No Excuses. No Apologies.

Recently I asked that Meghan’s “Present Levels of Performance” on her IEP be updated.  She no longer receives many services, but I find great value in keeping this section current.

There is a great deal of misunderstanding involving Individualized Education Plans (or IEPs) and many people feel only children who struggle academically have an IEP.  This is just not true.

My daughter has had one in place since Kindergarten.  She has consistently maintained high honors, and as a matter of fact was Salutatorian of her 8th grade class, and is in an intensely challenging International Baccalaureate program at her high school.

IEPs by definition, are to “Individualize” the Education Program as needed.  Meghan’s needs are not academic, as much as they are residual connected to the Cowden’s Syndrome, the PTSD, and the medical trauma.  The resulting anxiety affects every area of life, and is far deeper than “teenage angst.”  We work extensively outside of school to address this in many ways, but sometimes we need the school to be on the same page.

Much like you give a medical history to a doctor when you see them for the first time, and you update as situations change, the IEP is to be fluid and updated as changes occur so all personnel will be aware of Meghan’s needs.

I make a habit on the first day of school of copying a few key pages of the document and giving it to her teachers.  Even though they have access, and technically it is their responsibility, I am also a teacher.  I get the pressures placed on us.  So, I make their lives easier by giving them what they need and an invitation to reach out to me with any questions.  Her teachers are historically receptive and appreciative.

This year I was reviewing that section on the document realizing how much was no longer accurate, and how it should be more detailed.

I sat with Meghan to write the summary below:

Meghan is a 15-year-old sophomore in the IB program at School.  Academically she is consistently above average in her classes, attaining high honors every marking period for the 2017-2018 school year.

She is a student athlete as well, participating on the School varsity swim team, as well as Trident Aquatics, a 12 month competitive swim program on the Island.

Meghan has several medical diagnoses.  The most far-reaching is “Cowden’s Syndrome” a mutation on the PTEN (tumor suppressor) Gene, causing benign and malignant tumors as well as vascular malformations.  Recently PTEN mutations have been correlated with low levels of (infection fighting) immunoglobulins, which Meghan also suffers with.

Because of the low immunoglobulin levels Meghan has frequent infections that often require antibiotics for resolution.  She suffers with gastrointestinal distress with each course, and needs to avoid gluten and soy.  She also has an allergy to dairy.

Meghan’s medical challenges are far-reaching.  She has had 18 surgeries, 8 of which have been on her right knee.  There was an arteriovenous malformation (AVM) in that knee.  While it has been controlled, the long-term effects will last forever.  Meghan has leg and foot discrepancies on her right side.  The blood was restricted from flowing to her right foot for so long, that it stopped growing 6 years ago.  The left foot is a full size larger than the right foot.  That right-sided weakness has been repeatedly treated in physical therapy, but still presents as a struggle with stairs, and long walks.  While she endures these activities, they can cause pain and excessive fatigue, and extra time may be necessary between classes located far apart.

Meghan had her thyroid removed in 2014 and the resulting need for synthetic medication has yet to be regulated.  Her current endocrinologist follows her 4 times a year, adjusting, tailoring, and trying to balance her levels.

Meghan had 2 D&C procedures during 7th grade.  Those procedures yielded precancerous tissue in her uterus and prompted the need for birth control pills to try to stop the cellular growth.  Those pills have also been difficult to regulate and balance.

Meghan has been hospitalized countless times in addition to her surgeries.  She has also undergone over 30 MRIs and close to 10CT scans, each requiring IV.  She spends countless hours being poked and prodded at doctors, monitoring her cancer risks.  She is acutely aware of her mortality at an age when most teens are barely aware of their social interests.

In the spring of 2017 Meghan was diagnosed with Post Traumatic Stress Disorder, secondary to extensive medical trauma.  She was also diagnosed with major depressive disorder.

In the fall of 2017 Meghan began to develop panic attacks.  Subsequently, she has also been treated for panic and generalized anxiety disorder.

