By Liberty Montague, Vernal Express
One year later, Clarissa Milton still has to keep a close eye on her son, who cannot go to the park to play because of his ongoing medical issues. So on Saturday, the Make-a-Wish Foundation granted the 4-year-old Maeser boy’s wish and gave him his very own playground.
“When he had the chance to make the wish I asked him what was it he wanted more than anything,” Clarissa Milton said. “The big thing Make-a-Wish does every year is a trip to Disneyland, but he can’t go. He can’t be around people. He can’t go to the park, so we picked him to have his own park.”
Michael has had to overcome challenges, but he and his mother have a lot of support from family. Michael’s aunt, Teresa Crowley, had the playground set up at her house because Clarissa Milton had to give up everything to care for her critically ill son before and after the transplant.
“She left her job, everything she owned had either been foreclosed or repossessed, it’s here because we aren’t going anywhere and he can come use it whenever he wants,” Crowley said. “If we ever move away, we would sell her our house so she could have a place.”
While Michael enjoys his personal playground, there is still a concern about the potential for a life threatening infection.
“We don’t have our fence up yet and if neighbor kids come and play on (the playground), then it’s contaminated,” Crowley said. “We also can’t put wood chips or sand down at the bottom of it because of animals. He can’t at all be around cats and that would be the last thing we would want to have a cat use it for, a litter box, so we need to get a rubber mat or rubber chips.”
Milton has had difficulty finding an apartment to move into with her son. She pays extra rent each month for the place they’re in now because she had the landlord install new carpet and paint the apartment to protect her son’s fragile health.
The family struggles with medical bills as well. Michael needs medication that would cost his mother $600 a month if she loses her Medicaid coverage.
“We are fighting to keep Medicaid as a secondary insurance because if she can’t keep it then there is (the) rent and she would have to move in with us,” Crowley said, “We are looking into building an extra house on our land so they have a place that’s up to what they need.”
Crowley said the miracles with Michael began when his mother was eight weeks pregnant and the doctor couldn’t find the boy’s heartbeat. The doctor decided to check for a heartbeat one more time before performing a procedure to treat an incomplete miscarriage and found the sound of Michael’s heart.
Then, mid-pregnancy, Milton had an ultrasound and it was discovered that Michael only had half a heart. It explained why his fetal heartbeat was so faint.
Since birth, Michael has had four open heart surgeries and about 30 other surgeries, in addition to heart transplant surgery.
Michael is only allowed to be around his brother and cousins. His weakened immune system is acclimated to them and his mother and aunt know what to look for when it comes to protecting Michael from germs.
“I watch my kids almost as closely as we watch Michael because he’s around them all the time,” Crowley said. “If they show the slightest sign that they might be getting sick, I make sure Michael isn’t around them till it’s gone.”
Milton said the experience has always been hard, but she can’t allow herself to break down too much when some new problem presents itself. She needs a level head to deal with the life or death situations, she said, and she’s grateful to have her son.
“We were lucky we caught it before he was born,” Milton said. “I met a couple whose kid had a heart condition and they didn’t know but right after she was born she turned blue. We were lucky to have known because Michael would have died without surgery.”
Michael’s first surgery took place when he was 3 days old. It was scary at first, Crowley said, but now they’ve weathered surgery so often that it’s become routine.
Even though he has had a transplant, Michael still has frequent visits to the hospital.
“He doesn’t mind going to the hospital,” his mother said. “He has all these cute nurses and he gets cookies at midnight if he wants.”
Milton and Crowley both feel strongly about organ donation after being touched by it on such a personal level.
“Our biggest mission now is to tell other people the good of organ donation,” Crowley said.
Milton said she hopes the family who donated their child’s heart to her son knows how much good they did.
“When you get your driver’s license, of course, you sign on as a donor because you are in a rational state of mind,” she said. “You can think ‘Would I do this? Yes, I think I would.’ But people need to make that decision for their whole family when they are calm.
“Nobody should have to make that decision in the middle of a tragedy,” she said. “The doctors have to ask, and they have to ask fast, right when they tell you something terrible happened.”
Milton acknowledged that before her son needed a transplant, she probably would have refused to donate her own children’s organs if presented with the situation.
“But after being on the other side, somebody’s baby died so my baby could live,” she said. “His life was saved by someone else’s decision. A stranger’s family decided for him to live. I hope they know how amazing that is, to give that to somebody they don’t even know. Somebody cared enough to save his life.”
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