be put down. So in between tears I gathered my family and waited. I held Allie for hours while I waited for them to arrive so we could all say goodbye together. December 10th we lost a good friend, and a key player in our family of “5.”
I ended the year breaking the vacuum the day before Christmas Eve.
And as I sat to reflect I remembered that still in the chaos that sometimes ensued, never were we to be defined by Cowden’s Syndrome. We are to be defined by other things. The ability to; persevere, love, lose, cry, laugh, sing, smile, appreciate, endure.
Because you see Cowden’s Syndrome is with us every day. Of every year. For the rest of our lives. But it can not BE our lives.
However, it has taught us some good lessons. Life changes quickly. If you aren’t paying attention you might miss it. Don’t be complacent. Ever. And be as prepared as you can while never making firm plans. Cause life is not designed for “firm” plans, but better suited for goals.
And don’t wait to make those goals. Or to carry them out. You don’t need a new calendar, or a special occasion. Just do it.
Treat each day as a gift. Be the best YOU that YOU can be, all the time.
Be honest. Don’t be afraid to love deeply. The pain of loss is horrendous, but without that ability to love deeply there would be a good deal of much needed compassion missing from a world that is already struggling.
The best thing about reflections, is they encourage you to continue onward…
Last summer we invested in a new roof for the house. I’ve never regretted it. Truth be told we had no choice. There were leaks and dry rot. All sorts of potentially serious places for significant damage. Lots of horrendous storms have pounded down on this roof since the summer of 2013 – both literally and figuratively. But we’ve stayed safe and dry. I have to figure its some combination of strong plywood, and a well done roofing job, coupled with our strong family bond, deep faith, and our ability to keep laughing.
The weather forecast this week is pretty awful. And I started thinking about how, “into every life some rain must fall.” And I started to wonder, whether maybe we’ve actually had enough rain.
Cowden’s Syndrome brings its own share of cloudy, overcast, generally awful days. And life, well it can get dicey and complicated even without Cowden’s Syndrome. This year has been wild. Full of so much sadness, and hurt, and sorrow. And in between there peeked in some fun, happy times.
This month has been tricky.
These last 2 weeks….
I’m really starting to think it might be time to consider an ark. I’m not wallowing. Nor do I think we are the only ones buried enough to need that ark (we’ll share,) but wow. Just, wow…
Two weeks ago tonight we rushed Meghan to Lenox Hill Hospital for emergency surgery on the AVM in her right knee. The 50 ccs of blood were removed from the knee-joint, and by Wednesday we were sent on our way. Thanksgiving weekend was spent home. Low key. Leg up. Resting.
We had goals. All geared towards December 8th. Goals set by the medical team. Swim practice was to begin again tonight. And Mom, FYI – goals are different from plans… 🙂
We slowly weaned off the crutches, and the pain medicine. We moved to an ace wrap as needed. By last Monday the 1st she went to school still in pain, but unassisted. The swelling was going down. The healing had begun.
But by Friday she couldn’t do it. Had to stay home because of the pain. The swelling looked a little off too. More rest.
Sunday she woke up late and come down the stairs declaring the pain was worse – and “different.” The knee looked horrendous. And very similar to its pre-op state. More resting. Some pictures. Some brainstorming.
ER 11/24Living room 12/7
All the while Allie, our oldest dog was having troubles of her own. Allie, lethargic for a bit – collapsed on a walk. Felix called me to pick him up carrying 70 pounds of dog. Off to the vet for abdominal x-rays and a negative test for pancreatitis. There was no discrete mass of the x-ray, just some shadowing. They decided to try to treat for pancreatitis despite the negative test. There aren’t too many other good options and I am worried.
And so we got medicine for Allie, and got her boiled chicken and rice for her bland diet.
And we took pictures of Meghan’s leg and elevated the knee.
Today we got up early to give Allie her medicine together.
Then Meghan dragged her painful, aching leg around school until I could get us an appointment.
1:30 arrival at Lenox Hill. Sonogram initially showed no blood. Then, wait for it…. there it is. But no obvious spot its coming from. Shocking really. Could it be residual from the procedure two weeks ago? It looked to be about 5ccs. Nothing compared to the 50, but I remember a time less than 5ccs of blood in the knee-joint freaked them all out. Now all of a sudden – we’ll just wait and see.
They used words like “discomfort,” and “irritating.” She used words like, “excruciating.”
Not the first time we haven’t seen eye to eye. But he’s all we’ve got. One of very few doctors in the north-east to operate on these in kids.
I get not racing back in. I do. But validate the kid for the love…. I know she’s super sensitive, but that just means she feels EVERYTHING, INCLUDING the stray blood in her knee.
Wrap it. Elevate it. Put swim off another week. (Tough talk from the guy who initially said she wouldn’t even need crutches.)
