Triage- A Way of Life

Published on April 26, 2018April 26, 2018 by beatingcowdens5 Comments

Triage. The word hangs with me like the memories of countless Emergency Room visits.

Triage. Take care of the most serious first.

It’s the reason we might wait hours for stitches, and barely a moment for a trauma.

I get it. It makes sense in the ER. It also makes sense on the battlefield, or in other places where there is widespread injury to be treated.

The thing is, you typically don’t stay in those places FOREVER.

Places we equate with triage are not places of comfort. And that’s where this life with Cowden’s Syndrome can get tricky.

You see, lately I can’t shake the feeling that life is triage. 24/7/365 damage assessment, and handling the most critical first. Vigilant. Hyper-vigilant. ALL. THE. TIME.

When you live with a chronic illness, a syndrome that causes cancer by its very definition, it is so easy to get wrapped up in monitoring and preventative care. And then there are the times that you go for those monitoring appointments and they require their own follow-up. This condition can easily morph into a beast that can swallow you whole.

And we’re at it times 2.

What I refuse to allow this syndrome to do is take away any more from my daughter’s life than it has. To the best of our ability, she will do “teenage” things, and she will do things she enjoys.

But, lately that has become quite the juggling act.

I am monitored twice a year by endocrinology (post thyroidectomy), my breast surgeons, and dermatology. I am monitored annually by gyn oncology, and oncology. This is post-bilateral mastectomy (stage 1 DCIS) and post hysterectomy. I am monitored every 5 years for colonoscopy. I am also monitored with abdominal ultrasounds for 4 hamartomas on my spleen, and a cyst on my kidney. This may not seem all that impressive, but those are just the appointments if everything goes well. That’s not additional scanning, blood work and biopsies. None of them are close to home either.

Not to mention, I am still searching for a local primary care doctor. In addition, there is dental work, both routine, and the emergencies the stress from grinding my teeth keep causing. I’ve been referred to another oncologist who specializes in genetic diseases, and I need to get in to see her. I just completed vascular surgery, with its pre and post op appointments and recovery as well.

That’s just me. Me, and my full-time job. And, like every mother, my needs are not the most important.

My girl sees endocrinology twice a year. She is still, 4 years post-op, trying to get thyroid function balanced. She sees gastroenterology, and dermatology twice a year. She also sees an adolescent gyn twice a year, courtesy of precancerous tissue already uncovered in her teenage uterus. She sees a chiropractor every 2-3 weeks for pain management. Right now, amid diagnosis of the small brain tumors, she is seeing neurology every three months for new MRI scans. She sees orthopedics every 8 weeks. They have been monitoring her knee for years, and recently stubborn tendonitis in the shoulder. There have been a few MRIs of late. She has seen physical therapy weekly since the fall, and is now working on twice a week.

She is tired. Partially because of her schedule, and partially because of her sleep patterns. Despite a regular bed time, she struggles to get quality sleep. It is hard to turn her brain off, and for her to get rest.

She has developed Post Traumatic Stress Disorder (PTSD) and anxiety, secondary to consistent medical trauma. She is working through it – but, like everything else, it is a great deal of work.

She is awaiting word that her service dog is ready. The call could come any time in the next 6 or so months, but we are hopeful this dog will help her through what can be some trying times.

She is an honor student. She is a swimmer – at least 5 days a week, for 12-15 hours a week. She is in weekly vocal lessons, and a theater group that meets 3.5 hours a week. She enjoys a local church youth groups.

She has food allergies – restricted from dairy, gluten and soy. And seasonal allergies to all things pollen.

None of this includes normal things. Like dentist and orthodontist visits, or even haircuts.

It is easy to get isolated.

She has a strong sense of what is right and wrong, and can be rigid in her perceptions. But, life has shown her things most adults, let alone people her age, have ever seen. Just as that strong mindedness flusters me, I refuse to try to break it down. It is that same will that has gotten us where we are.

