Yesterday (Friday) I had an appointment to visit Next Generation. This is a wonderful daycare/school just down the street from our home. Larkin has been on the waiting list since she was about 9 months old and they have called a few times but at those points, Larkin was still seizuring and I couldn’t trust her hitting her head on something in the classroom. Plus she was pretty much unreachable at that point. Little to no eye contact, no smiles and very low functioning.
A family had a part time position available to share with us 2 days a week. I thought that might work so I went ahead to check it out. I took my friend L with me as her daughter is about the same age as Larkin and if the spot didn’t work for us it could for her daughter. I had a few minutes to watch the classroom. I recognized two little boys that I know. Their mom’s were pregnant at the same time I was. I watched as little people ate their lunch in their chairs. They knew their cups from their friends and peeled their own fruit and interacted with each other. I watched as they picked up their plates with “two strong hands” and threw their trash away and then found their little cots for nap time. Some took a book to their cot and some just laid down with their favorite blankets. I watched. I absorbed. I giggled and I grieved. The two G’s of my life. I love watching children and how they work. I love watching their minds and bodies move along through life. I giggle watching them and I grieve knowning that I may never see this with my own little girl. I see it with Chase and I take full pride in knowing that his body is amazing. I grieve because Down syndrome wasn’t the worst of it. I grieve that she has been robbed of all that might have been – but I giggle knowing how far she has come. I giggle knowing that she ROCKS out in the seizure world. 🙂 I’ll take the accomplishments where I can.
At this same time last year we ate lunch at Redamak’s Burger joint in New Buffalo Michigan. It’s an annual stop for us and has been for years. Larkin couldn’t sit in a high chair at that point because I couldn’t trust that her head wouldn’t slam into the table from a seizure. She had to stay in her stroller and watch us eat. No smiles, no love and no eye contact.
Today, we stopped and ate as she sat in a high chair. I fed her lunch from her Ketogenic diet and she hung out – laughing, smiling, hugging, talking and giggling. My grief is there but for today it’s buried in giggles.