This is Our Reality

Published on April 2, 2016April 2, 2016 by beatingcowdens2 Comments

Alone, in a crowded room.

As I look around frantically trying to figure out exactly where, or how I fit, with anyone, my mind wanders. I can’t seem to make conversation, or to pass the time socially as easily as others. I watch. I retreat as soon as I can. I can’t quiet my head. And, knowing the whole line of thinking that occupies my mind some days makes everyone uncomfortable, I step back into myself to cycle through reality.

“Those hormones? Are they causing her headaches? Or is it something more sinister? How would I even know? Do we need to use another MRI? What if it is the hormones? What choice do we have? The doctor said she has to stay on them to stop the development of those “irregular cells” in the uterus they found in December. They’ve already begun to schedule another D & C for July. “You have to make sure…” The uterus is a prime site for malignancy in Cowden’s Syndrome. I got to keep mine until Meghan was 8. Will she get to keep hers? Will she have the chance to make the choice whether she wants to bear her own children? And, even if we save the uterus and she wants to, will it be viable after 15, 18, 20 years of hormone treatment? And at what cost to the rest of her body? What about the breast cancer threat that looms large to a young woman whose Cowden’s Syndrome alone puts her at an 85% lifetime risk. That coupled with a mother and grandmother who have had breast cancer… sigh…why is it even a topic of conversation when she’s 12? It seems so unjust. This issue shouldn’t have to be addressed now, well not ever really, but especially not now. And when she has the headaches I have to give her something. What about the headache medicine? What about that esophagus we are trying to heal?

Is it those medicines that caused the horrendous reflux after Easter, or was it her MINOR indulgence into a few SAFE sweets? Why should a slight indulgence cause such discomfort and vomiting? Why does she have to be so careful all the time about everything? No wonder she is so serious. And what if it is the headache medicine? What am I supposed to do to help her? Tell her she has to deal with it? I can’t imagine “toughing out” a blinding headache.

The knee. Oh the knee. She tries not to complain about it, but I see when she struggles. The AVM is finally stable, but the leg takes a lot of work to develop. She works hard on it too. But, the stamina isn’t there. Hours in a pool yes, on land, no way. Standing too long, walking the mall, or for a short walk, things we take for granted cause such pain. And pain causes fatigue. And on the occasions she relents and allows the wheelchair into use, she struggles. Not for the need to use it temporarily, but for fear of insulting those who have to use it all the time. She is proud. She is frequently humbled. She is conflicted.

And who wouldn’t be? 16 surgeries before the 13th birthday. The need to be tough all the time, while you feel weak. The desire to be stronger. Having to fight, hard, for physical accomplishments. Having to accept the ones that will never be. Never giving up. Pushing to be better. To make the world better.

She’s not perfect. Never has been. And oh, there are DAYS… But she is good, in her heart. She means well. She has no spite or malice, and I can pray it remains that way. I can pray that the children who don’t get it, one day come to understand her, just a little better. That one day they can accept her, for the good in her.

I scheduled 3 doctors appointments for the next three weeks. Dermatology, orthopedics, and endocrinology. The first is a screening. Cowden’s Syndrome, melanoma risks. Her father’s increased risk of melanoma on another unrelated genetic disorder. Her grandmother’s melanoma this summer. Every 6 months they told me. Bring her every six months. The others will work on long-term plans. Spring break. Every holiday, every vacation. Every day off. Doctors. Not the mall, or a friend’s house. Doctors. For what? And I’ve toned down the list quite a bit.

There are two bills of my desk. One for her and one for me. Both a battle. Always a battle. If it’s not the reality, or the appointments, it’s the bills. And we are so fortunate to have insurance. But, the hours. Oh my goodness, the hours…”

I try to shake it off. To stay focused on the good. On the positive. On the blessings, and they do abound. But, so often it’s just me, and my head. Working to get out of my own way.

I miss my Pop. I miss my Grandma even though she’s still here. I miss their goodness. I miss my Dad. I miss his listening ears.

