“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

It’s not all about us

And this is how the day started.  With thoughts of Friday.  Never a good way to start the week.  I am not one to try to wish my life away, but is it so wrong if I prefer days with my family over anything else in the world?

But, we got it together and got out of the house on time. 

Waiting for Meghan to get on the bus, a car doing about 65 speeds down our street.  As I refrain from the words I want to yell, I quickly say a prayer to myself – that his stupidity and selfishness doesn’t bring harm to anyone else.  I am always appalled – and I don’t care how late you are – by the callous disregard for human life it takes to speed past a school bus.  UGH!

Pretty much that sums up how the day continued.  There is a sense of urgency in everyone it seems – except about what really matters.

Now I don’t claim to have it all together all the time.  And I don’t claim to be free of frustration.  Nor do I deny that the ,”Why Me?” bug does bite us all here sometimes.

But, I am still amazed by people who are so narrow-minded that they can’t see the world from someone else’s point of view.  I am still deeply troubled by people who won’t take a minute to try to put themself in someone else’s shoes.  And I am horrified by those so self – absorbed that they speed past school buses, and generally have little regard for human life.

Maybe that’s it.  Maybe I feel like too many people don’t realize how precious life is.

I don’t mean it as a morbid thought – but it really is true.  I look at my grandparents, still married  – 67 years later at 92 and 93, and they always kiss each other goodbye when they go out.  I would hope they will be with us forever, but reality is what reality is, and they take a moment to express their love – often.  So many people could learn life lessons from my grandparents.  They are role models to be emulated in so many ways.

Ist Holy Communion 2011, with GiGi and Pop

It shouldn’t take a rare disease.  Cowden’s Syndrome or any other are not prerequisites for compassion.  You shouldn’t need to have cancer, or multiple surgeries, or scary benign tumors, or to live in fear of any of the above, before you realize the value of life.

We are in a waiting period here.  No major new doctor news.  The headaches Meghan was suffering with have subsided, but I still need to get a neurology consult together for her.  The joint pain is returning, slowly, one spot at a time.  It is manageable still, but the requests for supplemental pain medicine are starting to take place at least 3 times a week.  Hoping that the 100mg of Celebrex will be enough to keep her comfortable, maybe until they find the reason for her pain.  We go to the eye doctor in 2 weeks.  The cardiologist is the beginning of December.  He will hopefully tell us that the one too many prescriptions required to keep my little love functional are not harming her heart.  Then – on the 27th of December – its on to the endocrinologist to check those thyroid nodules.  That same week we will sneak in an MRI of my spleen (which, I am still KEEPING btw..)  But, for now we are in a holding pattern and it is a good place to be.

Of course, being in a holding pattern gives my girl time to think.  While we wait word on the necklace from the Global Genes Project,

she is already planning our next fund-raising adventure.  I am currently on the hunt for denim ribbon so she can outfiit her school in denim ribbons for “Rare Disease Day,” February 28th.  And, with a few whispers in her ear from a special third grade teacher, she has begun to ask if we can “pull off a 5k run” for the Global Genes Project.

So, I put a few feelers out.  We will keep you posted.

I will be practicing looking at the world through the bright eyes of my child.  She sees a lull in doctors as an opportunity to spend time helping others.  There has to be a bunch of lessons there.

Take a minute to breathe.  Time passes so quickly.  Hug a loved one.  Look at the world through someone else’s eyes.

I have always known these things on some level – but Cowden’s Syndrome has brought them to the forefront of who I am.