She sees a social worker weekly and has guidance on her IEP in school.  She sees a psychiatrist monthly who manages the medication, which currently consists of and antidepressant and another script for panic attacks.

The panic attacks were well controlled for a time, but flare up in acute anxiety.  This summer saw several severe episodes.  We are working together to help her through all of this.

Meghan is waiting for a service dog, which should arrive in the next 4-6 months, to address the PTSD.  In the mean time, we are teaching strategies to deal with necessary stress, and tools to eliminate unnecessary stress.

I presented this document to the team to update the IEP.  I was a little startled when I was met first with a challenge on the diagnoses.  No problem I told them.  I would send the doctor’s notes.

I love her school, I do.  But, I was in fact also told “She doesn’t LOOK sick”  and “She doesn’t LOOK stressed.”  While I had to breathe a few times before responding, I came up with “You’re welcome…”

We’ve worked quite hard on all of that.  My girl has goals.  Life goals.

Last week Meghan was approached to remove the section regarding the D&Cs from the document above.  She declined.  She was pushed, and told the information was “far too personal.”

Forever practical, Meghan reminded them the document was about her, and should include factual information.

Again pressed, she reminded the staff she helped write the document they were holding.  She wanted and NEEDED her teachers to understand the validity behind her anxiety and PTSD symptoms.

The final time they told her the information was too personal she reminded them that she had done nothing wrong, and had nothing to be embarrassed about.  Meghan is a factual child.  She likes actual truth being reported.  She knows better than to be embarrassed about truth.  She knows ugly truth is a real part of life with Cowden’s Syndrome.  She also knows that secrets give power to things that don’t deserve it.

These things happened to her.

She did not ask for them.

She did not cause them.

She will not hide them.

She will not apologize for them.

She will not let them define her.

But the things that happen to us do change us.  HOW they change us is the only thing we can work to control.

I will continue to work the Mom end to get this updated.

I am beyond proud of her growing confidence, and her desire to educate.

I am proud of her desire to be a scholar and an athlete in spite of all the adversity.

I am proud of her respect for the clock as she grows as a swimmer, and her desire to be the same as everyone else, by beating the same clock.

My girl is, and shall remain

#beatingcowdens

And that is why we continue to work on the journey towards treatments and a cure.

Please consider joining us or making a contribution.  You can reach us at jfrg.pten@gmail.com

Double Edged Sword

I remember as a young girl, and even a teenager, having the phone pretty much attached to my ear all the time.  I remember being so excited when we got a cord long enough for me to bring the phone into my room.  I remember calling people, and being so frustrated at busy signals.  I don’t remember much of what I talked about for all those hours, but I liked it.

When I went to college, I went with an electronic typewriter with a 4 line display.  It was state of the art.  In my dorm there were computers in the common area and people were just beginning to really Email.  There were no cell phones.  We knocked on each other’s doors and spread word through friends when we were getting together.

It’s now been 23 years since I graduated from college.  I’m coming to understand the generations before me.  Perhaps some of the discontent with things changing was a foreboding sense of where it was leading.

I don’t go far without a cell phone in hand.  I “google” like it is my full-time job.  I’d rather text than call, and I am guilty of putting only the “perfect” images on my social media accounts.  I “keep in touch” through photos of friends children.  Some of these children are teenagers now.  Many of them I have never even met.

I wish “Happy Birthday” on Facebook after it reminds me, and rarely send a card.  I delude myself into feeling “in touch” when really we’ve lost all track of each other.

I’m watching a generation grow that thinks its acceptable to post all kinds of photos of themselves, inevitably trying to look older than they are, in a forum where nothing is truly private at all.

I’m not saying we had it all correct by any means.  I was guilty as the next of trying to impress “popular” kids, or to fit in.  There were mean kids.  There were those who isolated.  We passed notes.  But, we didn’t post our comings and goings for the world to see.  I was blissfully unaware of who went where, unless I was there.  If we took photos it was the real deal.  There were no filters.

The internet, and the social media craze that has followed is the proverbial “double-edged sword”.

