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Showing posts from July, 2015

Including Caleb

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During his first year of preschool, Caleb received an invitation to attend his friend and classmate Jace's birthday party. Because it fell on a Sunday, I was going to decline so I would not miss church. Going to church is pretty much non-negotiable in our home. This time I had second thoughts. "You know, Paul? This might be the only party Caleb is ever invited to by a healthy, 'normal' kid. I am taking him." Paul agreed. One of my husband’s greatest fears is for people to ignore our son, and this family was including Caleb. I felt grateful and honored, scared and nervous. I knew it would be strange and uncomfortable for me to be surrounded by healthy kids and their parents. We would be the "weird" ones, the ugly ducklings. I felt sad. I went in spite of my sense of inferiority and held Caleb in my arms as he napped while the other children played in the toy room. He woke up after a while, and I put him down on the floor. He began to balance on hi

Collectibles

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My son Daniel likes to collect all sorts of “treasures” he finds in the street, in parking lots, etc. Over time, he has collected anything from candy wrappers to fruit labels on the refrigerator door to sticks to rocks to ordinary stuffed animals. Don’t you try to suggest it is time to give things away, or get rid of them! They are too close to his heart to let them go. Behind each there is a story --- the walk in the park, the nice-looking apple, the time I dropped him off at preschool and we found a tiny figurine, the trip to the zoo, or the trip to Duluth. I, for my part, used to collect the cards sold from time to time at the candy store next to my elementary school. I can’t even remember what those cards were about. Where they pictures of puppies? Disney characters? Who knows! But I had to get them all. So I kept buying them and trading those cards for which I had duplicates, until I filled the little book which came with them. I don’t keep a collection of things anymore,

Words

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A couple of months ago, I overhead my son, Daniel, and his friend, Bjorn, talk about a little boy from our church. The boy, who is almost 3, is full of energy and wants to imitate everything the older kids do. Just like them, he gets rough. The only difference is that he still doesn’t have impulse control, so he’ll bite and throw things at you. Daniel enjoys playing with him, but does complain about him being “annoying” sometimes. “If he were like Caleb, he would be perfect, right?” Bjorn said. Daniel agreed, of course. I couldn’t help but smile. It was not the first time I had heard Caleb being described as “perfect.” Caleb is my child with a severe disability called Trisomy 13. “Mami, why are Caleb’s muscles weak?” Daniel asked. “Because his body did not form properly,” I explained. “Mifis (Daniel’s nickname for Caleb) is perfect. Maybe not a perfect life, but a funny life. And I think his brain is smarter than we think because he is trying to crawl.” Caleb has been describ