Outside the Box

Having a family member and especially a child with multiple disabilities has some obvious difficulties. Friends and strangers alike express concern for Maggie’s well being or offer blessings and prayers for her and for me, as her mom. Other than Maggie, I am probably the focus of most of the sympathy and prayers. It is kind and thoughtful, but a bit disconcerting at times, especially when it is coming from strangers. I’m not looking for sympathy, but I appreciate kind efforts to understand that there are differences in my life because of Maggie. The fact that strangers can only see the negative changes is not my concern.

My husband does not have to deal with the comments from strangers as much as I do. There are a couple of reasons for that. I spend more time out in the world with Maggie than he does and encounter people more often. Many of the comments come from other women, who may be more comfortable approaching a mom than a dad. In addition, Steve is much better at blowing people off than I am. He does not care what anyone thinks or says. That may sound like he is cold, but he is not. He is content and does not need input from strangers about his family. Though his experience with strangers is different, he does get the same amount of concern from friends and family. Steve, as dad, has all the same emotional pressures that I do. In addition, his freedom is enormously curtailed by our inability to travel or just take off for a few days. On top of that, he had to become the sole financial support for the family.

The impact on my sons’ lives was/is more subtle. Now that they are away at college, the day-to-day impact is less than it was. However, growing up with a sister as medically fragile and disabled as Maggie was had its challenges. They spent a lot of time in hospitals and doctor appointments. It seemed like Maggie had a medical crises on Tim’s birthday three or four times. They got a lot less attention from me. And medical issues? Please. Nothing could compare to what Maggie was going through so scraped knees and turned ankles were not treated with the same concern they might have been. The boys were shipped off to “visit” cousins a lot. The family was great at welcoming them and making it fun, but they knew there was no one at home to watch them. As they got older, they were frightened for Maggie.

Maggie’s disabilities became a central issue for Eddie in grammar school. Actually, the issues were not so much for him as for the teachers at the school. The slightest bit of misbehavior or sadness was immediately attributed to his “situation”. At a parent teacher conference, I was frequently told, “you know he HAS a disabled sister.” (No! really! I had no idea.) I offered to bring Maggie in and explain her differences to the students (and faculty). No thank you, not interested. I ignored that for a while thinking these women would wise up. When they did not, and I heard again about his disabled sister I said to the nun, “Well, yes sister, but we’re KEEPING her, so what do you suggest?” I was the one who wised up. I realized they had put Eddie in a box where he didn’t belong and were not the least bit interested in letting him out or learning anything about it.

Shortly after that, we switched schools. Best thing we ever did, for the boys and for all of us. We went to another school (also a Catholic school) where they jumped at the chance to learn about Maggie and let the boys be little boys. The school was supportive and helpful, not closed minded and judgmental. Soon after moving to the new school, both boys realized that when they were pushing Maggie around the schoolyard, they were far more likely to get the attention of the girls in their class. In their adolescence, we referred to Maggie as a “chick magnet”, a role Maggie loved.

As the boys got older they were far more cognizant of the dangers of Maggie’s medical conditions, but it just became part of the fabric of our lives. They would hop into her bed in the ICU, read her stories, and watch TV. They would listen to and understand what the doctors said and figure out how long until we were home and things would return to “normal.” However, “normal” in this house is different from normal in other houses. They were the only ones in high school to learn to drive using a wheelchair van. They were the only ones whose friends were pressed into service moving medical equipment when they came to visit. They were the only ones whose parents were ALWAYS home.

Then and now, Maggie is just their little sister. The differences in her life and theirs are part of the men they have become.

As I’ve said a million times, different does not mean worse.