And where we are, is in TRIAGE.

My iphone calendar is with me everywhere. I prioritize swim and theater over doctors when I can. Physical Therapy is a high on the list right now for pain management and strengthening.

Vocal lessons keep her going, as she can sing herself through a lot of stress. Theater is just a fun group of children, and I am not willing to sacrifice that.

I have a list by my desk of “next up” appointments, and because our availability is so limited, I am often booking months out. We travel to most – NYC or LI. Short on miles – but up to 2 hours each way – often.

We stack them when we can. Two appointments are a bonus, three is a banner day.

And every year about this time I dream of a summer light on appointments. I’ve yet to see it come true. Truth be told, almost every school holiday and every vacation is cluttered with things we need to do, but would rather not.

There is a blessing in knowing what we are fighting. There is blessing in having a warning system in place. But, there are still some days when I’m totally overwhelmed that I wish I didn’t know so much.

Triage.

Triage means that right now the physical and emotional health of my teenager trumps all.

So she swims 5 days. We do PT 1-2 nights after swim. We see “other” doctors midweek on the one day there is no swim. We do voice, and theater on Saturday.

I make my appointments on weekends when my husband can drive. I make my appointments a year out so I can stack three in one day in the summer and on February break. I schedule our surgeries for February of Easter vacation when I can.

I plan our fundraiser now for October, so as not to give it up, but in hopes of finding an easier time.

I research at night. There is always a need to learn what most of our doctors do not know.

I write, when I can. I love it and I miss it, but time just doesn’t seem to allow.

Hair, nails, eyebrows, and things I used to enjoy are forced into holes in the calendar, every once in a while.

Dust builds in places I never used to allow it.

Friends, well I have to trust they get it and they’ll be around when there is a change in the current status of things. I miss them.

Triage.

It starts early in the morning, waking up a teen who just hasn’t slept well.

It continues through the day – my job and her school.

After school is all about making it work. Swim, PT, or whatever therapy the night brings.

There are often phone calls, requests for lab reports, or battles about IEP needs… Emails go through the iphone.

Usually we are out of the house about 13 hours.

At night we pack everything so that we can be ready to begin again.

Triage.

Most critical right now is allowing my teenager to find her way, in school, in sports, and in her life. Most critical is giving her very real scenarios where her disease does not define her, and she is able to achieve in spite of her challenges, not because of them.

In order to make this happen, everything revolves around her schedule. There are opinions about that in all directions. There are people who would tell me I am creating an entitled, self-absorbed human. I don’t pay them much mind, because they haven’t met her.

When I signed in to be a parent I knew I’d be all in. I just never saw THIS coming.

Balance needs to always be in place, where the physical needs of either of us are never overlooked. However, non-essential appointments CAN, and WILL be scheduled around our availability. She will be a happier, and more tolerant patient when she didn’t miss something she loved with three hours in traffic and two in the waiting room.

Triage is meant to be something you experience briefly in times of crisis.

The “fight or flight” response is not always supposed to be on.

But it is.

At this time in our lives we may not always make for stellar company, although ironically, we’d love to have more of it.

At this time, we may say no constantly, to the point where you stop inviting. Trust me. We’d rather go. We actually enjoy your company.

At this time, we are so busy surviving, and taking care of the most critical needs, that anything not immediately essential gets passed by.

We are constantly evaluating order of events, but TRIAGE is fluid by definition. Unfortunately there are so many situations and scenarios, it is hard to see through them all.

Even at our toughest times. Even at our most overwhelmed days. We can look around and find our blessings. They exist in big things, like being able to physically attend 5 practices a week, and little things, like being able to WALK around the school without hesitation or assistance.

We are aware of those suffering illnesses far beyond our grasp. We are aware and we are grateful for the health we do have.

We are also tired. And lonely. And often overwhelmed. We also know this is the way the plan must go for now. And one day it may change.

Triage is fluid.

Life is fluid.

