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.

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

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!

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.

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!

I have a full conference pass up for sale on Ebay with proceeds going to Make A Wish Foundation. I had a great time at BlogHer ’09 and I am so bummed to miss out this year. But I am really happy to be able to use the ticket to help MAW! I am also offering to transfer my tickets to parties in the auction as the hosts allow. Some of these parties have been sold out for months or are exclusive invites so keep watching the auction and as I get permission I will list them.

*Update on the auction*

So to clarify: the auction is now for

• Full Conference Blogher10 Pass
• New York City Mama’s Celebrity Wax Party
• Sweets In The City Private Suite Drop in party
• The Peoples Party
• A Green Affair
• Sparklecorn
  

and possibly two private events to come.

In related news…
Carter had an appointment today as a follow up to last week. They did the same procedure again and are going to give everything 2 weeks to see how it heals and then make any surgical decisions. *sigh* The waiting is the worst, especially when he has to stay in bed. They did say he can go to OT (Occupational Therapy) next week so he is happy about that. He loves going there. His MRI looked good from last week though

In other news…. I took the first step in the Make A Wish process. I googled our Colorado chapter and left a voicemail. I also filled out the online form. Summer is their busiest time so I don’t expect to hear anything right away. AND OH! Poor Janna! My good friend called me from Vegas this AM completely freaked out that I was doing putting a Wish in for Carter. Make A Wish is not just for terminal diagnosis’ anymore. I don’t think that many people realize that.  Our local chapter says: “The Foundation will consider the wish of any child with a life-threatening medical condition who lives anywhere in the state of Colorado and who has reached the age of 2-1/2 but has not yet had their 18th birthday”. We were actually told to apply by a Child Life specialist in Vegas but then we moved and life happened. I always felt like we shouldn’t put in for one because we are able to go on trips and things like that and lets face it, besides a house full of Build A Bears what more could Carter want?? Oh wait, we have a house full of Build A Bears (175 plus). But then he started talking about how he wants to go on a cruise…

Once upon a time Bob and I went on a cruise where we both got sick and were confined to our cabins with that they diagnosed as Norwalk. The cruise line was sweet enough (thanks Royal Caribbean) to give us vouchers for another cruise. But as the expiration date got closer and closer it was clear we weren’t going to be able to leave Carter. I decided to take Connor (my mom came too) and have some special time. Ever since then he has had it in his mind that he would go when he was old enough. Every year I try to plan it and every year something goes wrong. Heck it is hard enough planning a quick trip to Disneyland for me. Planning a cruise and all the details that go with that is just overwhelming. And while Make A Wish does some amazing things, the true blessing is that they take the stress and worry away from the parents and just make it possible to have a normal family experience. We are busy looking up places he may want to go on his magical ship if they call. Right now he is just focused on the one thing Connor told him years ago that never left his mind…

they bring room service for FREE whenever you want it and you can ask for chocolate chip cookies at breakfast!

Sounds like heaven to me!

I have been a painfully lazy blogger lately. Life is happening and I just haven’t had time to process it all.

I had a rough couple weeks a while ago: letting go, changing directions, remembering what is most important. I think we all need those reality checks now and again.

Then I fell down the garage stairs in an oh so graceful descent and hurt myself. My first thought as I was laying face down on the cement with what I was sure was a broken ankle (it wasn’t, just a nasty sprain) was “Oh NO! I have the EVO Conference in 3 days”. I dragged my battered behind off the ground and drove myself over to the urgent care which is thankfully right next door to the most awesome PT place (have been going there for a few months since the boot camp injury). Between the two of them they got me pretty patched up and gave me some good meds to deal with the pain. Bob had to go to NY in the am so there was no chance for me to feel sorry for myself. I kept going and by the day EVO rolled around I was pretty good to go. By the time I came home it was pretty much completely healed. And so were a lot of other things about me.

So, the short version of EVO is that it was simply AMAZING. I had a GREAT time hanging out with my most awesomest McMansion roommate Complicated Mama. We had the most kick butt suite ever! It was so awesome that we held improptu parties there two nights. Next year we have decided to host the Complicated Chaotic Castle After The Jump Party (so pr feel free to line up to sponsor). I had a blast accompanying Corine on her first ski lift ride (and we will have dueling posts to follow on that adventure).

The long version of EVO is that I found a new direction. Old passions rekindled and new tools to ignite the fire. I spent a good deal of time collaborating with the Make A Wish foundation. I came away with such a respect of all people involved with this fabulous organization. I realized that while I have so many, many wonderful friends that read my blog not many of you know our story with the little guy. I forget when I say casually that Cart is headed back into the hospital for one thing or another that some of you have no idea that is such a normal part of our lives. I shock you and then I feel bad. To us, not much is a big deal. Going to the hospital for tests and procedures and even surgeries is as normal to us as you taking your kids to the pool. But I FORGET that you all weren’t there when he was born and through those first horrible three to four years and many of you haven’t been there when I have called my best buds down the street to watch Con while I run Cart in for an emergency. So I am finally going to tell the story. I don’t know how long it will take me. Its a 12 year journey at this point. But I promise to start unwrapping the layers. We are going to apply (finally) for Carter’s Make A Wish and I hope you will follow me through that process too. Don’t worry, it won’t be all doom and gloom and I will not be writing about it every blog post but it is time for me to tell my story. I will do my best to make it my story and not his. I am pretty sensitive to not exploiting or oversharing on his behalf. But I will tell you what I have been through, how I felt felt through the years and what I do to cope (beyond drinking a lot). I think it will do a lot to heal and help other moms who are just beginning the journey of having a child with significant medical issues. At least I hope it does.

