Everything Old Is New Again…………
Some stuff I’ve posted on other forums. Maybe someone here can identify or relate……
Written and submitted May 4, 2004
Five years and roughly eight months ago I called a virtual stranger on the phone. I had heard her name through her son, with whom I worked previously. He had told me that his mom, “worked to make sure that little kids in our town with disabilities got the help they needed”. So on that information and the fact I knew this young man’s last name, I looked them up in the phone book and dialed the phone one fateful evening.
For the next hour and a half this stranger told me what kind of life the newborn baby boy in the hospital nursery was going to have. I had called her to ask her if he would have anything in the area code of a “normal” life. He was born with a genetic anomaly. It was certain he would have physical delays and there was a list of possible medical problems associated with his genetic make-up. He would most certainly have cognitive delays. I remember hearing the word mental retardation. It was all overwhelming and I remember feeling a little frantic inside as to whether I was the “right” parent for this baby.
So this woman I had only met in passing, talked to me in excited tones telling me all about how much better life is now for babies and children with disabilities. So much better than when her now-adult son who has a disability was born. That now children have access to “in home” early intervention supports and services. That I could have as much or as little “intervention” as I wanted for him. That as his parents we would be the leaders of his “team”, whatever that team might look like: therapists, teachers, doctors, specialists, etc….
And then I remember the next thing she said like it was yesterday. She said, “And he’ll go to the church nursery and play with the other kids, and he’ll go to regular pre-school, and then he’ll go to regular kindergarten and first grade, so on and so on, and he’ll be in Cub Scouts if he wants to and he’ll play T-ball if he wants to. He will do everything that interests him and that you expose him to.” I got off the phone feeling hopeful. That that little baby on oxygen was going to somehow be okay. I had confidence there were people ready and waiting to help us help him make his way through this world.
Today I remembered that evening as my son and I walked into his new elementary school to sign him up for kindergarten.
Tonight as I write this with tears of gratefulness in my eyes I thank Kathy Serena for being my messenger of hope and promise that night. And to all the other “Kathy Serena’s” around the state (that I know of, and I know there are many, many more): Carol Meredith, Dianne McNamarra, Meg Day, Julie Harmon, Lila Stoehl, Robin Bolduc, Lorri Park, Julie Reiskin, Christy Blakely, Romie Tobin, and so many more, thank you for investing in parents.
Today Hayden McLaughlin signed up for kindergarten because Kathy Serena and all of you believe that all children belong, no matter what their labels.
Much Love To Everyone Here,
Gigi, Pueblo(mom to Hayden who has Down syndrome, and continues to “grow me up” everyday)
For some reason, I didn’t give this piece to Kathy S. right away. I saw her all the time in our mutual work in early intervention. She lived just blocks from my house. Then one hot and steamy summer afternoon I decided I had better give it to her. (I don’t know, maybe I was worried that she wouldn’t like it or that she would think I was putting her on too high a pedastal). So I loaded up the kids in their Radio Flyer wagon and trudged up the incline to her house, sweating like a small farm animal by the time we arrived. She wasn’t there so I just left it with her husband at the front door.
I didn’t think much about it afterward until less than three weeks later when her son Jeff died suddenly at their home, in her arms. My heart ripped apart in 17 pieces and I drove to her house in less than a minute and was in a tearful embrace with her seconds later. The next few days were a blur for me. In my grief I forgot to pay the electric bill and the day of Jeff’s funeral our electricity was cut off. I felt stupid but deep down I didn’t really care. I couldn’t believe he was gone. Jeff, the almost mythical inspiration for Kathy’s tireless work in early intervention in the state of CO, gone. And me, like hundreds of other families in our town, the unbelievably fortunate recipients of his mother’s ceaseless barage against the “old guard” from within disability and without. I count my blessings and Hayden’s too, everyday that Jeff Serena lived a gratifying and fulfilling life.
Hugs to you Jeff. We all miss you very much.
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