Later in the week, Mattie and Hope staged a tattling scene wherein Hope accused Mattie of saying "duck on the head," and Mattie "defended himself" by responding that he was only telling Hope why she shouldn't say it, and I "scolded" both of them. Nell felt terrible. She had been repeating the phrase here and there in the belief we had been pulling her leg and thought it was she who got the kids going. We didn't disavow her of this notion. Then, on one of our last days there, we all tied tiny stuffed ducks to our heads and went around the side of the pool where Nell was sitting, quacking at her.

Mattie was having the time of his life. Chris would throw him into the deep end of the pool, and he'd soon be bobbing to the surface, yelling to be thrown in again. He also began interviewing all the kin for a fun book he and I were envisioning, The Unsavable Graces. He wrote goofy poems and went to the top of a giant sand dune called Jockey's Ridge. He went with me to Mass recited in Spanish, which we did every summer; doing so allowed us to really think about the essence of God in rituals rather than just recite prayers from rote. He and Hope, both blond, ambushed Chris, also blond, while Chris was trying to flirt with a pretty girl in an orange-pink bikini, saying, "Daddy, we're hungry, and Mommy said it's your turn to fix us lunch." Chris later married that girl, Cynthia, and Mattie was best man at their wedding.

Mattie's disability had progressed since the previous summer, but we were used to that and always found ways to accommodate his condition without letting it ratchet down the fun. For instance, when Mattie was 6 and 7, he could walk to the pool, do backward flips into the water, swim laps and dive down 10 feet to the bottom to grab pennies. As long as he remained attached to a tank of oxygen, he would be fine. We would rig a 25-foot tube that connected the nasal cannula in his nostrils to the tank so he could swim anywhere in the pool and never be without the supplemental oxygen. When he wasn't in the water, he would drag the tank behind him on a cart, sometimes using his cannula and tubing as a jump rope and letting other kids take turns as he swung it.

When Mattie was 8, he needed a wheelchair with the oxygen on the back of it to get to the pool but could still move around pretty well once he was in the water. The summer he turned 9, he went from one oxygen tank to two, but as long as he had the extra oxygen, he didn't have the frequent feeling that he was suffocating.

This time around, Mattie was too weak to swim much—he would come up gasping—but he could still enjoy Chris throwing him into the deep end. To compensate, we bought a 10-foot blow-up alligator float that Mattie could hang on to in the water. The object was always to continue the fun no matter the challenge. There was always another solution, another fix.
Excerpted from MESSENGER by JENI STEPANEK. Published by arrangement with New American Library (NAL), a member of Penguin Group (USA), Inc. Copyright©Jeni Stepanek, 2009.


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