We all do the best we can with what we have where we are.

And we remain steadfast

#beatingcowdens.

Sometimes GOOD Things Do Happen…

Published on January 4, 2018 by beatingcowdens3 Comments

Sometimes really GOOD things happen. And when they do it is just such a jubilant feeling of gratitude and relief.

In October I wrote at length about Meghan’s struggle with PTSD and anxiety. I wrote in the blog linked below about our commitment to obtain a service dog.

A blog outlining Meghan’s journey towards a service dog.

When we made this commitment it came with an enormous price tag. It came after two of her doctors strongly encouraged the decision. It also came with a determined sense of urgency that we would do whatever was necessary to make this a reality for her.

After searching, we interviewed with, and contracted with Medical Mutts. We were drawn here because of their commitment to rescue their service dogs. We currently love 2 rescues, and a third spent several wonderful years as a key part of our family. We believe strongly in their mission. We put the deposit for the dog on our credit card, a total leap of faith that was so necessary at that moment when she needed HOPE.

Meghan had weighed out the pros and cons of a service animal. She had overwhelmingly decided on the pros. And, while we know there will be bumps in the road, her father and I trust her instincts.

The wait time for a dog can be a year. We had to get her into the system.

Then we paused and wondered how on earth we were going to manage the cost of obtaining a fully trained service dog from Indiana, with costs including a week of lost wages, air fare, hotel, and food while we were there. We knew we needed help.

We reached out to local charities and were directed first to ECHO –Emergency Children’s Help Organization

Previously, I had an idea they existed, but I had no idea we would ever need to ask them for help. The whole act of asking for help is humbling. But, if anything can humble you, it is the desire to provide your child with what she needs.

When I spoke to Gina she was friendly, helpful and calm. She spent so many different sessions on the phone with me as I drove her wild with questions. The application was intense and comprehensive, but I understood why.

With time and patience I was able to deliver her a completed application close to the end of November. When I submitted the application, I had complied a list of other places we would apply to once they decided if they were going to grant us money. I had never done anything like this before.

Through the process I was able to compile a history of Meghan’s charity work around the community. I was proud to be able to attach a document detailing her work.

The executive board at ECHO was presented with Meghan’s case awarded her a grant that exceeded my wildest hopes and dreams. With one phone call Gina was able to tell me that the balance of the dog would be paid in full, and there would be stipends for the travel to Indiana, the lodging, the transportation and the food. In short, we were told to focus on Meghan. The financial burden of the dog she needs so desperately had been lifted.

I have no doubt that Meghan, once she feels well again, will return to the charitable end of things, fundraising for PTEN disorders, and for those less fortunate. It is part of her heart.

Right now, we have HOPE to carry us through some difficult times. We have HOPE and eager anticipation for a dog that will become her best friend.

HOPE right now is spelled ECHO.

Please, if you’re inclined to support a quality organization – visit their website and consider a donation.

Emergency Children’s Help Organization – Donation Page

We will wait for the new dog anxiously in HOPE and GRATITUDE.

Forever,

#beatingcowdens

Invisible Illness – Sometimes We ALL Need Help

Published on October 21, 2017 by beatingcowdens7 Comments

The day starts with me laying in my bed, trying to wrap my mind around the fact that it is time to face another day. I lay there a few moments. My heart rate begins to rise. I feel the familiar ache and throb in my legs, and I quickly calculate the number of hours until I can re-visit my bed.

On the days I can move fast enough, I take a quick shower before I undertake the 10-15 minute process of waking Meghan. Please, save the judgment that she is 14 and should be waking herself. You’re right. Except by the time I get to the top of the stairs there are several alarms sounding simultaneously. She would if she could.

Waking her is no easy task. Her body, so deeply fatigued by her daily physical and emotional battles, resists breaking those last few moments of cherished rest. Never enough. All teens are tired. I get it. I don’t know for sure that YOU get looking into the eyes of a 14 year old, bright, compassionate, articulate, and full of promise, as she pleads for it not to be morning.

