PTEN – Page 20 – beatingcowdens

Prophylactic Bilateral Mastectomy – Not just for the movie stars

Published on May 14, 2013May 14, 2013 by beatingcowdens8 Comments

I have been busy this week – working a on a few new projects. Trying to find some distracting hobbies. I need a few things to every once in the while take the focus off the imminent cancer risks plaguing Meghan and I every second of every day.

So, I started talking a lot about Isagenix, the product that did so much to give my husband back his health, and to help him lose over 30 pounds in the process.

This week I have signed up four friends to try to get healthy with Isagenix, and I feel good about advocating a high quality product.

http://meghanleigh8903.isagenix.com/us/en/landing_cfl.html#

This week involved hosting an anniversary party for two overly deserving parents. It also involved some run of the mill nonsense – dealing with ridiculous medical bills and the like, from people who will never “get” what it means to have to spend every day of your life out in front of a chronic, potentially life threatening rare disease, PTEN Hamartoma Tumor Syndrome – or Cowden’s Syndrome, as we usually refer to it.

I do my best every day, to raise awareness of what it is like to live with a rare disease, a genetic mutation that predisposes my daughter and I to so many cancers. I do my best, wearing proudly our denim ribbon, and sharing ribbons with friends and family, to educate the community on our, and other Rare Diseases.

Now, I know its slow going, but I am confident that more people in our community have heard about Cowden’s Syndrome than just a year ago. Of that I am sure. And we will continue our grassroots effort – one person at a time. Until hopefully, one day everyone will know of the “Global Genes Project,” and the 7.000+ Rare Diseases besides ours that are out there.

Today I sat down at a scoring site for the State Math Exam, and two girls I never met before feverishly gushed over the bravery of Angelina Jolie. Having heard nothing of the story, I asked what all the fuss was about.

“She had a preventative double mastectomy because she has a gene that makes it more than 80% likely she will get breast cancer. She is so brave!”

I smiled in spite of myself. I smiled in spite of the irony that had me wearing the T shirt “Yes, these are fake – the real ones tried to kill me!”

I smiled because I thought it was great that Angelina was well and had gone public.

“You know she decreased her breast cancer risk to under 5% now? She is so brave! I can’t imagine anyone doing that!”

I still kept quiet. I quickly checked my Emails to reveal that the blogs I follow regularly were all over the Aneglina story and had eloquently covered it. I listened some more.

Finally, almost on cue, they got bored with their story and asked me about my necklace – the denim ribbon.

I told them I my daughter and I had a rare genetic disease. That the denim ribbon was the symbol for rare and genetic disorders. They asked what the name of it was. So as I identified “Cowden’s Syndrome,” the expected reply was given. “I haven’t heard of that.”

“Well,” in my most succinct conversational tone, “PTEN is a gene that stops tumor growth. Ours is broken so we are more likely to get cancerous and non cancerous tumors all over our bodies. Especially in the breast, thyroid, and uterus.”

“YOU MEAN YOU HAVE THE SAME GENE BROKEN AS ANGELINA JOLIE???”

(Having not fully read any article I quick double checked my suspicions and confirmed,) “No, she has a mutation on the BRCA1 gene. My daughter and I have the same 85% risk of breast cancer, as well as countless other elevated cancer risks.”

“Well if you ever have to get a mastectomy at least you’ll know Angelina did it.”

You know I never much followed the stars. And I am so grateful for Angelina Jolie for being brave and going public. But there is so much more people need to learn. Nothing comes in neat little packages. Nothing.

I stretched out my shirt so they could read. “Yes – they’re fake , the real ones tried to kill me!”

“I had my double mastectomy. Last year. They found cancer. And I am ok. Genetic mutations aren’t just for movie stars. Bravery isn’t just for those who have wealth and power. There are more of us than you think.”

I was grateful when the tests arrived at the table. It changed the conversation. People don’t want to talk about cancer. Especially not young women with genetically caused cancer. It makes them uncomfortable.

I am glad Angelina Jolie went public. I just wish the public would open their eyes to the realities that are undoubtedly right next to them every single day. It doesn’t take a star. Just a conversation.

Let’s talk. Let’s listen. Let’s learn. We can save lives.

