Recovery – Everything is Relative

Published on October 12, 2015October 12, 2015 by beatingcowdens1 Comment

recovery

(Merriam – Webster)

Medical Definition of RECOVERY

: the act of regaining or returning toward a normal or healthy state

Recovery. Is it a place? A state of being? A state of mind? Who knows? But, we spend a lot of time here. It’s really sort of a family affair, although without a doubt the one who takes the brunt of it is always Meghan. Four times in the last 10.5 months, and most recently three times in the last 6 months, there has been general anesthesia, and necessary recovery. That is a record for her that I pray she never surpasses.

In November and May it was the knee – one emergency, one planned. In between it was the hand. A pesky, tiny AVM, gotten before it got to be too big of a deal. She JUST was cleared to take a break from the recovery PT on Thursday. And on Friday it was the wisdom teeth.

We laughed a lot before the teeth came out. We called her an overachiever and kept the mood light reminding her that years from now she would be able to boast being the first, when her friends inevitably would need theirs done too. This surgery had a glimmer of “normal” attached to it – although distinctly unique in her age.

But, being unique isn’t always a place you want to be. Especially at 12. Sometimes you just want to blend in a little.

It’s less than ideal to have a weak knee with a persistent AVM. It’s no fun at all to grow AVMs – even tiny ones – in the palms of your hands. (One in EACH hand to be fair.) It doesn’t make for good conversation, when your experiences are operating rooms, and your excitement comes from which doctor hurts less when they put the needle in. Which 12-year-old would really know how to respond? It’s certainly not the place you want to be as the FIRST wisdom tooth survivor of all your friends, when none have seen their own swollen puffy cheeks, or have any idea the pain as the incisions begin to heal and the stitches work their way through.

And I knew the prcedure even surprised the surgeon. When I went to her as she woke up, the medication plan had changed. Initially she was to recover on Tylenol. I was handed a script for a narcotic pain reliever and instructed to be sure she used it. It’s never dull. Or easy.

It’s no solace to her that I understand THAT surgery. Because I had it AGES ago, and I don’t remember too much except pain. And, I won’t be in school with her tomorrow to give her Tylenol, or reassuring glances, or soft food.

Recovery, when she was little included furry stuffed animals, and lots of rest time. It included balloons, and all sorts of pomp and circumstance.

Recovery, now is more about the sporadic texts and occasional pop-overs while she tries to maintain her school work.

Recovery now includes the realization that it’s very definition of “returning toward a normal or healthy state,” could prove to be elusive, indefinitely.

We do a lot of talking. We all know how fortunate we are. We all understand how much worse all this could be. We have depth of knowledge of those around us who suffer. We think. We pray. We miss our friends.

Recovery, on this beautiful holiday weekend, involved trading walks in the fall air, for open windows. It involved being nearby all night, because I was allowed. Recovery means family time. And maybe that’s one of the things that keeps us sane.

Perhaps “recovery” has become a routine venture. And THAT in and of itself could lead to a whole lot of other conversations.

Tomorrow it’s back to business. The plan is to swim by Thursday. After all, there is a meet this weekend.

Our goals in this house far exceed recovery. That’s way too repetitive.

We like a challenge. We are BEATINGCOWDENS!

The War Ain’t Over Yet…

Published on October 1, 2015October 1, 2015 by beatingcowdens2 Comments

Tonight wasn’t one of our better nights. And, as we drove home, and sorted through a few things, I offered Meghan this outlet. I told her writing helps me sort out my thoughts and get refocused. Here is Meghan, as our GUEST BLOGGER….

***********************************************************************************************

Tonight I couldn’t finish practice. Yesterday I hurt my knee, my kneecap clicked back out at practice and I got shocking pain through my leg. A lot. So I pulled the rest of practice and iced my knee when we got home. I went again to practice today and hurt my knee so much that I couldn’t continue. I went home in tears feeling like I just failed. I gave in tonight. I lost this battle, but I will win the war. Tomorrow I will not play gym, for I will save my strength for swimming.

So, I will go back to Wagner on Saturday, and I will finish practice and do it well. I love swimming, and I love the pool. When I swim I feel like I’m actually at peace. I won’t lose my favorite thing in the world. I will keep fighting, and Cowden’s Syndrome will not win the war. I WILL.

I cannot be normal, and I cannot play as much as I’d like to with the kids. I always have to watch and be careful about what I do to my body. Well, I am not going to let that stop me. I’m going to succeed and I’m going to live my life to the fullest.

Cowden’s Syndrome may win quite a few battles, but I will win this war. I will keep fighting and I will stay strong. I will get some injuries along the way, but I will recover.

Hey Cowden’s, did ya hear me? The war’s NOT over yet, and you will not be the victor. Take your small victories, for today was one of the days when I did give in, but it won’t be happening again any time soon.

