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.
First I was a daughter. A sometimes mousy, sometimes mouthy daughter. I was respectful, but hated to be stepped on. I wrote letters to the editor when I was annoyed. I let people know how I felt.
Then I was a teenager. I was full of opinions and was quite sure they were all right. I was willing to debate for hours, or sometimes stay really really quiet – stewing in my personal assurance that I was right and they weren’t.
I spent 4 years away at college. Even though I didn’t want to – lol. I will be forever grateful to my stepdad for his insistence that I drive, AND go away to college. I am not sure I would have done either. At college I learned to stand on my own two feet. I met all sorts of people from all walks of life.
By the time I hit my 20s life had educated me some. I still held strong convictions, but I was able to accept that it was ok for others to have their own. I gained the belief that as long as people were respectful – we could disagree.
In my 20s I met my husband. A match that many thought was destined to fail. And unlikely pair we compliment each other in every way. He was my missing piece.
In my 20s I became a teacher. A lifelong goal realized. I worked harder than I ever had in my life to be the best I could be. I recognized the magic of teaching. I became addicted to the “spark” in their eye when they “get it.” I came to see that my presence and my attitude were as important as my lessons. I taught/teach my students, my children – to see the best in others, and to tolerate and embrace differences respectfully.
In my 20s Mom had cancer. And I learned what it was like to be scared. And I learned what really really matters in life. And she fought, and she won. I always appreciated my family, but I learned to appreciate them even more.
In my 20s I got married. I got my Master’s Degree. We bought a house. We tore it apart. We fixed it up again. We got buried in debt. We worked hard to get out.
Then – just about when I was ready to turn 30 – we had Meghan.
Disney 2012
Mom said you do more changing in your 20s than in your teens. She was right. But as my 30s come to a close – I think they beat my 20s hands down.
In my 30s I learned to love my heart, outside of my body. I learned that I would never be as important as that little human we created out of love. I learned about family all over again.
In my 30s I learned to live without sleep. I learned to endure tears and screeching and pain as my heart ached for my baby girl. I learned that colic can last way longer than 3 months, and I learned to bounce and rock and sing and move for hours and hours on end.
In my 30s I learned how to balance two full time jobs, as a mother and a teacher.
In my 30s I learned what it was like to be truly terrified, as your baby went into the hospital, and into surgery over and over again.
In my 30s I became really close with God. I learned that my relationship with Him transcends walls and buildings and people. I learned gratitude, and I learned not to be shy about my faith.
In my 30s I learned that convictions can change. And the things I was sure I was right about 5 or 10 or 15 years ago…well, maybe I wasn’t so right after all.
In my 30s I learned that close friends share bonds that go past time and distance. I learned that even though I miss them, they are there when the going gets tough. I learned that EMail, facebook, and the internet, when used properly – are some of the biggest blessings in life.
In my 30s I learned that you have the power to make changes in your life when situations, circumstances or people have you angry, sad, hurt, mad, or generally annoyed. I learned doing something is way more rewarding that complaining.
In my 30s I learned if you believe in something enough, if you believe in someone enough, well even if you stand alone, you have to stand up for them. And I learned that if you do – they will be your friend forever and ever.
In my 30s I learned what it was like to hear the words “You have a Rare Disease.” I learned words like “Cowden’s Syndrome.” I learned about “tumor suppressor genes,” and “genetic mutations.” I learned about risks and tests that could take worry to a whole new level- if I let it.
In my 30s I learned what it was like to hear the words “You HAD cancer.”
In my 30s I learned which body parts are “extra.”
In my 30s I learned – because they made me- what it was like to tell your 9 year old, “The doctors are pretty sure you will have cancer.”
So much has changed, and yet at my core, my heart – I am the same.
I feel. Deeply and truly. I care. Often too much. I laugh, and I love with my whole heart. I know pain, and I know joy, and I have been intimate with both. I know fear and bravery. I know that I am not always right – but when I am… watch out. Because little will stand in my way.
I know life is not fair.
I know God is Good.
This weekend I went to 2 wakes. One for a woman who had lived a full life, and another for a young girl who sparsely got the chance. There are too many wakes. There are too many things that don’t make any sense. Too many people gone way too soon.
I can wail and cry and wither away in my sadness. I can let fear win – or I can stand strong.
Cowden’s Syndrome tries to win. It can strike fear in my core with a headache, or the sighting of a lump, or the feel of a bump. But I will not let it paralyze us. I will not let it win.
