Building Bridges…

It’s been a while since I’ve written.  If I have my way I’m about to get so focused that you’ll get tired of hearing from me.

Life has become a bit overwhelming.  And some days all of this, this whole chronic illness thing, is just too much to handle.

There are days the path looks like this.

broken bridgeThere are days when it is easy to wonder, “What now?”  or, “What next?”

But that is the very mindset that can find us in a heap of trouble.

So we are trying to work on shifting our focus.  Instead of panicking when the bottom feels like it’s falling out, we are working on reinforcing the structure.

We all need a bridge, a support system of sorts.

With two members of the house who are the 1 in 200,000 unique that comes with having a RARE Disease like Cowden’s Syndrome, it’s so easy to let the illness try to creep into your identity.

I don’t talk too much about me.  Mostly because as any Mom, my needs are second to those of my girl.  But, I too get overwhelmed.  And when I feel like Cowden’s is trying to choke me out – it’s time to pause and reclaim.

I am more than the paperwork and medical records.  I am more than the bills and prescriptions.  I am more than the scheduling and the appointments.  I am more than the mastectomy scars.  I am more than the synthetic thyroid hormone.

I am a mom.

hope stone

I am a wife.

hope stone

I am a friend.

hope stone

I am a Christian.

hope stone

I am a teacher.

hope stone

 I like music.  I like reading John Grisham. I enjoy Law and Order.  I like to laugh.  I CAN’T get by without my Isagenix, and my Ionix.  I appreciate photography, and I really, really like to sleep.

And with each piece of my identity, the pieces of my foundation get stronger.

 

There are things I have to do as a person with Cowden’s Syndrome.  There are things I have to endure.  There are an unnerving amount of tests and appointments and the constant nagging notion that things may spin out on a dime.  But if I am honest – isn’t that what life really is – for everyone?  While the issues may not always be medical, the reality is that despite our best efforts, we have no control.  So, we do “the best we can with what we have where we are.”

And as I get my foundation in place.  As my stones are strategically placed – so they can be stepping stones along the way if needed, I can work on helping Meghan build her bridge.

wooden bridge

I figure once I have it together enough that I can catch her if she falls… she’s free to establish her own pace, and find her own way.

We will forever do outreach work.  We will forever share our story.  We will forever create fund-raising opportunities for research.  That will be part of our lives.  Cowden’s Syndrome will be part of our lives.  But it will not BE our lives.

My daughter has seen more in 10 and a half years than most adults see in a life time.  She has been medically poked, prodded, and cut.  She has been in and out of hospitals.  She has seen doctors hired and fired.  She has been listened to and she has been ignored.  She has had arteries ablated, and a body parts removed.  She has vomited pure bile from a stomach torn apart from pain medicine.  And she has pushed each day through that pain.  She tries to be like the other fifth graders, but she struggles.  She struggles to be understood and to fit in.

But, from my stones, my own developing identity,  I can see her clearly.  Perhaps more clearly than she sees herself some days.

I don’t profess to know all things.  She’s a bright preteen.  There are things I’ll never know, and that in and of itself is OK, and normal, and even healthy.

What I see when I look at Meghan is not Cowden’s Syndrome.

I see a beautiful smile.  I see a kind heart.  I see compassion.  I see love.  I see competitiveness.  I see a swimmer.  I see a singer.  I see a reader.  I see someone who loves to play hard, and relax just as hard.  I see raw determination.  I see high standards.  I see someone, a young woman who makes me proud to be her mom.

This summer we are going to work on building.  I want to be able to provide her stepping-stones.  And then I want to help her build her bridge, with a healthy mix of guidance and independence.

I want her to see she has Cowden’s Syndrome, but it does not have her.  It is an inconvenient part of our lives – but not our entire lives.

We are going to make memories.  We are going to create situations that have nothing to do with doctors or hospitals.  We are going to laugh and play.  We are going to continue to “Live Deliberately.”

And we are going to write it down.  It sounds so silly to think that we have to write down having time for fun, but we do – for now.  Maybe one day it will become so automatic that life’s adventures will become common, and our medical world will fit in the empty spaces.