Living with, and having a child with, a rare genetic disorder means I have to do most of our research here.  Most doctors lack the time, the knowledge, or the desire, to entertain my instincts.  I may not be a doctor, but I am an expert on Meghan.  I have been able to learn through trusted medical journals and intelligent internet connections, more than I would have ever been able to learn 25 or 30 years ago.

Meghan has had medical problems since day 1, and I have had the privilege of advocating for her since then.  I have “met” parents through online support groups, and have soaked up their advice like a dry sponge.  Parents go out of their way to help other parents, and it is a community like no other.  Without the internet I would have been traveling this journey largely alone.

There were multiple diagnoses before the PTEN Hamartoma Tumor Syndrome (Cowden’s Syndrome) diagnosis in 2011.  And, truth be told, I suspect there are still a few more coming our way.  During each step of the journey I have been able to connect with medical professionals and parents in ways that leave me forever grateful.

I am skilled at dealing with the insurance companies, the mail order pharmacy, and the collection agencies.  I am on-line so often, printing medical explanations of benefits, or fighting for treatment courses that I know are necessary.

I have become well versed in the laws surrounding Individualized Education Plans, (IEPs) and have secured necessary accommodations for an honor student battling PTSD largely from the fallout of a rare genetic disorder.

We fund raise for the PTEN Foundation, in hopes of one day soon allowing a patient powered registry that can lead us to treatment, and maybe even a cure.

All of this is possible through social media and the internet.

These are the same forums that allow people to think they are “in touch” without ever hearing each other speak.  These are the same forums that allow teens and adults alike to think it is ok to be insufferable or mean because they don’t have to look the other person in the eye while they do it.  It is these same forums that claim to bring us all together, that are causing what I fear is irreparable social damage.  A generation of children who aspire to impossible ideals and feel they are not good enough, are growing up.  They have the world at their fingertips.  Will they have the skills to access it through human interaction?

I don’t know what it is like to live anyone else’s life.  Maybe there are similarities, or maybe my views are odd.  I blog to give an honest account of life in this house, with these challenges, because I too have found comfort in knowing I am not alone.  At least theoretically.

I am always busy.  Sometimes I don’t choose it, and sometimes I choose it without realizing it.  I am so used to being in motion, not having a full agenda is confusing.  It is also very very rare.  My only speeds are “go” and “off”.

Chronic illness can easily run your life.  When every ounce of strength must be used to create the illusion of normalcy, there is not much time to be “normal”.  When you can not predict the health crises that exist daily, or the new ones that crop up at a moment’s notice, it is hard to make plans to do much.

We are a family of 3.  My child is an only child.  She has all the benefits, and all the downfalls of that status.  We have extended family.  I have friends.  Long time friends.  Old friends.   I know I could rely on them if it became time to wave the white flag.  But they are busy too.  And our time will come in a few short years when our children are off on their own.

My child does not have a built-in network.  My child has PTSD, and incredible anxiety.  She can sometimes have an abrasive personality.  But, she has more integrity and compassion in her than just about any other human I know.  You can’t pick any of that up off her Instagram. Or her SnapChat.  To really know her you’d have to talk to her.  The old-fashioned way.

That very network that has allowed me to learn so much, to do so much, and to help so much, has also caused harm.  For both of us.

For me, it represents the easy way out.  Aside from a few support groups, I know people will tire quickly of hearing the same story over and over. So, it is easy to click “like,” post a few comments, and have at least a visual in my head of what’s going on.  But, it also leaves me with feelings of inadequacy.  Why can’t I get us to the beach?  Why can’t I plan day trips with actual humans without fear of having to cancel?

For her, it is a constant reminder of a “normal” life that she doesn’t have.  Whether it’s pain, medical appointments, food allergies, or anxiety, there is an isolation inherent in this world of chronic illness.

She speaks of the “Sword of Damocles” with regularity.  The history channel gives this explanation History Channel- Sword of Damocles (Go ahead, and click the link. It’s a worthwhile read.)  This analogy explains a life hard to comprehend, and impossible to describe.

The internet probably saved us.  Social media brought me to some of the smartest parents, living variations of our life.

