Creating The Year 2010

Every year, especially around the time of my wedding anniversary, I hear comments about how X percentage of couples that have one child with a disability, get divorced. And how Aaron and I have truly beaten the odds by having a marriage survive this long with both of our children having disabilities.

I don’t care much for statistics- I’ve shared before that one in one thousand children are born profoundly deaf AND one in one thousand children are born with Spina bifida. Aaron and I got one of each… go figure. I am no expert in statistics, but from what I hear the likelihood of getting two – one in one thousands is actually- one in a million. There’s something about that that makes me smile. (Dear stat experts, if it’s not true, don’t burst my bubble… just keep it to yourselves)

I do like to think we have somehow beaten the odds. But, I don’t want to lead you astray either. See, it has not always been pink and rosy. No actually there were years… YEARS and YEARS where when we were asked how we manage it all, the answer was this, “Well, neither one of us wants to do this alone.” (Not super inspiring is it?) Even three years ago, if you had asked how Aaron and I “keep it all together” I would have told you, “Neither one of us wants to do this alone.”

A few years ago, I was sitting outside with Lucy on my lap. It was night and I was pointing out the three constellations that I actually know. As we sat under the stars, Aaron’s shadow was cast along the wall as he walked through our house. “I love that man.” I said.

Lucy quickly responded, “Well you sure don’t act like it.”

I was stunned. My first thought was to start listing all the ways Lucy was entirely wrong. But then I realized, maybe I could learn something here. I mean, Lucy lives with us and I was curious to know what her experience was.

I took a few breaths, then I tried to act a little disinterested, still looking at the stars above, “You think so Lucy?” I said, “Tell me about that.”

“Well. You never hug or kiss him and you never say ‘I love you’ to daddy.”
(Ouch! No, really- OUCH! She was right! That was bad news right there!)

“Hmm. You know what Lu? You’re right. Those are things I am going to work on. Thanks for helping me see that.” (But, still… ouch!)

We came inside the house. Aaron was doing dishes. I put Lucy in her chair at the kitchen table and walked up to Aaron, put my arms around his waist and said, “Hey, I love you.” (Was that surprise I saw in his face? Worse yet, was he shocked?)

“What did I do to deserve that?” He asked… (Oh great, he’s actually suspicious of me!)
And before I could come up with an answer a little voice from the table said, “Good job, mom! That was much better!”

I started thinking about what happened over the previous ten years. What happened? How did I go from falling madly in love with this guy, to having a fairly casual relationship based on a division of responsibilities?
You do the wash. I’ll put it away.
You do the dishes. I’ll cook.
You’re in charge of soccer. I’m in charge of art class.

Our marriage was not about loving each other or even enjoying each other’s company. Nope. For a very, very long time, our marriage was about survival. It was easier to deal with the day to day together than it would be alone. We had our kids and we both loved them very much.

Since I am not raising typical kids, I cannot speak to how it is for those of you who are. What I know is this, once we discovered Leah’s deafness, and then Lucy’s disabilities followed, well, it seemed that Aaron and I were engulfed in a spin-cycle of drama and survival.

With Leah it was assessing and doing our best to assure her “survival” in the education system. Contributing all we could to ensure that she would come out on top, or at least ahead of the very low expectations set for deaf children. See, we had been told to expect her to graduate from high school with a 3rd grade reading level. (Not on my watch!)

And with Lucy, “survival” was quite literal. Starting with our 18-week ultrasound, we did not know if Lucy would survive the pregnancy. Would the hydrocephalus (water on the brain) impede her brain’s growth too much? Then we had fetal surgery at 22 weeks. If Lucy had accidentally been born during the procedure we would have to make THE decision. And then post-op, she was (incorrectly) diagnosed with holoprocencephaly AKA Cyclops disorder. They told us her brain was missing the corpus callosum. We were told that she would not likely survive her birth.

But she did.

And then Lucy was diagnosed with cerebral palsy at nine months. And around that time there was a night where she seemed very lethargic and unresponsive. I rushed her to the ER in the middle of the night and the doctor told us if I had waited until morning, we would have lost her. Her entire system was septic. Her body was poisoning itself.

After that, month after month she had life threatening infections that would require daily shots of antibiotics in her thighs, one shot a day for 10-14 days in a row. I would pull into the hospital parking lot and she would begin whimpering. She wasn’t even a year old.