I am not posting a PR Monday post today because I found this instead and as I am typing tears are running down my face. I didn’t have a particularly fabulous Mothers Day. It wasn’t for lack of trying on my husbands side. It was teenage drama and lots of work. But when I opened my feeds this AM, Laura’s post just struck me as something I needed to share as a belated mothers day to all the Mothers in the Children With Special Needs Sorority. I hope every mom out there had a wonderful day and to my special ‘sisters’ I hope this brings you happy tears.

To You, My Sisters
By Maureen K. Higgins

Many of you I have never even met face to face, but I’ve searched you out every day. I’ve looked for you on the internet, on playgrounds and in grocery stores.

I’ve become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring with experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my “sisters.”

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist’s offices and NICU units, in obstetrician’s offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn’t quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children’s special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children’s needs are not as “special” as our child’s. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know “the” specialists in the field. We know “the” neurologists, “the” hospitals, “the” wonder drugs, “the” treatments. We know “the” tests that need to be done, we know “the” degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during “tantrums” and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can’t understand what it’s like to be in our sorority, and don’t even want to try.

We have our own personal copies of Emily Perl Kingsley’s “A Trip To Holland” and Erma Bombeck’s “The Special Mother.” We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors’ front doors on Halloween, and we have found ways to help our deaf children form the words, “trick or treat.” We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We’ve gotten up every morning since our journey began wondering how we’d make it through another day, and gone to bed every evening not sure how we did it.

We’ve mourned the fact that we never got to relax and sip red wine in Italy. We’ve mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we’ve mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

….among other things. Around noon we took Carter to the ER because he had a terrible headache, couldn’t look up and started throwing up. It’s 6 now and we have come to find out that he has a raging infection. They have it off to the labs to decide how to treat. The infection is probably just a symptom though of something else going on. He and I are staying overnight in the observation unit of the ER. They will run more tests in the am to determine the possible causes. I will update when I know more.

He goes from feeling fine to feeling sick pretty quickly so it is easiest for me to just update the blog rather than take phone calls.

In light of this I won’t be posting for PR Monday tomorrow nor will I be holding the PR Monday Chat planned for tomorrow night. I am sure you all understand.

Update 1: It’s about midnight. They ran one round of IV antibiotics through. He seems to be feeling much better. He is keeping food down. Going to try to get some sleep if the crying baby in the next room would kindly cooperate. Lot’s of tests in the AM.

Update 2: It’s 7am. Carter and I were able to sleep for about 5 hours. I had the pleasure of sleeping on something that resembled a 4*4 piece of plywood covered in plastic. I thought the beds in the rooms were bad. This is like an ancient torture board. But, remembering many nights in Phoenix sleeping in a ER room with 4 other families and a plastic chair, I am grateful for the private room with a plywood bed. He woke up happy and feeling good. The neurosurgeon resident just said that they don’t feel he is in any immediate danger. We need to wait and see the NS when he comes in to find out what tests we are going to run to find out what caused this.

Update 3: We are home. No definitive cause on the infection. He has some heavy duty antibiotics for the next few weeks. Hopefully that will kill the bugs and get everything back to normal.

I am exhausted so I think I will check out for a little. I expect that he will get sick from the antibiotics. I know that last time when he had a staph infection those pills made him sicker than the infection.

Thanks to all for your comments. Love ya!

The boys last Saturday skiing at Breckenridge. Enjoy!

Just wanted to throw something quick up to say thanks for all the calls, emails, and notes for Carters surgery tomorrow. If all goes as it should this will be a super quick shunt replacement and we should be home Tues. afternoon.

I will update everyone through a whrrl story so you can follow that in any of these ways.You only need to do one of them to get the updates.

1. Sign up for an account there and add me as a friend: http://whrrl.com/ If you do this, you will get an email everytime I publish a new story.
2. Check the front of page of the blog for my latest whrrl story which over the next two days will be updates on how he is. Keep hitting refresh–it is good for my stats (hee hee)

and with that I am going to bed and leaving you with one cute Carterism:

Me: You are the cutest kid ever

Carter: Yeah, you can take that to the bank!

Many of you know my youngest is diagnosed on the autism spectrum along with many other disabilities. Someone sent me a message on twitter with this youtube video and I actually spent the ten minutes to watch it (which is, admittedly, rare for me) but MAN, I am glad I did. No matter what your spiritual/religious beliefs are I think many of you that have experiences with autistic kids will agree that she hits the nail on the head.

To get you to the salient part, start at 4:18