Invisible Illness – Sometimes We ALL Need Help

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

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…

“…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

#beatingcowdens

 

“…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

This video is worth your time…

 

Danny Gokey – The Comeback 
After a season of nightfalls and pushbacks
After the heartache of wrong turns and sidetracks
Just when they think they’ve got you game, set, match
Here comes the comeback
Just cause you laid low, got up slow, unsteady
Don’t mean you blacked out or bought out you’re ready
Just when they think there’s nothing left running on empty
Here comes the comeback
(chorus)
This is your time, your moment 
The fire, the fight, you’re golden
You’ve come so far keep going
Here comes the comeback, comeback
You feel the lightning, the thunder, your soul shakes
Under the roar of the heaven, the tide breaks
And from the ashes you will take your place
Here comes the comeback
(chorus)
This is your time, your moment 
The fire, the fight, you’re golden
You’ve come so far keep going
Here comes the comeback, comeback
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
Just when they think they’ve got you game, set, match
Here comes the comeback
(chorus)
This is your time, your moment 
The fire, the fight, you’re golden
You’ve come so far keep going
Here comes the comeback, comeback

“… Turn on the Light!” -Albus Dumbledore (J.K. Rowling)

Last week my daughter pulled on a shirt before we headed out to the doctor for the umpteenth time this summer.  I didn’t think much of it at first.  I was grateful she was dressed and pulled together, and ready without event.  As a matter of fact, I was in full on grown up mode, rushing her almost 5’8″ frame and her crutches along to get us prepared for the obligatory ridiculous traffic as we traveled what seems to be the longest 30 miles ever.

I don’t think I even read the shirt until we were in the waiting room a few hours later.

I had read the Harry Potter series as each book came out – beginning as a 5th grade teacher more than 20 years ago.  My daughter enjoyed the series in its entirety in a brief period during her year in second grade.  I enjoyed the books, each one, but it took a reread or two to analyze things on a deeper level for me.  Dumbledore, the wise guide had an infinite amount of wisdom to offer.

Whether she realized it or not, my girl was sending a message that morning – to both of us.  There is an ongoing battle, here, and I suspect in many lives, to live the days as they come.  We try to “get out of our own way” and “our own head” as the case may be.  And it is not easy.  When we look further ahead than the day, sometimes even the hour, or moment, it is easy to get swallowed up.  The darkness comes hard and fast.  Too many appointments, too much worry, too many “what ifs,”  too much time wasted, too many plans unfulfilled.  No one likes the dark.

So don’t stay there.  Turn on the light.

Thank you J.K. Rowling, for giving us Albus Dumbledore.

That appointment Tuesday, it wasn’t great.  There are still no real answers.  There is swelling on the knee.  There is pain.  There was confusion from the surgeon.  He decided we had rested the knee.  Now, it was time to add two medications to treat the knee, a neoprene sleeve for swim, and PT back in the equation.  For 2 weeks we will move it and see if that helps.  Nothing more than educated guesswork.

I hate it when we have to guess.  But, I am grateful for a surgeon willing to logically troubleshoot.  We visit him again in 2 weeks.  He is confused, but he is smart.  And he will not quit.

So with a surgeon who made the choice to keep working on it – my girl did the same.  Every day we have choices to make… all day… every day.  Those choices shape and mold us.

My daughter was to be part of a beloved theater group these first two weeks of July.  Some of the most compassionate, talented and caring young people are in that group, guided by adults that are not afraid to give everything they have for the betterment of the children in their charge.  Last year, she had arguably one of the best experiences of her life, and when the word came that she could not participate, that the knee was not prepared for that amount of standing – she was crushed.  But, being who they are, the staff, and the students alike not only allowed her, but welcomed her to be with them during rehearsals.  As we watched two amazing performances of “Aladdin Jr.” on Friday night, I know she wished to be on the stage, but the pure joy of excitement for the success of these children – her peers- was evident.

She could have sat home and sulked.  They could have said she could not come.  Instead, the best possible outcome came from unfortunate circumstances.  Another major life lesson.  Executed flawlessly.

My daughter has dreams.  Big dreams.  She aspires to be a better human, and to assist those who struggle.  She wants to learn her voice, and sing to the best of her ability.  She desires to perform, on stage, often.  She seeks venues for community outreach and has goals to raise awareness and funds to cure PTEN Mutations like our Cowden’s Syndrome, and other rare diseases.  She strives to be an athlete.  The same thrill of competition that creates great anxiety, lights a fire deep in her soul.  She also has hopes, standards, and expectations for herself.  She actually, most days, can do a lot of the parenting work without me.  But, sometimes when those dreams and goals are forced to pause, and rest for whatever issue is going after the body at that time, its nice to remember the words of Dumbledore, “It does not do to dwell on dreams and forget to live.  Remember that.”