Do What You Love

Published on September 29, 2015September 29, 2015 by beatingcowdens1 Comment

It was almost 8:40 last night as I drove down Grymes Hill with Meghan. She hadn’t been home since we left for school at 7:20 that morning. She was facing a shower, dinner, homework, and a later than normal bedtime. She had spent the afternoon registering for her after school drama program, and had spent the last two and a quarter hours in some combination of intense exercise- on land and in the water. She was exhausted and it was evident in her face. But, not it her voice or her mannerisms.

“I know I’ve got you running all over the place Mom, and I know it’s a lot of hours. But, I have to tell you that I LOVE it.”

I couldn’t help but smile in spite of myself. We all want for our children to do what they love. And here she was; registered for drama, swimming 4 days a week, pushing the herself at school, enjoying church youth group, and planning a fundraiser for February.

She feels rotten. A lot. But she pushes. And I have to believe that is how we have to live this syndrome – this life. Maybe I’m a good influence after all.

She plays in pain. Constantly.

She is always recovering from or anticipating something. But instead of waiting for the storm to pass…

She’s clearly dancing in the rain.

We have our spats. We’re supposed to. But, we balance each other too.

We keep each other motivated. We keep each other grounded. Her diagnosis still makes me physically ill. But, it does not, can not, and will not define her. I’m convinced.
Do what you love I tell her. Do what makes you happy. And she does.

And I do too. Watching her for hours, on the bench, in the basement by the pool makes me happy. Watching her on stage makes me happy. Watching her persevere makes me proud.

We will do this- together. We are BEATINGCOWDENS.

Summer List

Published on September 7, 2015 by beatingcowdens2 Comments

I have been walking around all day with that nagging feeling in my stomach.

I have packed my bag, and Meghan’s too.

I have filed, organized, and made lots of lists.

There is a new schedule on the wall – color coded and everything.

The calendar says it’s time, but my heart, and my stomach beg to differ.

Summer was to be about beaches, and barbeques. It was to be about road trips and freedom. It was designed for friends, and fun, and get-togethers.

Except that most of that never came to be.

There was that knee surgery in May, that derailed any hope of walking long distances for a while, and thrust us into 2x a week PT. Which, even though we LOVE Dr. Jill, can be daunting in the schedule. And, it eliminated most day trips that could easily be taken for granted, if you don’t have to factor in that a walk more than about 3/4 mile is out of the question.

And while that was going on Daddy was rebuilding the deck. Alone. For three months. Every spare minute of April, May and June. It looks so beautiful. Maybe next year we will get some people over to relax and enjoy the deck, and the grass. The new grass, artificial, durable, and a drastic improvement over the old side yard. Yes, maybe next year.

We got the pool open the first week in July. And July had drama “camp,” and I use the term VERY loosely. And July had swim practice. And July had doctors, some regular, like PT, others on the 6 month schedule. And some blood tests, and some ultrasounds, and a bone density test for mom. I think I stopped counting at 30 appointments.

But, thankfully August had Disney. And there are few other things that can bring me such joy as a vacation with my family to the “Happiest Place on Earth.”

And August had it’s own set of appointments, including hand surgery to remove a vascular lesion from her palm. And setting up the whole wisdom teeth thing for September.

So it’s easy for me to be sad. And down on things. Because I want a do-over. But, I guess that’s normal. Because most people probably do.

I sat down tonight to get my head clear. To “flip it,” and get my head and my heart in the right place for tomorrow. I sat down to acknowledge the many things I have to be grateful for, and the things that went WELL this summer.

So, in no particular order…

The new deck. No splinters. No maintenance. Pretty. And finished.
The new grass.
Walking barefoot in my backyard.
Road trip to West Virginia, that I took alone, on a very rainy June weekend to meet some Marines. Healing help.
My road trip to West Virginia
Listening to my girl sing. In pain. In joy. In the shower. In the living room. In the car. Anywhere.
Healing progress. From both recent surgeries. And the resilience to continue to endure.
Laughter. Mine. His. Hers. Friends of hers. Strong laughter.
Disney. I’d go back three times a year if I could.
Graduation party, bridal shower, and a wedding. Mom being 18 years cancer free. Meghan turned 12, and Felix had a birthday too! We celebrated Pop’s 96th birthday. Celebrations.
Board games.
Green tea – together.
Trips to Ralph’s.
Watching my all time favorite movie, “Dead Poet’s Society” with my girl.
Nutrition packed shakes, EVERY day. Even in Disney. Fueling my body.
Reading a book my friend in Australia wrote about Cowden’s – for all the world to see.
Antibiotics that heal recurrent infections.
Walking. 5 miles a day, most days. and at least 10,000 steps every day since July 8th. Goal met.
Last, and DEFINITELY not least, were my walks with Mom. My healing walks with Mom. There were so many mornings when she and I walked together, 2 miles, with 2 dogs. We talked this summer more consistently, and for longer, than we have in a long time. I think this was one of the best things that happened all summer. She is a strong lady. Lyme Disease took a stab at her this summer. Apparently for the second time. And she has told it where to go. So often she is a grounding force for me in this never-ending battle to remain BEATING COWDENS. I will miss those walks. They were not just for the FitBit, but so much for the heart and the mind.
My Mom. My first hero. My friend. We need an updated picture.