“Count Your Many Blessings…”

Published on May 12, 2013 by beatingcowdensLeave a comment

“Count your many blessings, count them one by one. Count your many blessings see what God has done…”

The song has been stuck in my head all afternoon. I remember as a youth singing the song in church. I must have sung it plenty of times, because the lyrics are stuck in my subconscious. And, as things int he subconscious tend to do – they often pop out at just the right time.

A busy weekend full of blessings.

Saturday we celebrated the anniversary of my Mom and StepDad. 25 years is quite a milestone, and we were so thrilled to celebrate with family and a few dear friends.

What a blessing that among the guests we had Grandma and Pop, and Grandma Hansen. Although we missed Grandpa Hansen we were so thrilled to count our blessings together.

Mother’s Day morning I woke alongside my awesome husband. I was greeted by my beautiful daughter and lots of hugs and kisses. Some hand made cards, and a few nice gifts and we were off to church.

We traveled after church. to visit with Felix’s Mom and Dad. We endured the (It could have been worse) Belt Parkway and spent some time with his parents, sister and nephew. Felix’s Grandma passed away just a few short months ago, so this day was especially difficult for his Mom who was very close to her Mom.

On the return trip we make a quick visit to my mom and got to see the grandparents again. How many 39 year olds can kiss a few Grandmothers on Mother’s Day?

How lucky am I to hug my Mother – a feisty lovable survivor of cancer and life? How blessed am I to have her in my life -by my side?

As we headed home, absolutely exhausted. That song started in my head.

“Count your many blessings…”

I thought of the friends I have who are desperate to be mothers. The friends who had to struggle to have the children they have. The friends who have miscarried, and friends whose young children live in Heaven. I thought about friends who miss their Moms, whose hearts ache every day at the loss – whether it was last week or a decade or more ago. I thought about my friends who never got the years with their grandparents that I have had.

Shame on me for feeling tired. How lucky am I to need a list to shop for Mother’s Day Cards? How fortunate am I to have so much visiting to do that I can sparsely fit it all in?

One might think Mother’s Day is for relaxing – or spending quiet time alone. But, I am aware that those years will come all too soon. For now – let me run, and visit, and hug and chat. Let me relish the moments in a life that is fleeting.

I kissed my little girl tonight. I held her almost 5 foot frame and cuddled her as best I could.

She won’t be in school tomorrow. A rampant virus, and her rotten immune system are not a good match. She won’t plant with her science class the way she likes to. She won’t play in the yard with her friends.

Tomorrow will be yet another day in the complicated life of a little girl with a multifaceted Rare Disease. A day of differences and disappointments. A day she will handle with the same graceful smile she uses for every other aspect of her life.

My daughter is the one who reminds me to count my blessings.

And, oh do I have many!

Puzzle Piece

Published on May 9, 2013May 10, 2013 by beatingcowdens3 Comments

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

PTEN World https://www.facebook.com/ptenworld?fref=ts

The Global Genes Project https://www.facebook.com/globalgenesproject?fref=ts

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.

Thanks for sticking around.

Collateral Damage

Published on May 4, 2013May 4, 2013 by beatingcowdens1 Comment

In regard to surgery and absences – this year has been much better for both of us… Maybe some things are looking up. (Published June 8,2012)

beatingcowdens

Collateral damageoccurs when something incidental to the intended target is damaged during an attack. (Wikipedia)

I don’t think it’s far-fetched toequate Cowden’s Syndrome to a war.

Our bodies are under attack. This PTEN (tumor suppressor gene) is broken, and we are being bombarded with cellular overgrowth in the form of all sorts of tumors – benign and malignant.

We spend our days, (and some of our nights) strategizing on how to prevent, fight, or get rid of these tumors.

It can be an all-consuming job.

When we have to have the tumors removed there is the recovery time, which can seem endless. The battle scars, which forever change the landscape of our bodies also take some getting used to.

There is the financial drain, from lost wages, and the endless battles of medical bills are a war onto themselves.

There is…

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The Day Our World Changed…

Published on April 1, 2013April 2, 2013 by beatingcowdens8 Comments

Our world changed one July day…

It was the summer of 2005 – I was the mother of an almost 2 year old. That is when the world started over, and everything began again.

At the time, she received Early Intervention Services for OT and Speech.

Our house was a busy place.

