Sunday, March 27, 2011

Dining Out in Dallas, Lights, Camera & Action at our house!!

We had an insanely busy week!  We're busy getting things ready for Dining Out in Dallas, plus there was PTA and a fundraising dinner at the school, and Hoops in the Highlands. I love being involved with all that the children have going on, but I will say that the entire family was thankful for a lazy Sunday. I want this blog to be about Vintage Loving Momma, and crafting, and my Etsy shop, but I also want to be able to share glimpses of our life here. Thursday Murray Media came to our home and filmed an interview for Dining Out in Dallas.  I love this quote:   "Each time I told my story, I lost a bit, the smallest drop of pain. It was that day that I knew I wanted to tell the story of my family. Because horror on Earth is real and it is every day. It is like a flower or like the sun; it cannot be contained." — Alice Sebold (The Lovely Bones)

I read the following entry from Katsie's Caringbridge journal because I felt it encapsulated so much of our journey, and frankly, I struggled to get through the interview without tears. 

Wednesday, December 16, 2009

Six years ago later today, an ambulance would arrive at the hospital just minutes from my office- -inside was my baby girl. Her body was ravaged with fever, 104.3 according to the transfer orders which are tucked neatly in a notebook along with all of her other medical records…but the fever didn’t buy her the ambulance ride, a seizure during naptime that lasted for approximately 5 minutes did. I signed consent forms for tests, CT, Chest X-Rays, Lumbar Puncture, and I held my girl and we waited…looking back I’m certain that by this time I was in survival mode, I don’t think I felt anything, not panic or even anxiety, I was just numb. It wouldn’t be long though and that Dr., I can still see him if I close my eyes, in a small room, with a curtain to provide some privacy behind a sliding glass door, directly across from the Nurses Station, delivered the news, and our lives would NEVER be the same. Our journey did not begin with NF, it would be almost 9 months before she would get a diagnosis of NF from Dr. Slopis. Our journey began with a million and ten unanswered questions about our little girl, the baby (I still call her that, “the baby”) and the tumor that had taken up residence inside her brain. I could probably recount each detail of that day and the weeks to follow, each of them still frightening and enough to knock the air right out of me, but I have everything documented in a journal and in that medical notebook, there is no need. Today I will celebrate. . .that same little girl is not a baby anymore. . .she has grown into a beautiful little girl. She is strong willed like nothing you could ever imagine, but that same tenacity helped her face obstacles many people never encounter and found her better and stronger on the other side. I am thankful for the gift of Katsie Rane. . .everyday, but especially on these days of reflection. If nothing gives you a healthy dose of perspective, facing your childs mortality the week before Christmas certainly will.

Six years ago Katsie began a battle for her life, and today she continues to amaze each of us. That is the only gift I need.

In 2 short weeks we'll be at Dining Out in Dallas celebrating Katsie, and raising funds for research for an eventual cure for NF. 

We hope to see lots of familiar faces there!! 


P.S.  I plan to have items in  my Etsy shop by Wednesday evening!

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