Exact, precise language.  That is how my girl likes it.  We sometimes kid that she will be an attorney.  At the very least, an advocate for herself, and maybe others.  There is little gray area with Meghan.  She likes people who are kind.  She does not like people who are not.  End of story.

Or is it?  In this age of adolescence there are times when lines are clear, and times when they are blurry.  Emotions run high.  There are times when things are said, and done that are deliberate, and mean and awful, and other times where things FEEL deliberate and mean and awful where that was not the intention.

That changes things for the speaker, but rarely for the recipient.  With intent being often left to the interpretation of the recipient,  words can cut more sharply than a sword, and pierce the soul and the spirit.  Words hold great power.

The absence of words, those kind sentiments, thought, but never spoken, can injure as well.

My girl is far from perfect.  I myself am far from perfect.  We have many conversations between ourselves about the power of words.  Sometimes we hurt each other’s feelings.  Usually we talk it through.  Our relationship invariably gets stronger.

That’s because we speak.  And we hear.  So many times when words have hurt, a conversation could clarify so much.  An honest reflection that not a single one of us is perfect in our speech or actions is invaluable for growth.  Friendships grow, not over text messages through an iPhone screen, or photo exchanges… friendships grow when we take the time to talk, and laugh, and listen and hear and care.

And, perhaps many times, when you are lonely or simply alone, those are the times words, or their absence, can hold the greatest power.

Nature vs. Nurture.

An especially complex conversation in light of genetic discoveries happening every day.

In this house my daughter, although she first learned of it as she turned 8, was born with Cowden’s Syndrome- a PTEN Mutation leading to a high incidence of benign and malignant tumor growth.  She was born with this condition, because I was born with this condition.  That statistics and numbers are real.  They are hard core.  They are disturbing.

A 2012 article about PTEN related cancer risks.

However, because we are BORN with this Syndrome, it does not mean we will develop every possible manifestation.  We have AVMs and thyroid issues, and lipomas, but of yet, no colon issues at all.  I had breast cancer, early stage.  So did my mom who is not a PTEN patient.  We have large head size, but not autism.  You get the idea.

I believe we are born with certain things.  I believe that Meghan and I were born with Cowden’s Syndrome, and I even have theories about its origin.

I also believe that EVERYONE has something.  We are either born with it, or it develops.  Whether it is a physical ailment, or an unfortunate circumstance, there are forces affecting each of us.

Life is not smooth.  But within life there are choices.  Every day there are choices.

Choose kindness.

Choose compassion.

Choose love.

Choose forgiveness.

Choose happiness.

Choose to find your “Never Give UP.”

Choose to trust.

Choose to take risks.

Choose to care.

Choose to push yourself.

Choose to believe you can.

Knowing, that sometimes those choices will hurt.  Sometimes they will leave you angry or even furious.

Know in your heart that those are the only choices.

As you “grow to be…” it is those choices that will help you navigate the path to be the very best version of yourself.

Some people go their whole lives and never meet their hero.  I gave birth to mine, and her stamina and drive continue to inspire me daily.

#beatingcowdens

Deep Cleanse

I had a list of things to accomplish while I recover from my vocal cord surgery on 3/3.  I have been unable to work, preserving my voice for exercises given by my therapist, and brief conversation.  But, aside from the inconvenience of not speaking, I have felt pretty well.

That left me with a little time to get a few things done.

I could not push it physically, but I sorted papers, shredded, sent Emails that were overdue, and generally handled things that had fallen by the wayside during the busy nature of life.

I discovered, much to my disappointment, that my attention span for reading has decreased exponentially since spending so much time at a computer screen these last few years.  I vowed to get to work on that.

I also discovered that I have an account on the family’s “Netflix”  and I learned how to sit still long enough to binge watch some “Law and Order.”

There was time over these three weeks for some honest self-reflection as well.

Sometimes it’s painful to put truth right in front of our own faces, but I had the time to do the work, so I went for it.  I already wrote about isolation,  and I had some time to think more deeply about what role my own actions play in that.  I was able to reconcile that some of it is unavoidable, and some can be mended by me.  Balance.  I’m on it.

I also took a hard look at my own emotions and how they affect my house.

It is so easy to get “stuck” in the role of caregiver.  It is so easy to live a task oriented existence, making sure things get done, and arranging the logistics of life.  We may only have one child, but you add into the equation, two of us with a genetic disorder that involves countless appointments, surgeries, therapy and follow-ups things get dicey quickly. Add in that every appointment in NYC is a MINIMUM of 4 hours, and sometimes 6 or more, and the billing that comes with these appointments is at least a part-time job on its own, well, your head can spin.  Then, you think about the issues that surround friends and family, illness, disease, financial hardship, emotional distress, and your heart can hurt.  When you join that with “regular” stuff, like 2 working parents, a scholar, athlete, theater buff kid, food sensitivities, prescription medication, and anxiety all around – well, it can easily become all-consuming.  And it did.

