November 2013 – beatingcowdens

50,000!

Published on November 22, 2013 by beatingcowdensLeave a comment

Unwinding from another wild week I checked in here to find that at some point very soon this “Beating Cowden’s” blog will clear 50,000 views. The number is almost incomprehensible to me. I am humbled by the support, and the ability to raise awareness of ours and other rare diseases.

This week Meghan endured ANOTHER MRI. This time her head was firmly fixed in a cage as she had her brain scanned on every level. while receiving 8ccs of the gadolinium contrast dye that I suspect has been helping cause the headaches to being with. Irony. Exasperation.

The bright spot came in the words, “There is no tumor. There is no AVM.”

Sweet relief and agonizing frustration simultaneously.

Grateful beyond measure that there is no need for brain surgery. Relieved to my core that there is no evidence of any suspicious mass or vascular malformation.

Distressed, worried, disturbed, and sad about the diagnosis of chronic migraines. Please spare me “It could be worse.” I know. So does she. But I have to tell you about 3 hours after starting a migraine I am done. She has been at it 2 months. She has not missed a day of school, managed an almost perfect report card, and made it to some swim practices. She just keeps plugging.

So, we doubled the medicine – striving for the day the pain scale hits 0 again, and hoping it’s soon.

Lots of kids without Cowden’s get migraines – but somehow as the detective in me uncovers her triggers I suspect they will be linked.

And one day soon she will feel strong enough to get back into the pool for swim practice. Her health has allowed her only about one practice every 2 weeks. Her goals are much higher. Patience.

Working on ways to safely rid her body of gadolinium and other toxins not proven to cause, but clearly not helping the headache situation. We will figure it out. The stakes are too high to give up.

The rest of the stuff. The worries that are just real life worries, and not Cowden’s worries at all. The ones I can’t blog about. They are the ones keeping my heart extra heavy.

Thanks for tagging along on our journey!

Give Thanks…

Published on November 19, 2013November 20, 2013 by beatingcowdens2 Comments

I like fall. I prefer the optimism and new beginnings that come with spring, but I do love fall. I like the sweatshirt jacket weather, and the pumpkins and apples, and the beautiful fall leaves. I like basking in the mystery and wonder of the beautiful colors as they fall through the branches to the ground, and blow through the air with the brisk wind. But, this year I almost missed it.

I sat on the steps Saturday as my husband frantically gathered leaves into bags so they could stop blowing all over our neighbors lawns. And, in our haste I almost didn’t notice, or even take a minute to appreciate the beauty of what was before us.

A testimony on life, and a sad one.

We, like so many others, are busy. We are painfully busy at points. There is school, and work, and homework. There are Physical Therapy appointments, and swim practices. There are lessons to plan. There is a house to maintain, laundry to do, dogs to clean, floors to wash, and marathon grocery shopping every few weeks to keep my allergy girl well-fed. There is mail to sort – regular junk to be shredded, bills to pay now and bills to pay later. And that’s just here.

There are family members grossly under-visited. There are people we love so much that live right close to us – who we never see. There are friends short distances away we haven’t seen in years.

And yet, usually we find a few minutes in the fall. A few minutes to toss some leaves around. A few minutes to giggle. So many thoughts flooded my mind as the last of the leaves hit the bag for this week. One more clean up and the trees will be bare for winter. And I looked up at that bright red tree above my doorway and took a minute to give thanks.

I needed to give thanks for the tree, above the new roof on the place we call our home. I needed to give thanks for my husband and the family and friends that helped it happen 13 years ago.

The fall leaves, like so many things that happen each year, are a beautiful reminder to give thanks – for beauty, for love, for hugs, for smiles…

Meghan got new glasses this week. She got her first pair in 2009, and her eyes have worsened steadily. As we picked them up, and she said, “WOW,” and “THANKS!” all at the same time – I was reminded of the little girl, who is now a young lady. I am struck by the genuine gratitude as her sight is restored. I am thankful for my vision, and the doctors who are able to help her have clear vision.

“Oh how the years go by…”

I have a friend or two who have given thanks every day this month, and I enjoy reading their thoughts and thankfulness each day.

For me I am thankful – but it’s more like a flow chart. One thing, one blessing, one bizarre set of circumstances leads to me being reminded of how many reasons I have to be thankful.

Tomorrow we go for that brain MRI. The one that will confirm that the suffering endured these last few months by my 10 year old who has seen so much, is “probably” migraines. Brain MRIs really suck. The only part to really be thankful for there is the part when they tell you they didn’t find anything.

