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October 26, 2007
Yesterday our friend Dawn who is director of STARS (disability ministry @ College Church, Wheaton, IL) called and told me that she’d passed along this blog site to a missionary in Sofia, Bulgaria. One of the members of the small church there has recently had a child with Down syndrome. So, I just want say, “Welcome to the World!” I hope to hear from you and would like to offer hope and encouragement. I know that in Eastern Europe, the resources are very limited. Therapies may be almost non-existent. The physical therapy program that Nathan has received since he was two months old is called CME (Cuevas Medek Exercises). This method tends to be quite aggressive but helps children walk by around 18 months old instead of 24 months. If you want details, let me know.
As for Nathan’s other therapies, he receives speech, occupational (use of tools, small tasks, drawing), and developmental (building and problem solving). We also do weekly pool therapy with his physical therapist. We now have five therapy sessions per week, four at home. Nathan knows his colors, is signing single words, loves music, he is bright eyed and very aware of what’s going on around him. He tells us when he’s hungry by saying, “yum, yum, yum.” He’s a snugglebug when he’s sleepy. He LOVES books. He’s a good eater and not overly sensitive to textures which I’ve heard can be a common sensory disorder for kids with DS. Our biggest concern regarding Nathan is his heart which has a small ASD hole. The surgeon wants Nathan to be 27 pounds in order to perform the repair…2.5 pounds to go. The procedure will be done by going in through his groin to insert a small device that will go in like an umbrella, then they open it up at the hole and it pops open and snaps around the hole to close it. We are greatly relieved that Nathan will not have to have open heart surgery. Nathan is expected to be in the hospital for only 24 hours.
snatching blueberries from Paul in MA.
All of that to say, most of the depressing information that I initially read about Down syndrome is simply not the case for Nathan. He’s smart, sweet, mischievous, and VERY CUTE. New moms and dads, don’t read “that” book which lists all the possible problems. Read the books full of parents’ stories. There is definitely a time for sadness in the beginning. It’s a shock and a disappointment to discover that something is “wrong” with your child. But for me, in less than two years, I have been transformed by our son. I notice people almost every day with disabilities and see them completely differently since Nathan’s arrival. Now we can’t imagine life with out him.