August 9, 2016

Dear Meghan,

As I sit to write this some time in the middle of the night, I am reminded of the early years, when so many of the middle of the night hours belonged to the two of us.  Yes, Meg, I said YEARS.

You struggled my girl, but your determination was evident early, like the day the NICU nurse called you feisty.  She was right.  And it has proven to be one of your finest and most valuable attributes.

When I look back on pictures of those early years, it doesn’t seem all that bad.  I guess I never had time or desire to photograph some of those tear-stained days.  And maybe. if it wasn’t for the colicky cry seared into my brain, I might have even come to forget that you considered sleep optional, crying and screaming mandatory, and that carrier pouch a requirement for all things.  At one point we had even taken to calling you a kangaroo baby…

But, I look at the babies in those pouches,  And I think to those mother’s “enjoy it.”  You might find this hard to believe my dear, but there is not a single minute I would change or do over.  Every step along this journey with you has BEEN the journey.  And I have the deepest gratitude that God selected me to be your mother.

The path hasn’t been easy.  Sometimes it’s been rocky, and a little unsettled.  Other times its been like traveling through fire. On a bicycle.  With no handlebars.  Backwards. But, I think we’ve all found pieces of ourselves we never knew existed, and there is a family bond between you, and me and Daddy that so many envy.  Not for what we’ve done or where we’ve been, but rather the fact that we have done, and continue to do it all together.

At eight years old, you were tossed a diagnosis of a Rare Disorder, a 1 in 200,000 PTEN Mutation called Cowden’s Syndrome, that has leveled many grown adults.  But, by eight years old, you were already seasoned at doctors, OT, PT, and speech.  You’d been there, and were still doing dome of that.  At 8 you were intimately aware of what it meant to spend hours waiting for doctors, and you had a clearer visual of an operating room than anyone should ever have.  So really, in reality, that diagnosis just pushed us in the right direction to continue to help you become who you were meant to be.

It’s rotten to be the “unusual one”  the one with all the risks and the need for that “hyper-vigilant” surveillance.  But, I’m thankful.

See without Dr. Jill to push us to your diagnosis, without all those things falling into place, it’s likely I wouldn’t be here to write this. Your diagnosis led to mine,  and while I am intimately connected with the reality there is no guarantee of tomorrow on this earth for any of us, my heart is sure that you, my angel, my gift, you my dear saved my life.

I watch you with each passing year, and the challenges pile on top of themselves.   And we both sometimes want to stop the presses and scream, “IT’S NOT FAIR” and the top of our lungs.  but then we laugh.  “Fair” is just a silly word anyway.   It’s not the perspective we use.  It’s not worth our time.

You approach this birthday with 17 operating room trips under your belt, and too may ER visits and, tests, and hospitalizations to count. You have had to make decisions, and think thoughts that are beyond the scope of what you should contend with.  But with grace and dignity you proceed, because none of that is what defines who you are.

 

Despite unimaginable pain, you press on.  Your body would not allow for dancing school or soccer.  But the competitor in you was not to be silenced.  Running was out of the question, so now you “fly,” in the water, 11 months a year 4-5 days a week for hours.  You pull energy out of the crevices of your toes to push through when most would curl up and give up.

You press on in the community, focused to raise the necessary founds the PTEN foundation will need to create our patient database.  But, you will not turn your back on the charity where you began, Global Genes, “for the babies who can’t speak for themselves,” you tell me.  You make flyers, select venues, advertise and collect raffles.   You speak at schools and organizations across the Island who will have you, to raise awareness that rare diseases are everywhere.  For the last 2 Februaries we have celebrated Rare Disease Day with almost 200 people, gathered because you have a mission.

Youngest “Woman of Distinction” recognized in Albany by Senator Lanza in May.  Proudest parents.

I watch you talk to people and I swell with pride.  When you’re intermittently stuck in that wheelchair you hate, you decided to help the doubters, the starers and those passing judgment.  A simple business card with a phrase you helped create “Cowden’s Syndrome – Rare. Invisible. Real.”  It starts a conversation, or it ends the behavior.  Either way you manage with grace to rise above.

You take the high road so many times a day.  I know it’s not easy.  And I know there are people in your path every minute determined not to make it easy.  But, truth be told, as we are learning, there are others out there.  There are real people, at swimming, at youth group, at SICTA.  There are real people who are finally recognizing that you are pretty spectacular. And I don’t mean that in a ‘who is better than who’ way.  I mean it in it’s best sense.  Everyone is spectacular in some way.  You just learned it a little early.

As you turn 13 this week, I wish you so many things, from the depths of my heart and soul;

*Never lose the magic.  Ever.

*Never compromise yourself for anyone.  Remember that doesn’t mean to be brick wall stubborn.  It means to keep those morals.  Rise above.

*Always remember no matter how wild and crazy the world gets, you’ve got two parents who will love you regardless… and that is a PROMISE.

*Smile, sing, laugh, act, dance, be sarcastic, and sensitive, and guarded and silly, with a healthy touch of humor thrown in.  Do it all always with respect.

*Continue to constantly take every obstacle tossed at you, and it toss it back, or walk past it and move on. When they tell you you can’t, find a way to show them you can.

*Never let anyone make you feel less than.  You, you are enough.  You are always enough.  God said so, and He is smarter.  Trust.

*”Be the change you wish to see in the word.” – Ghandi

Your teenage years will be a giant path of self-discovery.  It won’t always be smooth.  But nothing is.

Be you, and it will fall into place.  And in the off chance that none of that works, I’m not going anywhere.

I love you from the bottom of my heart.  You truly are the child I was meant to have, and there is NO ONE I’d rather be #beatingcowdens with, than YOU!

Happy 13th Birthday!  You will always remain, “My Most Thankful Thing!”

I love you ALWAYS,

Mom