A Grateful Mom Gives Back

After Kelly and Tyler Smith suffered a string of shocks in the first week of their newborn Matilda’s life—her lethargy and vomiting a few days after birth, the diagnosis of liver failure, the ambulance dash to Mount Sinai—the couple entered another world of living in the hospital and watching their daughter’s deterioration while waiting for a liver to become available for transplant.

“We knew she was slipping away, and there was nothing I could do for her—I couldn’t even change her diaper or feed her,” Kelly remembers. “Before this I had been completely naïve to the world of pediatric organ donation—I’d honestly never even thought about babies needing baby-sized organs for transplant.”

During that dark time of relentless worry—during which the couple was also missing their small son, Parker, who was staying with relatives—it was the little things that kept Kelly going, including knitting and crafting supplies given to her by Mount Sinai’s Child Life Program, which supports young, hospitalized patients and families using art and other media.

“When I was able to do something and say to the doctors and nurses who came in, ‘Look what I made,’ then they would smile, and the air became lighter,” Kelly says. “And I think little things like that impacted Matilda because she could sense that energy and feel whether her parents were sinking into despair or if we were able to lift out of it.”

Matilda received her new liver November 2, 2012, and was soon responding so well her hopeful parents were able to take her home—after having spent 72 days in the hospital. And the gift of life that had launched Matilda’s journey to health is something that Kelly found both astonishing and humbling. “During what I would imagine was the most painful part of somebody’s life where they lost a child,” she says, imaging the donor family’s perspective, “they were able to give someone else a chance—to give me the opportunity to be Matilda’s mother and to give Matilda the opportunity to grow and shine. And that is absolutely beautiful.”

Repaying a Priceless Gift

While in the hospital, doctors had prepared the Smith’s for the possibility that Matilda may not develop as a normal child. That reality was with the family as they settled into life back in Canton, NY, where caring for Matilda would involve a strict medication regimen, routine blood work, Mount Sinai visits every three months, and additional considerations like the need to keep Matilda’s environment especially clean.

But at five months, Kelly was thrilled to see her daughter sit up—then go on to meet all major milestones. Now, 19 months after her life-saving transplant, Matilda is a thriving, beaming toddler, spending her days playing with big brother Parker.

With such an opportunity to celebrate life, Kelly had felt inspired to give back to the world that had spared her daughter. She started a blog, Cloudy Day Gray, on which she shares episodes of Matilda’s stay at Mount Sinai, as well as current updates on both children, and an assortment of colorful crafting ideas. And it was memories of the crafts that had helped her cope in the hospital that prompted her to embark on a whole new project.

“My premise for the blog is that we all have cloudy days—it’s what you do with those clouds that defines who you are,” says Kelly. “Since leaving the hospital and doing the blog I’d really been wanting to start making craft packs for the parents of the PICU at the hospital.”

Kelly’s idea was to assemble bags of crafting supplies—each with the components of a different project—and donate them to families currently in the Pediatric Intensive Care Unit (PICU). With the help of Provo Craft (makers of the Cricut ExploreTM ) and three other bloggers, the project steamed ahead, and after weeks of preparation Kelly had 15 completed packs consisting of a stenciled canvas bag containing the supplies needed to make a pinwheel, finger puppets, or colorful bunting. With the plan of bringing a supply of craft packs to Mount Sinai for each of Matilda’s three-month visits, Kelly brought the first “shipment” of packs to the PICU in March.

“I really believe that when you can smile and be joyful in the hospital room, it changes everyone’s outlook,” Kelly says. “Crafting gave us the chance to talk about something that wasn’t so heavy, which also helped us see the people taking care of our child in a different way, and the dynamic became warmer. And that’s what I want for other people—to bring happiness into their hospital rooms.”

In addition, Kelly hopes the involvement of the other blogs—Kids Stuff World, The Proper Pinwheel, and You Are My Fave—will help spread awareness about pediatric organ donation to wider audiences who may be as naïve to the struggle of children waiting for new organs as she once was.

Spreading Smiles

Not long after Kelly’s first delivery, the craft packs had been very well received. “I have worked with many families who have commented on how the projects have brightened up the room,” says Angela Koeneker, Creative Arts Therapy Manager of the Child Life Program. “I have also seen many kids using the pinwheels when they are completed.”

And Koeneker is mindful of the spirit of giving behind those brightened rooms. “We are so grateful for Kelly's generosity and creativity,” she adds. “What a wonderful gift to use her own experience in the hospital setting to improve the stay for other patients and families.”