Social media altered the scope of human relations with consequences we will see for generations.

The irony of it all perhaps is that this message reaches you through the double-edged sword of the internet.

I’m interested in hearing your comments.

We remain

#beatingcowdens

With all it’s “side effects”

One day at a time…

Just Do Your Job

I guess as I think about the last few weeks, so often the thought comes to mind that if people would just do their job, thoroughly and with accuracy and pride, many problems could be avoided.

This weekend I compiled a 5 page letter, and a 20 page PDF and Emailed it to the CEO and director of operations of the local hospital that I feel could have done a far better job handling my February 21 vascular surgery.  It took a little time to get it out, and it was frustrating, but simultaneously cathartic.

Early in the healing process my sage daughter said, “Mom, you’d never let anyone treat my body like that.  Why is it OK to treat yours that way?”

It isn’t my dear.  And I know she’s always watching.

I took my notes all through the week before and after the surgery, and then I rested to see if I could get it out of my system.  It lingered.  So, yesterday, off it went.  I told them I’d like the name of who they handed my case off to, by the close of business on Friday 3/30.  There’s a post it on my desk.  To be continued.

Just Do Your Job.

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When I finished that letter, I wrote one to my health insurance carrier.  We are fortunate enough to have two, but keeping things straight can get confusing.

Meghan met a new neurologist in December of 2017.  When we went to the appointment there was no one to collect a co-pay.  I figured they would bill it.  Then, I forgot.  The news of the finding of a “lesion” was enough to jar me out of my normal routine.

Sometime in January I received an “Explanation of Benefits” and a $35 check from my insurance carrier.  This is not uncommon, as often I have co-pays refunded once an office receives the co-insurance payment.

A February MRI and neuro follow-up gave news of in fact TWO 1cm lesions, and some swelling.  All of which will need to be watched.  I got a bit distracted.

The check sat, with several other checks until March 8th, when I deposited them into an ATM.  That was a Thursday.  On March 11, I logged onto my online banking to see that the check had a “Stop Payment” and in addition to having the $35 deducted, I was charged a $12 fee.

Furious was an understatement, as I am meticulous about my banking.

Just Do Your Job.

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On Monday the 12th I received a letter from Chase Bank explaining their end of the explanation of my fees.  My insurance carrier told me that the doctor contacted them on February 15 to ask them to stop payment on the $35 as I had never paid the co-pay.

The doctor never billed me, just reached right to the insurance company.  They later admitted never billing me.  No apology.  The insurance company never reached out to me.  Never told me the check had been stopped.  I didn’t go to the bank with the check until 3 weeks later.

Within 72 hours my bank had notified me online and by mail.  My insurance company had no explanation as to why they never afforded me the same courtesy.  My bank actually DID their job.

When I took it to a supervisor over the $12 fee, and my embarrassment, and my annoyance at the number of hours this was taking from my life, she offered me the standard PO Box to send my complaint.

I asked her to do better and she told me to fax the receipt of deduction to her.  She said she’d expedite it.  It’s been 10 business days.  The formal complaint letter is written and mailed.

Just Do Your Job.

Then, there is the doctor who refuses to figure out mail order.  My insurance has denied payment of the drug until it goes to mail order.  Thank goodness it’s affordable.  I’m paying it while simultaneously working out getting him to mail order it.

Just Do Your Job.

job

Tomorrow, I will make a few calls on our newest denial.  I suspect it will take a few weeks to sort out, but I will win this appeal.  Because, no one in an office is going to tell my that my daughter has “recovered,… and no further improvement …. is expected.”  Nope.  Not working for me.

Apparently they weren’t  at the swim meet last weekend.  The meet that her PTSD might have kept her from without a hard push, but the meet where she DESTROYED all her best times.  At that meet I had proof that further improvement IS EXPECTED.  Because it is happening.

