This is not from me…it’s from my friend Deana- Max’s Mom. It left me ugly crying on a Delta flight from Atlanta this evening.

So I thought I would share.

Thank you Deana for putting into words this amazing relationship we have with this amazing place.

A time to give…

It’s that time of year again. The Alice 105.9 Alice’s 36 Hours for Kids to raise money and awareness for The Children’s Hospital here in Aurora, CO. Although I’m not listening to the radio all day at work, or in the car, I have followed this for a few years now, as they do so much to raise money for Children’s Hospital.

The stories are heart-warming, and full of kids who have needed this amazing hospital for some part of their lives, and many have gotten better because of the top-notch care they’ve received. These are worthy stories, beautiful stories of miracles. But, they aren’t the only stories. There are so many other stories that don’t make it on air. The stories like ours…maybe the stories of the kiddos that don’t ever get better. They are the stories that are hard to hear. We want to hear about the miracles. We want to hear about how this top rated hospital can time and time again “Make It All Better”. But we are the stories that should also be heard.

Ours are the children who make it into the hospital for a small stomach bug, and leave three weeks later, having spent Christmas on the Eighth Floor, an emergency surgery, with a price tag of twice our yearly income going back to the place that once again saved our son’s life. Ours are the ones who have been handed over into the hands of surgeons to stop the 200 plus seizures a day, coming back a new baby with part of his brain missing, but also hundreds of seizures missing too. Ours are the ones who have seen nearly every specialist department in the hospital, bypassing only the general pediatric team. Ours are the ones that have been in so much, we have favorite nurses, favorite rooms, favorite floors.

Ours are the children who died, and were brought back to life, but are never ever the same. Ours are the children who have the disease that will one day take their lives. Ours are the children who are mysteries to the doctors, who are still hoping for a diagnosis. Ours are the children who may look perfectly fine, but take a team of doctors with intensive care to help them do the things so many take for granted. Ours are the children who have left us, after the world renowned doctors just could do no more.

Ours are the children who make up the Children’s Hospital. The ones who will go to be treated time and time again for the remainder of their short lives. The ones who are here today because we are fortunate enough to have a thriving Children’s Hospital in our backyard. The ones who are no longer with us, but whose legacy lives on through foundations giving funds back to Children’s for research to find a cure of the disease that couldn’t be stopped.

So, when you listen, give…give generously. They do amazing things for all kids. The ones who get better, and the ones whose lives depend completely on places like The Children’s Hospital for them to get come home one more time.

Statistics say…..

That if you lose a child, your chances for divorce are 90%.

90%

What a crap-tastic statistic! And you know what its says?

“You have just lost a child, but be careful, you only have a 1 in 10 chance of your marriage surviving. You have lost a child, and you just might loose your family too.”

Rubbish, I say!

Rubbish.

No one knows your grief for your child like your spouse. No one else knows ‘that look’ when a child cries in a restaurant. No one else knows how to dry your tears.

No one else knows when you need someone to hold your hand.

No one else will forever cherish that memory.

So, this Valentine’s Day is to my husband…..who is now sleeping on the couch after a dinner of steak and lobster.

No one else knows how to love my children.

No one else knows how to love that memory…..and to love me.

And for all of that, I am eternally grateful.

90% is a bunch of hooey.

Thank goodness.

Here is my latest story!

Page 197 🙂

This book hits me close to my heart. The Uninvited Guest was written on a fluke when Samantha was still alive. I wrote it about the Grief parents of terminally ill children live with every day….the Grief about having a child who will not walk, not talk, a child who has seizures, a child who will never live independently. I wrote it about the Grief that seems to accompany everyday life and how to live with that Grief….how to co-exist with Grief and still have a fulfilling life.

When the call for stories was posted I thought this story wouldn’t fit, we have Samantha. This book is about those who have lost a loved one. We still have our sweet, little loved one.

But it was still about Grief….so with a little encouragement from my writers group, I sent it in.

And I never heard anything back.

A week after Samantha passed away, I got a letter of acceptance stating they would like to publish my essay.

I think about this story often and how I told myself I can live with Grief and still have a fulfilling life with this uninvited guest.

Perhaps I need to see it in print.

P.S- We are having a book signing party and kick off for our foundation. You can find details here– please let me know if you would like to attend

I haven’t posted.

Because hubby and I have been here:

We took off for a week….just the two of us and sat on a beach for a while.

It was lovely and much needed. We took a vacation five years ago when I was 9 weeks pregnant with Samantha and a nervous wreck. I was afraid to go into the ocean because I thought I would be eaten by a shark…..seriously, a shark. I attribute it to a high-risk pregnancy after Jack but it still didn’t make me any fun.

I was kind of fun on this vacation. We both were kind of fun on this vacation. That’s not to say it wasn’t without our sad times. The irony that we can now do the things we couldn’t because we don’t have Samantha kicks me between the eyes sometimes…

but I think it always will.

I also think it’s nicer to be kicked with irony when you’re holding a mai tai in 80 degree weather while sitting on the beach. Location is everything.

We also lost our dear Dodie while we were gone. It was expected but still sad. She past away when hubby and I were on a sunset cruise.

Irony.

We were also being piled with this crazy, yummy ‘adult-Hawaiian-punch’ while on the sunset cruise, which Dodie would have appreciated. She always liked a good party.

Most important we connected with who we are; as a couple and as two people trying to navigate this life. We held hands, we laughed, we cried, we sat in this amazing adult-only infinity pool and bobbed around on these giant, floaty, bean-bag things.

I took a surfing lesson.

I swam with a turtle.