And that is just what my compulsive, reflective, organized self needed.

Because now, I feel a little better. It wasn’t what I had hoped. There was sadness, and worry. for my own girl, and for so many others. For adults I love, and for a former student fighting a formidable battle.

But, I woke up every day. And lots of days the sun shined. And fun doesn’t have to stop just because school starts.

So as I lay my head down tonight I will do my best to do it with gratitude. For new days. For new seasons. For a job with a kind boss, helpful colleagues, and wonderful children. For a job that begins new every year. For the knowledge that every day, every season, will hold blessings and challenges, for us and for everyone.

I wish you all a wonderful fall, but I’m not closing the pool just yet….

“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

“She’s so unusual…” and Other Ironies

Published on July 19, 2015July 19, 2015 by beatingcowdens3 Comments

This is quite a garble of thoughts… good luck!

** This blog was written over 2 days. The BLUE type was written today, Sunday July 19th, and the BLACK type is from Saturday, July 18th.**

I’ve been asked by people who read this blog, several lately, “How do you stay so UP, all the time?” Sometimes I find that question to be the biggest irony. I struggle often, and deeply. The whole purpose of this blog is a candid description of our journey with this beast called “Cowden’s Syndrome.” Let none of you ever imagine for a minute that we are “UP” all the time, cause it’s just not true.

But, as difficult of a road as this is, I have tried always to remain acutely aware of the connections we have to others, and the never-ending reality that “everyone has something.”

So often my writing is where I work it out. I type. I think. I read and reread. And, cheaper than a therapy session, I am able to tease away the negativity and find the focus I need. And when I am unsure, and it just doesn’t sound right. I wait. Just like I advise people to think before they speak, “Is it true? Is it kind? Is it necessary?” I try to think before I publish. So last night I sat wrestling with this. And I never hit publish.

From “Corner of the Sky,” Pippin soundtrack

Everything has its season
Everything has its time
Show me a reason and I’ll soon show you a rhyme
Cats fit on the windowsill
Children fit in the snow
So why do I feel I don’t fit in anywhere I go?

So again we hear, “That’s really unusual.” “I’ve never seen that before.” “Typically…” And I chuckle, in frustration and in the irony of it all.

This time it was at the dentist. Meghan felt something in the back of her mouth. An X-ray revealed an impacted wisdom tooth. She’ll be 12 next month. The consult with the oral surgeon is on the 29th, two days after she meets with the hand surgeon (again) to discuss the vascular lesion on her palm. Her abdominal sonogram to screen for Cowden’s related issues is on July 31st.

This week someone will call me with the name of a foot and ankle surgeon, suggested by the orthopedist who did her knee surgery based on her foot pain and size discrepancy. Who really knows where that will lead?

I’ve got a bone density test set for Monday, to determine if 30 years of thyroid medication, and early menopause forced on by a hysterectomy at 38, has depleted my bone density. My next phone call needs to be to the vascular surgeon. He had some success with the right leg in February. The left leg is in dire need now. That is as soon as I can settle the errors on the anesthesia bill.

The number for the “Skin Cancer Screening Clinic” at NYU sits on my desk. Meghan and I both need to be scheduled.

I just finished completing the papers for her medication for the 2015-2016 school year. They are copied, one is filed, and one is set to be mailed Monday.

We’ve started to discuss, the two of us, dates for the 2016 “Jeans for Rare Genes” fundraiser. We’ve got some neat ideas. It passes the time.

For the second year in a row, Meghan was nominated for the Global Genes Project “Teen Advocacy Award,” and although she did not win, it is an incredible honor to be making a noticeable difference at such a young age. One day we will take her to California for the Global Genes Advocacy Summit. One day her vision of a denim ribbon necklace will come to fruition. One day. But not this year. Because this year I am trying to schedule vascular surgery that weekend. Because we have to prioritize. Right?

I have set some fitness goals this summer. I am setting a 10,000 step a day minimum. I am aiming for at least 5 miles a day. My dog is in the cross-fire of this goal. She is my walking partner. Because she likes to walk – but maybe not quite that far- and she can’t really say no.

I am always struck by the ironies in life. I am stronger than I have been in years. In many ways I am healthier. I have found Isagenix, and I feel better. Stronger. More resilient. More able to cope with life’s obstacles.

Which is good. Because life has a tendency to be really isolating.

I suppose we all feel that way sometimes. And many of us feel that way most of the time. But, sometimes that is little consolation.

I am grateful not to fit in with the Moms of really sick kids. I don’t envy them at all.

