The Best You Can…

Friday we met a good doctor.  A new endocrinologist.  He is young.  He is friendly.  He is smart.  He is ready to be a doctor to Meghan.  I am grateful.

Friday Mom got her second cataract done and checked before the storm.  So necessary for more than visual acuity.  It just needed to be done.  I am thankful.

I was about to say today was one of those days where you have to focus on your perspective, and it will define your outcome.  But, really that’s every day, isn’t it?

We woke up under about 30 inches of snow here in NYC.  Now the thing about living in NYC is that you have to learn, as the Marines say, to “Improvise, Adapt, and Overcome.”  Because nothing really stops.  At least not for long.

improvise adapt overcome

Yesterday there were travel bans.  Yesterday we were to stay off the roads.  Today we are told that the City’s 1 million school children will report to school tomorrow, and with them, their thousands of teachers and support staff will report as well.

In many boroughs this is not such a big deal.  Public transportation is at the ready.  Moving around is easy.

Not the case here on Staten Island.  Almost everyone travels by car.

Yesterday Felix tried to keep on top of the snow.  It was fruitless.

Last night an ambulance got stuck in front of my house.  My husband and a neighbor dug them back to a main road.  We said a prayer for the person they were headed to, and continued on our night.


This morning, we woke early got the shovels and the snowblower.  He started at one end, and I at the other.  But in the front of the house I was met by my neighbors.  We groaned a bit, and pleasant conversation ensued as we gave each other a hand.

At one point the conversation turned to Meghan’s footwear.  Somehow.  And as I explained that she has 2 different sized feet, and we buy 2 different shoes and toss the opposites, she seemed stunned.  And I said soon after we toss the opposites we sit for a moment in gratitude for 2 working feet, and a financial situation that allows us to pay our credit card bills.  She smiled.  She gets it.  She’s had life struggles of her own.

We got the cars free.  We set ourselves up to hope for the best for tomorrow.

Then Felix headed with Ken to shovel out my grandparents.

Grandma, when memory came easier to her, used to sing, ” Count your many blessings, count them one by one…”

Grandma is 95 and Pop is 96.  Life is more challenging for them than it ever was before.  Yet there are so many blessings.  They have neighbors that help clear pathways when we can’t get to them.  They have a tenant who is a friend, who looks in on them and keeps us posted.  They are really special, and we are grateful for the kindness of those they interface with daily.

When he got home, my husband stole a quick meal and headed out to make an igloo and a snowman with Meghan, after a romp in the snow with the dogs.  He is a good husband, and a good Dad.  A really good man.
   
Some time this afternoon my phone rang.  It was an internet friend looking for some reassurance.  I think I was able to give it.  Keep your heart and mind focused.  Stay physically, mentally, and spiritually healthy.  Do the best you can with what you have, where you are.  Always.

Tomorrow Meghan will see the knee surgeon.  Time to follow-up on a less than stellar MRI/MRA experience the week before last.  Time to check on the status of the AVM.  Holding my breath that it’s behaving.  Tomorrow I will hope all the main roads from here to NYC are plowed well, and I will gratefully pay to park in an overpriced lot.  Perspective.

We are actively engaged in “Jeans for Rare Genes 2,”  working on everything from ticket sales to journal ads to raffles.  My Meghan is ready to channel this week’s pain into a focused goal.  Meghan wants the PTEN foundation to have the money they need to create a patient database.  Vision.

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Every day we are given a choice.  Many choices.  Life is not all peaches and cream.  Not for any of us.  Some days I struggle.  Most days I know which side of the bus the sit on.

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Here’s to hoping for an easy safe parking spot at work tomorrow, a mind eased from the worry of loved ones, and a smooth trip to NYC.

 

Local Newspaper Coverage

This is already all over for my local friends, but for anyone else who is interested, this article was written for our local newspaper. It will publish in print Monday, but is in the online paper today. Click the link below.

http://blog.silive.com/gracelyns_chronicles/2016/01/post_23.html#incart_river_mobile_home

 

JFRGflyer7

Unsung Hero

There is a hero in this war on Cowden’s Syndrome, this draining task of “beatingcowdens” that we undertake each day.  He doesn’t get much attention, and he prefers it that way.  Yet, I shudder to think where we would be in this war without our strongest soldier.

He never could have known almost 16 years ago what he was getting himself into.  Yet, somehow every day I feel the strength and power of his love.

Lori & Felix Wedding

We stood in front of God, and our family and friends on that chilly April day in 2000, and he promised to love me, “for better or for worse, in sickness and in health…”  And he surely has been true to his word.

I am not to sit here and say, “life is perfect,” or “we never disagree.”  Because I would be lying, and frankly that would be boring.

But, we work together.  We swallow pride when it’s necessary.  We say I’m sorry.  We forgive.

never alone

And, what I can say, is there is not a chance Meghan and I could spend our days “beatingcowdens” without him.

Most often he is not physically with us.  He works later than I do.  I pick up the afternoon appointments, local or in NYC.  I drive to swim practice.  I wait there and drive home.  I am gone hours and hours every day.

We communicate via text a lot.  I type a paragraph, he answers in a word or two.

Yet there is this sense of companionship we share from afar.  While he can not be with us at all the appointments, or the practices, or the general running around the days take us on, he is home, with us in mind.

I can not tell you how often we walk into a house full of the smell of a freshly cooked meal.  It’s not unusual for me to find a bed full of clean and folded laundry.  The dogs are cared for.  The candles burn all winter when the house is closed and stale.  The floor is clean.  Little is left out and around because he knows my compulsions and respects them enough to help me when I’m not home enough to help myself.

love

None of these tasks are trite.  They are what provides me with the momentary glimpses of sanity I so desperately need.