The two of us together are some pair in the early hours. My body aches but by the time I get through the shower I can usually shake some off. I am also 30 years her senior, so living in my mid-forties, I can expect some normal aches to start to take hold.

Like so many things, Meghan’s life is mine amped up. I was always tired, but didn’t know “train wreck tired” till the attempts to balance my thyroid in my mid-twenties.

She was 10 when that journey began. It is not right yet, although a competent, sensitive endocrinologist watches closely. Synthetic anything gives her body a problem. Always has.

Adding in the synthetic hormones to contend with the suspected start of endometriosis has added a layer we need, but didn’t want. The pre-cancerous tissue in the uterus is likely to be helped by this step, as well as excruciatingly painful periods, but like all things it is not without cost.

She drags her body down the stairs, walking crookedly to contend with a back, or a hip, inevitably and almost constantly displaced by a full foot size discrepancy. Bi-monthly chiropractic visits put things back in place, for as long as they last on her 5’8″ frame.

As she travels the two flights down to her bathroom, there is an internal, and audible triage of the aches of the day being sorted. It’s agonizing to watch and listen to. You see there is never a day where everything feels well. There is never a day where she is just tired. There is never a day that she wakes eager to face even the most exciting events.

There is a part of me, a small quiet part of me, that sometimes allows myself to believe that maybe she’s playing games, exaggerating, or trying to make me insane. And then I think quite simply, why?

Why would she WANT to hurt, or have an upset stomach, or be in pain. She, who is eager to please her parents, and everyone she meets, would not want to be in internal turmoil or conjure up ailments.

So my mind does it’s thing as well. “How many days has that been bothering her?” “Do I need to take her to a doctor?” “Can they really help anyway?” “Is anything lasting too long?” And so on…

And somewhere in the middle of this, as the moments kick past 6, I have to push. We have to be out the door in order for her to be at her 7:25 period 1, and for me to be in my classroom in time to set up for my 8AM students. There is really no time to deal with any of it. We simply need to press through and get out of the house.

We do a lot the night before. Lunch is packed, swim bags are packed, clothes are picked out. Homework is always in the backpack. Mornings are not for things that can be avoided.

I have to admit there are mornings where it has gone very wrong. There have been mornings where I have not felt well myself, and my patience with the multitude of issues required to just get herself dressed and ready are forgotten temporarily. I am not proud of the mornings where the clock passes the point of panic and I evolve into a screaming shrew. But, this is about honesty, and honestly, it happens.

Smooth or not, we find ourselves in the car on the close to 20 minute ride to her school. And that is where it gets trickiest.

Months ago Meghan was diagnosed with PTSD – Post Traumatic Stress Disorder, secondary to medical trauma she has endured in her young life. That PTSD has been exacerbated through the years through a variety of triggers she works to manage. But, many days it seems her “fight or flight” is broken and she is wound into a high state of awareness, of EVERYTHING. That means every human interaction, every test, every assignment, every competition, every audition is just amped up. Sometimes the volume is so loud it can feel almost crippling.

And, yet still, as we work daily, she has to get out of my car and walk into that building alone. Some days are easier than others. Some days, I’m tempted to snatch her and drive far away where I can keep her safe and calm. But, she’s not 4 – she’s 14. And, she has to go. She knows it too. So she does.

It’s not about the people anymore. Although it was for a few years. Now, thankfully, it’s not. The people are kind. They students are friendly, and while no one is friends with everyone, she is after only about 20 days, building positive relationships with peers, her swim team, and many adults.

So why? I’m not sure. And I’m not totally sure she is either. That’s why we’re working on it.

But, there are theories.