But, I can’t find a spot with the Moms of mostly healthy kids either. Unless I don’t talk much.

Cause talking about a “healthy sick kid” is confusing, and frankly more than most people can, or choose to process.

I want to spend time with people my own age. I have lots and lots of people I like, but not too many friends to get together with. Sometimes I wonder what it would be like to just get together. And chat. Maybe over lunch, or dinner, or drinks. Or maybe have a barbecue, or even a night with other couples. Where everyone socializes. And no one is overly worried about anything. But we end up declining the few invitation we get because something always seems to be in the way.

This life is isolating. The constant doctor’s appointments, surgeries, food allergies, medical bills, prescription drug battles, mobility restrictions, have made us difficult to “hang out” with. And I get it. And it doesn’t make me mad. Because it is what it needs to be right now. And there are friends I talk to and text with.

Do not misinterpret this as a need or a desire for pity, or sympathy, because it couldn’t be farther from that. What I write here is a simple representation of facts that are. They just are. And maybe one day they won’t be. But, I have already learned not to wish life away, not even the uncomfortable parts.

But on nights like tonight, when two decks on my block are lit up with social gatherings, I find that I long for summer days of freedom. I crave careless, schedule free days. I dream of getting up one morning, and hopping in the car with Meghan and just going somewhere far away from doctors and hospitals.

Just like the curly haired people who wonder about straight hair, I wonder. But, even as I wonder, in my heart I know this journey is taking us somewhere. Somewhere with an end I can not see. There are stops along the way to make us stronger, wiser, and more patient. There are lessons on empathy and compassion to be learned. There are experiences that will turn us into the people we were meant to be. The road is long and winding. Sometimes the climb is tough. But, but the view, when you really stop and look, is amazing…

Rivers belong where they can ramble
Eagles belong where they can fly
I’ve got to be where my spirit can run free
Got to find my corner of the sky…

I ended last night feeling lonely, and lost. The song from Pippin had been in my head all day, resurrected from memories of ages ago. Yet, I couldn’t shake it. Where do I go?

This morning Meghan was well. She woke up well, and early enough to make a two-hour morning swim practice, which she completed. I had time to walk a few miles near the pool. The sun was beautiful, and the air wasn’t quite that warm yet. There were birds singing happily, and flowers to appreciate.

After swim we made it to church. It had been a few weeks since we were able to get ourselves there.

And in the bulletin I was met with a quote,

“I know I cannot enter all you feel

nor bear with you the burden of your pain

I can but offer what my love does give –

The strength of caring, the warmth of one who seeks to understand.

This I do in quiet ways – that on your lonely path you may not walk alone.” – Howard Thurman

There was a basket of rocks where we were instructed to take one to represent us. The rocks were placed in a bowl, and water would surround those rocks symbolizing the love of Christ. Stories were told, personal and biblical, about love and caring for the physically, and emotionally wounded.

We were invited to choose other rocks, to represent people we loved, who had needs weighing heavy on our hearts. As I chose mine my eyes were full of tears. Not of sadness for those people, but of the promise that they are also enveloped in the love of God. My hand was full, I must admit, and I took a few moments to say a prayer over each rock as I placed it in the water. And then, tears of pride, as I saw my daughter had selected her own “rocks” to pray over.

The closing hymn (words and music by Marty Haugen, 1987) began like this;

“Healer of our every ill, light of each tomorrow, give us peace beyond our fear and hope beyond our sorrow… You who know our fears and sadness, grace us with your peace and gladness, spirit of all comfort fill our hearts…”

And the idea that we are here to “Bear one another’s burdens,” permeated my heart.

I am not “UP” by my doing at all. I treat my body well. I treat my mind well. And I allow my soul to be cared for.

My peace comes from the knowledge, the belief, the conviction that we are guided by a loving God. That all things are not mine to know, and that through His grace alone we have the strength to remain,

“BEATINGCOWDENS!”

Appreciating the Rainbow AND the Storm

Published on July 7, 2015 by beatingcowdensLeave a comment

Let’s be real. Plain. Honest. Real.

Sometimes we all want to throw our hands up. Sometimes we want to quit. Sometimes we want to hide in the closet or under the table alone. For a long time. Because EVERYONE HAS SOMETHING….

No one’s life is easy. The trick for me is realizing that and moving on.

Yep, some days I throw a fit right here in my house. Some days I am sad and overwhelmed. Some days I even cry, like here (http://wp.me/p2qi4v-10g)

But, the rule is about 15 minutes. I am allowed to have a pity party for about 15 minutes. (Sometimes that 15 minutes happens again, and again – but not usually.) Because then, I have to put on my big girl panties and make it work.

We play a lot of games of perspective here. We work on looking at things another way. “Flipping it…” so to speak, to try to get through.

