The Sibling

The Sibling

Ryan was three years old when Mark was born. Needless to say, no matter how hard we tried, Ryan became lost in the initial craziness. There was no mystery about it. Ryan let us know in no uncertain terms that this brother was a disappointment. He couldn’t play ball, go fishing, or shoot arrows. He was too small to do anything fun. He never wanted to get out of his cradle. For heaven’s sakes, he was in the living room in that cradle all the time! Mom, he said, “We have to teach Mark to be a brother okay?” He won’t get well unless we go out and play. Won’t get well? Ryan thought Mark was sick? I had figured on a few more years before having to explain to Ryan that Mark would be different from his friends’ little brothers. For now, it was a blessing to lay that little white lie at Ryan’s feet. “Yes, I lied,” Mark needs more time to get well…

In response to Ryan’s observations we began to take Mark on more excursions. We went outside more as the summer came on, took him grocery shopping, to the movies, etc. What we learned from Ryan was that we began to explain that Mark was not a sick child, just different. And POW was that clear when anyone saw him with us. At a year old, Mark weighed 18 pounds and was not mobile. He lived on my right hip. Human beings have genetic radar that instantly recognizes when another human is genetically different. It magnetically drew people to us in pubic places. We received them graciously and satisfied their curiosity with more little white lies. I lied about Mark’s age for the first four years of his life. A child of three should be running around in public and mine was always on my hip. I could control the response from strangers from a disappointed “Oh, he’s three and not walking yet?” which would depress me for the rest of the day. Or, since he was so little anyway, I chose to say he was a third his age, which would elicit the comment:” He’s so big for his age!” and that would assure me of a more positive thought to carry home. Then I could cry there instead of the minute I got back into my car. Wherever I cried, Ryan would cuddle me and say, “Mom, Markie will grow up big like me pretty soon.” I would feel like the luckiest mom in the world and go hide in the bathroom to cry some more. I would lean into the mirror over the bathroom sink and pray to Annie Sullivan to help me do right by Markie. Then, I would make the sign of the cross and renew the “Oath” to myself. My mom used to make the sign of the cross when she made a pie, and they always turned out fabulous. I needed more strength than just optimism at this point and that time honored ritual became a starting point where hope and denial evolved into a simple daily prayer that Markie Sparkie would grow up big like Ryan and create his own holy sparks for the divine fire of his own life.

About Carmella Miller

I live in Nevada City, CA with my husband Steve. I am a retired 7th and 8th grade English, Art and Drama teacher. I thought it would be fun to share the"Markie Stories" featuring our son Mark Miller, age 24. When a parent hears they have a special needs child, grieving and isolation often follow. Maybe because we finally "got" Mark raised up, that, now we see how funny it was at times. And we definitely know how how proud we are of him and ourselves.
This entry was posted in A Mother's Diary, Down Syndrome Help, Raising Down syndrome Boy and tagged , , . Bookmark the permalink.

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