Post Traumatic Stress Disorder is not rare. But, Cowden’s Syndrome is. And in my child the two are intermingled. The relationship between chronic medical issues, 18 surgeries, tests, scans, hospitals, isolation, heightened anxiety, the need to self-advocate, a lack of trust for the many medical professionals who have handled things wrong, and the isolation and overwhelming feelings this can cause is just the tip. Coupled with generally feeling off, having a super sensitive stomach, relentless seasonal allergies, and being an athlete who simultaneously loves her teams and fears competition can create consternation. This is the very tip of what I know to be a Titanic sized iceberg we are working on melting.

She likes her school. She likes the people. She likes the environment. And yet there are days it is a struggle, a moment by moment struggle to make it. She hurts. She pushes. She is stubborn. She is strong-willed. And for as many times as those characteristics cause me to want to bang my head repeatedly against a brick wall, are as many times as I thank God she is that way.

She likes to swim too. She likes to swim for her school. She likes to swim for her 12 month team. She enjoys feeling strong, and having a body that reflects her hours of training. I am grateful that she is an athlete. But, the battle to get into the pool when every piece of you just hurts, and you want nothing more than to be in your bed is a battle her coaches or her teammates do not fully see. I mean they see the performance anxiety, which is WAY deeper than what it seems to be, but the rest, the full deal is carefully and intricately hidden like so much else. No wonder she is tired.

We are working on it.

Every day is a battle to get through the day. Sometimes physically, and other times mentally and emotionally. Yet, day after day, it gets done with a grace that often blows me away.

Every house holds secrets. Private, messy moments that are not shared with the world. We are not the only ones, and we are not oblivious to the moments others must hold close to themselves.

Collectively, we all need to stop judging. We must stop imagining their life is perfect because it looks so on facebook, or instagram, or snapchat. We need to be kind. We need to go back to the basic rule that “If you have nothing nice to say – don’t say anything at all.”

We need to not profess that we can fix others problems, or make ourselves feel better by offering “quick” solutions. It is hard to watch others in pain. It is not easy to accept that sometimes there is nothing we can do besides be a friend. We need to acknowledge pain, and struggle as real without giving in.

In this house weekends are still about survival. They are about recovery. They are about storing up a ‘spoon’ or two so that we can use them in the coming week.

One day I’d like us to have a social calendar. I’d like to get out as a family and make some memories on a sunny October day. But, today was not that day. Today was swim practice and vocal lessons. That is what we could do. Today.

The evening winds down and we are faced with the reality that sleep will need to happen again. Sleep is tough times. Not for lack of fatigue, but for a teenagers over worked mind. We are working out a system. We are seeing some progress. The struggle is real.

We are working on it.

This week we contracted with a company for a Service Dog to assist with the PTSD. It will be one of many interventions we will use. We have sent a deposit. The process has begun and can take up to a year. We are hoping it will be sooner.

If you have read this far, and you have real suggestions for grants we can apply for to assist in raising the cost of this dog, your assistance is valuable.

We are not looking for an analysis, or reasons why we Meghan might NOT need a Service Dog. We have medical professionals encouraging this. We will deal with logistics as the dog’s arrival looms. In the mean time, we are working purely on fundraising.

The organization we are connected to is http://www.medicalmutts.com They are an accredited business that we researched extensively. When the dog is ready we will need to spend a week in Indiana picking it up.

The decision to make this move was based on many factors, but it was guided by Meghan. She has researched. She has thought. She has read. Her father and I have learned to trust her instincts. Undoubtedly, that is one of the reasons we have come so far.

Looking forward to hearing your encouraging, helpful comments –

We remain

#Beatingcowdens

Change- The Only Constant

Published on September 29, 2017September 29, 2017 by beatingcowdens1 Comment

Wild. These last few weeks have been just that.

I’m always amazed at exactly how much can fit into hours or days. Sometimes I try to recap a day, and find myself shaking my head.

Meghan is in high school.

I feel like we’ve been looking at high schools since January. We had it figured out by May. So we thought. September 15th is ok too. Because the plan was clearly not ours to make, and like so many other things was guided by a higher power.

