This is what it’s like to live with Down Syndrome
Kids make all us parents home-bodies. Even my first child did. I like being home more than most I suppose. But with a special needs child, I find myself canceling out many events I wish I could have gone to.
A few weeks ago, friends invited me to climb the highest peak in Costa Rica: Chirripo. This stuff is right up my alley. I’m a backpacker and love the outdoors. It’s been years since I’ve gone. When I first arrived in Costa Rica I jumped right into the scene and went for an incredible several day canoe trip. I’ve been river rafting here. Then came the kids. I’ve managed to haul my daughter for over three years in a backpack while traveling the U.S., Costa Rica, and Europe, and we even dabbled in some light hiking. No so with my son.
First, when I tried the backpack, he was too slouchy and would slip into it. Then, we we got over that - a year later - he pulled my hair and got so many laughs from everyone, I couldn’t quite figure out how to get him to stop. Then he grew and became accustomed to strollers so now that he’s almost three, I have no desire to haul him on my back, which has seen enough stress over this kid’s lifetime.
I decided to go on the hike up this mountain. I said: Yes! It’s my time. I began calculating care and how it would work. I even started fantasizing about backpacks and boots (something us hikers are a little nutty about). Then - as if a note was delivered right to my door - my son had an allergic attack in the night and couldn’t breath. I was minutes from packing him up to go to the hospital. I sat by his bedside, laptop open, plugging in anything to find an answer on which drug to give him or some miraculous herb I could wave in the air that would make this all go away. The nanny sat by my side. All my nanny’s are fantastic support, but I realized this was just too much responsibility for them. And as single parent, I’m sort of stuck with this for now.
That’s what I keep telling myself. For now. Other kids have allergic attacks and know what it’s like when a child can’t take in air. It’s scary. The thing with all my child’s needs is just that. There are a lot; and they all happen at once. The struggle to exist - and then thrive - is a tremendous challenge in these early years: the walking, the speech, the digestion problems, breathing problems, development concerns…..
So, I can’t leave my son alone with someone else right now. Chirripo will have to wait. It’s an awfully big mountain. I bet it will still be there when I’m ready.