I quiet the voices a little and try to follow the conversation around me. I smile politely and nod. I stay quiet. “It’s good.” “We’re good.” That’s about all they can handle anyway. Even the ones who genuinely do care. Why drag someone to a place where there is absolutely nothing they can do or say?

This is our reality. This is Cowden’s Syndrome. This is every day. As long as we have breath, and strength, and stamina to shake off the pain, place the smile firmly where it goes and press on, we will.

Because the real reality is that every person in the room may have a similar string of thoughts in their head. The reality remains that EVERYONE HAS SOMETHING…

I booked dinners for our Disney trip today. I like to plan ahead. Plus, Disney gives me a little extra strength, so that we can remain always,

#BEATINGCOWDENS!

“There’s nothing wrong with THAT girl…”

Published on August 9, 2015 by beatingcowdens1 Comment

To the Young Couple on the Bus this Morning,

You should know that I heard you. I heard what you said as you glared at my daughter. I saw you shake your heads in disgust and say, “There’s nothing wrong with that girl, I saw her walking at the hotel last night.” You seemed proud of yourselves, like you had “found us out.” Maybe that’s why you weren’t so quiet. Maybe you wanted the others to hear, and to look at us in disgust as well, while the bus took 4 extra minutes to load my daughter on the wheelchair ramp.

I thought about what you said on and off through the day, and that alone made me mad. The fact that I even gave you a second thought was so much more than you deserved.

Then we caught the same bus home, and I really struggled to hold my tongue as you went at it again.

But, on the way home, I was less interested in you, and much more concerned for my daughter. She wasn’t well, again. And in some ways we are used to it, but it’s never any easier to see. As magical as it is here, it doesn’t change our reality.

Our reality, the reality of daily struggle with an invisible illness, is with us all the time. And even though my daughter CAN walk, she is not physically capable of the walking required to navigate the parks. Maybe its the 6 knee surgeries. Maybe its the after effects of the thyroidectomy. Maybe its the low immune subclasses, or the severe GI issues. She tires easily. And today, because it’s day three, she is already worn out. And even with the help of a wheelchair, she needed us to cancel our dinner reservation and get her back to the hotel to rest.

So, yes. At the advice of her doctors, and the agreement of her parents, because she NEEDS a break from her life, and EVERY protection to help her feel well, she uses a wheelchair through most of the day. And every day before we leave the hotel room we say a prayer for all those who HAVE to be in a wheelchair all the time. We take a moment to pray for their strength and health.

You aren’t the only ones. There are plenty of others who look at my beautiful girl, and think that this is some type of ploy. Which would make us pretty sick people. Because if you really want to feel queasy, push your child around in a wheelchair. Go ahead. Try it for a week. We’d rather she walk. She’d rather walk. So sometimes we let her try. With advil, and about 3/4 mile round trip. There is ice for the knee, and a shoulder to rub. The body behaves like one 40 years older. But, she pushes. To keep her independence. To feel normal.

The next time you wait the extra 4 minutes for the bus to load, don’t judge. Don’t figure you know the who, or what or why, about the person in that wheelchair. Don’t pity them. Don’t feel badly for them. Just be respectful, and assume they fight a battle you know nothing about.

If you want to know more about them, ask. And if you don’t – just walk right on by. And cherish your mobility.

You just never know.

Sincerely,

The Mom of that Child You Know Nothing About

“It is only with the heart that one can see rightly…”

Published on August 13, 2014 by beatingcowdens4 Comments

There is something about having a kid who struggles, whether physically, mentally, emotionally, or in any other capacity, that forces you to open your heart and mind to things you may never have “seen” otherwise.

We are blessed.

We have a beautiful, witty, articulate, charismatic and spunky young lady.

She knows pain, and she knows it well. And some days that pain is like plowing through a stone wall, while others its like walking across a pebbly yard barefoot. But, there is sparsely a day with no pain.

She knows competitiveness. Although she would like to be the fastest runner, she is starting to work towards a more reasonable goal in a no impact zone – the pool.

She knows intelligence that book smart children know, and she knows the perspective that few adults can master. She can look at other people and want to talk to them. She can wonder about them. She can empathize with them.

