Monday, August 31, 2009

My own private gate

I'm back from holiday and delighted to share with you a guest blog from Jennifer Graf Groneberg (photo above, with her twins Avery and Bennett), author of Road Map to Holland: How I Found My Way Through My Son’s First Two Years with Down Syndrome, a memoir that provides practical insight and emotional support to parents of children with special needs.

Thank you Jennifer for this beautiful reminder that we are families first and foremost, and sometimes the focus on disability, difference and rehab has to take a back seat.

I'd like to know how other parents close their own metaphorical "gates" when they need a breather from the intensity of special-needs parenting. Louise

My own private gate
By Jennifer Graf Groneberg

I live at the end of a twisty gravel road in the mountains of Montana in a simple house, just two bedrooms, originally built by a man and his wife as a retirement home. They also built a gate across the driveway. It’s a thick wire strung between two steel posts sunk deep in the ground. When you pull it tight and hook it into place it feels final: gate closed.

We’d lived in this house for almost five years before I felt compelled to use the gate. It was the fall that the twins came home from the Neonatal Intensive Care Unit; the first fall we’d been living with the news that our middle son Avery had Down syndrome. I was tired, then, so tired. I didn’t want to explain anything anymore to anyone, I didn’t want to put on a brave face, or not put on a brave face. I wanted time to get to know my new family, time away from the well-wishers, time out. I put up the gate.

Just the act of stretching the wire across the driveway made me feel powerful. I had some say here. I could close the doors, if I needed to. We could have a break, now and then. I could say no. It was incredibly freeing, and I haven’t forgotten that feeling. The gate, and the lesson of the gate, have stayed with me.

When I am feeling low, or overwhelmed, or simply out of answers, I put up the gate. I play with my children, I bake cookies, I listen to music. We read books. We dance. We wear our pajamas all day. I sometimes cancel our therapy appointments. I say the kids are sick, or that our car has a sudden, unexplainable flat. I feel a bit guilty about these lies, but what I get back is worth it to me—space. A place to reconnect with my family. A place to stop being the mother of a child with Down syndrome, and simply be Mom. It’s so easy, with the gate up. Our family behaves as a family. Everything is natural. I sometimes forget that there is any trouble here at all.

But of course life moves on, as it must. The gate comes down. We go out into the world. We resume our activities. I reschedule all the appointments. I carry on as the mother of a child with Down syndrome. It’s okay. Most days, I am fine. Most days, I can bring that feeling of normalcy out into the world, and try to swing things a bit more toward acceptance. It’s what I do; it’s what we all do.

But when I am not feeling up to it, I know what comes next. I pull the wire tight and start canceling things, until it feels like time to get back into the fray. My own private gate, temporarily up while I’m under repair.


Today my gate is up! We're baking fudge and watching DVDs from the library. It's lovely!


Thanks as always, Jennifer! My gate is broken today. LOL
I'm pregnant and tired and having to be a single mom most days b/c my husband is so busy at work. He's finally on the way home now and I still have to go to the grocery store. UGH.
But it's definitely not the end of the world. I just need some sleep. And then some more. :)

I loved your post. My son has Cerebral Palsy and I too have put up my own gates. Canceling appointments is one of the more liberating options. Good luck to you and your family.

I never really thought of it that way, as putting up a gate. I absolutely cancel appointments for my daughter Emilia and close my "gate" so to speak. Give myself and family a carefree day. it's the best therapy sometimes.Sounds much better the way you describe it.

Hi everyone -- this is such a great concept, and really speaks to giving ourselves permission as parents to do what feels right in a particular circumstance.

In addition to cancelling therapy appointments, it could mean putting the gate up to friends or family who aren't supportive, or choosing not to "educate" a member of the public on a given day, when we're feeling particularly fragile.

Ben used to be seen by numerous specialists at our children's hospital and the visits always began with a resident interviewing us first. I'm all for education, but because Ben has a rare condition, this often meant an extra hour of time educating the resident on everything there is to know about Langer-Giedion Syndrome, even if it had nothing to do with why we were there.

I remember the first time I "put the gate up" at a visit to the endocrinologist, and said I wasn't interested in speaking to the resident, I would wait for the specialist. It was someone we'd seen numerous times who knew Ben well, and I wasn't in the mood to go through the A-Zs of Ben's condition -- with Ben in tow -- with someone we'd never see again, as a prerequisite to getting in the specialist's door.

The gate is an important coping mechanism! Louise