“What are you celebrating?”

I am awake earlier than the rest of my family.  My big dog took a container of Meghan’s gluten, dairy, soy free chocolate chip cookies off the counter last night while we were out.  I think she will be fine.  She just had her second dose of activated charcoal, and she seems to be resting comfortably.  But. EVERYONE knows who the Mom is when they are sick – so she and I BOTH had a long night. (and I am sending her Daddy out to clean the yard! :-))

Allie - The Cookie Monster
Allie – The Cookie Monster

Last night we headed to Manhattan where we celebrated Felix’s sister’s 50th birthday.  It was a crowded room, and although the food was quite good, I had a tough time being so cramped in.  My little girl, as usual amazed me with her calm, patience, and poise.  I asked her before we left of she wanted me to ask the restaurant to cook for her.  She said she wanted me to pack her dinner.  She doesn’t trust very many places to “get it right,” and she did not want a belly ache.

So.  she put on her fancy dress.  The one she is so EXCITED to wear to the Father/Daughter dance hosted by her school Monday night.  I put her hair up and stepped back. This child has always been mature beyond her years, but when did her body start to catch up?

My little girl?
My little girl?

We sat, for a few hours.  There was minimal time to walk around, but when she did get to talk she vibrantly retold the story of how she lost her last baby tooth, and the Tooth Fairy left her $20 and a Tigger pin!  Way to clean up on the last tooth,  None of the others were worth that much!

tigger

Magic.  She brings it back into our lives.  She rounds out her father and I.  She is a princess.  Yes, she has just about everything she has ever asked us for, but she has a whole lot more.  She has compassion, patience, maturity, and wisdom.  She has kindness and generosity.  She takes pleasure out of making people happy.

My mother always said, “Children should be spoiled, just not spoiled rotten.”  Doing our best Mom.  It seems to be working out ok.

Before I started writing this, I was searching the Disney website.  I was playing around with prices for a summer trip.  We have taken Meghan to Disney in August (usually for her birthday) every year since she turned 5.  My house has photos in every room that remind us of our adventures.  We have had the happiest of times at Disney.  We enjoy each other.  And, I have to say, the year my parents joined us, was one of the best vacations.

Family fun
Family fun

We started going to Disney because of their accommodations for allergies.  It  is almost impossible to maintain a gluten, dairy, and soy free diet for a week without staff trained to take every allergy very seriously.  And while we struggled a bit last year to find “quick service” food for her, on the whole we have had only positive things to say about our Disney dining experiences.  When you have a child with allergies, you plan your trips a little differently.  Everything else falls into place, AFTER you know they will be well fed.

Disney also accommodates her chronic joint pain.  Even with the Celebrex she could not endure the miles of walking we do each day.  She travels Disney – walking some, but spending the majority of her day in a portable wheelchair.  We always get a room on the first floor to avoid extra steps, and in the event those knees give out, every park has everything from Advil to heating pads to help with the pain.

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Not to mention the Magic.  I believe in the wonders of Disney.  I believe in the smiles of hugging Chip and Dale, and Mickey and Minnie, and all their friends.  I believe in the smiles on my girl’s face.  I believe in the memories we are making – that no one can ever take from us.

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So, this morning when I ran the prices of the trip through the computer I choked a little.  It, like everything else, has gone up a good deal since last year.  And, for a brief second the thought of not going crossed my mind.

I mean, the deck needs major work, we still haven’t finished the upstairs.  There are plans for the basement to be redone, and the backyard needs help.  What about that awning for the blistering sun in our back yard.  Plus, this year forced us into a new car, braces….

Then I saw the question in the corner of their website.  It said, quite simply, “What are you celebrating?”

Well, that did it.  We are celebrating all right.  We are celebrating Meghan’s negative biopsy.  We are celebrating the knowledge we have gained from our Cowden’s Syndrome diagnoses, and the ability to “strike first.”  We are celebrating that after a long stretch of studying, they offered the Electrical licensing Exam, and Felix passed part one on his first try.  We are celebrating the love of friends, the kindness of stangers, and the compassionate heart of my little girl.  We are celebrating the power of God and the Holy Spirit to lead us to a place we worship together as a family each Sunday. We are celebrating “more birthdays” as Meghan will turn 10 and Felix 40 during that hot August vacation.  And I could go on and on with the thoughts that flooded my head in reply to that simple question.