Aaron and I were ever watchful. We became experts in things no parent imagines. On the frequent ER visits, I would rattle off her medications, past procedures, daily procedures, hospital stays, surgeries and all of her doctor’s names. The nurses and doctors would ask, “Are you a nurse?”
“No” I answered, “I’m a mom.”
“We know you’re her mother, but are you also a nurse?”
“No,” I answered impatiently, “I am not a nurse. I am just a mom.”

But operating at such a high stress level changed the relationship of the “grown-ups” in the house. We were always focused on the girls. Always.
We didn’t even realize it.
If I had been aware of it, I don’t think I would have done anything differently. Would I sacrifice my marriage for my children’s well-being? Seems an odd question, since you could argue that a divorce would also affect their well-being. But, I already know the answer because for years we did just that.

And then one of the little girls I was so focused on, turned the tables and showed me that she was focused on her parents. She had been watching us. Her words, “Well, you sure don’t act like it” stung, but they only stung because I knew that Lucy was right.

We had allowed ourselves to fall into a default relationship in a default life. We were just reacting to the things going on. We were not choosing and creating what we wanted!

That year we sat down and as we planned out our year, we decided it would be: The Year of No More Somedays
And it was! We knocked off our biggest “someday purchase” and bought our pop-up camper, a camper we had talked about buying for 10 years, and we immediately started camping in it.
That year we also shot 13 new Signing Time shows and brought Signing Time to public television.

The next year, we sat down and created: The Year of Fun & Adventure
We went to Ghana, Africa.
I was nominated for an Emmy.
We went to Cancun and had the “strong enough” moment that would change all of our lives.

The next year, (last year), we sat down together and decided it would be: The Year of Health & Fitness
Need I say more? There was SCUBA, Aruba, Disneyland, and Yellowstone, plus two half-marathons!

We haven’t created 2010 yet, but I have some good ideas.

The Year of Yes
The Year of Disappearing Debt
The Year of New Heights & New Experiences
The Year of Miracles & Dreams Coming True

I encourage you to create 2010 for yourself, especially if you’ve never created a year and then lived into it. Create your theme with your family and loved ones. You don’t have to know what you are going to do to fulfill on the theme you pick, just pick a theme that makes you smile. Make up a theme that’s worth getting out of bed for each morning, and then, throughout the year you will start seeing opportunities to fulfill on your theme. I’ll let you know which theme we choose and I’d love to hear about yours!
P.S. Feel free to steal other peoples themes (or any of mine) if you see one that speaks to you.

64 thoughts on “Creating The Year 2010

  1. Rachel, came across your blog from Twitter and I am so glad I did. We have actually met…I planned the “wake” for Jed at Westminster. Before that moment you were a celebrity to me and my family and now not only are you a celebrity, you and Aaron are amazing people with a beautiful life, beautiful children and a beautiful, real marriage. Thank you for your words. I have been trying for the last 32 days to figure out what 2010 will be for me…but my first thought was The Year of Strength and The Year of Cheap Adventure the second. Thank you again.

    [Reply]

  2. Pingback: Shaping 2010 | Mindy Long

  3. Oh, Lucy. Our Eldest has busted us on the same point. And as useless and infuriating as the stats are (are the staticians waiting for us to prove them right?) there’s a reason for those scary, high numbers.

    It’s hard to carry the load, and to remember to love the guy who is schlepping alongside me. Some days (extra meds, unexpected diet change, wearing the mom-medic hat, school meetings, school meetings, school meetings), it’s harder yet. Especially since the sweet, naive, young guy that I married is not at all the guy that I’m parenting with now. Nor am I the young, silly and hoo boy naive girl that he married.

    I think we left them behind, one or two diagnoses ago. But I also think we’re doing fine without them.

    Thanks, Lucy. And oh, yes: I think we’re going for the year of balance. Balance needs and wants, stuff we have to do and things we want to do, time together and time being responsible people who buy groceries/fold laundry. Here’s hoping, anyway…

    [Reply]

  4. I discovered you through a friend whose son was obsessed with Signing time. Our family has had its own share of surgeries and grieving, and she thought I’d appreciate hearing from someone else to decided that laughing into the darkness was the only viable option. :) (Of course, then MY kids discovered ST and I ended up certifying through the Academy, but that is a whole different story).

    Your battles inspire those of us going through similar hard times, Rachel. Thanks for your honesty.