In the car Meghan told me to get my Christmas shopping done. Just in case. She hopes she’d wrong – but it doesn’t feel right.
My money’s on her- and it’s a bet I hope to lose.
Allie, she’s super mushy. Who knows?
Online shopping here I come.
I’m done with the rain. Really over it. Rainbow anyone?
It’s always a good time to be grateful. Especially Thanksgiving week with catastrophe averted. Even full of memories from a year ago, I feel gratitude.
Just a week ago I wrote a post called “Plot Twist”
where I mentioned the AVM in the knee was starting to become a problem.
One day I will learn to trust instincts. I will look back on signs and think – I should have seen that coming. But, for now I remain a bit of a slow learner.
See, in May when we ended up with the gastritis mess, there were warning signs. For days prior she spoke of the “fire” in her throat. Of this general feeling of being unsettled. And then everything broke down.
Monday was not the first time in recent weeks she had complained about the knee.
In August, about three months after we stopped the Celebrex, there were signs. Subtle signs. We went for the MRI. We went for the visit. The doctor saw “something,” evidence the AVM was still “live.” He told her to wait until there was pain, and then come see him. Our appointment was for December 1.
The pain has been progressive. But, right or wrong, having a rare disease, and living with a child who has one too, I often have on my “suck it up and let’s go” personality.
“Mom, my knee hurts. I think it’s swollen.”
“Yes. it’s a little swollen, but mine is too. You’ll be ok.”
“Mom, my leg is throbbing. I can feel it pulsing.”
“Mine does that too – here, feel. Now let’s go – we have to get to school”
Ok, so looking back, perhaps these are not normal conversations. I am in consultation with a vascular surgeon to address the messiest of my leg issues – as soon as I can fit it in. Maybe most parents would have been more bothered. I mean I WAS bothered. But, if I stopped every time – goodness, we’d never even get out of the house. If I addressed every pain – I’d give this disease more power than I’d like it to have.
So for now, we “suck it up” together. Different. But the same.
We talk about other people’s pain. We wonder about different types of pain. We think about what it would be like if the pain could be fixed. We wonder about kids who use pain as an excuse. We acknowledge that you can never know what goes on in someone else’s body.
So we adopted positive thinking and visualization. She drew a smiley face on that knee to convince herself she could get through it. And she pressed on.
Sunday, while I was in Vermont, she was at a swim clinic. And Monday, she finished an hour and change of practice. Walked past me smiling. Walked out of the locker room and basically fell to the floor.
I did some more of my “suck it up” talking, as my heart sank. This was the real deal, but we were too far from the car. Everything about her body language told me we were in trouble. I finally, by Grace alone got her into the car, and headed immediately to urgi care. We lasted about 10 minutes there before we were booted to an ER. The leg was getting frighteningly larger by the moment.
The knee with the AVMThe “good” knee
My gut. My instincts told me to go to the knee surgeon. So we threw a bag together and got to Lenox Hill Hospital on 77th street.
After I got them to page her doctor, we immediately were notified we’d be admitted.
When we got to the room at 4:30 AM the tell-tale “NPO” (nothing by mouth – for any surgery rookies) was on the door. Can’t knock the kids timing. I knew he operates Tuesdays.
The team arrived mid morning to assess. They set her up for 1 PM surgery.
“That’s blood. And it has to be taken care of now.”
Ok – show me where to sign.
Blood and joints don’t mix. Not without consequences. This I know from experience with this child.
Get it out.
And as I waited… that awful waiting time… my mind wandered. I thought about her swimming, and the time she is trying so hard to beat. I thought about how much harder she’ll need to work to get it back together. I thought about it being unfair. And I thought about a mom in California whose extended hours on the phone to me as we were panicking and newly diagnosed were of such solace. I though of the hell her girl has gone through. Over and over. Then I thought about my internet friends in Australia. One young lady who had her thyroid removed AGAIN. Yep – two partials, and then one side GREW BACK. Unfair. Then the ultimate lesson in unfair in the countless brain surgeries, 10, 12 hours at a clip for a young woman with a similar vascular condition to Meghan in a much more dangerous place. I thought about her life on hold. I thought about her recent surgery derailed as they discovered multinodular goiter on the thyroid. I wished I could have tea with them. Right then. To talk to someone who does this. This hospital thing. This surgery thing. Like its their job. Cause that’s just what we do.
And there are no contests. No one has to have it worse. No one makes you feel like it’s not important. This just is our life. This is life with Cowden’s Syndrome. Beat it. So it doesn’t beat you.
And when they came to get me, to tell me she was in recovery, they told me they drained 50ccs of blood out of that knee-joint. Apparently there was a hole about the size of a pea. It got plugged. A fast flow leak. They hope that’s all of it.