The therapists were lovely, and my babysitter was a delight. The therapists often came in and out during my work day.

They left me notes, and I caught up with the babysitter – sure that I was doing everything I could.

Then the speech therapist started coming at night. She wanted to see me more. She wanted to talk to me.

“I think you should consider food allergies,” was how she gently began the conversation.

“Meghan doesn’t have any allergies,” I replied. I had dutifully, as the pediatrician instructed, introduced foods one at a time every few days looking for any hives. That is what I knew to be allergies. So now I was sure she had none- although her face was bright red and her belly distended several times its natural size.

“Look into a gluten free diet,” I was gently prodded.

And I resisted. Every step of the way.

Finally I read the book “Children with Starving Brains” by Jacquelyn McCandless. Maybe… just maybe…

“Go and see this DAN! (Defeat Autism Now) doctor, just give him a try…” prodded the speech therapist.

“You think MY kid is on the autistic spectrum?? No way. She looks right at me when she… doesn’t say a word. And she …” Well I finished the thought without speaking. It went something like – ‘she spins around this house like a top – a complete whirlwind. She doesn’t play, stack, or interact with any toy. She cries all the time. She leans over the side of the couch because her belly hurts. She doesn’t speak at all. She doesn’t behave like any of my friends kids.”

My heart sank. I was an elementary school teacher with a Master’s Degree in Special Education. Could I have been blind to my own child’s issues?

Well, she is way too related to be autistic I told myself. But her sensory system is a mess. She can’t tolerate noises, or sand, or textures. She should be speaking. And why is her belly so big?

So I read, and I read. And I finished “Children with Starving Brains,” and I moved on to more. “Biological treatments for Autism and PDD,” “Healing the New Childhood Epidemics,” “Evidence of Harm…”

And slowly I was rocked to my core. There was a sense of gratitude for the speech therapist that had pushed just enough, and a sense of urgency for my child who I knew wasn’t autistic – yet… although there were some significant tendencies there.

So we took away milk. Honestly it happened by accident.

February 4, 2005 I was showering after my first full night’s sleep since she was born. I am not exaggerating one bit. And, as I tried to determine the cause it occurred to me we had run out of milk the day before. THAT WAS IT!

After enduring the on the floor tantrums, the crying, and the freak outs… we got rid of every dairy containing product in my house.

And, as her belly came down in size and softened up, there was this added bonus. She started to speak. I mean really speak. She went from non verbal to almost appropriate over the next 18 months. The constant antibiotics for ear infections that wouldn’t clear became a thing of the past.

But still… we were on the right road, but we weren’t there yet.

I introduced soy to supplement the milk loss, and dare I say things got worse. There was this bright red rash all over her face… and everywhere else. We quickly dropped the soy.

On to gluten. That was so tough. What a major life change. Ingredients tossed regularly. Gross food. Costs unimaginable. But we were getting somewhere. We were making major progress.

Then there was that day in early July 2005. I don’t know what set off the melt down to end all melt downs, but it was unsettling to my core. I could not soothe my child. She would not let me touch her. The screaming. The sobbing.

It was time.

I picked up the phone to look for one of those DAN! practitioners, and found that Dr. Elice in Long Island had availability that week.

Fortunately I had taped the melt down. Perhaps the best thing I ever did, because my husband was immediately on board. And its a good thing, because this venture wasn’t cheap. $1000 consult. $500 follow up, and $250 a visit after that.

I was ready. I am not sure if he met me with fear or admiration that first visit, but I presented him with a chronology of every medical document I had, tabbed, and noted. If I was going to spend that kind of money… I was going to be sure it was worth it.

Dr. Elice had been a pediatrician for 28 years before turning to DAN! He knew that something wasn’t right and something was happening to the children he cared for. So he set out on a journey to figure it out.

http://www.aimintegrativemedicine.com/team.html

Meghan was one of his very first patients, and over the last 7 years he has proved not to disappoint.

He has spent hours upon hours, listening to us, looking at lab work, getting to know Meghan, patiently explaining biochemistry, and trouble shooting her areas of greatest need first.

At the beginning we probably saw him once a month. That was back when there was a need for B-12 injections, and all sorts of lessons about metabolic pathways.