He is patient when we talk about fundraising.  When the whole month of January, and part of February will be consumed with “Jeans for Rare Genes 2” because Meghan wanted to DO something.  He works, behind the scenes, ever-so-quietly to spread the word, raise awareness and get things started.

He backs up technology and sits through software updates.

He updates, paints, and fixes just about everything.  And he really HATES painting.

He is a father above and beyond all things.  He loves our girl so completely she still holds his heart in her hands.  He is her way to unwind from her tightly wound Mom.  He is her chef.  He knows how to tease her until she laughs, and how to hold her most precious needs close to his heart.

And when the night rolls around, and the weight of the day presses heavy on my heart, he has the right balance of knowing when to hug me, and when to make me laugh.  My worries transcend even Cowden’s Syndrome, and the list of prayers grows deeper every day for those we love who fight more than their share of battles.  He knows just what I need.  All the time.

Cowden’s Syndrome permeates every day of our lives.  It’s reality.  It is 5 surgeries for Meghan in a little over a year.  It is 70 minutes on the ultrasound table for me this weekend, hoping, praying that I had the most thorough tech ever, and she didn’t actually FIND anything.  It is next steps, and strategies, and switching doctors, and making decisions, tough decisions.

The saying goes that if we all tossed our problems into a pile, we’d take our own right back.  I would… if and only if I could continue to run through life with my husband and my daughter by my side.

Here’s to the unsung heroes in all of our lives… for the STRENGTH and COURAGE they provide.  Give them a call, or a text, or a hug.

Love-Gives-Strength-and-Courage

Relax, Nothing is Under (My) Control

Today I  dropped my daughter’s iPad.  Down a flight of stairs.  With no case.  I’ve never seen quite so many pieces on a screen.  But, it still turns on.  And somehow we all managed to remain calm.  My husband set the appointment at Apple for Weds. night.  Yes, we have “Apple Protect.”  Yes, I know there may be a deductible.  And, while I called myself several names, I was most impressed that all three of us remained very calm.

Maybe we are learning.

Relax

NOTHING is under control really, except how you handle the things that are out of control.

Yesterday I had the dog to the vet.  In a little under a year since we rescued her, she has ballooned from 42 pounds to 65.  I guess she feels content in my house.  We must be doing something right.  There was this rash on her belly.  And $300 later, with a shot of antibiotics, some antihistamines, and this cone on her head – it’ll be ok.

April cone

Except in the middle of the night.  Then she needs her Mom to love her cause she can’t get comfortable.  But, hey, really sleep is overrated.

On Thursday we went to see the ENT.  He checks Meghan periodically since the hospitalization 18  months ago to gauge how her reflux is affecting her throat.  It was a bit redder than usual this time.  So, we juggled a few medicines and left with directions to find a GI.  Easier said than done.  Our last one was fantastic, but she took a break from practicing, and our local options are less than fantastic.  So we will seek, and hopefully find…

On Wednesday we had the 2 week follow-up from the biopsy.  We left with a script for progesterone which is apparently our only option.  It’s necessary to slow the growth of those precancerous cells, and hopefully get them to go away.  Verified with the head PTEN researcher in Cleveland, through my local geneticist.  I hate hormones.   Hopefully she tolerates it.  Hopefully the cells behave themselves.  Three month follow-up, then we schedule the next biopsy.  She needs another biopsy so we can have a “clean” one.  That’ll be in June.  Something to look forward to.

On Wednesday after the doctor, Meghan and I took the train from downtown to Times Square to see Daddy at work.  This is truly one of the highlights of her year and there was no way we were missing it!

NYE ball 2016

Favorite Family Picture! Wearing our "NEVER GIVE UP!" thegsf.org
Favorite Family Picture!
Wearing our “NEVER GIVE UP!” thegsf.org

On Tuesday we stayed home.  She missed play practice.  She was recovering.

Monday had started out full of energy – with a huge nail in my new tire.  Thankfully the car has warning lights to tell me when the pressure is low, and thankfully I got up early, because soon after I got home from getting it fixed, she woke up.  In pain.  We ended up spending Monday in the Emergency room at NYU.  All told about 8 hours, a CT scan, a chest X-ray and blood tests, they found an elevated WBC, and free-floating abdominal fluid.  The doctor said it’s likely a cyst burst.  She was vomiting so badly that morning I never knew WHAT had hit her.  Just something hard.  The fluid, in my very sensitive to her body, girl, was likely causing the severe pain – just being there.

 

One LAST IV for 2015
One LAST IV for 2015!

Maybe it was triggered by Sunday’s Swim Practice at the Long Course (50M) pool on Long Island.  Maybe not.  We’ll never know.

Christmas seems like only a blur.  Mom had it this year, a kind respite for me.  Some time spent with the family.  Some time to just be together.  It was perfect.  And I am so grateful.

 

My Family 2015
My Family 2015
My Sisters 2015
My Sisters 2015
Meghan with her Great-Grandparents 2015
Meghan with her Great-Grandparents 2015

The week has been wild, and I guess that’s why I’ve been quiet.  But, I am proud to say we have laughed despite the chaos.  I can’t think of a day this week I haven’t laughed so hard I cried.

NOTHING is under control.  At least not under MY control.  And I am going to TRY really hard to be more OK with that.

The schedule for 2016 will not lighten up even a bit.  I have an ultrasound Saturday, Meghan has an MRI on the 14th and the knee doctor on the 25th.  It will not slow down.  I must stay organized, and healthy, and focused.  I must continue to eat well and exercise.

Most importantly I must laugh.  Often.  With my family.  With my friends.  The adventures will continue.  But

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Happy New Year to all!

NYE ball 2016c