So we have our team of doctors. We have our visits scheduled. We check it all. Sometimes its tiresome. Sometimes its discouraging. But I would rather be out in front of the boulder – than under it.
This is really how I view the race against Cowden’s Syndrome
Through it all I know Meghan is watching. My student – learning from how I react, how I fight, how I handle adversity. My teacher – teaching me bravery, courage, candor, tenacity, and stamina.
I do the best I can to show her that its important to stand up for what you believe in.
I think she gets it. I know I do.
The 30s have been a ride, and I still have a few more months to go.
In my 30s I learned what it was like to total a car. I learned the frustration and injustice that often goes along with accidents that they would like to tell me I am powerless to fix. I also learned that even though there are in fact some things I can not fix – there are others I can and will speak up about.
If you happen to catch this before 10 PM – try channel 11 news “Help Me Howard.” Working with the neighborhood to change a few things at my car accident site.
I have this delusion in my head of what a Saturday should be. I think sometimes about getting up – not at the crack of dawn, but at a reasonable hour. Getting a quick breakfast and jumping in the car to head… well wherever we want to go. I think about spending Saturday as a family. Worry free. Relaxing together. Sharing an adventure.
Then there is reality. It has a way of biting you in the behind when you aren’t paying attention. (Or when you are practicing active ignoring.)
Reality is that we have two working parents in this house. That same reality that allows us to pay for the medical bills that creep up, and the fun stuff like vacations, is the same reality that means Saturday afternoon adventures are uncommon. Well, almost unheard of anyway.
I have a grocery shopping routine – down almost to a science. About every 3 weeks on Friday night, I go on the marathon. I stop at Costco, and run home with what we need. Then I head to Wegmans in Woodbridge, and Whole Foods in Millburn. The whole journey is about 40 or so miles, and it takes about 6 hours from door to door. Then there is the unpacking…
Why?
Well food sensitivities have kept Meghan gluten, dairy, and soy free since she was about a year old. She is also very sensitive to dyes, preservatives, nitrites, food coloring, and the like. Her diet is pretty much pure and organic.
Local shopping is not as plentiful as that over the bridge, and prices are flat out better there. So, last night as we undid the (ridiculous amount of money) worth of groceries, and I put a soup in the crock pot for today, I was about to fall over from fatigue.
The piles of laundry already covered the basement floor. The beds would need to be stripped in the morning. The bathroom was in dire need of a cleaning after my husband repaired a pipe that burst under the bathroom sink. I thought about shutting down the alarm and just letting my body do the talking this morning. I thought about it for about 3 minutes.
Then I took a flashlight into Meghan’s room. I covered her eyes and looked at the sores on the right cheek of her sleeping face. My heart sank. I turned the alarm on. I knew where we had to be in the morning.
In addition to having Cowden’s Syndrome, Meghan suffers with an immune deficiency. Well, technically speaking probably more than one. She is IgG subclass 1 deficient. Her body doesn’t seem to remember how to fight infections. She is also Mannose Binding Lectin deficient – a whole other element of the immune system – just absent.
Usually she holds her own. She takes a HOST of vitamin and mineral supplements. She eats that pure and largely organic diet I spoke about, and aside from seemingly chronic fatigue, she does OK most of the time. She can’t be running around too long or too often. She can not be over stressed. These things wear her out, and then we have trouble.
When she was just 6 months old she was first hospitalized with an infection of Herpes Simplex 1 (fever blister) on her right cheek. It was odd the location it started. It was in the middle of her face. Before we knew what it was it had become cellultis, and we spent a week in the hospital. The first 2 days were the scariest as the blister kept increasing in size. Eventually my pediatrician at the time called in an infectious disease specialist (my pediatrician now,) who swiftly diagnosed the herpes simplex, and began IV acyclovir. Within 24 hours things calmed down. A week after we were admitted, we got to go home.
However she never, despite a few miserably failed attempts, got off the acyclovir.
She spent another week in the hospital at about 20 months, treating an aggressive outbreak.
At one point we slowly weaned her to 500 mg a day only to have her develop a very painful trigeminal neuralgia which the oral surgeon wisely explained was caused by the herpes virus taking up residence in the trigeminal nerve in her face.
We promptly went back up to full dose, only to watch the pain fade away in a few days.
We have seen minor outbreaks through the years – usually nothing more than a red mark to indicate its time to do something. We have slowly watched her dose of acyclovir be increased. Currently at 80 pounds she was taking 1400mg a day.