These have been some difficult weeks. My heart is heavy, and worn. But I am thankful:

For my daughter, and her unfailing determined spirit.
For my husband, and his loving sense of humor, and his unending patience.
For my parents and grandparents, and the blessings of having them.
For my siblings, as we grow and experience life at different stages and paces.
For nephews of all ages and stages.
For my cousins and aunts and uncles all over the country – and for Facebook for helping me connect with so many.
For the friends who refuse to give up on me, even as I am not available – again. I take solace in knowing they will be there when I am.
For those I love who are sick in mind, body and spirit. Their strength inspires me.
For the doctors who care. Whether they get it right or wrong, my heart is open wide for the ones who care.
For Meghan’s teachers – past and present – school and church, and their ability to instill a love of learning.
For Internet friends – who support when other’s can’t.
For dogs, and their unending loyalty.
For two secure jobs in our home.
For giggling, and tickling and fake hand-made flowers.
For those of you who take the time to follow our journey.

I turned 40 last week and it wasn’t so bad. I am thinner and stronger, and more determined than I was in high school – albeit a lot more gray.

I guess that makes me thankful for hair dye.
And for boobs that don’t sag, and no need for a mammogram.
For size “small” – cause who knew people wear that?
For the Isagenix that taught me to eat nutrient rich food.
For the prayers of friends, and the strength and stamina to endure.

MRI tomorrow. Results to follow. Then, we will give thanks even for the torture of migraines, with the knowledge it beats the alternatives.

MOSTLY I AM THANKFUL FOR HOPE, as the Global Genes Project says – “It’s in our genes!”

Give Thanks!

My Guardian Angel wears a Gold Ribbon

Published on November 11, 2013November 11, 2013 by beatingcowdens4 Comments

My Guardian Angel is 6 in my heart. That’s the age she was the day in 1991 when she got her angel wings.

My Guardian Angel was tenacious. She was fun and feisty. She was strong, and wise beyond her years.

My Guardian Angel battled leukemia for four and a half years. She endured chemotherapy, spinal taps, bone marrow transplants, remission and relapse.

She loved watching “Lady and the Tramp” and she loved her baby sister. She loved stuffed animals, and my grandparents dog “Bo.”

My Guardian Angel was the first kid I ever got to really babysit for. We had some fun times.

My Guardian Angel is my cousin Meghan. She changed my life when she was born in 1985- and I lost a piece of me when she passed away in 1991.

My cousin Meghan went dancing with the angels the year I started college. It was snowing. It was my 18th birthday.

My love for Meghan and the deep loss permeated the next few years of my life. The pain never ever goes away- it changes you. But I decided that I would strive to be more like her. I would take her example of grace under pressure and model my life off of it.

"Angel Meghan" - 1987 — “Angel Meghan” – 1987

We were already forever intertwined and then she met Jesus on my birthday. The bond- the link- is unbreakable.

My Meghan was born a decade ago. She makes her namesake proud. She shares her strength, grace and wit. She endures medical challenges beyond measure. My Meghan has an angel on her shoulder too.

And over the last few years as the reality of Cowden’s Syndrome and it’s lifelong implications set in- Angel Meghan keeps me grounded. Whenever I want to be frustrated about the cancer risks we face- I am reminded that we are afforded a warning system. I am reminded that these sometimes grueling routine screenings have already proven life-saving for us. I can only imagine how desperately my aunt and uncle would have loved the warning system- and the prevention opportunities we have.

I wonder sometimes- what my cousin would have grown to be. I wonder what the 28 year old would be doing with her life. And then I stop.

Mine is not to figure out the plan. Mine is not to understand the hows and whys. My role is to take the lessons learned, and the people who have taught them and make them part of who I am today. Mine is to keep the memory of a special young girl alive- in my heart, in my life, in my actions, and in my daughter.

So as I brace to celebrate my 40th, on a day when emotions promise to run high, I remember.

Sweet Guardian Angel Meghan, flying with your gold ribbon friends.
Forever young.
Forever loved.
Forever remembered.
May 16, 1985- November 12, 1991

Freedom IS NOT Free!

Published on November 10, 2013 by beatingcowdens3 Comments

When I taught Social Studies I most enjoyed the curriculum that allowed me to teach about the United States. It made me sad on Friday to overhear conversations about this upcoming weekend, and never once feel there was an understanding of Veteran’s Day. When I was a fifth grade teacher the children wrote about their “Rights and Responsibilities” as American citizens. That was a long time ago.