She knows what its like to be sick. And in surgery. With IVs, and needles, and scars, and recoveries. She knows what it’s like to never be “well” only watched.

She is learning, step by step, that “well” is more of a state of mind, than a state of being, when each week is peppered with some type of appointment.

Yet, she knows that even at the depths of her own Cowden’s Syndrome battles, there are others. With and without our syndrome – who fight a battle unbeknownst to us.

Meghan doesn’t use a wheelchair at home. For this I am grateful. Although as I teach my daughter about homelessness, and how we can never be too sure from where they came, or whether it could through a series of unfortunate events, become us. We practice a deep understanding of reality in Disney World.

Meghan’s pain, so much of it, stems from repetitive motion. Too much walking, any running, too many stairs, too much kicking or pulling in the pool… all of it has repercussions. So Disney, by it’s very nature, and its wide landscapes requires much walking. And, as we try every year, even with a little here and there – the pain is deep and inevitable.

So for that week every summer she gains an even greater perspective. She lives in a wheelchair. With all the inconveniences that come along with it, in an effort to save the needs from irreparable pain, and the trip from being a wipeout…she rides.

And on the first night after the vomiting I watched from a distance, as Felix helped her onto the handicapped ramp on the bus. And there was a knot in my stomach as I watched my girl get strapped into the bus in the wheelchair. This beast, this Cowden’s Syndrome we fight. Well we fight to win. But who can know?

I stop myself from wondering too far ahead and I reflect. On the old me. The me who used to look at people in wheelchairs riding buses as an inconvenience. A delay in my precious time. The me who used to judge and try to guess why they would need a wheelchair. The same me who used to judge a lot of things.

We will unpack.

The wheelchair will be stored. Hopefully for a very long time. But, it will be there, in the basement. In case. In case we need it for anything. Because the pain, well it’s always there.

Fortunately, she is in a position where her stubbornness still has the power.

And I will think, as I drive her back to swim practice in a few weeks, about the other mothers. About the ones who wish their child’s wheelchair use was temporary.

And I will think about the phone call I got this week. The one about the AVM growing in the knee again. Timed on the same day she was vomiting in the hotel room. And I will be grateful that we don’t need surgery right now. And I will be grateful that it is not in her head, or any other life threatening spot.

I am humbled.

By her grit. By her stamina. By her determination.

I am grateful.

For the opportunities afforded to my girl.

We will find the balance. We will pay it forward.

I don’t even really remember the judgmental me.

I am too busy working on

BEATINGCOWDENS!

Reality – tough to swallow

Published on January 8, 2014 by beatingcowdens5 Comments

I am a huge fan of online shopping, and normally I anticipate my orders my counting the days till their arrival.

Except this one – not so much.

It was a purchase made out of necessity, not desire. It sat in my online shopping cart for 2 months before I hit send last night. It will arrive some day next week. It leaves me with mixed emotions.

Gratitude, that it is not a full time arrangement.

Anger that it has to be part of our lives at all.

Frustration for my energetic girl who would rather run, than walk. And would love to do both without pain and bone-crushing fatigue.

Anxiety, about all the ignorant folks who will pass judgment that I hope she doesn’t hear.

Guilt, that my child can walk and so many others can not.

My beautiful girl, as you know by now, has suffered with health issues her whole life. They have ranged in severity, but they have been consistently problematic. The diagnosis of Cowden’s Syndrome in the fall of 2011 answered some of the questions, but by no means all of them.

Research is scarce. The cancer risks associated with our PTEN mutation are real, and documented. But, the rest of the symptoms are shared though anecdotal conversation in small internet groups, worlds apart.

I can not know if, or to what extent, Cowden’s Syndrome explains the other maladies that have plagued her virtually since birth.

There are food sensitivities, on the narrowest list we have ever had she is gluten, dairy, soy, dye, and preservative free.

There was the gall bladder removal at age 3.5, and the pancreatic insufficiency that requires digestive enzymes with every food.

