But even though my husband and I are sharing our own giggles to ease the tension, we know that it's not funny at all. It's terribly sad and overwhelming to see your child's eyes fade in and out as they pet your cheek saying things like, "(mumble, mumble) you're the best mom ever mommy." There's no room for tears and no room for laughs. It's just quiet.
We've been living in and out of hospitals with two of our four children for six years now. We know where to park, where to eat, where the good DVDs are hidden, how to score a Tinker Bell pillow case and how to sleep upright. What we don't know and probably never will is how to deal with the stress we feel and the stress they feel, because stress wears many hats.
My hats:
Excessive cleaning
Excessive exercise
Excessive laziness
Inability to gain weight
Inability to stop eating
Staying awake for days
Needing 10 hours sleep
Their hats:
Excessive anger
Excessive sensitivity
Inability to sit still
Inability to stop talking
Ability to ignore everyone
Ability to seek all attention
Hatred of all things loud
Love of screaming
It's taken me a few years to recognize my stressers and theirs to the point where I can see them coming around the corner. But it doesn't stop it from coming. There are so many ways that we can play over in our heads the decisions we make for them and the consequences those decisions give birth to. What I do know is that we are headed in the right direction, but we just didn't quite expect the road trip to last this long. Obviously, I would have packed sandwiches. But even as I write it, I know 6 years would seem like a flash of light if they were gone.
The school year is almost over and I feel like I'm embarking on a new phase in our family with two children in elementary school. Not just any two children, the two that fought so hard to get there. The two that now in close proximity on a daily basis to "typically developing" children worry and excite us. Things that are normally exciting to families are glorious to us because we weren't positive that we were going to ever make it here.
The weekend before yesterday's surgery, we asked Adelina what she wanted to do. I was figuring on something ridiculous like "Watch TV" or "Eat colored cereal." She wanted to "bungee" jump at the carnival. It was Mother's Day Weekend... I spent most of it worrying and cleaning and making mental check lists. I couldn't think of a better thing for all of us.
When we got there, the guys were on a short break. He took one look at her and a young boy with Downs staring (or panting like dogs, don't judge) at the trampolines and opened the lines for them. A line started to form behind them and no one seemed to complain that these kids were taking up a 15 minute turn each. I was speechless watching her float thru the air. She wasn't laughing. She wasn't nervous. She was calm and happy. The sun was starting to set and the light was beaming thru the leaves on the tree behind her as she jumped over and over, looking up to the sky each time with a still face. When she was finished, all she said was, "that was fun." Enough for us. Enough for all of us. I don't know what life has in store for them, but as long as that's what they can say about it, then I'm indeed happy.
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