Last month was Down Syndrome Awareness month, and I learned a lot as one of my family members posted daily about the blessings and challenges of having their daughter, Sofia, in their family and how she has changed their lives. It’s not October anymore, but those posts touched me so much that I wanted to share Canda’s thoughts about her daughter since our guest post in October touched on children with disabilities as well.
Sofia is the 4th of our 6 daughters. She is 8 years old and in the 2nd grade. I never envisioned that I would have a child like her but I am so glad that God did! She is a blessing to my life every day.
When Sofia was born, we had no idea she was going to change our lives forever. While they were cleaning her up, a nurse asked Nathan, “Do you notice anything different about your baby?” He didn’t, she looked like a new baby.
After 5 minutes of Nathan worrying and wondering, the nurse said, “Your daughter appears to have markings that indicate she has Down’s syndrome.”
Nathan has told me he was awed by my reaction to Sofia’s diagnosis. She had been taken to NICU and I had been taken to a room (she was c-section). He walked in and told me he had to tell me something about Sofia. He said,” They think she has downs syndrome.” My immediate reply was, “Ok. So what do we do?” He says my oh crap moments came later.
Today I want to share the best thing I have ever read about having a child born that wasn’t quite what you expected. The hospital included it in all the information they gave me about downs syndrome and I am so grateful they did.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
Sofia’s sister wrote this about her:
Having a sister like Sofia is like having a sister. Sofia as a sister is no different. Yes, she smacks you more often when she wants something, but it’s no different. I wouldn’t trade Sofia for a normal sister because her small difference is who she is. Sofia is an 8 year old who has gone through more than I probably will ever have to. The only thing I wish I could change is when I introduce myself to someone at the school and they go, “oh, you’re Sofia’s older sister.” I have a name, but sometimes it’s nice to know that people like Sofia. Sofia is special, and unlike anyone I will ever meet.
In 2012, we were asked if Sofia could participate in a training video for our church. We were surprised and had a lot of questions. How did they know about Sofia? We belong to a worldwide church, why her? What would it require? Nathan was hesitant, but I have had feelings throughout Sofia’s life that she isn’t just mine; she is meant to be shared with others. I felt this was a time when God was asking me to share her with others. If I could, I would keep her home with me all the time, but that wouldn’t be helping her. She is meant to be among people and show them Christ’s love. Here’s the finished video. I truly appreciate those that work with her and love her.