Go Out There And Be A “Kathy”!

There’s not a lot of time left in National Down Syndrome Awareness Month, and I absolutely can not let the month end without paying HUGE homage to the person to whom we as a family owe so MUCH.  In fact, I’m positive we wouldn’t even be a family without her.  I first wrote this eight years ago to a listserv we belong to and I mean every bit of today.  Today’s blog post is for all the “Kathys” out there:  the strangers who answer our phone calls, the first person we meet at a support group meeting who fawns over our baby like he/she is absolutely the most precious baby ever to roll off the assembly line, the person who meets you post-delivery when you’re still dazed and confused and have been told who-knows-what by the doctors and nurses, and says, “I don’t know what the future holds for your baby, but I’m here to face it with you….let’s get to work!”  Kathy S. is my reason that I will FOREVER be rabid about reaching out to new parents in the Down syndrome community specifically, but to all parents who are out there walking around in a daze with a new diagnosis.   She has been my North Star in so many ways through the years.  And though we’re no longer living near her, my heart is instantly filled with warmth and love whenever I think of her.


Here’s the original post from 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, whom we had just met in the hospital nursery, was going to have.   I had called her to ask her if he would ever 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 from someone about these kids with this condition.   It was all overwhelming and I remember feeling a little frantic inside as to whether I was the “right” parent for this baby (afterall we were adoptive parents, so I could walk away from this situation without so much as even a thought.  But there were tugs at my heart that needed to be explored.)  So this woman whom I had only met in passing, talked to me in excited tones  about how much better life is now for babies and children with disabilities.  So much better than when her now-adult son, who had the same 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.”

It was like the sun breaking through the darkest of clouds of doubt and mystery.  I got off the phone feeling hopeful;  that precious little baby in the hospital nursery who was still on oxygen was going to somehow be okay.  I didn’t know the details, but I had new 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 flowing freely down my cheeks I thank you Kathy S. for being my messenger of hope and promise that night.   And to all the other “Kathys” out there, THANK YOU for making it YOUR job to reach out to new parents.  Thank you for delivering messages of hope, encouragement and a “can do” attitude to all of us “new parents”.   Today I am Hayden’s mom and he signed up for kindergarten as a direct result of a phone call to a used-to-be stranger who believes all children belong everywhere, no matter what their labels.


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