Tyler and Alie are the parents of three children who were each diagnosed with different disabilities: Asperger’s syndrome, Anencephaly, and Albinism. And even though their daughter with Anencephaly did not survive more than a couple days after birth, each of these children has brought them so much happiness.
Diagnosed with Anencephaly Before Birth, but Decided to Keep Child Anyways
Amelia was born second out of their three kids, but she was the first to receive a diagnosis. When Alie was 20 weeks pregnant with Amelia, they found out she had Anencephaly, which would affect the growth of her brain stem. Because of this, Amelia was not likely to survive after birth and could even possibly be stillborn.
When faced with the decision of whether or not she should terminate the child, Alie’s initial reaction no. “I felt her kicking when the doctor was telling us that our baby had a fatal birth defect and there was 0% chance our baby would live, and I was feeling her kicking inside of my belly, and I just knew that we had to see this through to the end.”
“It wasn’t my choice as to when the ending was; I wanted her to choose, and that was important to me…We really didn’t know a lot, but we knew enough that this was a spirit inside of me, this was our child, and there was no way we could terminate our child’s life.”
Tyler and Alie wanted to spend all the time they could with their daughter while she was still in utero, even if she was going to die. It was difficult to tell people of that reality when they would offer congratulations to them. Tyler and Alie also moved during their pregnancy, so they were away from family and church friends.
Before she was born, Tyler and Alie did a lot of research about donating Amelia’s organs to other babies who might need them. Baby Amelia was born and lived for two and a half days. She was able to come home and spend time with her family before she died. Since she lived for so long, only her heart valves could be donated rather than more of her organs. However, they were grateful for the extra time they had with Amelia and the one baby they were able to help.
Son given Albinism diagnosis as a Newborn
Owen is their third child. At first, Tyler and Alie were relieved that their baby did not have any problems, since the death of Amelia had been so hard on them. A week after his birth, however, Alie started noticing that Owen’s eyes started quivering whenever he saw light. Convinced that something was wrong, they took him to the doctor, where he was diagnosed with Albinism.
Albinism is caused because a person doesn’t have enough of the pigment Melanin. As a result, their skin looks very pale all the time. Melanin protects your eyes from UV light and other bright light. “The pigment is what blocks a lot of UV rays, so it is also in our eyes and prevents a lot of light from flooding into our eyes. As a result, [Owen] has a whole slew of eye issues,” Tyler said. He is legally blind and is learning to use a cane right now; they also want to get him started learning Braille. Despite his disability, he is very happy and is going to start playing soccer soon.
“We’ve all embraced his albinism,” Allie said. “When he was a baby, I was in that grieving process, and I wished every day that he didn’t have this and that it would just go away, and why us, why us. Now my perspective is totally changed; I couldn’t see him any other way as it’s just who he is.”
Jack is their son with Asperger’s Syndrome
Alie’s and Tyler’s oldest child, Jack, was diagnosed with Asperger’s syndrome when he was four years old. They were surprised they did not realize that he had a disability beforehand. In fact, they found out their younger two children had disabilities before he was diagnosed. Jack has a hard time socially and cognitively, especially understanding emotions. When they realized something was different about him, they went to see the doctor.
“We didn’t get that diagnosis just so that we could apply a label to him; we got that diagnosis so that we could learn how to help him,” said Tyler. He and Alie feel sad that they didn’t find out about his diagnosis sooner so that they could help him progress before now.
Disability can be Empowered by Knowledge
Tyler and Alie feel it is important for their children to know what they are up against. “We like more information; we feel empowered with information,” Alie said. “We feel very strongly as a family that it helps our kids to know their diagnoses, so Owen knows he has Albinism, and Jack knows that he has Asperger’s, and it’s just very factual. This is what it is. It opens up doors for us to talk about it and normalize it, because this is our normal.”
“My engineer brain tells me that rather than looking at it as a label that you apply to people, you really think about a symptom and a fix,” Tyler said. “Rather than looking through the lens of “Owen has Albinism,” let’s find some fixes. Owen is tripping over the curb, so how can we help him not trip over the curb? What’s the cause of that, and how can we help him to do that on his own? You have to take a lot of extra care to teach them no matter what your child can or can’t do. They actually can do a lot, and chances are they can do more than you’ll feel like they are able to do when you first find out about your child’s diagnosis.”
Tyler says knowing people with disabilities helps him to relate with more people. All people struggle with something or need help in certain ways, and that is okay. “Just remember the way that you feel when you’re around these precious children” Tyler said, “and think about the people around you in a different way, because a lot of us are intimately connected to our children and the struggles that they face.”
Alie and Tyler have no regrets about having their three children. They are especially grateful that they chose to keep Amelia rather than terminate the pregnancy. Alie feels that these three precious children were meant to be apart of their family, no matter what distinct challenges they face.