I was raised to answer the question, “Where are you from?” with, “The United States.” Growing up, that aggravated more than one person who was looking to learn where my ancestors had traveled from to arrive in America.

Precise language. They learned to ask the question they wanted to know the answer to, or not to ask.

I am the proud daughter of a Vietnam Veteran, and the grateful granddaughter to 3 WWII veterans. Although 2 of my grandfathers are no longer here with us in body – their spirits remain strong in my soul.

All of the men I mentioned served in war. All of them returned home to us. All of them shaped my life and helped me become the woman I am today.

Pop T. came home after serving in Iwo Jima, to raise a family of 9 – 8 boys and a girl. Visiting their house as a child was certainly wildly fun. My father is the oldest child, and my sister and I were the first grandchildren. We enjoyed time with Pop who had left behind a promising athletic future before his service in the war. He had time to impart much of his wisdom before he passed in 1993. My only sadness is for my many cousins that never got to know him the way I did. There is no denying his legacy.

GGPa came into our lives later when Mom married Ken. I was 15 years old, and my sister was 18. Ken wrapped his arms and his heart around both of us, and truly made my world a better place. At the time his parents, who came to be known to us as GGPa and GGMa had no grandchildren of their own. I was so flattered that they accepted us and enveloped us with such love. GGPa is gone over a year now, but in our years together I got to know the definition of “gentleman” through him. He was a positive influence, a pleasure to be around and a treat to talk to. He is missed and loved and appreciated.

Pop G. is one of the most amazing men I have ever had the pleasure of knowing. The fact that I will turn 40 next week, and I can recount my day by saying “I spent some time with my grandparents,” in and of itself is amazing. Not to mention that they are 93 and 94 – living in the second floor of their own home. I grew up during my most formative years, in the first floor of that home. I had the daily love and support of my grandparents. When I speak of Pop, and the influence he has had, even I am at a loss for words. His faith dictates how he lives. He loves God, his family, and all others before himself. I am so blessed to listen to his stories, and to revel in years of beautiful memories, while still making more!

And then there is my father. The free spirit whose love of adventure has guided him down many paths in his life. We have conversations that always leave me deep in thought. He has experiences that are broad, from far and wide. Most recently in the last few years that road led him right back closer to home, and I have been so grateful to have him just around the corner. My girl has gotten to know him, and always remarks about his smile. He tells her he smiles because of her. His genuine heart, and the depth of his love have made him the person he is today – one I am truly glad to have in my life.

There are children who seek desperately one male influence in their lives. The amount of time I have been afforded with each of these men is a gift. I will not squander the knowledge, and life lessons I desperately try to soak up like a sponge.

Each of them saw things I do not dare imagine. Each of them lived experiences I will never understand. Each of them sacrificed, time, love, health, and so much more.

I can only imagine that at some point they have all wondered why they got to come home when some of their comrades did not. And, while I can not ever know the plan – I can, on my knees thank God for returning each of them safely so they could live their lives.

Not everyone is as fortunate.

I have received a gift too great to squander, too valuable to toss aside, and too personal not to wear it close to my heart each day. For it is because of them that I am. It is because of them that I have learned poise, strength, and grace under pressure. It is because of them that I know to love so deeply. It is because of them I have been blessed with my daughter, unique, RARE, and determined to change the world.

Stand for the Pledge of Allegiance and the “Star Spangled Banner.” Think about the words. Feel them in your heart. Educate yourself. Learn about the sacrifices made to make this country.

You may want to complain that life isn’t perfect. You may want to complain about the country. And while I can agree that many things are not as they should be, remember what my grandfather said to me, “The Constitution is an extremely well-written document, the flaws are in its execution.”

And regardless of your political stance on any war ever – support the soldiers. Those men and women are there out of a selfless love of country. They are making sacrifices far beyond what we see and what we know.

Precise language.

I am PROUD to be an AMERICAN, and even prouder to be related to so many who loved this country enough to fight to defend the principles it was founded upon.

Veteran’s Day. November 11. FREEDOM ISN’T FREE.

“Probably”

Published on November 5, 2013 by beatingcowdens2 Comments

I like the word “probably” a lot more when it is favorable. Although sometimes I feel like life is engulfed in ‘probably,’ ‘maybe,’ ‘most likely,’ or ‘I’m not sure.’

Today “probably” means it’s most likely migraines causing her agony.

And with some explanation that migraines can level even the strongest adults, she started to feel a bit better.