    [Reply]

  5. Thanks for the blog. I read every one of them and am always inspired. For me, I haven’t sat down with my family yet, but I think some of our themes might be:
    The year of connecting with others’ and creating friendships. We are new to our town and have some family around us but haven’t braved the task of connecting with other families’ and other children for our son to spend time with outside of daycare.

    It will also be the year of making our home and yard more accessible for our son to use.

    It will be a year to advocate and make sure our son has everything he needs to lead a full quality life.

    I think I agree with the one year you had – the year of no more somedays.

    Finally, it will be a year of improved communication. We do very basic sign and are looking at picture communication, but none of it can happen soon enough for me – in terms of getting resources and starting on projects.

    Thanks again!

    [Reply]

  6. So, do you want to know that your stats are great? (multiply.)

    My mom had challenging kids to raise, often putting her in awkward situations. She says it helped her learn to deal with every situation.

    To prevent the deafness of one from resulting in a 4th grade reading level, she went with Cued Speech. It worked. (Now, it’s mostly ASL.) I’m impressed with her and you. Keep it up, and it’s great to have kids. They offer such surprising insight, no matter who they are. And now matter how you choose to do deal with unique children, it takes dedication and commitment to raise them well. Keep up the great relationship you have built with your family. Good luck!

    [Reply]

  7. I have just recently learned about you from seeing you on Noggin….I googled your name and it brought me to this blog and to tears. What a wonderful, smart, inspiring woman and mother you are. Thank you for sharing your story. I will love following your story from now on.

    As for a theme for the year…you have inspired me to find one!

    [Reply]

  8. didn’t dawn on me till the end of the article who you were. i love the stats paragraph… deafness + autism. I always say I live outside the stats. or off the edge of the curve. just recently realized my own DH issues. trying to recapture the love of our youth. Thanking God for facebook because w/o a friend posting I would never have found your blog. awesome. I actually have a dream about DH and I at our 20 year anniversary..2 1/2 years away.. i’m going to start focusing and working on that dream

    [Reply]

  9. Hi Rachel.
    My name is Lindsay. A stranger on Facebook recommended your Signing Time DVDs (I saw that she was a sign language interpreter, so I contacted her for suggestions). My entire family has been watching and loving every minute of them ever since! Earlier today, I stumbled upon your blog, and this particular entry really hit home.

    One of my twin babies, Elena, spent almost a year in the Neonatal Intensive Care Unit. She was born with a melting pot of congenital anomolies, and has been resuscitated more times than I care to remember. She was born with only one lung, and an airway that was 80% collapsed. Her esophagus was not (and still is not) connected to her stomach, but rather ended in a blind pouch at the top, and connected into her airway at the lower end. Her intestines were not connected to her stomach either.

    Due to the collapsed airway, Elena ended up with a tracheostomy. Because of the fact that she only has one lung, we weren’t able to use the Passy-Muir Valve (her talker) until recently. To make a REALLY, REALLY long story short…we started signing with her a lot since she came home, but recently I have been feeling like we were at a stand-still. We have made a committment as a family to learn more sign language. It really allows Elena to develop her own voice in an otherwise loud world!

    Your post speaks to me on so many different levels! As a mother of a baby who has so many rare anomolies bunched into one gorgeous, vibrant little girl…hearing the statistics gets pretty old. You have a wonderful outlook, and I look forward to following your blog!

    Sincerely,
    Lindsay Perez
    www.caringbridge.org/visit/elenaperez

    [Reply]

  10. We have the Baby Signing times dvds…and was thinking about other Signing Times products and came across your blog. I found it quite inspiring! Thanks. As I read more and more of it…I’m quite impressed with your ability to express your thoughts and how you and your family have come together now only for your girls but everybody. And then imagine my surprise to see you reference the corpus callosum…as my youngest son has dysgenesis of corpus callosum and he why we investigated sign language. Thanks again for being an inspiration for me to continue forward with my boys…

    [Reply]

  11. OMG this post feels like I am writing about my own life! The morphing of a marriage into separations of duties. My eldest is now 5; she also has cerebral palsy. We started signing with her when she was 9 months, due to suspected deafness. She passed her hearing test, but was essentially mute for the first 2 1/2 years of her life. She could sign over 65 words by the time she spoke her first word–what a LIFESAVER, and I’d have never done it if I hadn’t heard of parents like you teaching their babies sign language.
    I want to create my 2011! I’d try to create the “rest of my 2010″, but I need more time to prepare!

    [Reply]

Leave a Reply to souldose Cancel reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>