We worry about the liver. About whether there are long term effects. But there really is not a choice.
That’s why as I shined the light on her face last night I knew this morning would involve a trip to the pediatrician.
We arrived bright and early and as he greeted us warmly he sized up her face in one brief glance.
“I see our old friend is trying to make an appearance. Raise the acyclovir to 1600mg. Move to 3 times a day to help it get through the system better. Take a picture every morning, and call me if it doesn’t improve. I will see you in 2 weeks.”
We stopped at CVS. We texted a friend’s mom for a play date. Then we got home at about 11:30 – drained.
Felix was working to bleach the bathroom – a job my asthma doesn’t allow.
There were human beds and dog beds to wash. There were floors to clean, and dishes to do. There was spaghetti sauce and some gluten free cookies to make.
As I heard the sound of giggling girls from behind Meghan’s closed bedroom door – I took solace in the fact that at least she had an adventure today. Even if it was in the house.
Cowden’s Syndrome and the immune system don’t seem linked on paper. But, anecdotally I hear of issues from every Cowden’s patient I correspond with. What goes on in our bodies to make it just so hard to put a virus to rest?
One child. One diagnosed genetic disorder on the tumor suppressor gene. A mannose binding lectin (a protein) that is also missing. An IgG subclass deficiency. Metabolic errors still being unearthed.
And I was looking for an adventure?
I should be happy and content with the Saturday cleaning. It is the most rest we seem to get!
I believe that there are lessons to be learned from every event in life- especially the ones that don’t turn out like we plan.
I believe in looking for the positives; when plans change without warning, when people disappoint us, when we are thrust onto paths we never wanted to travel and into circles we never knew existed.
I believe that our indoctrination into the world of Rare Diseases came with an invitation to sit back or step forward. We choose to step forward. I believe we will make a difference.
I believe in prayer, and God, and miracles, and angels – and I am not ashamed or embarrassed to say so.
I believe in a God that doesn’t plan for bad things to happen, and who cries with us when they do. I believe that same God will give us the strength to get through the trials and tragedies and all our adversity – if only we ask.
I believe in angels, and speak regularly of my cousin Meghan, our guardian angel. But, I also believe there are armies of angels around us. I am thinking especially today about the father and his 4-year-old daughter that were hit by a fire truck at the same intersection I had my accident in November. Nothing short of angels pulled them both from the car – shaken and banged up, but very much alive.
I believe in miracles-large and small. I have witnessed at least one large one, when my sister’s beautiful niece pulled through a very scary life threatening virus 2 years ago. I believe that miracles happen every day – all around us. But every day I witness miracles, as the flowers bud, and the birds fly, and the children grow.
I believe that adversity can only define us if we let it. Our struggles surely shape us, as we grow each day – but how we handle them affects us, and the people around us. I believe that Cowden’s Syndrome – through my daughter’s diagnosis, saved my life. I believe that PTEN mutations, and broken tumor suppressor genes are scary – but not “hide under the bed” scary. They are more like “you can try that roller coaster you don’t like” scary.
A roller coaster ride!
I believe we are allowed to be frustrated and sad and angry and mad. Every single one of us – sometimes. I believe that life can be very, very, very hard. Overwhelming at times. But, I also believe in doing my best to channel that energy, and teaching my daughter to do the same.
I believe in smiling more than frowning. I tell Meghan that she will draw more people to her with a smile on her face. She listens.
I believe that good things can come from unexpected change. New friendships and old ones become more solid when tested. People you never expected can go to bat for you – and look out for you.
I believe in surrounding myself with people who are “real.” Who say what they mean, and mean what they say. I believe in surrounding myself with people who have all types of beliefs, as long as they have a kind heart and are true to themselves.
I believe in speaking out about my own life, and my own experiences; whether they are medical, allergies, emotional, physical because keeping them inside doesn’t help a soul.
I believe writing helps me channel my own energy into a productive outlet. I believe I will spend every day on this earth in some way thinking, addressing, or working through a medical issue for Meghan or I. I believe – if I stay focused it will not consume me. (Although from time to time I may need some help!)
I believe that people who are only in this life to gossip and spread lies and false information are toxic.
I have made a pact to rid my life of toxins. I believe with a lot of determination it can be done!
Several months ago I wrote about “The Beginning of the End” Meghan was having trouble keeping us at dancing school. The pain kept getting out in front of her.
