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…

Thinking outside the box

iep5

 

And so began the week that was.

A “simple” annual review – not so much.  But that’s OK.  Mamma Bear remained calm.  I am most strategic that way.

I am however exhausted, and facing another battle.

It was a bit of a struggle to keep the chin up this week, as I often felt like her:

frustration.jpg.scaled1000

But, I didn’t act like her.  Not even once.  (Well once I cried – but I got yanked past it.) And that’s about all of that story I can share here, for now.

But these last few weeks  months, have left me with a lot of questions.

See, there is this constant battle to do what is right, or what I perceive to be right, as I advocate for Meghan, and for my family.  But inevitably, because I am so introspective – I am left with a ton of questions at every fork in the road.

questions

 

Last week when we took her to 4 doctors and an ER about her shoulder, I ended up being told I went to the wrong ER – that we didn’t belong there.  But it is a cancer center, she is already a thyroid patient there, and my child grows things.  While we are blessed that none have been cancer yet – I am not of the “wait and see mentality.”  But, still I paused and wondered if I had done something wrong.

In the end, the rheumatologist gave her a muscle relaxant.  We began rehabilitative PT and I am seeing progress.  The shoulder and neck remain wickedly sensitive – but she has back almost full range of motion.

Still we watch the lump behind her shoulder blade, in hopes it continues to decrease in size and doesn’t turn out to be the “soft tissue tumor” we were advised to look out for.

what if

Really – no one has even a bit of a clue.  And it is often just downright exhausting.

Physical Therapy this week was refreshing.  At least I deal with professionals who have made themselves aware of Meghan’s needs and focus with a goal of eliminating, or severely managing, her pain.  Thank God we found them.

Because of them, Meghan will swim in her meet tomorrow.  No freestyle – it hurts the neck.  But that was OK with her.

i love backstroke

Backstroke seems by far to be her favorite. I love watching her swim.  She seems so at peace.

It gives me a time to break from all the questions.  The wondering.  The worry.

It is easy to doubt yourself sometimes when so many things are changing at once.  Whether you are precipitating the change, or reacting to it out of necessity, when there is so much at once I think it is normal to wonder.

We are not super difficult to get along with.  Yet we go through doctors like a toddler goes through shoes.  We have very few close friends – confidants to be trusted.  Those who will be honest and open minded.  We spend a lot of time alone.  We get along really well – thank goodness.

I think what we look for is doctors, friends, associates, people who can practice:

Thinking_Outside_The_Box_by_mclelun

 

I just wish there were more.  No one really fits in a box.  And that’s not just us, and our “rare disease.”  Everyone is unique, and special.  Everyone needs to be looked at with a fresh pair of eyes.  Everyone needs to be viewed through the perspective of the other person.  Only when we start to look at things through someone else’s point of view do we solve anything.

It is the outside the box thinkers that solve IEP problems, medical problems, friendship concerns, desires to make the world better…

Daring to think outside the box is risky.  It is hard.  It is necessary.

Especially in this season of “test prep” where I have seen this scenario one too many times…

test prep

 

Mine, yours, all of them – they are individuals.  They have specific needs.  We should never be discouraged when advocating for them and their needs.

In many cases – we are their only voice.  We MUST think outside the box for them.

 

Mamma Bear

Tomorrow is Meghan’s annual review for her IEP meeting.

I will not go down that easy!
I will not go down that easy!

It should have been an easy meeting.  Continuation of PT and the paraprofessional until her triennial next year.

The Cowden’s Syndrome clearly warrants PT.  We already have 2 sessions a week outside, and THEY want her to receive additional services inside the school.

She hurts, (by her own words)

https://beatingcowdens.com/2013/03/03/moving-backwards/  (This is a link to a speech she gave in school)

all the time.  Some days she is just able to make the best of it.

Last week we lost 2 days of school (and work.)  We  saw 5 doctors, including an ER in those 2 days because of severe pain and virtual immobility in the left shoulder.  No obvious trauma.  Just the life of a 9 year old with Cowden’s Syndrome.

Cowden’s Syndrome can often be accompanied by hypermobile joints, making injury during daily activities much easier.

Cowden’s Syndrome is also a condition of over exaggeration by every body part.  The smallest injury warrants a full, and sometimes incapacitating inflammatory reaction.

We manage a lot of things with Celebrex.  But it is not a miracle drug.

We can not keep her in a bubble.  She is 9 and wants to run and play.

But, that doesn’t mean her PT needs “don’t affect school function.”  They do affect it – in so many ways.

So that is my job tomorrow.  To get my point across.  To speak for my girl.

Mamma bear is almost ready…

mama bear

To protect baby bear…  She WILL get what she NEEDS!

Mama and baby bear