There was a thorough exam, and a kind, intelligent neurologist. He knew what Cowden’s Syndrome was, complimented my list of doctors, and even called the oncologist to talk about treatment options.

So my girl, whose pain had actually radiated down and into her shoulders was looking finally at an answer.

I understand her cautious suspicion, as things have often not gone according to plan.

However, this diagnosis actually makes sense. And having lived through my share of migraines, it even explains the level of pain.

So he is 90% sure.

Those are good odds.

Except there needs to be an MRI just to be 100% sure.

And MRI, with gadolinium. Again.

Three steps forward. Two steps back.

But once the MRI is done, and clean, and we can all breathe again, then its onward.

The medicine started tonight. It will be every night. Relief is long overdue.

Fingers crossed. Prayers gladly accepted.

Locks of Love

Published on November 4, 2013November 4, 2013 by beatingcowdens8 Comments

Some time earlier in the year Meghan told me she wanted to donate her hair.

Inspired by a few stories of children with cancer, and prior to her own diagnosis (a very mild and stable case) of alopecia areata, she knew something good could come of something so basic so she set about the business of growing her hair.

She knew she needed 10 inches to cut for “Locks of Love,” and she was determined.

I was inspired.

So while she grew hers, I quietly grew mine too. It wasn’t the first time she led me by her example.

And when her resolve strengthened I shared my intention with her, and we were set to donate our hair together in September.

Except mine wasn’t long enough – not yet. And maybe that was a blessing because she got to blaze the trail. She sat bravely as her pony tail was chopped off. She smiled as her curly hair bounced up as if it had been waiting for the weight to be released.

And somehow I think she grew up even more that day. And with that selfless act, she became even more beautiful, more mature.

So, when it was finally my turn, she held my hand. She held my camera. She reassured me that I had done something good.

Sometimes she is so much the grown up that it is frightening.

Sometimes, albeit rarely, she is a ten year old kid. I am working to treasure both.

It’s OK if my hero is 5’2”, wears a size 8.5 shoe, some of my clothes, and was born after the turn of the century right?

She makes me want to be a better person.

Do penguins have knees?

Published on November 4, 2013November 4, 2013 by beatingcowdensLeave a comment

I can credit someone else’s Facebook post for even allowing that random wondering to slip into my head. But it has served as a distraction… so I am grateful.

It’s hard for me when I need to choose my words carefully. I usually just lay it all on the line and that’s how I keep it together. Except when your heart is heavy because of matters that just need to be private, that makes it extra hard. So that is why I haven’t been posting much. But without my writing the voices just stay in my head, and then…

But my heart is full for so many reasons, and some I can share with you. Blessed by my consenting 10 year old, as long as I don’t disclose anything embarrassing – to educate the world about “beatingcowdens.”

The headaches have been around on and off for a while. So long that I don’t actually remember. It sounds awful that I as a mom could say that, but it’s true.

I remember the pediatrician saying to me that I should take her to a neurologist because he kept hearing me mention headaches. I remember being overwhelmed by too many doctors. I remember last year blaming the prescription change on her glasses. I remember blaming chelation. I remember blaming allergies…

But the headache hasn’t quit. It’s been weeks now.

It varies with intensity. We are trying to get her to understand and use a pain scale to get some consistency.

But pain is such a personal thing. It’s just not easy. We can never exactly know the pain of another because every body perceives pain differently.

What I do know is that there has been a headache to some extent for over a month and that’s too long.

What pushed me into action was last Monday night. Homework was finished, and I was ready to bring her to swim practice- the place she loves more than anything. And she told me no.

She said she didn’t feel right. She said she wasn’t strong enough. So I let it go and kept her home. But THAT didn’t feel right to me.

Then there was the day that she was waiting in my classroom for the school day to start and she said, “There it is mom! Feel that pulsing?” As she put my hand on the side of her head I got queasy. We all have pulsing in our heads to some degree, but once you have dealt with a vascular malformation – or a few – the pulsing takes you to a new mind numbing level of anxiety.

And when the teacher gave her a shell and she held it to both ears, and said , “I can’t hear it the same in my left ear…” And then there is the ringing that comes and goes…

So tomorrow we head back to Manhattan to visit a neurologist. A little later than the pediatrician would have liked, but we are going. And with every deep fiber of my soul I hope with all my heart that he tells me my girl has the worst fall allergies in the world. And in a few weeks it will all be just perfect.

That’s the story that will get me through the night.