While in some ways the decrease in stress these last few months, plus the return of Physical Therapy twice a week, have helped her pain – but, it became increasingly evident dance was just not meant to be.
She was sick, and missed class. Then she was hurting, and missed another class. She missed the dress rehearsal and trophy night because she was home from school with a low fever. Always seems to be something.
So as we headed out to “Candyland” yesterday morning, we all knew it would be her last recital. The dancing takes a toll on her joints that it would be foolish to keep repeating. But, that didn’t dampen the mood on the soggy Sunday. Meghan was ready.
meghanleigh8903.isagenix.com
We started her day with the electrolytes from Isagenix that help her so much. Then we left her backstage at the theatre with all the other dancers.
It can get long when your dancer is in number 25 in a show of 27 acts, but I find the other dances entertaining, and before we knew it – she was on stage, ready to shine.
There was no pain evident in that body as the rush of being on stage overwhelmed her. She smiled and moved in ways my body just never could – or would.
When I met her at the stage door to bring her to her waiting father and grandparents, I had some flowers in hand for a job well done. She knew this was it for her, but as always – she kept looking forward. “I will get on stage again Mom. Maybe in Junior High, maybe in a theater program. I can’t keep dancing, but I love the stage.”
We took lots of great pictures. We cherished the memories. We enjoyed a nice lunch of Gluten Free pizza.
Yesterday was a rush
Today came the pain. The elbows, the knees. An epsom salt bath, and some relaxation. It helped some, but its hard to tell. She is so used to the pain.
And as she headed to bed, “How many weeks until my swim lessons start?”
Cowden’s Syndrome, you SOB. You may have me exhausted, but you picked a worthy adversary in my girl. She will not go quietly. She WILL win.
“Beatingcowdens” Not just a blog title, but a way of life.
May 16th for years has had a special place in my heart.
In 1985 my cousin Meghan was born. I was in the 6th grade and giddy to get to know her. I never could have known at the time that her life would be tragically cut short after a more than 4 year battle with leukemia.
“Angel Meghan” – 1987
Her feisty nature, her smile, her spirit, and her strength have always been an inspiration to me, and it was an honor years later, to be able to name my daughter after the spirited young girl who became an angel at 6 and a half, on my 18th birthday.
My daughter carries so many of the characteristics that endeared my cousin to me. She is the same kind of spirit, who lights up a room, and makes everyone smile by being around them. She endures medical procedures sparsely batting an eye, and accepts the reality of her life with grace.
Last year on May 16th I was at NYU hospital, just 10 weeks after my bilateral mastectomy, undergoing a complete hysterectomy. I knew that day I had the prayers of my family, and the strength of my angel by my side.
I have a “thing” for dates. I remember numbers. Maybe this is how my love of math shows through. I like answers, and things that are absolute, or make some sense. Maybe my recognition of dates, and anniversaries is a way of marking time – or maybe its a way of celebrating. These anniversaries that I remember – some sad, others bittersweet, have shaped me as a person. They are all pieces of that every evolving puzzle.
I thought about the surgery this morning. I thought about it being a full year since all my “girl parts” were officially gone. I thought of the perils of the hysterectomy recovery and how in so many ways this was a tougher surgery for me. Then I thought about my relief, and how much less of a cancer risk I am than I was a year ago. And I got dressed with a smile.
I thought about Angelina Jolie. I thought about how happy I am for her – that she was able to make an empowered decision to get out in front of her breast cancer risk. I thought about how happy I am that she has brought genetic testing into light.
But a few things have really bothered me.
PTEN mutations (Cowden’s Syndrome and the sister disorders) carry with them the same imminent breast cancer risk. I myself had been tested for BRCA1 years before I ever knew of PTEN. I was negative. The genetic counselor who tested me did not even have PTEN on her radar screen. I know its rare – I do. But I have to believe this is the opportune time to at least educate the medical professionals, if not the public, on the reality that there are other genetic mutations that carry imminent cancer risks. I am sure there are more that I haven’t learned about yet. Let’s use this opportunity to raise awareness not only of the “popular” genetic mutations, but of the others as well. Had my daughter never been diagnosed, by the well educated geneticist – it is likely I would not be here to write this today.
I am also bothered by the haters. You know the haters. The “Monday morning quarterbacks.”
They have crept out in quantity and I have a few words for them too.
BUTT OUT!
If you don’t like the idea of a prophylactic mastectomy – then don’t have one. Plain and simple.
