Alex

The girls have been reading about "Alex the Lemonade Girl" for years now.  A mutual (and great) friend of Alex's family sent us the book as a baby gift and it's given us years of pleasure. As our kids get older, the more they understand how incredible Alex is and why our family raises money for the very same hospital and our NICU.  They talk about her like they know her.

I say how incredible she "is" because I haven't the heart to tell them that Alex is in "Kevin" (aka Heaven) and has been there since before they were even born.  She gives them so much hope and she gives Adelina a place of understanding about being sick sometimes or not feeling right inside.  She gives Lucia joy when I read that she had a head full of curls too and was her age when she started her lemonade stand.  Gianna is in the midst of growing her hair to give to Alex before she goes in to first grade in September.  It makes them feel proud to be a part of something bigger than they are and that an amazing little girl named Alex is a kid just like them.

Alex's story was on CBS a couple weekends back and her Mom said that "her legacy was hope." I'm not sure when we will talk about Alex living in "Kevin," because it's just starting to sink in what that actually means for them already knowing a brother, a sister, a great grandmother and a cat who live there.  For now, she's doing just fine in their minds selling lemonade and being a superhero.  She's teaching them that their efforts are contagious and that kids have big voices.

Thank you Alex.  You're doing more than raising money for cancer research, you're giving kids, sick and healthy, an inspiring role model and that allows you to live forever.  Kevin can wait.

Brave Door

That's my view of a door from sitting on the floor. My daughter is behind it.

People are passing me over in the halls and I can't look at them, so I'm just sitting and waiting.  Actually sitting and writing in the notes section of my phone.

She didn't even flinch when they called her name to come back, because she knows where she is and why she's here.  Imagine your own 5 year old walking alone with a nurse dressed in a giant lead suit, goggles and hair net with their hand extended to hold with a brave "ok" leaving their lips when asked him/her to go in without you.  These kids are tough.  I'm the one sitting on the floor weak in the knees.

Maybe they're so strong because they know only of today and what is simple.  They don't worry about long term health problems, learning delays, life expectancy and all the other crud that fills our heads. Whatever it is, only a child can possess it.

She wants to be a ballerina.  The funny part is, because of her health and prematurity, she's the perfect size for a ballerina.  Although it would make a even better story since she has been booted out of two ballet schools for sensory disorder.  She's older now and quite ready.  I'm taking her to see a show on Friday and can't wait to see how excited she will be after knowing she starts in the fall (again).

I dream of her dancing on stage and know that I'd be sobbing in my seat knowing what she went through to get there.  I dream of sobbing at anything she can accomplish, regardless if it's on stage or just getting better. When am I not going to have to sit in a waiting room or pace a hall while one of my kids is on the other side of a door? I guess that's a selfish question considering they're getting the short end of the stick.  I'm going to stop mentally complaining now and sit here dreaming of the little girl behind the door in full swam lake attire, arms extended gracefully while on her perfectly wrapped ballet toes until it opens.

Ten minutes.  Twenty minutes.  Twenty six minutes.

She came out.  I'm writing this at home now.  She bounced like a ball out of the room with a hair net bobbling back and forth while she talks at the loudest possible level over the doctor explaining what was going on. Halfway down the hall she stops bouncing.

She turned around from running ahead and dropped her shoulders and started to panic and sob.  I knelt down to comfort her and whispered in her ear over and over until she was ready to let me pick her up five minutes later.  I held her on my shoulder as she finished off her last tear in my neck.  No five year old should know post traumatic stress.  She's old enough to understand that this is not going away, but not old enough to have that level of emotion put upon her.  It's just not fair.  Her body was shaking as she mourned the loss of her freedom from tubes and wires, her fear of the unknown and knowing that at times she is going to be alone. She deserved that cry.  I just wish she didn't have to.

I guess I didn't give her enough credit earlier when I was sitting on the floor at the foot of the door. She is tough, but fully capable of thoughts and emotions beyond her years.  She can't yet spell her last name, but can recognize the word "courage" because I've read her the book a dear friend sent over every night for a week now.  As I tucked her in, we read and this time she understood truly how brave we have to be and she knew that Mommy was brave too on the other side of the door.