Just Do Your Job.

job4

That swim meet last weekend was 6 hard months in the making.  There has been so much work in place dealing with her PTSD, her anxiety and her panic attacks.  She had to make sacrifices and step away from her commitment to a local theater program.  I didn’t give her much choice, even though I knew I was probably taking one opportunity at theater from her to give her another at swimming.  Parenting is about making tough choices.  She’ll be at all the rest of the theater practices.  She had to KNOW she could get through this meet.

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This event is just exhausting. She has a love/hate battle with it. Sometimes she even catches the “2Fly Flu”

 

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The improvement from entry to finals just shows how much she needed to be there and get this out of her system. She’s got more progress in her.

 

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It’s been a goal to go under a minute for over a year. She crushed it.

When you are 24/7/365 fighting a chronic illness, and in this case a rare disease, no value can be placed on physical strength, actual and perceived.  You see there is never a moment when you are not waiting for the other shoe to drop, right on your head.  So the need to be physically strong, is a NEED, not a luxury.

I sit here now, Sunday evening again, and I think of all the things I would have liked to do this weekend.  I think longingly about how nice it would be, to be in Alabama at the PHTS Patient Symposium, and if not that, then to get a manicure, to catch up with old friends, or even to stop and read a book.  But, I know that is not meant to be.  Not right now.

For now, at this point  my life, weekends are about putting out the fires that creep into the world all week.  It is about uncovering the “in box” and fighting the fights that will get my daughter and myself the care we need and deserve.

I like to think it won’t always be this hard.  But, if I’m honest I suspect it will be.

The trick is going to come in my figuring out how to keep it from swallowing me up.  There is always going to be a fire, a battle, an appointment, or a medical drama.  ALWAYS.

This weekend, I had dinner with my husband.  I took a walk, AND I went to one store for fun.  It’s not much, but it’s a start.  It’s a process.

The battles rage on.

Vigilance is required.  This journey is not for the faint of heart.

But we are establishing support from afar.  We are finding each other.

As one of my groups says #WeAreCowdenStrong

And we, in this house, remain

#beatingcowdens

 

Non maleficence- Meghan’s monologue

Meghan recently had a drama assignment where she had to write a monologue on non-violence.  The teacher appreciated her perspective, and I think it speaks to the long term effects of rare disease, and chronic illness.

I’ve added nothing below…

“A physician’s guiding maximum is non maleficence. Non maleficence means ‘to do no harm.’ And, I guarantee you that screaming at an 8-year-old and burning her neck, all while sticking needles through it, qualifies as the opposite of non maleficence.

 

Then, I was a scared 8-year-old who just found out she had a rare genetic disorder. Now, I’m a 14-year-old with PTSD and a rare genetic disorder that has caused a lot of hell in my life and is never going away.

 

As I look back at this biopsy, I realize many things. One, I’m positive this first medical trauma led me to be fearful of all the medical challenges that have befallen me. Also, I realize that my deathly fear of needles and my PTSD originated on this day.

 

If this doctor had used a non-violent tactic during this procedure, which isn’t pleasant anyway, then maybe my journey would have gone a different route. Maybe I wouldn’t to this day walk into a doctor’s office, see needles, and have my heart jump into my throat.

 

People don’t realize that actions that may seem small to them can have a big effect on someone’s life. As I think back, I realize that if this one doctor had practiced non-violence, then my preconceived notions of pain and fear every time I walk into an examination room might not exist.”

#beatingcowdens

Sometimes GOOD Things Do Happen…

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

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

A Perfect Storm

 

Sitting, sopping wet, in the middle of the ocean, in your small row boat.  Your feet are wet.  Your fingers are wrinkled.  You are cold, exhausted, and often frightened.  There is no access to the weather channel.  Your connections to the real world have all but vanished.  You focus every ounce of your strength on keeping the boat afloat.

You try to maintain a sense of calm, but your insides are turning worse than after a serving of spoiled mayonnaise at a summer barbecue.

There are moments when you think.  Hope.  Pray.  That it will settle down.  There are moments when you dream of enough sunshine to shed your wet clothes and warm and dry yourself.  There are moments when you can almost see what appears to be a friendly ship in the distance.  And in those fleeting moments you even remember what it felt like to socialize, to chat, and to laugh – about every day life.

