A note to our St Louis friend

Planning to meet you for the first time was our choice.  We knew that you possessed great knowledge and would be an amazing friend on our journey with our little girl.

You and I have had a love hate relationship.  I have hated you for devastating me.  I have loved you for tempering the devastation with treatment, support, and guidance.

I have walked your long halls during the wee hours of the night and ridden elevators to the cafeteria.  Once inside your walls we no longer feel “different” because everyone is here to heal.  Everyone has a story.  Everyone is grieving in some way.  We are respected in the journey.  Our grief is respected.

Today we made the drive to see you without feeling sick inside.  We were excited to visit to show off our progress.  Excited that you would see how great our little one is doing.  We have made this drive many times before in much different manners.  3 hours without one word being said unless necessary.  3 hours of ache in the stomach because we didn’t know what would come and how much more we could take.  Leaving the protection of your walls and respect to drive 3 hours back home sometimes crying, sometimes in silence trying to absorb the latest bomb that we had been hit with. 

Today, we pulled into the garage and I smiled at the irony of the giant animals on your concrete walls.  Giraffes, lions, elephants all dancing and smiling.  Trying to ease the journey from the very first moments.  I saw past your façade.  I know what lies within.  Little Larkin doesn’t and for that I am grateful. 

Children’s voices on the elevator car welcoming us to St Louis Children’s Hospital!  Every sign is happy, well laid out to get families to where they need to go.  The ceiling of the entrance is a giant train track with 2 different trains choo-chooing on their own circular journey. We are met by a police officer who cheerfully greets us with, “WELCOME TO ST LOUIS CHILDREN’S HOSPITAL HOW MAY I HELP YOU” and directs us to the Epilepsy suite area that we already know well.   Again a necessary presence to protect and while he is cheerful and helpful, he carries a gun.  Irony but I know that he will stop anyone from hurting us and ensures that people do not come in off the street into our sanctuary.   

As we walk the corridors, I see many faces of children just like Larkin.  Born too soon, born with too much or not enough genetic material, cancer, myriads of diagnosis as we stroll by.  We are no longer different.  We fit in here.  We are the most important ones in the building.  We are accepted and not stared at with curiosity or pity.  We matter.  In that moment of clarity, it is what defines my dreams for Larkin’s Place at the YMCA. 

Today we sat in an office with smiles, giggles, and tales of progress.  Small progress but to us it is as if Mohammed brought us the mountain and we scaled it baby!!! 

I watched and listened as the doctors enjoyed a child that has come back to us.  A child they met 3 years ago who wouldn’t look at them, notice if they came in a room, had very poor tone and seized all the time.  They are overwhelmed because it is not often enough they get to experience this.  They share our joy.  Share our hopes and dreams. 

We left with a plan.  We drove home in good spirits and talking off and on but in the back of our minds, the plan brings change in the spring.  Change that will be so very scary for us.  Time to see what Larkin’s brain is doing sub-clinical through another 24 hour EEG.  If that testing shows minimal seizure activity and that the brain truly has changed and healed because of our diligence, then we will begin to wean her off the Ketogenic diet. 

I want to throw up typing that.  It makes me cry.  We have worked so very hard to get here and now we have to stick to the deal and listen to her doctors.  It is time to see what Larkin can do without the diet.  I cannot go back.  I just cannot.  I cannot take it.  I swear that if I see one more seizure – I will crack in half. 

Ever see a parent crack in half?  I am laughing through the tears right now with that mental picture. 

Anyway – that was the day for us.  That is the plan.  I hope that by April/May I will have prayed enough, worried enough, cried enough and complained to all of you enough that when we make the drive down it will not be with the familiar ache and silence of angst. 

Perhaps a bus trip is in order.  I will be willing to bet STL Children’s aint never seen a group like us pull in.  All of you can walk the halls with me and learn to read EEG’s.  The cafeteria has its own Dairy Queen and Pizza Hut so I am thinking y’all just might sign up. 

Therefore, my friend we will come and see you in the spring.    It’s a catch 22 though.  If the EEG shows seizure activity then I will be upset and we will continue the diet for another year.  If it’s clear and we wean off the diet and they come back then I will be upset.   What’s a mother to do? 

Who’s bringing the wine on the bus trip?