I sat in my office one day, looked around and realized I was unhappy.  That was a tough realization.

I am not unhappy with my husband, or my daughter, or the countless blessings in our life.  I just became so consumed with getting things done that I forgot myself.  Literally.

Sometimes its good to reflect.  It’s the only way to get things done.

Last week my sister sent me a box of essential oils.  I was skeptical.  I bought a diffuser.  I feel like peppermint in the air while I work is good for my soul.  So is trying something new.

Tuesday I went to Kohl’s. A quiet activity easily done alone.  I felt the tension start to release.  I picked up a few things for me and for the house.  I went out because I WANTED to.

Something amazing happened Tuesday.  My husband and my daughter both remarked that I looked happy.  I had a story to relay at dinner that was about me.  The mood in the house was lighter.

Wednesday I took a nap in the middle of the day.  Because I could.  Again, I found myself with a little less pressure in my shoulders.

That night I promised myself and my family, no matter how busy things got I would find a way to spend 15-30 minutes every day on SOMETHING I could say truly made ME happy.

I’m a work in progress.

I chose to do a deep cleanse on Thursday and Friday.  I was working on my mind, but I had to bring my body along.  It had been too long.  I had gotten a little lazy in my habits and in my routines.  I have this incredible nutritional system at my fingertips and in my home, and sometimes I forget to use it to its full potential.

I woke up this morning having released 5.1 pounds of junk.  I started the day with a protein shake full of strawberries.  I shopped with my girl this morning.  Then, I got to listen to her singing lesson.  Now, they watch a movie while I get to write.  Then, my little family is off to dinner together.

This week the spring plants that sprouted on 3/3 started to really grow.

The caterpillars that came in on 3/2 have all become butterflies today.

Maybe we all used the same period to try to transform a little.  Nothing like a few new butterflies to remind you about new beginnings.

I am focused on this journey now.  I may falter along the way, but I will hold true.  This feels right.  This feels good.  And when I feel right and good, it is much easier to remain

#beatingcowdens

Richmond County Savings Foundation

If you were with us at “Jeans for Rare Genes” you heard me announce we had received a grant for $2500 from the Richmond County Savings Foundation.

This story Inspirational Staten Islander to host Fund Raiser ran on February 4th.  On February 8th I was contacted by the Richmond County Savings Foundation.  The story had been read, and it was suggested we apply for a grant on behalf of the PTEN Foundation.

We are relatively new to the fundraising thing, but with a lot of help, we got on track and completed the application.  The PTEN Foundation President, Kristen, spoke with them to get the 501c3 papers squared away.   And – about 10 days later we were notified of a $2500 grant, awarded to the PTEN Foundation!

We included the grant money in all our fundraising totals for the event, but today we got to go to the office to receive the check.  We got to meet Mr. Cesar Claro, who noticed Meghan’s story.  We got to meet Ms. DeSapio who helped us so much via phone and Email.

Meghan took the day off from school, because my speaking time is so limited, and because she’s the reason all this happens anyway.  It was just right for her to be there.

We gathered in a conference room with about 10 incredibly inspirational people.  I loved how professional, yet casual the whole experience was.  Amounts of grants were not discussed.  Checks were distributed in sealed envelopes, but first , everyone spoke about why they were there and how the grant was going to help.

Meghan spoke a little about Cowden’s Syndrome, and how we are hoping the PTEN Foundation will be able to inspire research on our disorder.  She did great, as usual.

We got to hear from a teacher, and his school’s work with Habitat for Humanity.  We heard from “Metropolitan Fire” and how the grant would help their organization.

We got to meet Dennis McKeon From Where To Turn, and hear about the work his organization does on Staten Island.

We heard about the Moravian Church garden and their donations of food.

We met E. Randolph Wheagar from 2nd Chance Youth Empowerment Program, and we were inspired by their community work as well.

We met Jennifer Dudley from Staten Island Children’s Museum and learned about their efforts to “spruce up” the museum.

We met a few other incredible folks as well, one whose organization was obtaining deeds to local neglected cemeteries so they could be maintained.  In the absence of pen and paper a few are slipping my mind, but it was a fantastic experience.  It was an intense 45 minutes!

Perhaps the one that touched our hearts most was Mr. Capolongo who spoke of his son Michael with Duchenne Muscular Dystrophy.  If you are not familiar with the genetic disorder, you can get some information here. Duchenne Muscular Dystrophy  It is a genetic disorder affecting about 1 in 3,500 boys.  The body lack dystrophin, and without it muscle cells become damaged and weaken.  It is progressive.  Michael is 11.  They have 2 other healthy children.  They are a family like ours.  Dad is a policeman, mom is a nurse and a breast cancer survivor. Yet, they have managed to create a not for profit, Michael’s Cause and have raised a million dollars to help fund research, and hopefully, ultimately a cure.

