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Make-a-Wish Foundation brings music to young child’s world

Although he is not quite 4 years old, Will Umstead's life has been filled with visits to the hospital, numerous surgeries but most importantly, the love of his adoptive parents Heather and Tom Umstead, and that love has carried him beyond expectations. And now, because of the Make-a-Wish Foundation, Will is going to be able to expand his gift for making music.

When the Umpsteads first adopted Will, the prognosis was not good. They were told he probably, with all of his medical conditions, would only live for months. The Umpsteads, who are the parents of two other adopted children with disabilities, were undeterred.

Because Will was born with complex congenital heart defects, by the time the Umpsteads got him from Indiana he was a little over a month old, and had already had his first heart surgery.

"His journey has included major heart surgeries, including the Fontan procedure and the many challenges that come with living with a complex heart condition," Heather said.

"A long story short, he had two more open heart surgeries along with a bunch of catheterizations. His last open heart was in May, and that is the last. They can't really do anything else, so we're praying that's it for him. So with that surgery, he got the Make-a-Wish," she said.

Next came trying to choose what Will's wish would be. They really wanted him to be able to pick what he wanted, but Make-a-Wish said that they needed to decide now. Because of his brain abnormality, Disney World was not a good option,

"But Will is so much more than his medical history. He is a little boy with his own personality, interests and things that bring him happiness and one of his greatest loves is music, especially drums," Heather said.

"He loves to drum, and he can keep a beat like you can't believe. He can keep the beat and the off beat. So he's actually really somehow talented...It's pretty cool. But anyways, we're in the process of putting a music room together for him," she said.

Through Make-a-Wish, the Umsteads are putting together a music room complete with music, drums, lights, bubbles and sensory experiences where he can play and explore.

"As his family, we know how precious these moments are," Heather said. "After spending so much time worrying about surgeries, hospital stays and what the future may hold, the opportunity to focus on something joyful and exciting means more to us than words can express," she said.

Although the Umsteads had wanted to build a separate room for Will's music room, costs prohibited that from happening so they are now clearing their living room for that instead.

There will be two sets of drums, one electric and one non-electric, a keyboard, a xylophone, a computer so he can make his own music, a microphone, a rocking chair and a bubble machine.

"You wouldn't believe all the things they sent him," Heather said.

She said that initially when Make-a-Wish asked what they needed for the room, the Umpsteads just named a few things, but the foundation encouraged them to expand what they were asking so Will now will have a more complete experience.

"We would ask for a couple things. They would be like, "Well, what do you think?" And we're like, 'Well, drums are his favorite, so definitely drums.' And then we would send it back, and they would say, 'Well, we've never really had a wish like this, so we want to make sure it's just what he wants.' And so they kept on sending it back...every time we would send it to them, they'd say, 'Make sure it's what he's gonna love,'" she said.

"I just think it's like a beautiful time, and I feel like ever since we brought him home, life has been kind of on edge," she said.

She shared that Will has to take medicine first thing in the morning on an empty stomach and then he has to wait 45 minutes before he takes more medicine and then he eats and then takes another medicine.

"So your whole life is like keeping him alive, pretty much. And this is like something good. It's something to look forward to...It's just been something really beautiful in the midst of all of this stuff...That's why we tried really hard to put a lot of thought and stuff into what would be good for him because I feel maybe this is something that will grow with him. And when he's having a rough time because he will, it's inevitable. His life is gonna be a rocky road, you know. So maybe music will help him to cope with that, and that's what we've seen so far," she said.

Heather shared that the family has stayed in touch with Will's mom through weekly telephone calls and even visited her on his last birthday.

"Music was a big part of her pregnancy when she was carrying him and in the hospital. And we went to visit them last year for his birthday, and they danced together and sang together. It was really cool. So we're really hoping that this room will be more than just like a one-time Disney World trip," she added.