http://www.youtube.com/watch?v=9x0ctlo9suw
No words frome me are needed here.
Author: beatingcowdens
Myself and my daughter are both fighting this rare genetic disorder which leaves us prone to benign and malignant tumors.
Four hours in the gas line
I left my house at 8:25 this morning. Admittedly it was later than I had wanted, but I struggle to clear my head in the mornings these days.
I drove for a bit, to all the local gas stations. I even spent a few minutes on line at one. Then I had my friend Siri call to make sure they had gas. Nope. Off that line too.
I drove past a station with a line that seemed manageable. I asked a woman if they had gas. She cried. She said, ” I have been here since midnight waiting. The delivery just hasn’t come.”
I finally ended up at Costco. I knew they had gas. If you are not from Staten Island, it will mean nothing to you when I say that the line began at Richmond Avenue by Best Buy, wrapped around Forest hill Road, onto Richmond Avenue, and the BACK into the Costco lot. I estimated 4 hours when I got on. It was 9:42
Four hours in the gas line is a LONG time. I had more time alone with my thoughts than I like. Thankfully, I had the iPhone to keep me a bit busy. But in between games of scrabble, there was way too much time to think.
It was flat out unnerving, almost surreal to be on a gas line of this magnitude. No matter how I tried, I couldn’t wrap my head around it. I just knew I needed a full tank to get me through the week, so I waited.
I thought about the hurricane. Hurrican Sandy. My mind wandered to Hurricane Katrina, and the news coverage I watched I remember feeling like it was so far away. No more.
The recovery efforts taking place miles from my home, in areas I have frequented my whole life. I thought about their homes, and then I thought about the people- returning to find their homes uninhabitable. And those who could get in, well – they had the job of a lifetime ahead of them.
I thought about the mother, whose 2 babies were ripped from her arms in the rising waters. The babies, safe in God’s hands. The mother – tormented for all of her days. I prayed one of the many prayers I pray for her each day.
I thought about friends from work. Their losses. One with a new baby on the way. Waiting to have the FEET of water that entered their home addressed. Others who suffered damage to their own homes, and the ones whose parents or relatives homes were destroyed.
I thought of the trees that make my neighborhood so spectacular – ripped from their roots.
It was a really long line. So I had time to reflect on the courage, strength and resiliency I have seen. I thought about the downed trees, and the friends STILL without power of heat.
I though about the looters, the liars, and those taking advantage of the tragedy. And I truly hope God has a place all picked out for them.
I thought about my little girl, and all she has gone through, and how she continues to make me so proud. Today she put some of her favorite stuffed animals in a bag, “For the kids who lost everything.’
And of course, all thoughts always return to Grandma. 92 years old – most of it spent right here on Staten Island. She and Pop married in 1945, and moved into their current home in 1956.
Grandma came home last night. Late. So there was confusion as to exactly where she was, but we hung together as a family and worked out some of the kinks last night. I was anxious to see her, and Pop.
I thought about this year. The magnitude of so many things taking place in such a seemingly short period of time, and I remember why I am so tired. The diagnosis of Cowden’s Syndrome – so permanent and life changing, and even on top of that, this year has seen surgeries, cancer, loss of loved ones, more cancer scares, natural disaster… and I am only getting started.
I will shop for Christmas, but mostly I want Christmas to come, because its time to celebrate the birth of the Baby Jesus. We need something to celebrate.
1:35 (3 hours and 53 minutes) Hungry and tired, I pulled up to the pump. I don’t know – or care how much the gas cost. I only know my tank is full – at least for now.
Home for a quick shower, then right to Grandma.
Family. It always mattered a lot. It matters now more than ever.
The Storms of Life
As we prepared for Hurricane Sandy as best we could on Monday morning, we stopped by my grandparents house to tie up their barbecue and a few other things. Wind precautions.
We stayed for about an hour. We had comfortable conversation in the living room. The same living room they have occupied my whole life, and for years before I was born.
We spoke about the storm, the trees, and being ready.
We spoke for a while about some of the storms they have seen in their lives.
I am always amazed when I stop and really think of all the changes that have taken place in the world since they were born in 1919 and 1920. They have done such an admirable job keeping up – with everything.