I saw one butterfly; only one.

It was a good vacation.

Remember these lovelies from Thanksgiving? My dad’s parents, my Popa and Dodie.

Tonight Dodie is not doing well. Today I was called to come and visit because her precious time is ticking away.

I adore my Dodie. She made the simple things seem so very glamorous; eating chips, drinking coke and playing cards in the motor home. The motor home was parked in the driveway but that didn’t matter, it wasn’t the house. We would make up stories about where we would drive….Europe, China, the moon, all while sitting in the driveway in Plano, Illinois.

When we went out for Chinese she didn’t order sweet and sour pork….she ordered shrimp with lobster sauce? Lobster sauce? Is it made of lobsters? My six-year old world didn’t know such a thing existed.

My 7-Up always had cherries.

Making it a glamorous Shirley Temple.

Tonight she is tiny, shrunken, moving onto her next world. She sleeps, breathing tiny little breathes.

I sat by her bed and told her about the time she bought me ruffled underpants and let me eat two hot-fudge sundaes.

I was three. I flashed my ruffled underpants to the entire restaurant.

I think it was one of the best nights of my childhood.

Tonight I placed a lion and frog magnet on her hospital bed and told her Samantha needs a Grandma in heaven to let her eat two hot-fudge sundaes.

She is a good Dodie- dancing on top of her feet at age four, I would look up at her face. I was dancing on top of the world. I was dancing on clouds.

I am 40….and that memory 36 years ago still makes me smile.

Thank you Dodie. Sleep well tonight no matter where you decide to be. Don’t forget to let Samantha dance on your feet.

I love you.

I did it….

I turned 40….

And apparently my mouth grew 10 times its size. Look at that mug! Clearly I’m having a good time; surrounded by my tribe, embraced by the people I love.

I danced out on the floor to I Will Survive with my friend Heather. Heather is a stage 4 breast cancer survivor. Out of the blue, I kissed her cheek (wine makes me kissy) and grabbed her hand….

“Heather,” I said, “we will survive, we will, we have to.”

We looked into each other’s eyes and gave a knowing look….one a mother without her child and one a mother facing a horrible disease. We have to survive.

And then we kept dancing…

I will survive
as long as i know how to love
I know I will stay alive
I’ve got all my life to live
I’ve got all my love to give
and I’ll survive
I will survive

Maybe this is why ancient tribes gathered together to dance, to leap in the air, to feel alive, to feel their heart beating, to forget that tomorrow they might be eaten by a lion, to celebrate.

I need to go out dancing more often.

The candles were lit on my beautiful, 4 tiered chocolate cake made by my lovely friend Charise. As happy birthday was sung, I kissed my husband, “I don’t know what to wish for,” I said.

“Wish for a happy life,” He said. I looked at my tribe, gathered around us, cheering us on through thick and thin, holding us up so many times I feel like I’m walking on air.

“I already have one.”

40….bring it.

Here it is…..

Our Miracles for Mito logo.

Thanks to our buddy Luke Wennik, our graphic designer who has volunteered his time, talent and gave us this logo.

Thanks to my ‘sister’ and new Mito President, Laura who brought us Luke and is keeping us all focused.

We chose the butterfly because it evolves from a catepillar to a butterfly, the way we have all evolved from this disease. We also chose the butterfly because it moves through the air, the wind, it floats between the ground and the sky….it is really not a part of the earth we walk on and everytime I see a butterfly, I think of Samantha.

The butterfly is made up of two hearts.

Because she is always in our hearts.

And because it was her tiny heart that gave out.

The squiggly in the middle of the butterfly is the mitochondria. The reason for this whole foundation.

I love it.

It makes me proud every, single time I look at it.

I’m moonlighting as a freelance writer!

Really.

You can find me here.

You can also find this post today on Hopeful Parents.

On the second day of 2011, I struggle with what this year will mean.

This is our first year without Samantha. What will happen during this year? Will I be expected to move on? Will people forget about our girl? Will people no longer ask?

Who will I be on this first year?

I have recently felt a strong connection to Elizabeth Edwards; a mom her lost her son but never forgot, a woman who held her head high in the face of public adversity. She seemed stronger the harder life became.

So today I googled her and found a wonderful article by Phillip Lister. And I found her thoughts on moving on. And I found how I will move on in 2011.

“After our children die, we need not give up the role of parenting, but now, instead of parenting the child, we are parenting the memory of the child. It gave a strong counterpoint to our culture’s push to mourn and then get over a loss and be done with mourning. It offers an alternative vision of converting mourning into a continuing bond, to grow through our pain and press on with optimism in a meaningful life while still being connected to the one we miss.”

I love this. I love this idea. Because we will never forget, I will never forget. The thought of ‘getting over a loss’ makes me so very sad. And it is impossible. My solace in this world is to move forward while still remembering who Samantha was and how she changed my life.

She goes on to say, “For me it is not about religion. It is about grace. I honestly believe that if we are not enlightened by the death of our children to the frailty of man, we will never be enlightened. And if we do not respond with compassion to that frailty, we have failed a very easy test. I hope that since the death of my son I have learned a few things about what is important. Maybe what guides physicians is a good guide for all of us: first, do no harm … We need only examine what we say to see first if it might do harm.”

Thank you Elizabeth Edwards. Thank you for your candidness. I never knew you but I think I will miss you. You sound like my kind of lady.

She left me with a lyric from Leonard Cohen’s song Anthem:

Ring the bells that still can ring
Forget your perfect offering
There is a crack in everything
That’s how the light gets in

May I remember in 2011 to let the light in.