Now, he has his own office. A practice to stand behind his philosophy.

http://www.aimintegrativemedicine.com/index.html

Slowly it had become more of a 2 to 3 times a year visit. Our pancreatic enzymes that have saved so much GI distress, come from him. He used his brain. He treated what he saw. He thought outside the box. No need for a pancreatic biopsy – “Let’s just try.”

He is a far cut above those who believe to “First do no Harm.” He believes to first HELP them ALL.

We walked into his office today to familiar hugs. He has a new office since we first met. A new staff. He is helping COUNTLESS children.

Today he spoke to Meghan directly for at least the first 15 minutes we were there. Then he spoke to Felix and I. We spoke about her medications, and our concerns – although the list is so much shorter than it was 7 years ago.

He ordered lots of lab tests – to try to get to the bottom of a few things.

13 vials of blood today. We will try for the rest on Saturday. And a 24 hour urine test on the horizon.

He understands autism, and while I know many friends whose children are deeply affected, he knew that Meghan was not to be one of those kids. He knew that while she is metabolically similar, there were some significant differences. She never received a diagnosis anywhere on the spectrum of autism.

He also understands PTEN. He knows of PTEN Hamartoma Tumor Syndrome. He knows of its uncanny connection to many autistic children. He knows of its cancer risks, and its vascular issues.

And, knowing this, he will not accept Meghan’s fate as predetermined. He knows that I will continue to have her checked and scanned, but he intends to help us circumvent the inflammatory responses that will trigger a malignancy or an autoimmune response.

He will get all the lab tests. He will send them to me. We will strategize. There will be new supplements. Ones to help teach her body that it does not have to sit back and accept its fate as predetermined.

For us – he is the HOPE that we need. The balance in this rocky sea of medical storms.

He is unique in that he loves my daughter- as a grandpa more than a doctor. He is unique in the depth of his caring. He is unmatched in the extent of his love.

Almost seven years later, I shudder at where we could have been.

Today we are thankful for one of the good guys.

Thanks, Dr. Elice for working for our kids…

Good Friday – for the “first” time at the age of 9

Published on March 29, 2013 by beatingcowdensLeave a comment

I grew up taking some things for granted. And, when you are 39 it is quite easy to forget there are some things even the brightest 9 year-olds don’t know.

It has been a long week. One of doctors, and appointments. Lots of homework. Running errands to try to catch up on our lives. Felix’s grandmother, who Meghan and I barely knew, passed away this week. Emotions. Pain. The hearts hurt. The hand hasn’t healed quite yet. Physical Therapy. Lots of processing for my deep thinker.

I know Meghan knew this was “Holy Week,” if f0r no other reason, than I had told her.

She participated in the Palm Sunday Service last Sunday and understood everything in great detail.

Wednesday our church set up “stations,” where you could travel to experience Jesus‘ last days. There was fragrance, 30 pieces of silver, bread, wine, a cross to nail your sins, a stone to imagine the weight of the one in front of Jesus’ tomb. There were 13 stations in all. Each one a meaningful experience – traveled through alone or in a pair.

At each station there was a Bible passage, and a scenario. There was a way to put yourself in the situation. Meghan and I traveled most of the stations together, talking and sharing as we went. Long productive conversation that night.

We did not make service last night, but tonight, we headed into the “Good Friday” service.

I had never experienced a Tenebrae service, or a service of shadows. There was a huge cross of candles in the front, extinguished one at a time as various readings were completed.

And, knowing her so well I watched Meghan through the service become increasingly uncomfortable.

When we left and asked her about it, she told us she never knew the story of Jesus’ death. She had heard it told, but never read from the Bible. She had no idea the extent of His suffering. She was amazed that He could still love us after all the awful things that went on.

Long, long discussions. Just starting to wrap up.

My first reaction was guilt. Had I failed as a Christian mom?

Then I realized, as always, things were happening as they were supposed to.

I was learning lesson upon lesson just hearing her speak.

We are so weighed down by the earthly problems, that we sometimes forget. We sometimes lose focus.

Cowden’s Syndrome, cancer, PTEN, AVMs, viruses, surgeries, whatever the suffering,… we are children of a loving, forgiving God.

Jesus died to save us from our sins. To lighten the load. To eliminate the judgment and condemnation that sometimes weighs on our hearts – so we can concentrate on the important stuff.

