Need a BlogHer ’10 Ticket?

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!

Sometimes Moving Forwards Means Falling Down

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.

Special Needs Moms Sorority

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.

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