Disney 2012
Disney 2012

So today I will finalize our trip.  I will be sure to get “trip insurance” in case life tosses us any more curve balls between now and then.  We may not finish all the projects around the house this year either.  But we have lived here for 12 years now, and its a pretty nice place to be.  The projects, the bills – they will get paid for and finished.

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The magic may not last forever.  We have learned as a family to stop and enjoy the ride.  We are celebrating our countless blessings.  God is good.  Life is good.  Family vacations are worth celebrating.

celebrate

Realizations…

I love my family. Especially when we get some time away from the nonsense of daily life and just get to enjoy each other.

Vacations are necessary. Big or small, they are critical food for the soul.

Our life isn’t easy, but I am extremely proud to be the mother of a graceful, articulate and well mannered young lady who is learning to take a lot in stride. She isn’t perfect. None of us are, and there will be growing pains as she defines who she is, but I am already proud to be her Mom, and I know that pride will continue to grow.

I have spent  the last 5 days amongst thousands of people and there is not one who I would willingly trade places with. I have seen kids…oh so ill and the anguish in their parent’s eyes. I have seen whiny, bratty kids, with parents who I am glad not to know.  I have seen kids who struggle, making every attempt to fit in, in a world that is overloading their senses.  I am grateful for our struggles, they have made us who we are. I do not want anyone else’s.

It is nice, and necessary to spend a few days with no doctor’s appointments.

I am glad to have a Mom to watch my dogs and give them the royal treatment for me.

I miss writing every day.  This bog has been therapeutic for me.

I can not stand the touch screen on my daughter’s IPad…and likely won’t write again until we are safely home.

These are my realizations for today.

Be well all!

 

Summer vacation begins…eventually!

Our Vegetable Garden

Summer Vacation began today.  Yesterday was the last day of school for Meghan and I until early September.

 I love this time of year, where I always say I get to have one full-time job (stay at home mom) instead of two.  Well, maybe it’s two full-time jobs – medical manager of all things Cowden’s related, AND stay at home mom…  But either way it is a break from the responsibilities of work, with all the benefits of still receiving a paycheck. 

Meghan’s report card was beautiful.  She makes us so proud.  We talked all about the end of third grade and the beginning of fourth.  We ordered a new backpack (Have to order early if you want that special GREEN!) 

Then she asked what we would do today, to start off our first real vacation day. I don’t think she was surprised when I answered with, “A doctor’s appointment and an MRI.” The opening in a GE Signa MRI machine

So this morning I got up at regular time.  I watered the vegetables in our garden which is growing so beautifully this year.  I made sure Meghan was dressed, and the dogs were crated.  And we walked out the door at exactly the same time we caught the school bus every morning for 10 months.

 We made it to NYC in time for my surgical follow-up.  I have officially had all restrictions lifted, although the chronic bleeding continues!  I was told not to worry, and it should be gone in another 4 weeks.  Delightful. 

Then, we walked a few blocks to the knee MRI.  She was in the tube at 10:02, with only 0.25mg of xanax to take the edge off, and lasted in there until 12:05.  unbelievable.  They told me they had 5,000 images.  I left with a CD in hand, and a promise there would be a report by Monday.
We got home in time for a quick lunch.  I managed to get the CD of the MRI, combined with a cover letter, in an envelope to Dr. K, head of orthopedics at Children’s in Boston, and sent it off in the mail.  Some time next week he will call to tell us if the date for surgery will be sooner… or later. 

We made it to a friend’s pool for a few fun hours, to try to salvage the day.  She went to bed exhausted, and soon I will too.  I hope this isn’t an indicator of what summer holds, because I am striving for a serious amount of doctor free days.  More time with the kid, the pool, and the tomato plants. 

Come on summer… be good to us.  We need you!