The end of school is a crazy time for us. It’s supposed to be a time to rest, and unwind. But, really, it’s just shifting gears. Most of our doctors keep us on a “Six month leash,” so we do our best to schedule one round the very beginning of July. This way if anyone needs anything else there is time before school starts again. The other cycle is distributed around February vacation and school holidays. The only problem with this is it grossly limits the number of ACTUAL holidays there are in our lives. There is a good deal of “Go, go, go…”

Despite our occasional “preteen issues” my daughter is insanely easy to please. She wants to swim. She wants to act. She wants to read. She wants to watch tv. She wants to socialize with ~~children~~ preteens who are nice to be around. She wants to eat good, safe food, (cooked by her father not me!)

What she’d prefer not to do is sit. In the car. On the BQE. On the LIE. In the waiting room. In the exam room. Over, and over and over. Yet, still she handles it gracefully. She packs her own bag with a variety of things to occupy her time, and some snacks too. She really does not complain. (Except maybe if there’s a needle…)

What I try to do is spare her some appointments any chance I get. So when mine come up I try to leave her behind, and that’s what I did yesterday and today.

See, between us, there will be 15 appointments in two weeks, ending this Thursday.

This morning I made my 3rd trip to Manhattan in the last 7 days, but yesterday and today I drove alone. Meghan was tucked away at camp. Happy as could be.

I sat in the car, alone. The 20 or so miles never take less than an hour, so the luxury of satellite radio, and my green tea, (plus and e+Shot when I need it) are all mine to savor as we inch along.

I noticed today I was very calm. This life, this Cowden’s Syndrome life, is overwhelming, monotonous, and sometimes very stressful. But, it’s our life. Not glad by any means, but grateful that this load has been bearable thus far.

Some of our doctors could stand to be replaced, but many are stellar.

We are looked at so carefully all the time, that the chances of us missing something important have drastically decreased.

We have real life conversations, about real life problems, and we handle them with A LOT of humor.

We have a home that is full of love, and a witty, intelligent, young lady growing here.

We have two steady jobs.

We are able to vacation, and enjoy a few extras along the way.

We have become adept at navigating the bumpy road as a unit, not just Meghan and I, but her Dad as well. We are a team of three.

We have found nutritional products that keep us energized and strong as we brave the storms.

We are often dubbed the “healthiest looking sick people.” A comment that always makes me smile.

Some people like to use the word “blessed.” I have some trouble with that. If you are the person amidst terrible tragedy, are you then to feel you are not “blessed?” I may have a few questions for God, but the God I believe in doesn’t work that way.

Grateful – feeling or showing an appreciation of kindness; thankful

Now I do believe that there is always room for gratitude. There is ALWAYS something to be thankful for. For us, there is OFTEN a LOT to be thankful for.

Gratitude is not about always being happy, and life always being perfect.

“Gratitude consists of being more aware of what you have, than what you don’t” – Unknown

Even as we journey daily BEATINGCOWDENS, I am striving for an “attitude of gratitude,” for myself and my own sanity, but also for my daughter, who watches and learns from breath I take.

“Take pride in your pain…”

Published on May 25, 2015May 25, 2015 by beatingcowdensLeave a comment

My daughter is a reader. She eats books up. One after another. I have pleaded with her to use the kindle, just to avoid the sheer volume of books in the house. I lack the responsibility to be a good library patron, as my brain can’t remember even one more thing. So the books build up. There are gift cards, and sales. And I never say no to a book. Ever.

Her early childhood teachers nourished ~~a love~~, no a passion for reading. They gave her the skills to decode, to comprehend, and to find her genre of choice, and her escape. She has needed that escape so often through the years that I find myself grateful for how easily the reading comes to her, and forever grateful to those precious teachers who likely have no idea how deeply they have impacted our existence.

This was a weekend full of homework. It was a culmination of a month that began with being pulled from class for play practice, and continued through her surgery on May 6th, and seven days absent. There are 4 honors classes to maintain, and for a perfectionist at heart, striving to get it all done has been nothing short of horrendous. All the classwork, all the homework, all the projects, every last bit of it to be made up.

And I understand, to some degree, why nothing was forgiven. Why she had to do it all. I have sat in the seat of the teacher for 19 years and the reality is absent or not, sick or not, they are responsible for the curriculum. That didn’t stop me from questioning the VOLUME of work and how it differed drastically from unbelievable to totally reasonable. And it didn’t stop the stress and bitterness of the last few weeks from taking a toll on both of us.

I hate having to be the “heavy” all the time. But, I was the one who had to put the books in her hand days post-op. Still working the anesthesia and narcotic pain relievers out of her system, it was time to get started. Knee elevated and iced, we talked through one subject after another.

Normally she manages all her schoolwork alone, and does it quite well at that, but this month I needed to stay with her. Make sure all the pieces were getting put back in place. Junior high is a step closer to the “real world” I guess, and while there was some awareness of her absence, life marched right on.

