Thankful That We Are Not Alone - Guest #15

This is a bloggy friend of mine. I have enjoyed her blog for a while now and have gotten to meet her on Facebook, too. We've been chatting back and forth for a while and just recently I discovered that she wrote a short story submission for Gifts. Which I adore and often recommend to new parents. I felt like I had met a celebrity all of a sudden. I got all aflutter... :)

Please welcome the only "celebrity" I know, Deborah Minner of Sunflower Stories.

"Goodland, Kansas, population 4,948, is the county seat of Sherman County in Northwestern Kansas. The town is just 4.4 square miles big. It sits just 17 miles from the Colorado border, but is 176 miles from Denver, the nearest major city. The closest major city on the Kansas side is Hays, 212 miles away. Goodland is known for it's vast open fields of sunflowers and wheat.

In a small rural community such as this, it's very easy to feel alone. The nights are quiet, the days pass slowly. Socializing is most likely to occur in the isles of Wal-mart. Everyone knows you, knows who you dated in high school, where you went to college, and which bank you use. The same doctor delivered most of your classmates and if you have a cough, he'll whip up a special syrup for you to take. "Newcomers" are defined as someone who moved into the city in the past 15 years, versus being born there. And it takes years to branch out past relatives as friends when you are a newcomer.

When my husband, Doug, and I decided to move to Goodland, we knew we'd go through an adjustment period. We were so used to our busy social life in the town where we graduated from college. Our life had been so hectic and stressful, we relished the idea of a calmer way of life. We comfortably made the transition, learning to eat most meals at home, instead of at our favorite restaurants, watching videos on Friday night instead of going to see live bands. Enjoying family gatherings with his parents, watching football or basketball together while our baby crawled around the house. We slowly started meeting people through golfing at the country club, and participating in MOPs. This was way before the days of Facebook and high speed internet. W rarely used the old lap top computer at home with it's painfully slow dial up internet connection. Occasional trips back east to visit my parents gave us time to catch up with friends.

So when our second son, Sean, was born and later diagnosed with Down Syndrome, our support network was scattered and loose. Of course we had the love and support of our families, but we searched for the strength from others like us. Other parents of children with Down Syndrome or other disabilities. Since our local hospital wasn't able to meet Sean's medical needs, we went to Denver to see specialists. The Mile High Down Syndrome Society offers great resources to Colorado families, but since we'd be returning to Kansas, they didn't have information for us. We got a few pieces of paper printed off and stapled together telling us medical facts about Down Syndrome and included a list of online resources to read.

When we returned home and connected with our family doctor, he referred us to the Early Education Service Center that would offer therapy for Sean until he was old enough to go to school. One of the first things we asked them to do was to connect us with another family. Unfortunately, we learned that he was the only person under 18 (that's as old as they had service information for) in the entire northwest area of Kansas that had Down Syndrome. Their service covers 13 counties, a total of 12,000 square miles, and Sean was the only person with Down Syndrome in that area at the time of his birth.

Talk about feeling alone.

We were sad, scared, uncertain, uneducated about Down Syndrome and we felt like the only people we'd ever known in this situation. We grasped at straws to think of who else might offer us advice. I had a vague memory of a person I once did a committee work with that had a daughter with Down Syndrome, so I did track him down and email him a couple of times. My dad surprised me by telling me that his first wife has twin boys one of whom has Down Syndrome from a prior marriage. and that he had lived with them during their marriage. I'd always known of his first marriage, and the twins, but had never realized one had Down Syndrome. I pulled out the old 35 mm photos from the late 60's and closely looked at the faces of two six year old boys. Yes, I could see it now. They looked to similar, but one was slightly different.

Yet we still had no one close to us, no one raising their child the same age as us, no one to ask questions that ran through our minds and we were afraid to speak aloud.

We pulled out the pages from the Denver hospital and looked at the resource list again. We wanted to find people, not facts. We wanted stories and photos, not statistics and charts. One caught my eye: http://www.downsyn.com/ a parent-to-parent support website, it said. I plugged in the old lap top and slowly watched the pages load. The peach colored backdrop, adorned with cherubs, appeared.

I.found.home.

Any and every question I could think of was asked and answered. Photos, videos, stories, resources, reviews, opinions, SUPPORT. Warm open arms.

Suddenly, we were no longer alone and I was so thankful.

I leaned on downsyn.com for support so much of Sean's first year of life. It was the lifeline we needed in addition to the love and support we had from our families and friends.

When Sean was 12 months old, we finally saw another person with Down Syndrome in person. We had gone to a nearby small town to visit their fairgrounds. While watching some horse riders performing various cowboy competitions, a family with a teenage daughter with Down Syndrome walked past us. They stopped for a few minutes just rows away to watch the horses. Doug and I no longer watched what happened in the arena, but instead intently observed the family in front of us. We stretched to hear them, to hear her talk, to see what they said, to wonder what their life was like. A glimpse into our future? How desperately I wanted them to turn around, look into Sean's eyes and see that he was a part of the T21 club! Instead, they moved along and as much as I longed to chase after them, I held back

A few weeks later we went to the Mile High Buddy Walk and completely surrounded ourselves with families like ours. The experience was overwhelmingly emotional and moving. Months later, we moved to our current city and joined a Down Syndrome support group that meets just an hour away. We quickly met other families and built in person support.

No matter where you are and what stage of acceptance you are at, there is always help out there. There is comfort in those connections. I hope each parent that feels alone can make a connection.