Reason # 3,743... Why 'Normal' is important...
When you spend your life skating just outside the parameters of what everyone else is doing and achieving, doing 'normal' things becomes kind of treasured. Even if your 'normal' isn't the same as everyone else 'normal'. It's your Brass Ring. It's your Ribbon. It's your Silver Lining. It's what you look forward to. It's your Reward...
In the begining, our 'normal' consisted of Hospitals and Doctors and Nurses. NICU. Home Health. ER. PICU. Diaper bags filled with Medical Supplies. Portable Sat Monitor. Portable O2. Feeding Tubes. Trachs. Weird looks from strangers. Fear.
Eventually, our 'normal' changed. Home Health visits stopped. ER visits became less frequent. PICU stays became shorter. 'Normal' things were added- My Gym, Horseback Riding, Karate, Dance. All of these 'normals' were very closely supervised.
As more time passed, even more things became 'normal'. School. Full Time Nurse at school. More surgeries. Supervised activities.
And then, in December 2009, our 'normal' changed. Finally changed to allow us to include some real life 'normal'! For the first time ever- no Trach and no Feeding Tube. No Nurses. No Medical Supplies. No O2. Guess what our 'normal' started to include... Swimming Lessons. After School Activities. Drop Off Activities.
And the Biggest Brass Ring of ALL!!!!
Camp. Not just some kids at the local Y or JCC. Not drop off/pick up camp. But real-life, in-the-woods, sleeping-on-a-bunk, singing-campfire-songs, away-from-your-parents-for-the-first-time, giggling-with-other-girls-in-the-middle-of-the-night camp. MotherF*%#in' Sleep Away Camp!!!!!!!
Granted, this camp is geared towards kids with medical needs and the have a freakin' 'hospital' on campus- but, when the campers are there, they are ONLY CAMPERS. They are never their diagnosis... To live your life for just one week as not being labeled as your diagnosis is pretty freakin' huge to a nine year old...
Beanie has told me several times over the last year that Camp Boggy Creek is her favorite place in the whole world...
Well, our 'normal' changed again this year. In just one day, in one OR, under one anesthesia- poof... Trach and G-tube are back... Welcome Back School Nurse, O2 Monitor and Bulky Bag o' Medical Supplies. GoodBye Swimming, After School Activities, Freedom...
I got a call from Camp Boggy Creek today. They accepted Beanies application for a spot at camp in August. She cannot go because of the Trach... After I hung up with the Camp Director, I felt like I had been punched in the gut. The last two months have been multiple surgeries and painful procedures in the hopes to get back to 'normal' soon. But, it's not soon enough...
I know that we are looking at the light at the end of the tunnel and that it will get better, but today just sucks...
xo
