img_2413While Graham and Kevin ran to the library and then to get Grace birthday cupcakes today I fed Grace. As I fed her I turned on Gilmore Girls- the pilot episode.

When I was home on maternity leave with Grace – no knowledge of what was to come- only dreams of how it would be as she grew- we watched a lot of Gilmore Girls. I loved all the relationships on the show – some complicated, some easy, some fun, some hard, all with some kind of love holding them together.

 

And the theme song…
Where you lead, I will follow
Anywhere that you tell me to
If you need, you need me to be with you
I will follow where you lead

As a new mom, I was sure that I’d be able to go wherever Grace led. I imagined our family as a team navigating life ahead. I never considered that we’d take an alternate path.

As I held her today in my lap, feeding her formula through a syringe and tube, watching Gilmore Girls, in some ways, it wasn’t so different from those long ago days snug in the living room of our house on Carpenter Ave. In reality, though it’s much different.

She’s four feet six inches tall now (a foot shorter than me), currently weighing in at 76 pounds. Holding her and feeding her is becoming a bit more challenging. She’s undergone several surgeries. She has seizures. Once they started we’ve never really been able to make them stop. We had to leave our little Carpenter house for a house in Johnston in order to achieve the integration and education we wanted for her. In some ways that has been brilliant, in other ways it’s a continuous struggle. We’ve never had long conversations or embarrassing ones. She did, however, the other night at dinner use her talker several times during the meal to say “I love you,” “no,” and “I want to watch TV”. She’s not playing any musical instruments, singing, or playing any competitive sports. She is, however, a pretty good tambourine player when accompanied by her music therapist, loves toys that play music, calms when I sing to her, and plays a little baseball – where no one ever loses-with Miracle League.

Way back then I’m sure I wanted her to try dancing – although I didn’t imagine the team it would take to have her dance. I’m very grateful that dream came true.

Even when we’d just had Grace we always knew we wanted a brother or sister to join her – to make our family complete. Graham has brought noise to Grace’s life and competition for our attention that she doesn’t always appreciate. This morning when she would rather have slept in Graham insisted she get up at 7 am. As Kevin went in to wake her up Graham turned out all the lights and asked me to hide in the kitchen with him so we could jump out and yell surprise when she came into the living room. I never would have thought to do that. But Graham has forced Kevin and I to think bigger. There were so many things we didn’t know about growing up based on our experience with Grace.

There are a lot of things I wish for her that I’m unsure of still.

I wish I knew that she had friends in her class in school. On tough days I find myself annoyed that any child that comes into contact with Grace seems to be referred to as her friend. I’m feeling truer friendships just won’t ever come and stick.  This does not mean that she is unloved or doesn’t have a community. It’s not the same as that. It’s so hard to explain.

I wish she could have the independence that comes with an experience like college or a trip by yourself. But she will always be dependent.

I wish for her to experience some of the really fun and beautiful places in the world but recognize it will be physically harder for her.

I wish for her to not fade as she gets older. I don’t want her to be less and less in the world.

I wish for her likes and interests to expand because as you get older the world gets bigger. Kevin and I will have to drive that for her.

All of that to say that it’s not going to be exactly the Gilmore Girls song way.

There are times we will lead Grace, way more than we ever will for Graham.

There are also times we will follow her as we work through the system of checks and balances in place for her in the world. We will also follow as her health needs, physical abilities, and communication change. And we will lead the teams and people that surround her to accommodate those changes.

It will be complicated at times, easy at others. I hope we will have fun, but the reality is there will be hard times. Through it all our future will always be based in love.

As the past 11 years have gone by I’ve often caught myself singing Grace the Gilmore Girls theme song. I still will. Even though the meaning isn’t the same as when I began singing it to her – it still applies.

So Happy Birthday Gracie Lou! I can’t believe you are 11. You are wonderful. You are kind. You are funny. You are brave. You are strong. You are quick. You should not be underestimated. I love you very, very much.

 

And …
Where you lead, I will follow
Anywhere that you tell me to
If you need, you need me to be with you
I will follow where you lead

Love, Mom

Advertisements