Your faith reminds you that Jesus is in the back of that boat.  You know better than to let your insecurities wake Him.  You know in your core that you are loved, and protected.  

And then another wave crashes over the side.  You can not put your hand on the oar.  You lock eyes with your husband in front of you – always with you.  You put a hand on your girl, sopping wet beside you.  You strengthen your resolve.  

I have been fading out of touch these last few months.

I love writing.  It is my therapy and my release.  It clears my mind and cleanses my soul.  Except there is a balancing act to be had -tenuously protecting privacy while fulfilling what we believe is our calling to share a raw, honest view of our lives “Beating Cowdens.”It is hard to realize breaks in time.  Things blend together so readily it is hard to discern where one event starts and another stops.  There is only rarely a pause between medical appointments, some for the same issues, some for new ones, and others for maintenance.  Some appointments are mine, and some belong to Meghan.  All but a few require hours and hours of travel.  It safe to say they cost us on average 5 hours a day.  But, those 5 hours are not of my choosing.  I can’t say, decide to get up at 5 – deal with the appointment and be ready to start the day at 10.  That’s just not how it works.  Most are scheduled somewhere between 10 and 3.  That means by the time we get home, there isn’t much time to do anything.  Or, we spend the day waiting to go – so there isn’t much to get done.  There are no summer day trips planned.  Making plans to catch up with friends is something we avoid – because we so often have to cancel.  The cycle continues.  There is just getting by.  And some dreams that maybe we can get to the beach one day this summer…

Somewhere early this year Meghan started to be done with it all.  This is not an easy place to be in by any means.  She is a month shy of 14, and this is her journey for the REST of her life.  Teenage years are nothing most of us would want to revisit.  The extra complications of finding your way amidst a chronic sense of isolation (the knee precludes too much walking, it prevents basic sports games most of the time, it leaves the competitor side-lined too much, the allergies mean the food has to be different, the pain is unusual and constant and managed in some “unorthodox” ways, the number of times she has to say “no” because she has an appointment, an ER visit, or something else medical is astounding and limits the invitations, ETC., ETC…) coupled with an understandably defensive posture, and a desire to just BE, can make for some lonely times.

 

Her sleep patterns went off the charts some time in February.  My sleeper just couldn’t fall asleep.  She’d lay still for hours.  Her pattern was restless and fitful.  I watched my girl pull away from her swimming.  I fought to push her.  Even after her best meet ever in March – I could no  longer get her up to a morning practice.

Meanwhile, I never made connections that are so clear now.  In January we were released from the Interventional Radiologist who had completed the 5 embolizations over 6 years on the AVM in her right knee.  He released us to the care of the orthopedist who had already performed an arthroscopic lateral release in 2015 to help shift her patella into place.  It had begun to slide as a result of residual damage from small amounts of lingering blood in the knee.  By early this year the warning signs had begun to develop that the knee was off.

A visit to the orthopedist in February confirmed what Meghan undoubtedly knew.  He offered her the chance to try to intervene conservatively and put a brace on to hold the patella in place.  Maybe it could “convince it” to move on its own…

She took it in stride, like always.  We bought leggings to accommodate the giant addition to her thin frame.  She dug in and pressed on.

While all this was going on the chronic congestion that had begun in November worsened.  The ENT noted swelling, but called it allergies, the obvious choice this season.  There was a nasal spray added, and a week of a decongestant.

Attendance in school started to be a struggle.  There was fatigue.  Low grade infections.  There was pain.  So much pain.

The chiropractor visits became more frequent.  The leg length discrepancy made more noticeable by the limping to accommodate the brace on the shifted knee cap.

My surgery in March helped nothing.  There was so much vocal rest required it tossed us all on edge more than normal.

Swim practice was lessening.  Focusing on school was a chore.  Sleep was becoming near impossible.

The breathing worsened.  We justified the “worst allergy season ever.”  Her voice started to feel the effects of this chronic congestion.

