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.