Wednesday, June 28, 2006

Why it sucks to go to Babies R Us sometimes!

A few weeks ago, I was looking through some old archives at an internet message board where I’ve been a member for approximately 6 years. The topic of the board centers around Moms with children born in January 2001 – a “Mommy Playgroup” if you will. And this particular playgroup centers on my “typical” son, and not my “special needs” daughter.

I found a post I had written about some of my difficulties early on with Jenelle. It was moving to see how far I’ve come – but also a reminder that this journey through the land of special needs is such a roller coaster of emotions. I thought I’d share parts of that post here, so you could remember that you once felt the same, or maybe that someone new to this experience will find comfort in knowing these feelings are very normal.

read more

August 19, 2003
(note: Jenelle was only 9 months old at the time, and at this time, we did not know she was having seizures. We just knew that she was "delayed" and did not have any other diagnosis.)

I haven't shared any of this here yet... I mostly post these feelings on the support group boards I've found for special needs kids. I just realized that I should share all sides of this with all of you and not just share Jenelle's updates and improvements, so here goes …

I had to go to Babies R Us last night to get some formula -they are the cheapest around for the bulk size of Good Start. It didn't bother me before, but now it gets to me. You see all these babies, grasping at things on shelves, sitting up, babbling, etc. Then you see all these baby gifts like baby books, milestone charts, calendars, teething rings, walkers, bicycles, etc. I look at some of the toys, and think, that might help Jenelle, and then see the age range is for a baby 0 months to 6 months and that reminds me again. That part of this journey is so hard.

Two weeks ago I hit my low, and posted about it at a special needs board. Everyone there understood what I was experiencing and I got some great feedback and support. Then that night, I went grocery shopping, and at the checkout the cashier asked if I wanted to donate a dollar to “Jerry's Kids” and I lost it again mumbling while fighting back tears that I had my own “Jerry’s Kid” at home. Friends of mine are pregnant again or have recently had new babies. It hurts to hear about their newborns and their recent accomplishments. I keep them posted about Jenelle, but I never share these feelings I'm sharing here. It hurts to hear that a 3 month old has mastered rolling, to know that Jenelle only started doing it last week at the age of 6 months. It hurts to hear a Mommy complain about her Baby pulling her hair, when I wish Jenelle would even take an interest in playing with mine.

I get over these feelings pretty quickly and remember this is a stressful time we are experiencing, and that I'm not the first parent to have a child with special needs. Then I go to Babies R Us for formula... and I’m hit with the pain all over again.

Just wanted to share that I am experiencing both sides of things. I know you all would understand.

Remember the pain of the unknown? How do we overcome it – or do we just learn to accept it? These feels are still fresh, but the sting isn’t as painful. There is hope and things do get better. If you are just starting this journey – remember that! You will find a way to survive, and make it through!

Tuesday, June 13, 2006

My Own Private Gate

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.
read more

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.