She hopped in and tried to catch up at school. She spent the entire week there, despite my knowing by Friday she probably should have been home. Friday night the fears were confirmed, as the classic sore throat began. Honey syrup lasted through the night until the pediatrician was able to declare an ear infection, and likely strep throat. She was cultured. The script was filled, and even as she took dose number one, the books were open.

She worked in my office this weekend, so I could oversee. Laptops side by side. Lots of togetherness. But, one subject at a time, it got done. The notes were put into notebooks, packets were completed, homeworks were stapled together. A science book was created and a newspaper for English class too.

And slowly as the last staple went into the last assignment, a smile crept over the corners of her lips. Her throat felt just so much better, and there was this notion that the weight of the world had been lifted from her shoulders. There may be more to do this week. The year is not over quite yet. But finally, she is all caught up.

So she retreated to her favorite spot on the couch today, alternating between reading, and watching a series on Netflix. She brought me her book, “Gathering Blue” by Lois Lowry. “Hey Mom, listen to this…“Take pride in your pain,” her mother had always told her, “You are stronger than those who have none.”

She offered me a free hug and a smile. Then she was gone, back to her day of much-needed peace, healing and rest.

But, the depth of her quote resonated with me. Not only in amazement that she is able to extract such meaning from the context she reads, but also in the context of today, Memorial Day 2015.

When I started writing this blog it was all about therapy for me. It was all about our journey, and what we were going through. And still, so much of my day, so much of our lives, are consumed by Cowden’s Syndrome, its ravages and its effects, that leaving it out of my writing would be impossible. For while it does not, nor will it ever, own us, or rule us, it had shaped us as we grow through this disease together.

Along this journey we have learned so many lessons. We have learned to have a keener eye to the suffering of others. We have embraced the reality that “everyone has something,” and we have a deep appreciation for the many blessings we have.

I spoke several times today with one of my Dad’s Marines, “Uncle Alan.” I learned about lowering the flag to half mast till noon to remember the fallen, and then raising it to honor the living. I learned about some more Marines, and for a short time I was able to provide an ear for someone whose grief on Memorial Day bears more than general images, but actual names and faces. He speaks with such grace, such poise, and such a deep connection to his “brothers.” I can not help but admire him, even as we have yet to meet.

I put together this picture last night. All four of the veterans I love so dearly, only one of whom is still with us here on earth. My Pop, pictured with my Grandma, almost 70 years ago in the top left. At 95 his wit, compassion, faith, and humor still inspire me.

I took some long walks today. I had a few long talks, with God, and with my Dad, and some others gone too soon. I embraced the beauty around me. I gathered my inner strength to handle whatever life has waiting in the wings.

“Take pride in your pain. You are stronger than those who have none.”

Remember THAT. Always.

Now we’re back where we started…

Published on May 15, 2015May 15, 2015 by beatingcowdens1 Comment

“Do It Again” (The Kinks)

“Standing in the middle of nowhere,
Wondering how to begin.
Lost between tomorrow and yesterday,
Between now and then.And now we’re back where we started,
Here we go round again.
Day after day I get up and I say
I better do it again…”

The chorus to the old song rings through my head, as we prepare to return to work and school. Eight days post-op and everything checked out just fine at the surgeon. It’s ok to return to school, as long as she limits stairs, reduces the weight she carries, and generally takes it easy. The surgery went well. The recovery is moving along. But, as with each time we’ve done this, there are no promises. There are some cautious words. There are some hopeful words. This is what I have to focus on. And I will.

But, sometimes it can be hard.

Like when you do research and turn up this page from an orthopedic clinic. (Rosenberg Cooley Metcalf) and you do OK until you get to the bottom where it says “Recovery.”

Knee

Primary Inflammatory (Synovial) Disease of the Knee

Diagnosis

Your diagnosis is a primary inflammatory condition involving the lining (synovial tissue) of your knee joint.

Injury or Condition

This condition represents a primary inflammatory disease developing within the velvety lining (synovium) of the knee. In response to inflammation, the lining tissue can thicken and hypertrophy dramatically which may lead to chronic swelling.

Cause

The cause is often unknown. Some inflammatory diseases of the knee lining involve only the knee joint (PVNS). Other diseases like Rheumatoid Arthritis can affect multiple joints.

Symptoms

Typical symptoms are moderate to severe generalized swelling and pain about the knee. Marked swelling can be associated with stiffness usually in bending the knee. Increased warmth is felt about the knee in some cases.

Treatment

Standard treatment includes:

Anti-inflammatory medication for six months.
Safe exercises to improve strength without aggravating swelling.
Ice, warm packs and knee balms can be used to decrease pain.
Swelling can sometimes be reduced by application of elastic stockings and/or sleeves around the knee.
Diagnostically, joint swelling aspiration and MRI can provide information, although it may not change the treatment.
If non-surgical treatment fails, arthroscopic surgery to remove the diseased tissue (synovectomy) should be performed to limit or cure the disease.