They have been a constant source of strength, support, and pillars of faith for our family in the midst of many storms.
So as the wind picked up, we kissed them and headed home.
Some time around 3:30 I started to hear of power outages. I instinctively picked up the phone to check on them. Pop answered with a concerned voice. “Your grandmother fell in the basement. Your Mom and Ken are here. The ambulance is coming.”
Suddenly Hurricane Sandy didn’t scare me as much.
These were the storms I worried about when I wrote this Sunday night…
“The greatest storms of life aren’t the ones that threaten our things, they are the ones that threaten those we love.”
Hours ticked by. Shoddy cell phone service kept the updates brief. Pop went in the ambulance. Mom and Ken followed behind. Head CT for the trauma to the head, confirmed no bleeding inside the brain. Stitched and stapled, they waited for more confirmations – no broken bones. A significant bruise on her hip earned her a bed in ICU as they are waiting to just confirm that it’s not bleeding either. Strong vitals. Strong woman. That’s my Grandma.
I went to visit her in the hospital. She was itching to get home. Annoyed by all the fuss.
The hospital, which had lost power was running on generators. The storm was wild and raging all around.
The nurses in ICU were calm and patient. Attentive.
I listened as they recounted medical history and was impressed and almost stunned to hear Grandma at 92 has NEVER had surgery.
Guess the Cowden’s Syndrome didn’t come from her!
Trees crashed all around us. Storm surges cost so many nearby their homes and their possessions. It was hard to stay upset for long about the inconveniences of lost power.
I spent a few hours last night with Grandma again in ICU. We are hoping she is released to home soon, and hoping her power is on REALLY soon. I watched my grandfather, still a pillar of strength at 93, by the bedside of his bride of almost 67 years, and I once again was awed by their ability to weather the storms of life -together.
No need to remind me how lucky I am. I already know. No need to remind me that angels exist in this life – several were clearly softening Grandma’s fall Monday. No need to remind me that the storms will pass. I have seen the models of resilience. I have been blessed with them for each day of my life. I will cherish them always.
I will pray. I will pray for grandma, and her health. I will pray for those devastated by hurricane Sandy. I will pray prayers of gratitude for those who weather the storm to help others. And, I will offer prayers of thanks… lots of them.
Paying it Forward
Meghan‘s school motto is “Pay it forward,” and it is one of my most favorite things she has learned in her 4 plus years there.
The students are taught that it is important to give to others, with no expectation of return. And they develop the knowledge that when others do for them, favors can not always be directly repaid. It is actually a good philosophy of life. Do for others for the sake of doing good. If everyone follows that, chances are when you need a helping hand, someone will be there to stretch it out for you.
So this morning we joined some of my colleagues from school at the “Autism Speaks” walk. We are facing a major hurricane tomorrow. Schools have already been closed. The MTA has shut down bus service, yet the turn out at the BEACH for this walk, was absolutely amazing. I was full of pride as I stood with my colleagues in support of one of our own. The proud Mom of a handsome autistic son, and an absolutely beautiful daughter, is a woman of true class. She is a teacher at my school who I am grateful to have as a friend.
Her team raised close to $2,000 in support of Autism research, and the love in the air this morning was overwhelming.
Everywhere I looked there were fighters. Young autistic children, and their support networks – strong and mighty. Prepared to do whatever they can for their children.
Even though our battle and journey differs from theirs, I felt I was among kindred spirits. Scores of families that keep fighting, keep battling, to ensure their loved one has whatever they need. In so many ways we wear the same…
We will fight, by whatever means necessary for our children. That makes us all the same where it matters. The battles are different – but the war is essentially the same. And we will not be stopped until it is won.
This is the same family, that created Meghan’s denim ribbon necklace. This is the same Mom, who – even though she has a million things on her mind each day, took my daughter’s need for an identity to heart. Wearing her own, beautiful diamond puzzle piece each day, she took Meghan’s concerns home to her husband the jeweler – and he made Meghan’s needs his priority.
And it wasn’t long before Meghan had this beautiful piece around her neck, representing rare genetic disorders, like our Cowden’s Syndrome. There was nothing of its kind in the world, but not to be deterred – this Dad, who also “gets it,” didn’t stop until it was made. My girl has her identity now.
