When I had the boys, I had so many places I could turn for parenting questions. I could ask my mom, or Steve’s mom, or my sisters or my friends about various infant issues. Even though my two sons were very different babies, they were both in the realm of the “typically developing” child. Therefore, I could always find someone who would say “yes” to the question, “did your baby do THIS?”
That was not true with many of Maggie’s issues. When Maggie was a baby, I was desperately trying to find my footing, trying to find answers to questions about raising a child like Maggie. My mother raised seven kids, but she did not know anything about gastrostomy tubes or colostomies. (Go figure) I had to find other places to ask those types of questions. Of course, many of the questions were medical, and I have always had wonderful support from doctors and nurses and especially from her pediatrician Eileen Aicardi; but a mom needs someone to brag to and commiserate with about the successes and setbacks of parenting a baby.
In order to find that support I had to go outside of what you might call your “natural support” system. I had to find other parents in similar situations. I could celebrate the day Maggie raised her hand to her face for the first time, even if she was eight months later than her typically developing peers. I started going to the “Tuesday night Group,” which was a support group hosted by Support for Families, a nonprofit organization in which I used to be very active. I heard about it long before I went because I was sure it was not for me. Various therapists working with Maggie were encouraging me to go and connect with other parents, but I thought I had all the answers. I finally went, with some hesitation, mainly just so I could tell them I did and get them off my back.
That group became my refuge. We would spend two hours every Tuesday night sharing our stories and the successes or failures of our children that particular week. More Tuesday nights than not were spent laughing at the foibles of the system and the frustrations of trying to adapt a complicated set of services to meet the needs of even more complicated children. There were plenty of times there were tears too as we shared the constant crush of bad news. The parents in that group, mostly moms, bonded and became friends. We could turn to each other about issues with wheelchairs, medical supply companies, special ed and doctors. Best of all, we could brag about our kids to an audience that listened enthusiastically and celebrated every tiny victory.
Helen Rossini moderated that group with ease and grace and brought out the best in all of us .I went for a couple of years and met some people there who have been my friends ever since. There was a core group of about eight or nine of us with kids around the same age. We started going out to dinner when we outgrew the Tuesday night group. The dinners waned a bit over the years, perhaps one or two of us getting together here and there. However, we always caught up with one another. The group endured. A couple of the kids have passed away over the years, but those moms are still part of our group. One mom moved away, but she is as much a part as ever.
Six of us got together for dinner this week for the first time in about three years. Appropriately enough, it was on a Tuesday night. It was as if no time had passed. These women helped me in a way that no one else could have at a time when I needed it most. And I helped them right back. It just so happens that the women in this picture all have daughters with special needs, but I only realized that when someone said it the other night. It was not the “girls” that brought us together, it was their status as “special” and that applies equally to boys and girls. In fact, one of the missing members of our group has a son and he was always at the center of our stories. Hopefully, she can come to the next dinner. Hopefully it will not take us three years to get around to it.
So thanks, ladies. I would not be where I am today without all of you and those missing from the picture. You know who you are.