If you don’t like the idea of a complete hysterectomy at 38 because the alternative was 4x a year – yes you read that right- 4x a year SURGICAL uterine biopsies, then don’t have one.
When you live with the Sword of Damocles hanging above your head every day, when you have to go about your business, and work, and raise a child, and pay bills, and shop and function with the feeling of impending doom that is sometimes hard to shake – when you have a diagnosis of a genetic mutation that is not going away no matter what you do. Then, maybe then you and I can talk.
Until then, wish Angelina a good long healthy life. Look up “genetic mutations that cause cancer” or “The Global Genes Project” or “The National Association for Rare Disorders.” Get a feel for what we go through every single day of our lives.
You probably wouldn’t know us if you passed us on the street. We are some of the strongest and bravest and smartest people you will ever lay eyes on. We stop and smell the roses. We hug. We smile. We laugh. We get how fleeting life is.
May 16th will always be a significant day for me.
But, moving forward -so will every day. The first year is over. Now on with the rest of our lives!
I remember being much younger and loving puzzles. We would set them out on the table at home and everyone would take some time trying to get it going. They were big and had lots of pieces and were often slow going at first. Everything looked the same, and sometimes it could take hours to fit in a few pieces.
Then, over the next few days, and sometimes weeks, with everyone taking a turn, slowly the picture would start to take shape and the puzzle would come together. It was always so exciting once you could make out the features, and so much easier to plug in the missing pieces.
I remember the feeling of satisfaction as one would be completed. There was something especially gratifying about those last few pieces. It was that feeling of satisfaction. We set out minds to this. It took a few of us, but we got it done. We figured it out – together.
By now you can probably see where I am going with this.
Today marks one year since I wrote my first blog post in 2012.
In one year the posts I have written have been read over 30,000 times. People have stopped by to read some – or all of our journey with Cowden’s Syndrome.
I have met other Cowden’s Sufferers through this blog, and on the internet. I have received messages, and corresponded with quite a few. I have learned their stories, and heard about their puzzles.
I have also “met” a few with other puzzling disorders,figuring life out and getting by one day at a time.
I am sometimes forever humbled, and amazed by the odd and abstract idea that people who I don’t know have gotten to know us, and used us as pieces to help complete their own puzzles.
I noticed a link on my blog today from “pinterest.” Having never been to the website, I clicked the link to find a picture of my family. http://pinterest.com/pin/290974825894950598/
I was pleased that it was used in its proper context, and was mentioned in terms of rare diseases. But, I was still amazed. Someone had read, and linked, and…
Well, the possibilities are endless. Thank goodness for the internet.
Where else would I meet people from all over the world,. and swap stories about a genetic disorder with an occurence rate of 1 in 200,000? Where else would I find organizations like
This last year of blogging has been an awakening for me. It has opened my eyes to so many other people, their stories, and the world at my fingertips. Since our diagnosis in the fall of 2011 it has become so important to become aware, to gain support, to advocate for others, and for ourselves.
I remember working on puzzles as a little girl. I remember that feeling of satisfaction when the puzzle was complete and the picture was clear.
I don’t do those kind of puzzles anymore.
Now I figure out how to prepare 2,000 denim ribbons and get them distributed on time for Rare Disease Day.
Now I work on helping my girl find her place in this world – trying to be a “regular” kid, yet undergoing so many more stressors than any 9 year old should.
I work on puzzles that lead us from one doctor to another, dropping them like leaves off the trees on a fall day.
I work on puzzling questions, and I persist until I get answers.
I get overwhelmed sometimes – looking for the pieces I can’t seem to find.
Sometimes I want the puzzle to have its edges all done, the way I learned. I want it to be neat. I would like all the matching colors to go together
But, that isn’t how life is designed to be. Not with Cowden’s Syndrome.
Not for any of us really.
Maybe it’s not a puzzle – but more of a domino game… branching off in so many different directions. Occasionally stopped by a dead end – only to find another path.
Or maybe it’s just a puzzle of an “atypical” sort. Not one that actually fits in a box. One that requires patience, time, dedication and focus.
In front of me tonight are 22 pages of blood work drawn on my daughter over the last month. There are some definite issues. My phone consult with her doctor is a week away. In the mean time I am left to try to put it together the best way that I can.
I handle each piece delicately, gingerly. I don’t want to damage anything, or miss anything either.
There is no picture, no model to duplicate. There are no directions. No guide. Just instincts. Prayer. Love and support of friends far and near.