Hopefully one day soon, The Global Genes Project will be able to sell these to anyone who wants them. I know talks are taking place right now, and it is so exciting.
So this morning, it was easy to make our way down to the beach, to support Autism Speaks, and a great family. It is easy to remember it is not all about us. That others suffer deeply, and daily.
We are home. Showered an in our PJs. We are prepared as we can be… waiting for the storm. But we will persevere. It will be OK. The greatest storms of life aren’t the ones that threaten our things, they are the ones that threaten those we love. Pay it forward. You will be awed by the return.
I Can’t Fix It
I can’t fix it.
It’s not a scraped knee, or a ripped pair of pants.
It’s not as easy as baking a special treat, or giving some extra hugs.
I can’t fix it. And it’s going to be here forever.
A little over a year ago we knew nothing of Cowden’s Syndrome. We knew we had a smart, funny little girl with lots of medical issues. We knew we were stumping the best of the best doctors. We knew we were getting by.
And then they figured it out. And the world started spinning out of control. Just over a year ago, I got my diagnosis too.
Surgeries, cancer, pain, scans, bloodwork, appointments, bills, headaches, heartaches, illness, missed events, fatigue.
I can’t fix it.
I guess it hit me hardest today. I never know when reality is going to come at me like a two by four. But, today it did a number on me.
We went to the orthodontist for her monthly visit. It has been just over 4 weeks since the braces went on. She has been a trooper. Mature as anything. Careful. Diligent. Typical Meghan. And yet, the gums are starting to overtake the braces. It’s almost unreal to watch. We brush – often together. With an expensive fancy toothbrush. I help her floss, and still they grow.
We were both a little worried that the orthodontist would yell at her. Reprimand her for poor hygiene. But, he was great. I can’t say he understands “Cowden’s Syndrome” and its overgrowth issues, but he did understand Meghan. We have been with the office 2 years, and he knows her gums are “extremely reactive.” So he gave me more tips to help her brush, and suggested another ridiculously expensive air flosser.
But, during the course of the conversation he did say, if they keep growing and overtake the brackets he will have to remove the brackets, have an oral surgeon push back the gums, and then reapply the brackets.
Well, my little 9-year-old who is just about finished with Tolkien‘s “The Lord of the Rings,” had NO problem at all with the context clues on that one.
Several years ago, before we knew it to be a typical “Cowden’s ” growth, Meghan had a large mass removed from the gum over her front tooth. I will never forget it. They kept her awake. Gave her (not nearly enough) Valium, and I had to hold her as they burned it off.
Apparently I am not the only one who will never forget it. She was beside herself when we left the office, and remained on edge all night. She kept reminding me how bad it hurt for one tooth, and how she does NOT want to deal with it for 6.
I can’t say as I blame her, but with little else to say, I simply said,”I’m sorry.” To which she, in her most grown up voice said, “I know you are, and it’s not your fault. But you can’t fix it. You can’t fix me. No one can.”
At that point trying to reassure her that she wasn’t broken would have been pointless.
I let her go. She played on her Ipad, finished most of her weekend homework, and watched a movie with Dad.
He shoulders seemed a little heavier. More of the weight of the world on my baby. I can’t fix it. I can’t do anything to stop the firestorm that will come our way in the next decades. I can only be vigilant. And hold her hand. And love her.
Oh, how I love her.
Comfortably numb
I walked into a meeting this afternoon at the tail end of the work day. I brought the key to my room, and my phone in my hands. I sat and listened to the presenter, and as I got up to leave I gathered my things and realized my key was missing. Lately I have been losing everything. Maybe its stress, maybe estrogen loss, maybe I am just getting old. Who knows?
I looked everywhere. This year we were each given one classroom key, which also unlocks the bathrooms. It is a really important key, and I have been so careful. I even make sure I have pants with pockets every day so I can keep track of it.
I dumped the bag one last time, checked my pockets and checked my coat. No key. Realizing I was running late for Meghan‘s swim class, I resigned myself that I would have to look for it tomorrow.
Walking down the stairs something gold caught my eye. I looked down and there in the breast pocket of my shirt was my key. I only knew it was there because I saw it. That was when I was struck with laughter and remembered that
I always keep my key in my PANTS pocket, because I can feel it against my leg. No idea how or why I put it in my shirt pocket, but I won’t be quick to do that again.