It’s not the high school she planned to attend. It’s not even the high school she started in September. But, on day 8 – she enrolled in a school a few miles away. The reasons are irrelevant. The outcome is what matters.

Currently her school mascot is the “Warrior.” Somehow that seems remarkably appropriate.

She is catching up on notes missed the first 8 days. She is organizing in a way that only she has, and getting herself set up. She functions largely alone now. Years of supporting schoolwork have paid off.

September is chaos. Pure chaos. 21 years of Septembers, 14 of them as a mom and a teacher. Not a single one gets easier. No matter how many years I do it. The new schedules, the logistics of organizing, and establishing routines, both at work and at home can generate extra gray hairs at the thought.

The only thing the same is the chaos. And the inevitable illness.

The weakened immune system, and maybe the ragweed allergy, means there is never a September I can recall for her with perfect attendance – or without a sinus infection.

There are so many things packed into a day. Sometimes I can’t think more than a few hours ahead because it gives me a headache.

Right now there is swim. A whole lot of swim. There is swim for her 12 month team, and there is high school swim. There is practice for both. There are meets several times a week. I think there is an 11 day stretch in October where there will be 8 meets.

There are new friends. There is a team. There are old friends reunited. There are kind people. In so many ways there is some peace. Finally.

Except 7 days of 9th grade (actually 6- the sinuses sidelined her today) don’t, or can’t make it all ok.

While my girl works to establish herself as an athlete, a student, and a generally nice human in her new school, she continues to battle every moment with her health.

And because it is that “invisible illness” kind of battle, no human would imagine what it takes for her to get through these days.

She sleeps poorly, struggling for hours each night to settle the pain in her body and the activity in her mind. She wakes fatigued, and with great effort.

Her pill case overflows – thyroid medicines- 2 kinds, allergy medicines – a pill and 2 nasal sprays, antivirals, medicine for reflux. Currently another (sigh) antibiotic, and a short course of a steroid for the sinuses. Strong probiotics, a multivitamin, and a few others, all cross her lips every day. Each one carries with it its own set of risks and side effects. Yet, we have had to make the decision each time that the benefits outweigh the risks. There is a lot of trading “this for that” that you do when you have Cowden’s Syndrome. It’s a dicey game. There are no right answers, and every educated guess could backfire.

The medication leaves her more tired.

The thyroid being gone during these years was necessary torture.

She is gaining back strength lost during months off her normal routine this spring. The knee is back to allowing her activity, but the body continues to prefer the development of one side. The difference is so subtle to the eye, but to her it feels so much more. The right side lags behind.

The foot is smaller and more narrow on that side as well. It leaves her stride off. Again she compensates. Again she aches.

The chiropractor readjusts about twice a month, sometimes more.

The backpack is heavy. Everything throws off the stride.

The sneakers are carefully chosen. I shudder at the thought of shopping for dress shoes for my tall, thin, beautiful girl to be “party ready.”

The stomach, once improving, seems to be back on strike. The pain is more frequent. The heartburn, once gone, creeps into life more regularly. But, as is the story of the chicken and the egg, trying to tease of which medicines are causing what is no easy task.

There is no “typical” 14 year old girl.

There is no “typical” Cowden’s Syndrome patient.

We are all just trying to figure it out the best we can with what we have, where we are.

There has been a lot of talk lately about disclosure, and the internet. There is no real way of teasing apart what is syndrome related and what just is. Meghan and I tell this somewhat censored, but typically brutally honest version of our struggles, not because we think others have it better, or worse, or even the same, but rather to validate that Cowden’s Syndrome is real. It doesn’t take a holiday. It affects every day and every decision we make.

I have a follow up from my voice surgery this coming week. I’m not so sure how it’ll go. All that back to school talking, even with the head microphone, has been tough.

I scheduled my next vascular surgery for February 21st. Exactly enough time to stay wrapped for 5 days and make it back to work on the 26th. They thought I was nuts. The leg hurts now. But, the luxury of time needs to be saved for things that can’t wait.

