a day in the life (9)

"You should join a support group," a friend suggested, "it would help to be around moms who face the same challenges."

"Mmm...." I pretended to consider it but inside I was saying, support group? No thank you, not for me. All I could imagine was "Hi, my name is Kara, and this is my sob story." No, I most definitely wasn't going to be in a support group.

Yet, here I was. At an over-sized oval conference table with several moms and a child psychologist--a support group. I wasn't there intentionally, I had just fallen into it.

Shannon, the Kent County vision therapist, had invited Calvin and I to a session with the Active Learning Group--a group where kids engage in their environment with self-initiation and motivation. That's just a fancy way of saying you are a bystander to your child's play.  There's no loud talking, dangling of toys in faces, or moving their body in the way you want them to play. You let them lie on their back and find the toys as they swing their arms. Light boxes with different patterns lay waiting to be discoverd. It's all really neat actually.

Anyway, I stated something to the effect that I really didn't want to go. I don't like being in groups with other kids, it makes me focus on all the things Calvin isn't and yadeeyadaya. "No, no," Shannon insisted, "you need to come. There's other families like yours." Really? So I went that Thursday morning.

Calvin and I were having a good time in the room. He was sitting on the big ball enjoying the whoosh, whoosh, as he bobbed up and down with a delighted little grin on his face. I was just beginning to move him to the platform swing when I heard the door open and another family enter. The room was filled with a peaceful whirring sound; I cautiously (and as unobtrusively as possible) looked over.

A sweet little boy, maybe about the age of three, was in the chair. He had white tubes in various places, he was hooked up to a trach tube and ventilator. His mom, who looked about my age, calmly went about laying him on the floor and then suctioning him as if it were the most common thing in the world. And I guess it was, for her. 


I saw another beautiful toddler girl arrive. Her chair was the same one that Calvin should be getting in a month or two. The same chair that caused the words, "That is scary looking," to spill out of my mouth when the medical supplier arrived with the demo at my house. And maybe it isn't so scary looking. What's scary is that my boy needs that chair. The girl's mom and nurse carefully lifted her out of her chair and laid her carefully in front of the light-box.

Another toddler girl played in the corner. Her body was small, maybe the size of a two-year old, but she had hydrocephalus (large head). Her features on her face were disfigured with blond hair laying tousled on top. I sat there with my little guy and his little head (microcephaly) and was taken aback by the quiet peaceful demeanors of all the moms in the face of such loss and pain.

That's when the child psychologist came in and invited all of the mom's into the conference room (see above). I really had no polite way to refuse. What took place in the next hour opened my eyes to these everyday heroes. These women weren't here to exchange sob-stories even though their stories had more scars and pain than most people ever face. In fact, these may have been the bravest women I have ever met.

Calvin's homemade "Active Learning" center in the kitchen.

He found it!