In April the inevitable was spoken.  The knee would need a repeat of the 2015 arthroscopic lateral release.  We wanted to schedule it immediately.  The first available day was her the opening night of her school play, a play she had earned the lead in.  The next opening was almost a month later on May 20th.  We would have to wait.

The pain increased.  The frustration increased.  The sleep, and subsequently the desire to swim decreased.

The “Coaches Award” at the swim dinner made her feel honored.  She respects her coach so much.  But, she couldn’t reignite the fire.

The surgery in May went well, even though I had worried with the increased congestion that they could not put her under anesthesia.  But, it was fine.  She went through the 2 hours like a seasoned veteran.  That made number 18.

Rehab was tough.  The pain was significant.  But, it faded gradually.  Our favorite PT began to work her magic.

She got around on crutches, figured it out and made it work.  Again.  Always.

She got off the crutches exactly in time for 8th grade prom.

 

She was healing.  Physically.

She made it back into the water.  She swam the 18th of June, and the 19th too.  She started to talk about it in a more positive way.  The 20th was awards night for 8th grade.

My 8th grader was named Salutatorian for a graduating class of almost 400.  She received several academic awards that night. I sat in the auditorium with the last few months, and years running through my mind.  People knew some, but no one, not even I knew ALL of what it took to be her, every day.  And here she was, not only doing it, but excelling at it.  It was a good night.

Until she came home, and put up her feet.  And there, on the side of her surgical leg was a 4cm x 6cm mass, with rapidly increasing swelling.  Breathing, we strategized.

We took the crutches back out.  I stayed up most of the night making sure there was no bleed on the knee.  I sent her to school the next day to get her cap and gown and yearbook “like everyone else.”

Then we headed to the surgeon.  His nurse practitioner sent us to the ER.  They could not get their acts together and after 7 hours discharged her on crutches with a script for an MRI.

 And an IV that went unused…

She was to be “minimal weight bearing as tolerated.”  They wanted her back at the doctor that Friday.  I finally spoke up and said no.  She was going to her graduation Friday – NOT tainted by a medical appointment.  We settled on Tuesday.

However, with no answer, she was to graduate on crutches.  So, a friend suggested if she had to use them, she should “own” them.  My husband spray painted them white.

Sunday we drove to Long Island for that MRI.  The one I knew they would not do locally.  30 miles.  2 hours and 15 minutes home.  We caught up with some friends that day.  Good thing.  We needed them so badly.

As she was in the MRI machine for her knee she told me something was “blocking” her nose inside her head.  If you’re a Cowden’s Mom – you just went to tumor as fast as I did.  My head spun.

Monday the ENT was able to ease that worry.  He told us it was a mass of infection.  That likely she had had a severe sinus infection for 8-10 weeks.  He anticipated 14-28 days on biaxin to get after it.  That was alongside a short course of oral prednisone.  He nose was so inflamed there was almost no air passing.

A sinus infection usually has me out of commission in about 3 days.  I just shake my head in awe sometimes.

Tuesday the 27th we trekked out to the surgeon again.  The MRI showed the mass to be a huge fluid filled pocket.  There is also fluid all through the knee joint.  He looked, and looked.  He has done many surgeries.  He is skilled.  He shook his head and finally told us he did not understand.  He had “never” seen this before.  And now we had to wait for her knee to tell us what to do next.

Cancel camp.  No Drama Camp she had loved so much.

Postpone PT indefinitely.

No swim practice yet.

And there we were – facing another summer…

But somehow, all of this seemed to weave together.  The perfect storm.  The knee, the sinuses, the sleeplessness, the fatigue, the low-grade illnesses, the sinus infection…

Somewhere through all this we spent a few visits with a brilliant doctor who diagnosed Post Traumatic Stress Disorder.  PTSD.  Like with the soldiers, or other trauma victims.  “Secondary to significant medical trauma” she said.

It all made sense, except the “post.”  There is nothing really “post” about this ongoing scenario.

That, and the Salutatorian thing.  As impressed as I am – I am still in awe.

The journey continues, and we will above all things remain…

#beatingcowdens