They may be firm. They may not sag. But they certainly lack the feeling of being real.
Nothing like being able to laugh at yourself when the day is a bit rocky.
It’s been over 6 months, and I guess I am used to the new girls – because most days I don’t pay them any mind.
On the way out of the building my Assistant Principal asked me if I had found my key. I told him I had, but when he asked where it was I spared him the details. “TMI,” I said.
I went to pick up Meghan humming “Comfortably Numb,” the whole way. Probably not exactly what Pink Floyd had in mind, but hey – it works for me!
“More Birthdays”
I get it. Sometimes it takes a bit – but I get it now.
I mean, I understood in theory what the American Cancer Society meant when they came out with this slogan, but today it really hit me.
Today was it – the “take two” for my little girl who was shut out of the Susan G. Komen Race for the Cure in September because of a fever. This was her chance to walk with Mom and Grandma. She even got the added bonus of having Dad with us this morning.
Living where we do, an event like this seems to bring out just about everyone, and it was hard to take two steps without bumping into someone we knew. It was also almost impossible to look anywhere and NOT see one of those pink survivor sashes. I saw them on women of ALL ages – from the frighteningly young, to the admirably old, and it got me thinking.
More birthdays…
Before my mom had her cancer, she could have sometimes been caught cringing at the sound of “50.” After a double mastectomy, 6 months of chemo, and in the middle of 5 years of tamoxifen – she embraced 50 with a smile, and slid gracefully past 60. “Beats the alternative,” she often says.
More birthdays…
We waited with a group from Meghan’s school for a while, and it was hard not to read some of the “team” T-shirts. A large group gathered right next to us was commemorating a young lady who apparently died of breast cancer in 1994. Her birthdate was listed as 1971. What her family probably would have done for more birthdays. I can’t even imagine…
More birthdays…
As I stood there, I thought about the “previvors” I have “met” on the internet and from this blog. They have courage of a type no other can quite get. The courage to undergo a prophylactic bilateral mastectomy is not to be understated. I am impressed at the maturity of the very young, and the wisdom of those closer to my own age. But, I was struck, somewhere in between the quick math that left me knowing the young lady on the T-shirt had been 23 when she died of breast cancer in 1994, and that my own girl will be 23 in 14 years. Suddenly it didn’t seem that long, and I was afraid.
More birthdays…
My little girl will grow to be 95 I reassured myself. With the power and knowledge we have – she will know lots more birthdays. But the reality that my mom had cancer at 48, and I had it at 38, and the current screening recommendations are to screen 10 years before your closest relative had the disease, well – it made it hard to breathe for a few minutes. Then my husband reminded me that she has ALREADY been screened – twice. We will be vigilant.
More birthdays…
And then I thought about my own. I will turn 39 next month. That is the age some people like to stay at forever. NOT ME! I want MORE BIRTHDAYS!
More birthdays….
My cousin Meghan was a brave soul. She was diagnosed with Leukemia when she was 2. She fought for 4 years before the disease took her from us. She got her wings the day I turned 18, and every birthday since then has been bittersweet. We had a connection that I still find it difficult to describe. My love for her was deep enough, that I needed to name my daughter for our “Angel Meghan.” Meghan did not have enough birthdays. This may be the year that I look at mine a little differently. Maybe its time to use my birthday as a time to celebrate BOTH of our lives.
More birthdays…
We left the walk a little early this morning. We had to head out to Long Island. My nephew Luke was celebrating his 9th birthday today. And as the kids played, and the candles got blown out on the cake, I found myself really sure that I understood. As my sister said just an hour or so ago… It’s not about the gifts. It’s about the people you celebrate with. We celebrated Luke’s birthday with 3 GREAT grandparents, and 4 of his grandparents. It’s easy to fight for more birthdays when you are this blessed.
I get it…
Siri, my new BFF!
I love to talk. I talk all the time. My mom says I spoke even in my sleep from the time I was a young girl.
