Stephanie and I met one evening at a DSAGC sponsored seminar last spring. She was there with her brand new son Eli. I hadn't met too many Moms with boys yet, so my husband, Josh, and I approached her to introduce ourselves. In that moment, I made an immediate friend. She was a fellow Special Ed teacher and also had a daughter the same age as my Eden. She was teaching at the same school where my Dad taught for nearly 30 years. Since then, we continue to find interesting connections on a regular basis and become closer friends. She is just one example of the fact that, without Down syndrome, I would not have found this truly [EXTRA]ordinary friend. She is a member of our [EXTRA]ordinary Friends group (comprised of families with kids who have Ds and were born in 2011).
First Name: Stephanie
Children: Evie - 4 years (spitfire, just like Eden); Eli - 14 months (Ds)
Do you work or volunteer?
I'm an Intervention Specialist at Colerain High School. (On the northwest side of Cincinnati)
How many years have you been involved with the Extrordinary Friends Mom’s group?
Why you like being a part of this group?
I know it might sound trite, but I've met some really wonderful families through this group and it's very helpful to have other people that just "get it." I've developed close friendships with a few of the Moms and I value that so much.
Best advice for new parents of a child with T21:
Don't worry--it's going to be a great life. A hectic, often overwhelming, sometimes scary life. But a really great one if you let yourself relax enough to enjoy the ride. Don't let Down syndrome define your child--remember it's just a diagnosis. Don't let Down syndrome consume you either, but be an advocate. And remember that more than anything, your new baby needs to be loved, just like any other baby.
Greatest joy in having a child with T21:
This is a hard question. I get really emotional just thinking about it. As parents of kids with T21, we're sometimes accused of "Disney-fying" Down syndrome (and our lives with Down syndrome). But so many things in my life have gotten better since my son was born. I've deepened my faith and spirituality--that sustained me during his time in the NICU when he was dealing with a life-threatening condition. I've forged meaningful and cherished relationships with new friends. I've evaluated my priorities and made more time for my family and focused less intensely on my career (which I'm sorry to say I didn't do when my daughter was born). And most importantly, Eli is pure joy. He is light and life and love. He has taught me there are no small accomplishments; he has taught me to celebrate little moments and to believe in big miracles. I can't imagine my life without him.
What is one thing you’ve learned personally from your journey that you would like to share with other [EXTRA]ordinary Friends?
I look back on Eli's time in the NICU, at the level of medical care he required at home, and at all of his surgeries, and sometimes I still can't believe that was our life. I never thought I could get through something like that. But I did. We did. And we're ok. I don't think I'm stronger than other parents, but I do think I'm resilient. Some of the things we went through in his early months--well, I didn't know I had it in me. I use that experience to put things in perspective now, to remind myself when things seem tough, that we've already been to hell and back and it turned out just fine.
Favorite Therapy Trick/Tool:
Incorporate it into your everyday life--it doesn't have to be a structured activity.
What is your favorite vacation spot and why?
Anywhere I can slow down and savor time. I love the beach and I love the mountains. Disney is one of my favorites too.
Also, read Stephanie's diagnosis story HERE, on her blog, Pacify Me. (Another commonality that we share...we Blog and have a love for expressing ourselves through the written word!)
We are so grateful to have Stephanie, her husband John and her gorgeous kids in our lives!
|Stephanie and Eli|
|Eli: could he be any cuter?!?!|
|Big sister Evie and little brother Eli|
|Stephanie and John at their wedding. So sweet!|