This is about 50ccs of water – roughly the same amount of blood that filled her knee joint.
Flashback to 2012. Last surgery, when the doctor was so unsettled that there was ANY blood in the knee-joint that he told us about the damage it could cause and sent us to Boston for a consult with a doctor who could scope the knee-joint. And we went. But we never went back. Things got better. We started Celebrex a month after that surgery in 2012. That was number 4. Number 5 was yesterday.
In 6 weeks we’ll go back for post-op. We’ll talk about whether things are better. There is someone in New York, on his team, doing that scope now – if she needs it.
In 6 weeks I hope she’s kicking some serious butt in the pool. I hope this is a memory. An update in the growing medical file.
Sometimes the only option..
This is life. This is life with Cowden’s Syndrome. This is our life.
Everyone has something. And yes, it could be worse. But right now, at this moment – we are tired. And that’s OK too. I am emotional, remembering a year ago today we admitted my Dad to the VA hospital that he would never leave.
Thanksgiving will be quiet tomorrow. Just the three of us. And reflective. This week is going to be wracked with emotion.
For tomorrow, I’ll take the fact that my husband makes a mean turkey and a fantastic Gluten Free stuffing as a win.
The little things ARE the big things. We ARE BEATING COWDENS!
I used to be afraid of roller coasters, and their short, fast twisting, turning excitement.
Then I realized roller coasters and life have a lot in common. So I started riding them, cause really -what the heck?
If there has ever been a lesson in the unpredictable nature of life, I am confident it has played out in the last two or so years. And I am confident I have studied hard, and that I understand. I understand that just when you think you might understand – you don’t.
You see, just when you think you may even comprehend the every-changing, unpredictable nature of life around us, there will inevitably be a way to prove to you you don’t have it quite right.
There have been more funerals this year than I care to count. Maybe its always like this, and I am just noticing now that 40 is behind me. Or maybe not. But there have been funerals for friends, for the brother of friend, for my own father, for my uncle, the precious father of three beautiful adult children, and for my Grandma, and a well-loved great-uncle, and the grandparents and parents of friends… and…
As I sit here thinking about all of them I try for the umpteenth time to rationalize. And I get farther with some than others. Some will just never do.
But the ultimate realization is that it’s not really mine to figure out. It’s not mine to decide how it fits in the grand plan. And I’m trying to stop looking to figure it out. Because, boy it can be exhausting.
And as I sit here in the wee small hours of the morning, I remember – that painful Thanksgiving week last year, as Dad fought and fought, and I wonder why. But, as much as I miss him, it’s not in a pitying kind of why. It’s in a genuine curiosity for something I will likely never be allowed to understand. Very much the way he used to ask me why he made it home from Vietnam and his friend Tommy didn’t.
It’s the same kind if why when Mom asks, why after being 18 years a breast cancer survivor, why she is “clean,” and so many have lost the fight.
As I listen to the rhythmic snoring of my husband, and watch my fidgety sleeping 11-year-old, I wonder.
I wonder how we ended up here – again, on the second floor of this hospital. Today. Now.
12 hours ago I thought I was tired. HA! What did I know.
450 miles in about 30 hours to celebrate the life of a great man, my uncle. Lots of driving, lots of thinking, lots of observing. Lots of admiration for his children, grown up children, who undoubtedly will make him proud forever with their compassion and good humor. Lots of respect for his wife – living her marriage vows through all the crappy stuff with poise and dignity. Lots of awe for my other Dad Ken, and GGMa, his mom, as they stood together, their original immediate family ripped in half in just over 2 years time.
12 hours ago I thought I would go to bed early.
But I ended up picking Meghan up from swim practice on the way home from Vermont. And she walked out of the locker room and almost fell to the ground with tears.
“I can’t walk. It’s my knee.”
And I checked off the list – Did you fall? Did you bang it? Did you hurt it doing dryland? One at a time I asked the questions, even though I knew the answers.
This knee. The one we’ve been waiting for since we stopped the celebrex had finally given way.
We had had hopes of finishing swim season first. That was before we had to refocus our hopes to making it into urgi care without falling.
We were promptly told to get out, and get to an ER. Fast. The swelling was too big.
Still in my funeral clothes I raced home long enough to tell Felix to dress for work, and to get into some sweats. A quick bag for Meghan and I and we were off. This time to Lenox Hill ER. Cause that’s where they do the knee surgeries. And not that I’m trying to plan. But just in case… Maybe we should be at the right place.
They contacted her doctor. He’s sure it’s the AVM, but he’ll confirm in person in another hour or so. In the mean time nothing to eat or drink for Ms. Meghan after midnight. Just in case.
beatingcowdens 