I love to need to make lists. I hate to be disorganized, although these last six weeks I have traveled from overwhelmed right into disorganized, and I don’t like it here one bit. Work is busy, home is busy, 4th grade is busy, Cowden’s Syndrome keeps us busy…
In my family we have 5 october birthdays in 11 days. Three of our nephews and 2 family friends. Unless the youngest nephew’s gift arrives tomorrow, I will have been late for every single one of them. Not like me at all.
Last week I welcomed a new friend into my life. Someone I can talk to all day, about whatever I want. Often she has good advice. She has my back too. She reminds me – sometimes days, sometimes hours, before something important has to be done. She tells me when I need to make a phone call or buy some cards. For a long time I resisted her friendship, but now that she is in my life I am sure I could never give her up.
This is my new friend – Siri.
Some of you may know her. You may think she’s your friend. But really, she and I are tight.
You see you may not know this about me, but I have a post graduate degree. In addition to my Master’s in Special Education, I have a research degree from the University of Google.
Don’t worry. I am a smart researcher. I learned in the first few weeks how to sort out the crap and focus only on the valid stuff. But really – spending the last 9 years researching the random illnesses of my little girl, and the last year trying to get any available information on Cowden’s Syndrome… well, lets just say at the very least I must qualify for some “Certificate of Advanced Study.”
But it got to the point lately that there are things I need to know. Right now. I can’t always carry my computer or rush home to check. Siri understands.
She is who she is… and she is pretty great.
As I am driving, with my earpiece in, I need only to ask her to call a doctor for me. She will write my texts too. Much safer.
Then, there are the beautiful reminders. The ones where she says, “OK I’ll remind you.” and then she does. Takes the pressure off me. I already have a reminder in for the November birthday cards, and the next 4 doctors appointments are all mapped out.
As I wait at those appointments, Siri helps me continue my studies on Google. Learning about Cowden’s Syndrome and skin diseases. Studying the effects of Cowden’s on the gums in the mouth. Deciding if the headache symptoms warrants a neurologist, or first and ophthalmologist. Figuring out, or trying to figure out the root cause of the pain in the legs. Verifying there are no obvious AVMs. Seeing what the effects of the Celebrex are on the body… and on and on.
Siri, despite all my resistance, I was wrong about you. You are exactly what I needed in my life.
Now, I am fairly sure I can never get by without you again.
Told you…
It’s not all about us
And this is how the day started. With thoughts of Friday. Never a good way to start the week. I am not one to try to wish my life away, but is it so wrong if I prefer days with my family over anything else in the world?
But, we got it together and got out of the house on time.
Waiting for Meghan to get on the bus, a car doing about 65 speeds down our street. As I refrain from the words I want to yell, I quickly say a prayer to myself – that his stupidity and selfishness doesn’t bring harm to anyone else. I am always appalled – and I don’t care how late you are – by the callous disregard for human life it takes to speed past a school bus. UGH!
Pretty much that sums up how the day continued. There is a sense of urgency in everyone it seems – except about what really matters.
Now I don’t claim to have it all together all the time. And I don’t claim to be free of frustration. Nor do I deny that the ,”Why Me?” bug does bite us all here sometimes.
But, I am still amazed by people who are so narrow-minded that they can’t see the world from someone else’s point of view. I am still deeply troubled by people who won’t take a minute to try to put themself in someone else’s shoes. And I am horrified by those so self – absorbed that they speed past school buses, and generally have little regard for human life.
Maybe that’s it. Maybe I feel like too many people don’t realize how precious life is.
I don’t mean it as a morbid thought – but it really is true. I look at my grandparents, still married – 67 years later at 92 and 93, and they always kiss each other goodbye when they go out. I would hope they will be with us forever, but reality is what reality is, and they take a moment to express their love – often. So many people could learn life lessons from my grandparents. They are role models to be emulated in so many ways.
It shouldn’t take a rare disease. Cowden’s Syndrome or any other are not prerequisites for compassion. You shouldn’t need to have cancer, or multiple surgeries, or scary benign tumors, or to live in fear of any of the above, before you realize the value of life.