It’s not going to happen all at once.  There will be days we have to remind each other.  But, we will get there.

And along the way we will slowly build the team of medical professionals who look at us as people, and keep our best interests at the forefront of their practice.

Because as we become empowered, we will be rid of the others.  Positive influences only.  We deserve that.

She made swim practice tonight.  No small feat.

The pain – evident, but managed.

applause

Endocrinology consult Thursday.

Hopeful.

A balanced thyroid certainly would help a few (dozen) things…

 

Live Deliberately

Live deliberately.

From time to time, as I am working hard to get out of my own way, the words of Henry David Thoreau creep into my subconscious.

thoreau-i-wished-to-live-deliberately

 

Live deliberately.  On purpose.  With a purpose.  With goals.  With faith.  With belief that it all matters.  Not just in this world, but in eternity.

There are countless things in this life that are running out of control.

outofcontrol

 

Last week in church, I held the hand of a woman who is trying to establish her life here in the United States while her family originates half a world away.  I know very little about her, but I cried with her as she was enduring the loss of 6 family members who had all died in a car accident.  Out of her control.  Immeasurable pain.  No words.  Just prayer that she arrive safely to be with her remaining family.

Then there is my internet friend in Australia, whose daughter has endured more brain surgeries than I can count.  This week things went badly.  The surgery was aborted.  They had to make a new plan.  Her daughter- beautiful, 20ish, and full of life.

And another story I follow closely, of an acquaintance whose mom became septic in December after routine surgery.  The trials cause my heart to ache.

We could all list stories here.  Heck, I could go on for pages, the old friend whose brother is battling cancer… and so on.

I could fill this page with the struggles of my daughter this week.  Battling the demon that is Cowden’s Syndrome – and whatever else has crept into her body to accompany it.  I could write about the nights spent holding, and wishing, and praying that the pain be gone, or that God help us make some sense of her agony.  I could continue in frustration about the thyroid hormones all askew.  And the general lack of knowledge that greets us at most facilities.  But I won’t.  At least not today.

Today I am reflective about Thoreau’s words.  Today I am thinking about what it means to live deliberately.

I can not control tragedy.

I can not control pain.

I can not control sickness.

I can not control sadness.

I can not control life’s twists and turns.

I can not control the course of Cowden’s Syndrome or any other aspect of our lives.

No matter how badly I want to.  I can’t.

And, I also can’t make sense of most of it.

So, I have a choice.

I can sit here and mull it over.  I can feel everyone’s hurt and pain.  I can reflect on the unfairness of it all – or I can live deliberately.

I choose to hug my husband.  Because I don’t do that enough.

I choose to rub a dog’s belly.  Because it’s good for both of us.

I choose to eat well, and get and stay as healthy as I can.

I choose to be involved in passionately sharing my love for good nutrition and the products helping me find it.

I choose to take a deep breath when I am stuck in traffic.

I choose to deliberately try and turn lemons into lemonade.

I choose to use my grief over the loss of my loved ones, and channel my energy into the most positive outlets I can find.

I choose to get involved in raising awareness – of Cowden’s Syndrome and other RARE diseases.

I choose to get involved in things I feel passionate about, and not in things that bring me down.

I choose to advocate tirelessly for my daughter, and any other that I can help along the way.

I choose to always make sure I have an extra spoon for my daughter – or a friend in need.

I choose to laugh – at myself as needed!

I choose to pray.

I choose to be a friend.

Because to live deliberately doesn’t mean life will be easy.  It doesn’t mean life will go well, or the way we want it to.  It means making a choice to find what you can, dig deeply for the beauty that is abundant in the joys, but also hiding in the sorrows.

To live deliberately doesn’t mean I won’t be sad, or mad.  It means I will have ALL the feelings – on purpose.  Because to truly appreciate life I must experience all things.

happiness is a butterfly

 

I choose to do one thing I enjoy every single day.

And today I choose to take a walk.

How will you live deliberately today?