And on the third day He will rise again…

How blessed are we? Sometimes I need my 9 year old to remind me.

Transitions

Published on March 28, 2013 by beatingcowdens2 Comments

Transitions.

It seems they are happening all the time, probably for everyone, but this week we are really feeling them.

When the week started and I loosely reviewed our schedule for the week Meghan was flat out disgusted at the number of appointments we had. She is tired of doctors. I can’t blame her. So am I.

Watch this. Scan that. Come back and see me about that… UGH.

Transitions.

So when she asked me to stop making every vacation full of appointments, I tried to explain to her that with two people with “Cowden’s Syndrome,” and a whole pile of “every 6 month” appointments, it is almost impossible. And then when I looked at the tears in her eyes I promised to try. “I just want a little time to be bored!” So I got a jump on our summer appointments. So far I scheduled 12 from June 27 to July 16. I have used only 6 days to do it. There is one day with 4 appointments, two days with 2, and the other 4 each have their own days. Now, as long as no one looks for any follow ups… maybe we can plan to have a somewhat normal summer. At least I can dream

Transitions.

She is also tired of homework. Even from teachers with the best of all intentions. She is tired of the stress of the upcoming State exams, even as I work to downplay it. She was so excited this week when I told her she could read whatever she wanted – whenever she wanted – without needing to write a summary. You would have thought I gave her candy. She used to love everything about school. Now the best I get from her is that she likes her teachers. What are we doing to these kids?

Transitions.

Her thumb still hurts. Injured at dance on Monday. Its been 3 days. Seems like it is going to linger. It isn’t – or doesn’t seem to be broken, but she is done dancing. She told me yesterday. She just wants to get through the recital.

Transitions. Things are ever changing.

First it was soccer – too tough on her body. Now its dance. Sometimes she can hurt herself just walking up the steps. What next?

Transitions.

No more PT in school. She doesn’t need it. Or so they say right now. We will double check just to be sure. But there is lots of PT going on. Strengthening that body. Preparing her to swim like the fish she wants to be. More testing in school when we return. Just to make sure she is getting everything she needs. Nothing more. Nothing less.

Transitions.

Holy Week services at a new church. Sunday we become members. Warmly welcomed – attending as a family. Mixed emotions that always lead to joy and confidence at the power of the Holy Spirit in our lives.

Transitions.

Our lives are full of transitions. Like the lenses on Meghan’s glasses – changing with the environment and the circumstances. We are growing together. Learning our roles. Fighting not to allow Cowden’s Syndrome to define us, but rather to find where it fits into who we are as people. We are working on our health, and our own maintenance appointments. We are learning about the effects of the syndrome, and discovering how much is not yet known.

We are finding our new roles, as people charged to raise awareness, and to spread the word.

We are figuring out where we belong. In school. In sports. In extracurricular activities. In religion. On our lives.

Big changes all around. God’s plan unfolding. Eyes and ears and heart wide open.

Transitions…

Thinking outside the box

Published on March 22, 2013 by beatingcowdens4 Comments

And so began the week that was.

A “simple” annual review – not so much. But that’s OK. Mamma Bear remained calm. I am most strategic that way.

I am however exhausted, and facing another battle.

It was a bit of a struggle to keep the chin up this week, as I often felt like her:

But, I didn’t act like her. Not even once. (Well once I cried – but I got yanked past it.) And that’s about all of that story I can share here, for now.

But these last few ~~weeks~~ months, have left me with a lot of questions.

See, there is this constant battle to do what is right, or what I perceive to be right, as I advocate for Meghan, and for my family. But inevitably, because I am so introspective – I am left with a ton of questions at every fork in the road.

Last week when we took her to 4 doctors and an ER about her shoulder, I ended up being told I went to the wrong ER – that we didn’t belong there. But it is a cancer center, she is already a thyroid patient there, and my child grows things. While we are blessed that none have been cancer yet – I am not of the “wait and see mentality.” But, still I paused and wondered if I had done something wrong.

In the end, the rheumatologist gave her a muscle relaxant. We began rehabilitative PT and I am seeing progress. The shoulder and neck remain wickedly sensitive – but she has back almost full range of motion.

Still we watch the lump behind her shoulder blade, in hopes it continues to decrease in size and doesn’t turn out to be the “soft tissue tumor” we were advised to look out for.