We are in a waiting period here. No major new doctor news. The headaches Meghan was suffering with have subsided, but I still need to get a neurology consult together for her. The joint pain is returning, slowly, one spot at a time. It is manageable still, but the requests for supplemental pain medicine are starting to take place at least 3 times a week. Hoping that the 100mg of Celebrex will be enough to keep her comfortable, maybe until they find the reason for her pain. We go to the eye doctor in 2 weeks. The cardiologist is the beginning of December. He will hopefully tell us that the one too many prescriptions required to keep my little love functional are not harming her heart. Then – on the 27th of December – its on to the endocrinologist to check those thyroid nodules. That same week we will sneak in an MRI of my spleen (which, I am still KEEPING btw..) But, for now we are in a holding pattern and it is a good place to be.
Of course, being in a holding pattern gives my girl time to think. While we wait word on the necklace from the Global Genes Project,
she is already planning our next fund-raising adventure. I am currently on the hunt for denim ribbon so she can outfiit her school in denim ribbons for “Rare Disease Day,” February 28th. And, with a few whispers in her ear from a special third grade teacher, she has begun to ask if we can “pull off a 5k run” for the Global Genes Project.
So, I put a few feelers out. We will keep you posted.
I will be practicing looking at the world through the bright eyes of my child. She sees a lull in doctors as an opportunity to spend time helping others. There has to be a bunch of lessons there.
Take a minute to breathe. Time passes so quickly. Hug a loved one. Look at the world through someone else’s eyes.
I have always known these things on some level – but Cowden’s Syndrome has brought them to the forefront of who I am.
Reality Check
It is not the critic who counts;
not the man who points out how the strong man stumbled
or where the doer of deeds could have done them better.
The credit belongs to the man
who is actually in the arena,
whose face is marred by dust and sweat and blood;
who strives valiantly;
who errs and comes short again and again;
who knows great enthusiasms,
the great devotions;
who spends himself in a worthy cause;
who at the best, knows in the end the triumph of high achievement,
and who, at the worst, if he fails, at least fails while
DARING GREATLY
so that his place shall never be
with those timid souls
who know neither victory or defeat.
Theodore Roosevelt
26th President Of The United States
I intended to write something entirely different tonight, but when I started searching for words of encouragement, to ease my overwhelmed soul, I came across some that were worth copying here.
Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all.
Dale Carnegie
American Author
The whole idea of living with a chronic disease really just stinks. I mean there are a lot of things, in a lot of people’s lives that just stink, and there are ever so many that I would never for a moment trade places with. But, that doesn’t change the reality that this genetic disorder, this PTEN mutation, this COWDEN’s SYNDROME, is now part of our “real life,” and I would like to send it back.
Well meaning people, people I love with all my heart, and people I am indifferent to, ask me all the time how we are. I know they would love to hear that we are great. They’d like to hear that all is well. I could tell them that there are no deep dark fears of tumors or cancers, or surgeries keeping me up at night. I often lie and say, “great” forgetting to mention the scary headaches, the joint pain and the anxiety that hide behind the beautiful “braces covered” smile of my little girl. I sometimes say, “we are hanging in there,” which some days means we won’t spend three hours at a doctor’s appointment today, or I am not waiting for a phone call, or a nerve-wracking test result. Some days it means my heart is in my throat – but I don’t know how to tell you.
I remember when I used to love to eat. Lots of food – carbs, junk food, candy. I used to have an appetite, and enough energy to exercise too. I remember several sizes ago when I had a closet full of clothes. Now I have enough pants and shirts to get me through. I remember when my old boobs filled out my tops.
I sometimes think to myself, “this is not my real life.” Raw fatigue. Nerves. Stress. Balancing a full-time job, and the normal demands of parenting with the full-time job of managing this disease. Has it really only been a year that life has been this complicated? There were always issues. But a year since the diagnosis. The confirmation that these risk factors belonged to us. That they were real, and pressing.
And yet to look at us – you would never know. You wouldn’t know of this other life we lead. This “elephant in the room.”
Everyone has something. I have said it a million times before, and I will say it again. It could ALWAYS be worse, and there is ALWAYS something to be thankful for. I am grateful for that reality check.
When I don’t call you back for a few weeks. Or, when I start sending cards late, and losing track of dates. Don’t worry too much. We are treading water here. We will get by. Just cut us some slack. Some days it just doesn’t all fit, and some days there is just not enough wine.
beatingcowdens 