Friday, November 01, 2013

What I Did For Love

The words of this song get me every time... Ah, What we do for love... and look (and listen) to these results: http://www.youtube.com/watch?v=8rbLiDF_nnU

Thank you, Pittsburgh Ronald McDonald House

Madi was asked to be the keynote speaker at the Ronald McDonald House of Pittsburgh, PA fundraising gala. Due to prior commitments, she could not attend. The essay she wrote follows along with the link to a slideshow they will share: http://www.kizoa.com/slideshow-maker/d6521048k7842285o1/rmcd-house When I was asked to write a bit about what the Ronald McDonald House has meant to me, I was a bit overwhelmed to realize that about 1/3 of my life has been spent at Ronald McDonald Houses. My first "home away from home" was the original Ronald McDonald House in Philadelphia, Pennsylvania. Most of my second and third year of life were spent at the house in San Antonio, Texas, when I had my original VEPTR devices inserted. At age four, Children's Hospital of Pittsburgh opened its own Vertical Expansion Prosthesis Titanium Rib program, and I was transferred to the hospital there. Between the ages of four and thirteen, the house on Shady Avenue was a safe place for me. It was a place where I knew I was welcome and could rest before and after surgeries. We live nine hours from Pittsburgh, so the financial burden of travel and stay during my thirty nine major surgeries was heavy. Thanks to the Ronald McDonald House, my Mom had less worry and stress. The house also made it possible for my Grandfather to travel with us and be there to help my Mom take care of me. My Grampa is the most important person in my world, so having him with us made my recovery easier. As a child, the little things meant a lot...being able to choose a gift from the treasure box, wander in the kitchen, choose a book or video, all made the house special to me. I also had a special relationship with Joanne, although I suspect most kids believe they were "most important" to her! I was sad when the Ronald McDonald house moved adjacent to the new hospital at first, but the past three years I have grown to love it there. It is great to just walk to appointments (I no longer have surgeries), and makes every visit less tiring. I have also learned to love the new faces that have taken Joanne's place in the office. Everyone at the Ronald McDonald House is always friendly and welcoming. At age sixteen, I have gone through a lot and met many children who have gone through more than me. The importance of the Ronald McDonald House cannot be over estimated. It really is "the house that love built", and I am thankful to have so many memories of both the house on Shady Avenue and the new house. Sincerely, Madi Draper

The Story of BunBun

It is amazing how fear can shape a moment, a day, a life. I am listening to The Border 106.7 FM as they work their way through day three of the annual radiothon for Children's Miracle Network. I suppose many people do not call in because of Fear. Fear of a layoff. Fear they won't find a job. Fear Christmas is coming and they cannot afford more gifts. Fear that there won't be a big enough turkey on the table for Thanksgiving. I want to tell you about My Day of Fear. I took Madi to her six month check up in February of 1998. I went alone. To see a Doctor who had seen Madi several times in six months. A Doctor who knew she didn't sleep. Or eat. Or have a stable sitting position. A Doctor who I had asked "why does her head only look in one direction"? ... A Doctor who had poo pooed all of my questions and concerns by telling me I was a nervous first time Mom. So, there we were. Madi, me and a little stuffed Bunny. Waiting for her six month exam. This Doctor walked into the exam room, poked at her for a few minutes, and then said, matter of factly, "I hope you aren't getting too attached to this baby, because she will not live long. I don't know what is wrong with her, but it is fatal." He then walked out. A nurse walked in about ten minutes later with a referral to Syracuse for a MONTH later, and a long list of "possible prognosis". The Doctor never returned to the room. I do not remember leaving the room or the doctor office. I do not remember bundling Madi into her purple Pagoda snowsuit. This is what I remember: I lost BunBun in a snowbank. It was a bitter cold, blustery day. Wind blew biting snow into my face. I got to the car, silent tears streaming down my face, put Madi safely in her car seat, went to put Bun Bun next to her to snuggle for the ride home... and BunBun was gone. BunBun is NOT a big stuffed animal. A small, bean filled, Pat The Bunny... brown and adorable. Bun Bun was the ONLY thing Madi had attached to. And, on this horrific day, Bun Bun was gone. I retraced my steps. I searched and searched. I saw a tiny indent in a snowbank, and, for some unknown reason, I knew Bun Bun was THERE. I dug and dug and... found The Bunny. In retrospect, I believe finding that bunny is the turning point. The moment I knew I would find answers. I would find a way to save my daughter. No matter how hard I had to dig... how cold the journey ... I would do it. I do not remember the drive home. I only know this; Madi's love for Bun Bun never dimmed. BunBun entered every operating room with her... Thirty nine times. Bun Bun was always lying next to her in the recovery room pillow when I would half run to her bedside after surgery. Bun Bun is now tucked safely under her pillow every night as she lies her lovely 16 year old head down to rest. Until you have a day when you are told your child will not survive. Until you have faced that ache and loss, you have nothing to fear. Nothing. But if you pledge today, you have so much to gain. You will help another parent face their day of fear with the love and assistance Children's Miracle Network offers. Madi, BunBun and I say "thanks"....