Really – no one has even a bit of a clue. And it is often just downright exhausting.

Physical Therapy this week was refreshing. At least I deal with professionals who have made themselves aware of Meghan’s needs and focus with a goal of eliminating, or severely managing, her pain. Thank God we found them.

Because of them, Meghan will swim in her meet tomorrow. No freestyle – it hurts the neck. But that was OK with her.

Backstroke seems by far to be her favorite. I love watching her swim. She seems so at peace.

It gives me a time to break from all the questions. The wondering. The worry.

It is easy to doubt yourself sometimes when so many things are changing at once. Whether you are precipitating the change, or reacting to it out of necessity, when there is so much at once I think it is normal to wonder.

We are not super difficult to get along with. Yet we go through doctors like a toddler goes through shoes. We have very few close friends – confidants to be trusted. Those who will be honest and open minded. We spend a lot of time alone. We get along really well – thank goodness.

I think what we look for is doctors, friends, associates, people who can practice:

I just wish there were more. No one really fits in a box. And that’s not just us, and our “rare disease.” Everyone is unique, and special. Everyone needs to be looked at with a fresh pair of eyes. Everyone needs to be viewed through the perspective of the other person. Only when we start to look at things through someone else’s point of view do we solve anything.

It is the outside the box thinkers that solve IEP problems, medical problems, friendship concerns, desires to make the world better…

Daring to think outside the box is risky. It is hard. It is necessary.

Especially in this season of “test prep” where I have seen this scenario one too many times…

Mine, yours, all of them – they are individuals. They have specific needs. We should never be discouraged when advocating for them and their needs.

In many cases – we are their only voice. We MUST think outside the box for them.

“Raising Small Souls” – a must see video

Published on March 14, 2013 by beatingcowdensLeave a comment

Normally I try to keep my life as a teacher, and a Cowden’s mom separate, but as I prepare for Meghan’s IEP meeting on Monday, I am reminded of this video.

I first saw it many years ago – but from time to time I watch it again. My Meghan does well in school but has a host of other issues. And, daily I see, admire, and love children who struggle terribly in school.

I think its about time they all get what they need. If only I knew how to make it happen.

Life Lesson – Character

Published on March 9, 2013 by beatingcowdens2 Comments

Maybe the hardest part about being a kid with Cowden’s Syndrome, is trying to be a kid.

I wouldn’t know. My diagnosis came way after I was a “kid,” although I might say that it was never easy fitting in being the kid who was always at the doctor or in surgery – for something.

Meghan has kids who like her, but precious few that she calls friends. The girls she is close to are lovely through and through. I find them similar to Meghan in developmental exposure to the real world. They still know how to play dolls and be kids.

This week the swim meet was against the team of one of those friends. This is a young lady who has been to my home, and Meghan to hers. She chose to write a book about friendship and dedicate it to Meghan. They took countless swim classes together. So, the fact that they would be competing, in some of the same events today, caused anxiety for Meghan.

She worried about losing – and about winning. She wasn’t sure how to digest either one.

After the race where she took second and her friend took third, her dear sweet friend, half Meghan’s size, stayed behind to try to help Meghan out of the pool. I wanted to hug her for being so graceful and such a lady. That little girl, whom I always respected, gained my admiration forever right at that moment. It spoke volumes of her character.

So as we replayed the meet in the car on the way home, Meghan was pleased to have placed well. It was only her second competitive meet ever, and she was enjoying the feeling of competition. We didn’t dwell on it, and after a shower we were off to buy some shoes for Easter, and a sweater too.

Imagine then my surprise when I overheard her on the phone with another classmate bragging about her win over her dear friend.

When the conversation ended we spoke and there were tears. She was just so proud to finally be successful, she forgot herself. Now she was just beside herself. She was worried her friend would find out she had bragged, and was terrified at losing her friend over nonsense.

So, she did the bravest thing I could have imagined. She called her friend, and confessed. Knowing she might never get caught, she could not live with the fact that she had been disrespectful to someone she held so dear. So, in between sobs she told her friend the whole story. And she apologized.

I am sure she won’t do this again any time soon. She was devastated.

And her dear friend – I expected nothing less – greeted her with a pure and forgiving heart. Turns out she herself had once bragged, apologized, and been forgiven.