Reid & Paley

Born Nov. 2007 & June 2010 |  The Bronx, NY

Living with XLMTM

"This could be an opportunity to complain a lot or this could be an opportunity for soul-building. Being their mom has made me so beautiful on the inside. I could never repay them for that.” —Marie

 

“I always count the steps so I don’t lose one,” Marie says, her face not even breaking a sweat as she carries first Reid, her eight-year-old, and then Paley, her five-year-old, up the stairs of their walk-up flat in New York City. “Twenty-six!” she calls triumphantly as she reaches the last step, and Paley in her arms smiles up at her in response, happy to be home.

“Becoming a mother, you realize how vulnerable you are,” Marie says, who maintains a regular weight-training and workout practice to stay in shape enough to carry her boys up and down the stairs. “Just becoming a mom, that happens. When Reid came along, it was so much more so.”

Reid is Marie’s third boy, and immediately after his birth it was clear that he was not healthy like his two older brothers. Reid was diagnosed with MTM and at two-and-a-half months he was given a G-tube and trach. He spent the first five months of his life unable to leave the hospital. “I was pushing him in the stroller and he saw the wind in the leaves for the first time,” Marie recalls. “His mouth dropped. He was sensitizing me to the simplest form of beauty.”

After being trained how to take care of Reid at home, Marie and her husband, David, were finally able to take Reid to be with his older brothers. “Until you’re used to that [life support machine] it just looks like a jumbled mess of cords,” David says of his anxiety about taking Reid out of the hospital. “It looks like spaghetti. You think, one mistake and I’m gonna kill my child.”

David was initially reluctant to participate in the home-care that Reid needed, saying to his wife, “You’re so good at everything. You don’t need me.” To which Marie responded, “But I feel stronger when you’re with me. So just be with me.” This was something David could easily get behind, and over the years he has become more and more comfortable with the machines that are an everyday part of his son’s life. “Now he does it better than me!” Marie proclaims. “Nobody suctions better than David.” Using a thin, suction tube, not unlike a dentist’s, David is able to clear out unswallowed liquid in the boys’ mouths to prevent breathing complications. He learned, often through trial-and-error, how to give his sons the best care. “You learn you’re going to mess up sometimes,” says David. “You’re not going to be perfect. But every mistake you make, you never make again.”

Three years later, when Marie gave birth to Paley who was also diagnosed with MTM, the family was ready. “It was much easier with Paley,” David says. “We already knew everything.” Furthermore, Reid and Paley’s older brothers, Lucian and Blaise, began learning how to aid their parents with at-home care. “They've known how to change tracheostomy tubes since they were little,” says Marie. “But now they can even assist transferring their younger brothers along with the equipment at bedtime.”

Though diagnosed with the same condition, Reid and Paley could not be more different. “In the hospital they used to call them ‘spaghetti and meatball,’” Marie says, due to Reid’s long, thin body, and Paley’s round, chubby build. Reid is adventurous and mischievous. He is able to get around by scooting in a seated position, and when he’s taken off his vent he’s known to find hiding places to trick his parents and brothers. He approaches physical activity affably. “Reid will be extremely excited to see his therapist and play,” says Marie. “He even tries to interject himself into Paley's sessions, whereas Paley will put a blanket over his head and try to pretend he's sleeping to get out of any physical exercise.”

Paley, while less mobile, possesses an athletic mind. “We just download an [educational] app for him and then he figures out how to do it himself,” Marie says. “He loves math. And spelling. The other day he spelled iguana.” Paley has also been obsessed with geography lately. “He loves studying maps on his iPad and also on his small globe.” Reid, on the other hand, enjoys less pedantic activities for his entertainment. “He'd rather watch movies and cartoons, especially musicals.”

Both boys are full of smiles and love to cuddle. For Reid’s Make-A-Wish trip the family went to Disney World. “When Reid saw Mickey, he put his hands on his face and started kissing him. I couldn’t believe it. I started crying. Then Mickey hugged me, and I could feel the actor shaking with tears inside of his suit.” Marie laughs. “We made Mickey cry!”

Marie and David are deeply spiritual and say that their faith has been a great source of support for them as they care for their four boys. “I believe that God loves us and that there is meaning in everything,” Marie says. “I see the physical world as multiple metaphors for something deeper. There are 52 muscle pairs required to swallow. That we can swallow is miraculous. [Reid and Paley] have given me a reawakened sense of wonder for the body and for life.”

“Life depends on how you perceive it,” she continues. “This could be an opportunity to complain a lot or this could be an opportunity for soul-building. Being their mom has made me so beautiful on the inside. I could never repay them for that. Every moment with them is so beautiful.”