Elementary Spirits, A Very Chaotic Denver Mom Blog » spina bifida http://elementaryspirits.com Mom blog in Denver with homeschool advice, pr talks for mommy bloggers, and general insanity. Wed, 31 Aug 2011 19:05:48 +0000 en hourly 1 http://wordpress.org/?v= http://elementaryspirits.com http://elementaryspirits.com/wp-content/mbp-favicon/favicon(3).ico Elementary Spirits, A Very Chaotic Denver Mom Blog It Took Me 12 Years To Tell This Story http://elementaryspirits.com/2010/09/it-took-me-12-years-to-tell-this-story/ http://elementaryspirits.com/2010/09/it-took-me-12-years-to-tell-this-story/#comments Tue, 28 Sep 2010 20:20:47 +0000 Barb http://elementaryspirits.com/?p=2723

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!

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]]> http://elementaryspirits.com/2010/09/it-took-me-12-years-to-tell-this-story/feed/ 18 Look What the Easter Bunny Brought Carter… http://elementaryspirits.com/2010/04/look-what-the-easter-bunny-brought-carter/ http://elementaryspirits.com/2010/04/look-what-the-easter-bunny-brought-carter/#comments Mon, 05 Apr 2010 01:29:14 +0000 Barb http://elementaryspirits.com/?p=2167

….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!


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]]> http://elementaryspirits.com/2010/04/look-what-the-easter-bunny-brought-carter/feed/ 13 Quick Note http://elementaryspirits.com/2009/06/quick-note/ http://elementaryspirits.com/2009/06/quick-note/#comments Mon, 29 Jun 2009 05:08:38 +0000 http://elementaryspirits.com/?p=745

shortstory(1)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!

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]]> http://elementaryspirits.com/2009/06/quick-note/feed/ 2 Welcome to Holland http://elementaryspirits.com/2008/03/welcome-to-holland/ http://elementaryspirits.com/2008/03/welcome-to-holland/#comments Mon, 17 Mar 2008 03:59:00 +0000 Barb http://elementaryspirits.com/?p=21

One of my amazing friends whom I have never actually met in person is going through the very difficult loss of a little boy with spina bifida. Years ago I started an international support forum for people with spina bifida. I met my friend here. We emailed back and forth for years, we kept in touch when I had to shut down the board temporarily, I sent her stuff to help her son that they do not have in Northern Africa, we ‘speak’ weekly :) No, thank God, it was not her son. My friend is a support contact in her own right in her area where information about spina bifida is not so readily available. She is a source of inspiration to mothers all around her area who come to her for help and advice. It was one of these little boys that she has helped and loved. She remembered this poem (story?) and asked me to send it to her for the family. It reminded me that I should share it again for all the moms (and dads) for whom the birth of their child did not turn out quite the way they expected. It is one of my favorite stories of all time and it makes me smile and cry every time I read it.

WELCOME TO HOLLAND


by
Emily Perl Kingsley.


I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

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]]> http://elementaryspirits.com/2008/03/welcome-to-holland/feed/ 2 Hospital Thoughts http://elementaryspirits.com/2008/03/hospital-thoughts/ http://elementaryspirits.com/2008/03/hospital-thoughts/#comments Mon, 10 Mar 2008 00:30:00 +0000 Barb http://elementaryspirits.com/?p=18

So, while I was in the hospital I did a lot of thinking about the past year especially and how happy I am that we are now homeschooling. Sitting there watching Carter sleep hooked up to so many machines made me think about how many nights Bob or I have done this, about how little control we have over him and his health, how many years we wasted trying to maintain the status quo. I could kick myself for not listening and being strong enough years ago to follow my heart and not put him in school. I always wanted Carter at home with me but I let everyone talk me out of it. I listened to all the comments of how not going to school would make him reclusive and wouldn’t give him the real life experience that he needed. My solution was to be the PTA President and then a teacher at their school. It was always my way to be there with the boys as I never wanted them far from me. Almost a year into this (May of last year was really the last time he attended school for any regular basis) I laugh at all of that. When we first started homeschooling, we followed all the rules :) We did a curriculum every day, even though he hated it most of the time. I remember one frustrating day of actually yelling at him to pay attention to some stupid lesson he was not at all interested in and that was the day I became an unschooler. I didn’t know at the time that there was a real term for my newfound philosophy. I just realized how stupid it was to keep pushing him to be ‘grade level’ and prove that I was right in homeschooling him. Unschooling has been the most incredible thing to happen to our family. It has given control back to Carter over a life that he previously had very little control. You could see the changes in him during this hospital visit. He advocated for himself, insisted that everyone tell him what was going on, told people to leave him alone when he had enough. He saw how little control he had in this situation and fought desperately to gain it back. Perhaps that is because he is getting more comfortable controlling his own life through unschooling. It hit me as a watched him sleep how much unschooling has given him and our family. Now, I will admit I a much less confident unschooling mom of Connor. He has some big goals and I struggle with the boundaries of pushing him to do now the things he needs to accomplish those goals. I suspect as Connor fully explores his freedom, his goals will change. He will see that there are many more roads for him to travel now. At 11 years old he started his own company and website. Yes, he gets a lot of mom support with it but it is his in the end and it is becoming very successful. He wants to explore this more, getting more involved in building business relationships, controlling the site finances, and delving into more advanced coding. I know that he has the drive and spirit to be successful in whatever he chooses. My hope for him is that he learns to be HAPPY in whatever he chooses. That is my hope for Carter as well. More than anything, the boys both need to learn to control their own lives and destiny.

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