Our lives became a little [EXTRA] special on February 15, 2011 in a way we never expected.

This is about our journey and the [EXTRA]ordinary people we meet along the way.

Friday, April 19, 2013

April [EXTRA]ordinary Mom of the Month: Meet Kathy!

At first, I only knew Kathy virtually. We were aware of each other, but didn't really know each other. When a friend of mine from college had a child going through cancer treatment, I put a Facebook call out to provide meals for their family while they were in treatment at Cincinnati Children's Hospital. Kathy responded with a fervor. Not only did she provide meals for Izzy's family, but she had her kids make cards, and she bought Izzy a birthday gift, and she used her connections to help me give the family over 35 days of meals. What I found was that not only was Kathy smart, but she is selfless, giving, driven and focused in a way that you automatically know you want her as an ally and friend. I look forward to getting to know her more, and I hope you do too!

Children (and tell us a little about each because who doesn’t like talking about their kids?!?!):
We have three kids:  Maddy, who turns 9 in May, Drew, age 6, and Will, who turns 5 in one week. Maddy is a great big sister, very protective and patient (mostly, anyway.) She loves to read, draw and paint, and play outside with friends. Will is very tall and very sweet. He is my hugger. Will loves Legos, cars and trucks, his family and his dog.  Drew is our force of nature, our little bulldozer [T21]. He's in kindergarten now and has had a great year, despite some major health challenges. He has a devilish sense of humor and I love that his speech is now good enough that he gets to be funny in that way, too!

Do you work or volunteer? IF yes, what do you do (besides being a great Mom!)?
I have my own media relations company. I started it just after Drew was born, when it became clear that my long, erratic days in the newsroom were over. (I was executive producer at WLWT at the time.) I also volunteer with the DSAGC and St. Rita School for the Deaf, mostly helping with media campaigns.

How many years have you been involved with the Eastside or Extraordinary Friends Mom’s group? Good question! I haven't been able to attend nearly as many events as I would have liked. I work days, David works nights and we have three children, which makes it challenging. But I do remember taking a little Drew to some early playgroup meetings, including one at Missy Skavlem's house. And I've had the pleasure of meeting some of you individually at things.

Why you like being a part of this group?
We all "get it".  This diagnosis does mean certain commonalities for some of us, and it's been such a relief being able to connect with people who've been through things that we're going through, who have great medical advice or therapy referrals, etc. I never feel isolated.

Best advice for new parents of a child with T21:
Get in touch with your local Down Syndrome Association!  My parent mentor (Rosie Abel) was such a huge help in those early weeks after Drew was born, and the DSAGC has been a huge help in so many ways ever since.

Greatest joy in having a child with T21:
Having Drew and feeling a connection to other people with developmental disabilities has really opened up my worldview, and helped me to see the beauty and dignity in so many ways of living and working. I had such a narrow perspective before. He's made me a better person, more patient and loving, because that's what he needs me to be. I feel the weight of that, but am also profoundly grateful for it.

What is one thing you’ve learned personally from your journey that you would like to share with other [EXTRA]ordinary Friends?
That trying to extrapolate every little thing into a glimpse of "what may be" is wasted energy. If you don't do that for your typical children, you probably shouldn't for your kid who has T21, either. And yet I catch myself doing it all the time; comparing Drew's milestones and achievements to those of other kids with this diagnosis, to try to glean how he's doing, if he's still on track, if he's following the same path that high-achieving kids with this diagnosis have followed. But from what I've heard and read, they all follow their own paths, anyway. And it's rarely a perfectly linear progression. Eventually that will make its way into my thick head and I'll stop fretting about it. But I'll never stop expecting Drew to do well. And I pity the fool (said in my best Mr. T voice) who tries to tell me that Drew WON'T go to college.

Favorite Therapy Trick/Tool:
Touch cues!! They really helped Drew develop certain sounds that were so hard for him.  The Kaufman protocol has also been huge for him.  The occasional glass of red wine has been therapeutic for me.

Random question: What's one of the craziest dreams you've ever had? 

When I was a kid, I had the same dream over and over again. A lion was living in my house. Just us, no parents. The lion could only walk on the carpeting, and I could only walk on the tile. Which gave me the bathroom and the kitchen, which was pretty sweet, but he got the bedrooms and the living room (and the TV, which was unfair). The whole dream was us running around and skidding, cartoon-style. I have no idea what it meant, but I do remember dashing through certain rooms during the daytime, just in case.

If you feel like it’s not too personal, can you share your diagnosis story?
We did the nuchal translucency testing when I was pregnant with Drew, and while the translucency itself was perfect, the bloodwork came up with a 1 in 76 chance that he had Down syndrome. We opted not to do an amnio, since we knew that a Ds diagnosis wouldn't change anything for us. But I did have a Level II u/s in my 20th week, and the high-risk OB who read it swore up and down that Drew did NOT have Ds. His measurements were perfect, his nasal bone and heart were fine, etc. But when I was in labor, about to head into the OR (it was a planned C-section), I just knew that my baby had Down syndrome. I am distinctly un-woowoo, so I can't explain the feeling, other than I just knew that he did. I asked a nurse to see if a neonatologist could come in, just to be safe. Sure enough, when Drew was born, they saw some soft markers of Ds. He also had pulmonary hypertension and was having difficulty breathing, so they rushed him off to the NICU. The next few days were a blur, as he struggled with the pulmonary hypertension. Then they told us he had a heart defect, and that they were worried it was a major one. The same morning that the team from cardiology was doing an echocardiogram on Drew, the karyotype results came in. But the neonatologist who delivered the news that Drew had T21 did it on the heels of the cardiologist, who told us that Drew's heart defect was, in fact, minor, and would likely close on its own (it did.) So when the neonatologist delivered the T21 diagnosis in very somber tones, David and I were so happy and relieved about his heart being okay that it didn't feel like a big blow.  The worry and fear came later, of course, and that's where our parent mentor and our wonderful families really helped. 
Thank you, so much Kathy for your spirit of servant-hood and your inspirational family!

What a handsome boy!

What a great looking family!

Sibling fun!

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