Precautions

Important precautions:

Do not aggravate swelling and warmth about your knee. Increased warmth and swelling may weaken your thigh muscles and may raise the risk of destructive changes within your knee.
Do not ignore or neglect your condition. Follow recommendations and do not miss important follow-up visits.
When arthroscopic synovectomy is necessary, elevate your limb very well for 48 hours and initiate full weight-bearing within the first 3 days of surgery.
Avoid stress.

Recovery

As the cause is unknown in many cases, the recovery can be uncertain. Two-thirds of cases generally recover completely. Full recovery after arthroscopic surgery usually takes 3-6 months.

“Two – thirds of cases generally recover completely.” The math teacher in me is unhappy with those numbers. The mother, the mother of this child, knows that she defies statistics whether they are for or against her. She is her own special case.

Meghan spent the week on the couch, making up what seemed to be an astronomical amount of schoolwork. Maybe it was a good distraction. After surgery 13, the novelty of the whole thing has worn off. Days are long. Recovery is mundane. People are busy. Texting helps a bit, but the hours drag.

We got to PT this week, twice. And already I see progress. That’s why quality therapy is worth every minute.

So during my days home I did laundry, and caught up on some household things while I stayed close to my girl. I also attacked “the pile.”

There is a spot on my desk where all the bills, letters, invitations, flyers, and pretty much everything else goes. I try to get to it every few days. But mostly I don’t. Then it overwhelms the table. And somewhere under the pile is “the list.” The upcoming appointments line the top. Then there are the appointments I need to make, and the bills to be addressed that for some reason are not in “the pile.” Today was a good day to tackle it. I made some significant progress.

I also spent hours on the phone. I dredged up the anesthesia bill from my surgery in February. That took an hour. But, it’s done for now.

I started scheduling appointments. We tend to cluster a lot the first two weeks of the summer. Some have been planned for months. Some I’ve been blocking. I got a few more in. Then I got stuck.

In the hospital the pediatrician last week was really on my case. She wanted to know who was “in charge” of Meghan’s appointments, check ups and surveillance. She didn’t like that I said, “ME!” (Maybe it was the way I said it… (grin)) But, truth be told, I really don’t like it either.

I had to tell the endocrinologist that 12 weeks was too long to wait to repeat ANOTHER irregular lab finding last week.

Meghan’s blood pressure in the hospital was low. Like at times crazy, scary low. I know she was just cleared by a cardiologist, but…

And the lesion on her hand dubbed “vascular” by the dermatologist…. What to do with that? The same dermatologist who promised the moon and the stars and the sky in November as I prepared HOURS worth of Meghan’s medical records for her. The same doctor who said she’d help us. That one. Yep, she’s useless at this point too.

I was on the phone today pleading with the receptionist of one of my doctors to let Meghan come in as well. Apparently the fact that she’s “adult size,” doesn’t matter. I was left so frustrated I choked on a few tears.

This Syndrome is big. I can manage it. I can and I will, because there is no other choice. But, I need some help. I need a point person. Someone to force the doctors to listen. Someone to gather it all into one place and make sure it makes sense. Someone to make sure we don’t miss anything.

In desperation I emailed the genetecist who diagnosed us. He responded within an hour.

Dear Mrs. Ortega,

I am sorry I said no need to return. I have been overwhelmed with patients but this is no excuse. I will find out the referrals needed for Meghan and we will together make a surveillance plan. And we will meet so we will document the whole process.

I feel that I am the least helpful of all the physicians because I do not provide treatments. However, I will gladly assume the role of coordinator of care for you and Meghan.

Sincerely,

(The angel I need… I hope)

I will call tomorrow to make an appointment. I have a good feeling about this one. Please, whatever your faith, send some prayers. This would be huge. Really huge, in a life-changing good way. We are three years in and due for an overwhelming cycle of tests again I’m sure – but I know it gets easier.

I just want to keep her safe. I want to use every tool God has given me to keep her as safe as I possibly can, so we remain BEATINGCOWDENS together.

“…Where are all the people going?
Round and round till we reach the end.
One day leading to another,
Get up, go out, do it again.

Then it’s back where you started,
Here we go round again.
Back where you started,
Come on do it again…”

Reflections on Mother’s Day – from a “Rare Disease” perspective

Published on May 11, 2015May 12, 2015 by beatingcowdensLeave a comment

Dates, numbers, anniversaries, addresses, and all sorts of other numbers crowd my brain. I’ve said this before, and I will say again, it is a blessing and a curse. It is a good thing to celebrate accomplishments, and the anniversaries of such things. It is dangerous territory to recall to be caught up in the negative aspects of any day. By doing so you give it power. And, if you are not careful you give it power over you.

It is a dangerous road to walk. I have done many miles on it. And my brain does not differentiate the “good” dates and the “bad” ones. I remember them all. The problem is, some fill my heart with gratitude and joy, while others seem to provoke anxiety unceasing – warranted or not.