Tonight I will study until I can figure out one more piece. Then there will be tomorrow.
The journey is long. The puzzle evolves. I am not going anywhere.
Stuck in a corner – a stifling corner, with anxiety, and all of its evil friends – we decided to break free.
And I can not think of a better thing we could have done.
Today was Meghan’s 3rd full day at her new school, and while she misses her friends – she is adjusting beautifully to the welcoming students and professionals that have greeted her.
She received an outstanding foundation at her old school – teachers who worked alongside her right up until we made the move last week. She received a foundation from them that will allow her to soar here.
I am eternally grateful.
But there is a time for moving on.
Sometimes it happens neatly at the end of 5th grade. And sometimes it happens before that. This was her time.
Which shouldn’t surprise anyone because nothing really seems to be wrapped up in a neat little organized package – not in life, and certainly not in Cowden’s Syndrome.
She changed schools, but the Syndrome stays. And sometimes that’s a hard reality to swallow.
See she is so excited to meet new children, and to run and play and socialize – we hoped that maybe the release of tension would eliminate the pain. It took a few days for the pain to catch up. But, it moved too. It lives with her – no matter what school. Although I am convinced it is less than it was.
Stress is evil. Tension is its nasty twin. The conbination wreaked havoc on her already struggling body.
Now, there is much less stress and tension, but there is still pain. A knot in the hip that doesn’t want to quit is pestering her still. And while I am grateful that the tolerance is higher, I am not sure if the pain is any less.
Any time an injury lingers, or a pain persists for more than 2 weeks – even if it is intermittent – we have to ask ourselves if it is time to go for imaging.
Xrays are not good for Cowden’s Syndrome. Radiation can send our sensitive cells into a tailspin. And the alternative – MRIs, are taxing – on everyone. But how long do you wait for a pain to go away when you have a syndrome that provokes tumor growth? How do you know what is the right time?
We scheduled the summer appointments. I was hoping to wait until then for all the check ups and tests.
Somehow, I suspect we will have to see someone a bit sooner.
But, I am stalling. Maybe the happiness will cure it.
Maybe swim season – her first ever competitive sport she ADORES – will straighten it out.
Maybe.. just maybe… we won’t have to add one more confused doctor to the list of clueless professionals who don’t know how to help us anyway.
Maybe… her blood results from Dr. Elice will come in this week, and maybe there will be an answer or two.
It sounds so dramatic. I guess maybe its not such a big deal. But today it feels like one more thing on a list Cowden’s Syndrome has robbed her of.
Meghan was never going to be a performance dancer. She wasn’t going to do ballet for hours. But, for the last 3 years, she has taken one dance class a week.
First recital – 2011
Hip Hop.
Not because she knows the music, but rather because they dance in sneakers – and that is better for her joints.
I can’t say enough good things about the studio. The owner is a compassionate, kind, professional, lovely woman who strives to make every child feel like a million bucks. She revels in their accomplishments. She celebrates every ability level. She truly loves children, and dance.
The Proud Dancer with her fans
This place is the perfect fit for Meghan.
Her joints acted up in the fall. She missed a month before she could get it back together. No worries – no sweat.
A few weeks ago she twisted an ankle at dance. Xrays, a sprain. A week or two off.
2012 On the Red Carpet
Then there was the shoulder thing. Not dance related – but it still cost her some time.
And then tonight. I picked her up from class and her flushed face told the story before her teacher had to.
“She hurt her hand, but we don’t know how.”
I do.
EFF YOU COWDENS!
So, I took her home. There was a shower, and some ice. Nothing more than a light sprain I am sure. But her back hurt too. So we put her to bed very gently. And we spoke about maybe finding ways to increase swimming instead of maintaining dance.
The recital though is such a rush. She loves it. She loves being on stage – the energy. The celebration.
On stage – May 2012
Physical Therapy tomorrow morning. We will let Dr. Jill input her thoughts – although I already know them.
She is pretty good when she dances. She is a quick study. She has made so much progress. And she has some moves. (Those are NOT from me!)
She will ultimately get to decide. Although its probably for the best to back out now – before she really gets hurt. The final decision will be hers. So I say.
In reality the final decision has been made by Cowden’s Syndrome, and its ruthless attack on her joints and muscles, and connective tissue.
She is resting peacefully – for now. But I am cranky.
Things tend to work out as they should, but I am still waiting for this little girl…(young woman…AAAKK!) to catch a break…
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.
And I’m impressed I got her there.
beatingcowdens 