In the 30 minutes we sat across a table I felt inspired, and connected.  I respect so much the positive outlook, and the awareness that even in strife, others have it worse.  I respected the acknowledgement that every day is a gift, and life can change your perspective quickly.  These are things we identify with in this house.  Those are principles we live by.

Meghan and I often feel a little more “at home” in the presence of others with rare disease.  While they are all so drastically different, the difficulty, the fear, the unknown, the isolation, they all overlap.  And what also overlaps are your decisions in how to handle them.

I was reminded of my own girl, at the age of nine telling NY1 that. “You have a choice, you can get angry or you can DO something.”  And, “I feel like I was put here to DO something.”  Watch this clip and reminisce with me.

Today we were full of gratitude.  Today we were inspired by others.  Today we were reminded of our own mission.  Today was a continuation of an ongoing goal,  and a reminder that it matters.  It all matters.

We remain

#beatingcowdens

Rare, Invisible, Real – Jeans for Rare Genes 3

We were worried.  Attendance was at an all-time low.  We had picked a bad weekend, but it was too late to change it.

We took the event off “eventbrite” this year, looking to take the fees they collect and get them to the PTEN Foundation.

It took a whole lot of record keeping, but it was worth it.

We had an “Early Bird Special” and free T-shirts.  We opted for a new venue, a deluxe buffet brunch, and beer, wine and sangria for the grown ups.

After months of planning, of soliciting donations, of advertising, Emailing, and distributing flyers, we had exhausted every avenue we knew.

We received so many generous donations that were accompanied by, “I wish I could, but..”

We received so many well-wishes and positive thoughts from genuine people.

But, in the end we were looking at attendance numbers far lower than last year.

We had excellent baskets – Some were gathered by friends and family. Others were given as donations, and many were put together by my loving husband.

Meghan and I wrote out and carefully planned what we wanted to say.

She opted this year to stray from her pattern of creating videos, and she created a Power Point of the year in review instead.

But, as late as that morning the text and phone calls kept coming from people who could not make it.

We walked into the room anxious.  Not sure of how the day would go.

We should not have worried.

What this crowd may have lacked in volume they more than made up for in LOVE, SUPPORT, GENEROSITY, and COMPASSION.

They were from all areas of our lives.  There were family.  There were lots of cousins.  There were friends.  There were colleagues.  There was Meghan’s Physical Therapist, her math teacher, and her former paraprofessional.  There were friends of friends.  There was Charlie Balloons, and a DJ whose services had been paid by some dear friends as a donation.

There were 42 raffle baskets, and a 50/50.  The money generated just from those two things was mind-blowing.

There were 2 schools, PS1 with cousin Kim, and Holy Rosary with our friend Christal, that each raised over $400 at their schools for the cause.

We laughed.  We drank.  We ate.  We talked.  Kids danced with balloon creations.  There were musical chairs and fun.  There was pure love in the room.

When Meghan and I spoke there was silence.  Attention.  Focus.

Cowden’s Syndrome is understood by this crowd, because of us.

And there stood my daughter, telling this crowd of 100+ that she was tired of “Living with Cowden’s Syndrome.”  She “put Cowden’s Syndrome on notice.”  She told it, it was time to “keep up with her.”  She’s got things to do.  Places to go.  People to see.  She’s growing up right before my eyes.

Not long ago she was a scared and confused 8 year old.  Now she is a wise, and mature beyond her years, 13-year-old young woman.  She wants the PTEN Foundation to flourish.  She wants research, a patient database, and even a cure.  She’s 13.  There is time to get it right for her, and all the young ones being diagnosed after her.  She has drive and ambition.

She chose a song to end her speech.  She chose “Let it Go” from Frozen.  She toyed around with a few songs, but this is the one that spoke to her, at this moment.  This one got to her heart.  And you could tell, as she belted it out acapella.


In the end, as people with full bellies, and big smiles, hugged us goodbye, they spoke of “next year.”  They said this one was “the best yet.” We felt loved and full of gratitude.

And as we sorted through the finances, we were struck with something amazing.  Jeans for Rare Genes 3 would be making a cumulative donation of just over $12,000 to the PTEN Foundation.  This love, this event, these people, the generosity of so many, had generated an amazing amount.

Our hearts are full of gratitude.

A donation of over $12,000 to the PTEN Foundation.  Because of you.

Thank you for valuing a cause that matters so much to my family.  Thank you for loving us.  Thank you for supporting us from near and far.  Thank you for your never-ending generosity.  Thank you for your prayers and good wishes.

Because of you we remain #beatingcowdens!

Thank you!

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