I have never been a fan of “Hallmark” holidays. Valentine’s Day, even after I found the love of my life, has never held any appeal. Mother’s Day and Father’s Day don’t do much for me either. Before you jump on me for not loving my parents, I want to share part of an interesting article I read on the history of Mother’s Day.

From: Mother’s Day Turns 100: Its Surprisingly Dark History

By Brian Handwerk, for National Geographic

PUBLISHED MAY 09, 2014

“For Jarvis it was a day where you’d go home to spend time with your mother and thank her for all that she did,” West Virginia Wesleyan’s Antolini, who wrote “Memorializing Motherhood: Anna Jarvis and the Defense of Her Mother’s Day” as her Ph.D. dissertation, said in a previous interview.

“It wasn’t to celebrate all mothers. It was to celebrate the best mother you’ve ever known—your mother—as a son or a daughter.” That’s why Jarvis stressed the singular “Mother’s Day,” rather than the plural “Mothers’ Day,” Antolini explained.

But Jarvis’s success soon turned to failure, at least in her own eyes.

Even Anna Jarvis did not intend the holiday as it has become.

I have epic amounts to be grateful for. And I am. Every day. I think that’s why the pressure of having it all jammed into one day confuses me and stresses me out a bit.

In church we were taught, “Honor thy father and thy mother…” I believe the meaning was every day.

So yesterday I needed to do some soul-searching. And I think I figured a lot out.

I have a tough as nails mother. She is the strongest woman I know. Not a day of my life goes by that I am not grateful to her, and for her. And I try not to let too many days go by without telling her so. Life has taught some tough lessons, and sent some reminders about how fleeting it can be.

One of the many lessons I learned from Mom

I have two grandmothers on this earth. One I had the privilege to grow up with, and even though the recent years have been cruel to her memory, my memories of her, and of her love, penetrate my soul.

I have another grandmother, a gift to me 27 years ago, who inherited me as a teenager and allowed herself to love me. I am so grateful for that love.

And my grandmother Gen who left for heaven in October, whose smile I can see, and whose laughter I can hear… her memory warms my heart.

I am so very thankful I did not wait to acknowledge them only once a year.

My girl is recovering from surgery. On my couch. In pain. Feisty. Looking to move. Bored. There would be no grand family celebrations yesterday. My husband was fixing our deck that is literally falling apart. A labor of love – and safety. I stopped in for a quick visit to Mom and one Grandma.

I reflected about Mother’s Day a year ago. Spent in the pediatric unit at RUMC. Scared out of my mind. Not knowing what we were up against.

Then I thought about Mother’s Day 2008. A few days after the tonsils and adenoids came out.

Or Mother’s Day 2012, as I awaited my hysterectomy, a few weeks after my double mastectomy.

Then I thought about my friends. The ones who have lost their moms way too early.

And the others, whose hearts yearn to be a mother, or those who ache to have larger families than they do.

My heart aches for those who have lived through the unthinkable, and have lost their own children.

Why so much pressure put on one day?

Wouldn’t it just be easier if we celebrated our Moms every day? Instead of waiting for one day?

I know I may have an unpopular idea here, but so many unconventional things work for us.

I would never claim our lives to be “harder” or “easier” than anyone else’s. I’m not that kind of fool. But I will dare to say that maybe raising a chronically ill child makes it “different.” Maybe facing life with two rare genetic diseases in the family makes me think of things in a slightly unorthodox way.

I stick a note in my 6th grader’s lunch just about every day. And I will until she tells me to stop. I will remind her in as many ways as I can, of my love for her every day.

Life is scary. Our lives are scary. Wednesday some machines, and a very smart doctor breathed for her, for over 2 hours. This is not a rare occurrence. This is something that goes on regularly, for one of us. But, they told me she was, “stable and strong,” and in those words were the best gift I could ask for.

Mother’s Day is every day. From mother to child, and child to mother, and aunt to niece and grandparent to grandchild. Not in the, “buy me lavish gifts or send me to the spa” sense. But, in the, “I’m really lucky to have you. Right now. Today. and thanks. For that thing you do. For that smile. For that hug. For calling me. For calling me out. For driving me to the store. To school. To practice. For driving me insane. For making a mess. For sometimes cleaning it up. For sitting by my hospital bed. For getting me ginger ale. For helping me walk. For making me laugh. For never giving up on me. For understanding I won’t be here forever. For being my cheerleader. For supporting me. For listening to me. For shutting up. For saying just the right thing. For explaining the math. For butterfly kisses.”

Mother’s Day in our house may be low on pomp and circumstance, but it’s high on all things that matter. Right now we’re nursing a recovery. And it’s coming along, thank you very much. We are incredibly proficient at this.

And as Mother’s Day 2015 drew to a close, and as we ate our gluten-free pancakes for dinner together, I was struck with the thought that I would not have it any other way.