Do What You Love


It was almost 8:40 last night as I drove down Grymes Hill with Meghan.  She hadn’t been home since we left for school at 7:20 that morning. She was facing a shower, dinner, homework, and a later than normal bedtime.  She had spent the afternoon registering for her after school drama program, and had spent the last two and a quarter hours in some combination of intense exercise- on land and in the water.  She was exhausted and it was evident in her face. But, not it her voice or her mannerisms.


“I know I’ve got you running all over the place Mom, and I know it’s a lot of hours.  But, I have to tell you that I LOVE it.”


I couldn’t help but smile in spite of myself. We all want for our children to do what they love. And here she was; registered for drama, swimming 4 days a week, pushing the herself at school, enjoying church youth group, and planning a fundraiser for February.


She feels rotten. A lot. But she pushes. And I have to believe that is how we have to live this syndrome – this life.  Maybe I’m a good influence after all.

She plays in pain. Constantly.

She is always recovering from or anticipating something. But instead of waiting for the storm to pass…

She’s clearly dancing in the rain.


We have our spats. We’re supposed to. But, we balance each other too.

We keep each other motivated. We keep each other grounded.  Her diagnosis still makes me physically ill.  But, it does not, can not, and will not define her. I’m convinced.
Do what you love I tell her. Do what makes you happy. And she does.

And I do too. Watching her for hours, on the bench, in the basement by the pool makes me happy. Watching her on stage makes me happy. Watching her persevere makes me proud.

We will do this- together. We are BEATINGCOWDENS.

#beatingcowdens #collegebound

No, she’s not going yet.  And actually even the thought that she will truly be college bound only 6 summers from now makes me a bit queasy.  But, there will be time to deal with that later, and milestones to cross along the way.

For tonight, we celebrate what we hope will be the first of many college scholarships.  While the amount is small, and the $1,000 will likely not even cover the cost of her first semester’s books, the honor is great, and the concept that these things can start now is mind-blowing.

The link below only connects you to the search page, where you would have to put in her name and state to search for “Regional Winners,”  but the picture shows a snapshot of the reasons for selection.

Regional Winner - Kohl's Cares Scholarship 2015
Regional Winner – Kohl’s Cares Scholarship 2015

Search for Scholarship Winners using this link.

The award is held by Kohl’s and paid to her “undergraduate institution” upon enrollment.  It sounds so formal.  So fancy.  So far away.

But, it’s not.  And time will fly.  I know this.

So I run as much as I can, getting to every doctor, and as many swim practices, and drama sessions as I can.  She maintains her really high average with minimal input from home.  And I bring the computer to swim practice.  So I can write.  And stay sane.  And cherish the little things, which in fact are DEFINITELY the BIG GIANT things.

little things

Tonight it’s not about being sick.  It’s about being well enough to overcome.  It’s about determination to persevere.  It’s about a desire to make life better for others.

Determination

She is talking actively about how she will make next year’s fund raiser better.  Her goals.  She has some other things in the works too.  The brain is always going.

effort

She is steering this ship.  I am her happy co-pilot.  Along for the ride of my life.

Together we are BEATINGCOWDENS, and we WILL NOT be stopped.

 

That Voice

That voice. The one we all have. The one my friend whose post I “reblogged” wrote about yesterday,

I have been battling mine. Sometimes I win. Sometimes I don’t. But, I am actively working on increasing my stats.

Chronic illness is, well, chronic. It sticks around even when you’d like to toss it to the curb.

Yet I, as so many other parents, have found an inner strength that comes with managing your child’s chronic illness.

And somewhere after you have been battling for a bit, and your mother’s intuition is fully fine-tuned, and stronger than any fictitious “super power,” you realize it gets easier and easier to take that voice of self doubt and tell it to SHUT UP!

Just this last year alone, as I have adjusted to my new body parts, and my missing body parts, I have come to the determination that despite my gnarled mess if varicose veins- I CAN wear shorts, because – why not?

And I CAN talk to whomever I want about the Isagenix business I am working to grow, because I believe in the products, and they have changed my family for the better. So, why not?

And I CAN blog in intricate detail the stories of our battles with Cowden’s Syndrome, so that those in similar situations have a story to relate to- and others will help us raise awareness.

I am able to stifle that voice when I meet another new, clueless doctor. I am able to educate them, or fire them. Whichever is best. I am able to plow through obstacles wretchedly placed in our paths for the best care my girl deserves.

Yet, there are still times that voice, and all of its horrible, scary, evil “what ifs?” Whispers – no SHOUTS in my ear.

We are still in Disney. I am alone by the pool. I have been here for hours- not without a cocktail in hand. But I am separated from my family because my girl is exhausted.

It’s Florida. It’s August. It’s hot. And maybe it’s just that simple.

But we’ve done this before. This is our sixth time. And this time the stamina is struggling. Late mornings. Early nights. Droopy eyes. And I worry.

We give her the best, cleanest, purest food and vitamins we can find. She sees doctors all over- all the time.

And yet, “Mom I just don’t feel right.”

My heart sinks.

I brought her cookies tonight- a trip to Downtown Disney alone because she just “couldn’t.” The gratitude in her eyes worth every one of my extra steps.

There is no fever. Maybe her Dad is right. Maybe I worry too much.

But we have only seen one night show- unheard of for us. I am starting to wonder what will happen when school meets PT and swim practice!

Or, maybe I remember too much. Or maybe I know her too well.

Motherhood carries inherent risks- among them constant worry. So Cowden’s or not- I am confident I am not alone in my anxiety.

We want what’s best for them. We want to help them. They are our lives, our air, our breath.

I have got that voice in much better control than ever before. On this though, I am not alone in wondering if I will ever get it to SHUT UP!?