The only thing constant is change.

The shell of it all remains the same, but the logistics and decisions forming the web get increasingly complex.

Yet, we need to remember, in the midst of the regular chaos, and the medical chaos, to stop, or at least to pause. And sometimes, maybe a sinus infection is how the universe forces the pause…

Change is constant, but we remain

#beatingcowdens

through it all.

The Comeback…

Published on July 31, 2017August 1, 2017 by beatingcowdensLeave a comment

“…There is no mountain you can’t face

There is no giant you can’t take

All of your tears were not a waste

You’re one step away…” Danny Gokey

We listen to a good deal of Contemporary Christian music. There are other tastes among us, but often, especially in the car – we listen to this. It’s been a few years since we’ve had a church where we all felt comfortable and at home, although we possess strong, deeply rooted faith. This music helps keep us focused when things can otherwise seem blurry.

This particular song surfaced a few weeks ago. Meghan was battling to make a comeback from knee surgery 7, and seven was NOT a lucky number.

When you’ve been through the operating room 18 times and it’s still a week before your 14th birthday – you can call yourself somewhat of a professional at recovery.

We left the hospital with our list of directions. We went to the surgical follow-up. We scheduled PT. We even held an extra week before restarting swim. There were crutches for a very long time – used responsibly. So, when she had done everything right, and her body decided to push back – hard, she was understandably angry and very frustrated.

No one really had a solid explanation for the fluid that overtook that knee almost 5 weeks post operatively. But, there never really is a solid explanation. I’d like to say we’re used to it. But, I don’t like to lie.

There were more crutches, and more PT with the BEST PT in the whole wide world. (We LOVE Dr. Jill – because she works on the WHOLE kid. She gets that they are more than the body part giving them trouble. I know of NONE quite like her.) There was increase in strength and range of motion. There was a return to (half) swim practices.

There has been diligent icing after swim. There has been stretching and strengthening because, quite frankly, she WANTS to feel better.

We joked around during the month of June, how nice it would be if we could make July a “doctor- free” month. We longingly imagine the same scenario every year. What if summer could be time to relax? What if we could take day trips? What if we could come and go, and rejuvenate?

I just counted 20 medical appointments between us over the last 31 days. There are 2 more tomorrow.

Chronic illness is a real drag at any age. When it happens to a child or a teen it makes everything that is already hard about growing up – even more of a challenge.

When you are in an almost constant state of recovery, you can find yourself tired. Fighting so hard just to get back to where you were can make you feel like a hamster stuck in a wheel.

Chronic illness, constant pain, surgical recovery, ongoing surveillance, and all the other “fun” things that accompany Cowden’s Syndrome – or any other “it’s sticking around FOREVER” illness can leave you wiped out.

It’s hard to build relationships, friendships, or even a social group when you aren’t able to do so many of the things people take for granted every day. There are days you quite simply run out of “spoons.”

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

But, in life there are more times than not that we have choices. I try to model for my daughter, but so often she models for me. You can choose to sit alone. You can choose to let pain, fear, anxiety and frustration take hold. You can choose to be sad. You can choose to be mad. Or you can realize that life is hard. Everyone’s life is hard. Life is also full of blessings.

When you realize that this is your life, and you decide you’re going to make the best of it- that’s when you dig in. You climb up that mountain, one step at a time…

I admire many things about my daughter. She is not perfect – neither am I. But in her soul, there is a “Never Give Up” attitude that permeates all things. There is a constant quest for equity and justice, not just for her, but for all she interfaces with. There is a compassionate need to help others. There is a desire to be successful in spite of her circumstances – not because of them.

She always says she loves to swim because regardless – she has to meet the same time standards as everyone else. Somehow it makes each comeback a little sweeter.

No one else would likely know, or realize, or remember. But, we know.

First year on the high school team. The season starts right after school. She’ll be ready.

That’s why we will always remain