And, despite the most serious precautions, as well as daily probiotics and nutritional supplements, there are still daily stomach aches.

There is the AVM in the knee – the one that needed 4 procedures to finally cut off the abnormal blood flow – for now.

There was the vascular malformation in her hand that the kind surgeon was able to correct last summer – after MUCH angst.

The lipoma on her back was almost certainly Cowden’s related.

And the biopsies. The three thyroid biopsies – the most recent of which still wreaks havoc on my nerves- those are Cowden’s too.

But the chronic pain? The joint issues that make 200 mg of celebrex a necessity – not a luxury…. who knows?

And the physical therapy that is a necessary part of her existence – just to function.

What about the migraines – now well controlled, but not gone?

And I sometimes wonder why she is a bit absent minded? Shame on me. It’s undoubtedly necessary for her to survive. Imagine if she thought of all that every day, and all her daily activities? She would lose that magical smile. And I don’t want that.

The frustration is as palpable as the largest nodule in her neck. She WANTS to do EVERYTHING the other kids can do. She wants to run, and play, and participate with them. She is TIRED of being different. She is TIRED.

Swimming is a good idea, but it takes so much out of her. Last night’s practice got in the way of tonight’s. School was tough. Clammy, hot flashes, uncomfortable. Maybe she’s coming down with something, but more than likely she’s just wiped out.

Three practices a week was the plan. Two became the goal. This week it was one. But somehow its worth it, for her to be able to say she is on a team. To be able to say she swims competitively. To feel somewhat “normal.”

When she was younger I could hide things from her. Now she’s just too smart.

When she was younger I could convince her all the kids get tired. I could deflect her attempts to play too hard.

When she was younger she might not have noticed that an hour in the snow on Friday knocked her out for the weekend.

When she was younger…

But she’s older now. Wise beyond her years. And I have been where she is, and I hated it. She has it worse, and I know she hates it too.

She can swim – pretty fast. Just not too often.

She can run- a few laps back and forth in the gym – as long as she has her Celebrex and PT.

She can play outside for a bit – but not too long.

She can walk too. Until the pain in her legs, or her hip, or her knee wipes her out. Or until she has to surrender to fatigue that will keep her in bed for 13 or 14 hours.

I am grateful. You bet. And sad too. And I think it’s OK to be both.

She spent a few years in a MacLaren push chair when the walking was extra long. Now SHE is extra long – adult sized at 10. Time for adult sized reality.

SO if you happen to run into us when she needs that wheelchair, just smile and say hello.

We will remember to be grateful we don’t need the wheelchair full-time.

When you are tempted to pass judgement on my healthy looking daughter – be grateful you don’t need it at all.

You STILL don’t LOOK sick (reblog from 5/26/12)

Published on August 15, 2012August 17, 2012 by beatingcowdens1 Comment

We are headed home tomorrow from a wonderful family vacation. I will have lots of lovely things to tell you about the fun we had and the great people we encountered. Unfortunately there are still some ignorant people… even here, who do not realize you can look perfectly healthy and still be “sick.” There were a few times… especially today when the monorail operator gave us an attitude when we asked for a ramp into the handicap accessible car (even though her chair is clearly marked as a wheelchair.) People can be so frustratingly ignorant. She notices now, and it bothers her, but she is awesome, and she tells me she hopes they never know what it’s like because no one should feel this way. So here it is one more time…

beatingcowdens

“You don’t look sick!”

If I had a dollar for every time someone directed that comment at my daughter or I, I would be retired – a wealthy woman.

We don’t “look” sick. As a matter of fact we look alike. A lot alike. It’s probably due to the fact that I, having the ‘honor’ of being the first in my family known to have the PTEN mutation that causes Cowden’s Syndrome. To look at us, you would see a vibrant mother and daughter duo – 8 and 38.

When I push her through Disney World in her modified wheel chair each summer, I get the stares that say “spoiled.” When I pushed her through the Susan G. Komen Breast Cancer walk last fall so we could support my mom, a survivor, someone actually said “Why don’t you get the ten year old out of the stroller?” Actually she is 8, and she would…

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