The Project-Toy Story Themed Room-Day 1

Project Objective: Complete overhaul of Carters room to accommodate the over bearing, over priced ($60,000!!!), and over ugly new Clinitron bed and possible lift system. This new equipment is necessary for his upcoming surgery. He will not be allowed out of it for 6 weeks after a 2 week stay in the hospital. A fun room is a must!

Many, many, many themes were discussed for this new bedroom. The plan was to paint a large mural on the walls.  Finally Toy Story won out and my plans changed. I love Toy Story but lets be honest, at Carters age this is a phase. If it gets him through the in-room prison part of this recovery than that is fabulous—but I am not about to make a permanent wall mural.

Google to the rescue….I came across this Toy Story room done by HGTV that has a much more mature look and used it as the general game plan to get started.

photo credit to http://blog.hgtv.com/

Progress:

Day 1:

  • Room gutted and cleaned
  • Painted all four walls blue
  • Moved dresser and armoire to room and placed along walls to provide as much open space as possible for access.
  • New curtain panels with black out liners

toy story theme room photo 1 showing color

Plans:

  • Make a giant etch-a-sketch calendar
  • Use vinyl wall decors to add the characters in. Using these instead of painting so that it can be removed quickly and painlessly when Toy Story wears out its welcome.
  • Communication Command Central to include larger Google TV, xbox and wii. Doing my research on Google TVs now.
  • Parachute men on ceiling

When it is all done I will do a massive post on creating a room a special needs respite room while maintaining some sense of fun. But until then I will update the progress on the project so that if any of you have some great ideas on how I can add to it….PLEASE CHIME IN!

Here Is The Thing About Being a Special Needs Parent…

The number one piece of advice that you get from well meaning doctors, nurses, disabled adults, the garbage man, the waitress and your family is………

treat your special needs child like every other kid.

Yeah, here is the thing about that-they are not like every other child:

  • Every child doesn’t struggle to get dressed in the morning because their legs won’t cooperate.
  • Every child doesn’t have an average of 2-3 surgeries or hospital stays a year.
  • Every child doesn’t have to turn down invitations to friends houses because they have too many stairs.
  • Every child doesn’t have learning disabilities that make learning certain subjects next to impossible.
  • Every child doesn’t have a major therapy goal to learn how to pour milk.
  • Every child doesn’t spend their birthdays, christmas, halloweens, being monitored for infections
  • Every child doesn’t have to be worried that the thing they are allergic to is hidden in every day items

So, this is my collective scream at everyone who loves to pass on that tidbit of well meaning advice. You know, the one who honestly has no idea what the hell they are talking about? I would gladly treat my kid like he is just like every other kid. But the fact is, he isn’t. BUT, just like every other MOM I love my child more than myself and that is why I bend over backwards to make his life the best it can be.

It Took Me 12 Years To Tell This Story

Changelog: August 16th

One of the best days of my life

One of the worst days of my life

My littlest guys birthday

A bridge to a new reality

The night before I was feeling odd. 34 weeks pregnant. Too early for it to be the baby coming. Went out to dinner for a ‘last chance’ date while the inlaws watched the oldest. Something wasn’t right. Left dinner early for a quick trip to the ER for an ultrasound. They patted me on the head like they had the 6 other times I had done this during this pregnancy, marked my folder with a ‘nutty mom’ and sent me on my way.

Next day…still not feeling good. “Stop being such a hypochondriac”, I remember saying to myself. “There is nothing wrong with the baby. If there was they would have seen it in all the ultrasounds or when they took your appendix out at 21 weeks pregnant. You’re a nut. Take a nap.”

Fell asleep for a few hours. “Maybe I should take a shower?” I thought. The warm water felt great and I made my way down the stairs where Bob was playing with a toddler sized Con. He looked at me with a strange face and said “I think we should go to the hospital”. “Really, why?” and then I felt the revolt inside my body happen. Oh my god! Was I really going into labor? It was too soon. The room wasn’t ready.

Bob called my mom who lived about 20 minutes away but I couldn’t wait. We sat in the driveway waiting for her to get there to take Con. All the doors in the house wide open as Bob had rushed me to the car.

Screaming at Bob on the I-10 freeway to hurry as fast as he could. I knew today was the day. My precious little boy was coming. A little early but OK…we would deal with that.

Got to the hospital and I was now screaming for the anesthesiologist. Where the hell was he? With each contraction I screamed louder for him. Finally a nurse grabbed me by the hand and told me “He isn’t coming. It’s too late. You are going to have to do this on your own. NOW”.

WAIT??? WHAT???? No, no, no, NO, that is NOT the plan here lady. It was my first lesson in learning that Carter had his own plans. Mine were about to become merely an after thought in this grand scheme.

….and then there he was. A little screaming ball of fury being taken over for his apgar scores since he was 6 weeks early.

And then we were jutted into an alternate universe. At least that is what it felt like.

Bells, alarms, lights, hurried codes over the speaker system. There was something terribly ‘wrong’ with the baby. They rushed him out of the room. Bob looked at me and in that brief second our lives irrevocably altered. I remember saying “GO. Go with him. I will be fine”. Because it didn’t matter if I was bleeding to death at the moment (I wasn’t). Carter was all that mattered.

Bells, alarms and whistles gave way to hushed tones, scared residents and quiet tears. It was a janitor who told me what was wrong. In broken English she said the two words that haunt me to this day: spina bifida. What? What was that? I read about that somewhere in a baby book I remember. But my baby doesn’t have that because I had the blood test for it. I had 6 ultrasounds. I had my appendix out for gods sake. There is nothing wrong with my baby.

But there was. At least in the physical sense. Because I can tell you as sure as I know my name that there is nothing WRONG with my baby. He is a beautiful, complete soul who happened to be born with an open spine. He is both one of the three loves of my life and my hero.

Each family, each person all have their own reality. Ours is both the same and different from the many people living with spina bifida. And while, no, spina bifida was not in my plans we try to live each day as if it were merely an after thought in this grand scheme.

This post is the kickoff to a blog hop being sponsored by another site of mine, Spina Bifida Connection. If you would like to read more peoples stories of living with spina bifida or you would like to link to your own post on the subject use the linky below!