Name: Aimee McCarthy
Location: Massachusetts, United States
Child’s Birth Year: 2013
Keywords: Navigating Sibling Relationships, Communication Challenges, Cerebral Palsy, Work in Medical Field
Aimee is a special education teacher, wife to her firefighter husband, Rob, and mom to two beautiful daughters. Her daughters, Alice and Ruby, are eight and four years old, respectively. Though she worked with children with disabilities in a school setting, she never imagined she would have such intimate experience caring for a daughter with disabilities. But when Alice was born in June 2013 with HIE, life threw Aimee for a loop.
Alice was born ten days past her due date via induction at the local hospital. Although they didn’t know it at the time, a cord was wrapped around Alice’s neck. Upon arrival, Alice was pale gray in complexion, with Apgar scores of 0, 0, and 2. As Alice was rushed to be resuscitated, Aimee heard all this medical jargon in the background, wondering if she was on an episode of Grey’s Anatomy or if this was real life. She hoped it was the former, for this was nothing like the magical introduction into motherhood she had heard so much about. Rob’s experience was quite different. Because he was in the process of becoming a certified paramedic, he was painfully aware of the terms being used and, thus, the gravity of the situation.
Soon after, Alice was transferred to a children’s hospital in Boston to start cooling therapy. Aimee was briefly able to visit Alice the next day, but she had to recover at the hospital she had given birth at for a few days before she was fully cleared to leave. After Alice left, Aimee shut out virtually everything to protect herself from the hurt. Aimee vividly remembers having a conversation with her mother where she said, “At least the damage was only to Alice’s brain. The rest of her body is fine.” In hindsight, Aimee knows the brain does not work in silos, but that was something she needed to tell herself to maintain her sanity. But once the doctors came into her room, celebrating the fact that Alice had even made it to the Boston NICU alive, Aimee knew this was a matter of life and death.
A few days later, Aimee and Rob had a family conference to discuss Alice’s initial MRI results. The doctors gave them what seemed like the worst news imaginable—Alice would barely have any sensory or cognitive abilities whatsoever. They used the example that, if Alice was to lay on the grass outside to play, she wouldn’t even feel the grass beneath her or the breeze that was blowing. Aimee instantly turned on special-ed-teacher-mode, explaining that, even though Alice might not talk, there was so much technology out there that could help her communicate in nonconventional ways. But hearing that Alice might not be able to even learn how to use an augmentative and alternative communication (AAC) device was heartbreaking.
That night, after Aimee and Rob had more time to process their emotions, they turned to Google to attempt to make sense of everything they had heard. It was then that Aimee found Hope for HIE on Facebook. Back then, the group was much smaller, with only a few hundred other families. But still, the large range of outcomes was obvious, from a one-year-old already walking around, to a much older child who was in a wheelchair. At that point, while it was comforting to see that families and children with HIE were still able to lead happy lives, Aimee was understandably in denial of Alice’s potential developmental trajectory. She more so viewed herself as an outsider looking in, like she would never need to belong to this community because Alice would make a miraculous recovery.
Holding onto a sliver of hope that perhaps the first MRI was wrong, Aimee and Rob anxiously awaited to see if Alice’s second MRI showed a discrepancy in results. But after the second MRI only confirmed the grim results, Aimee and Rob made the decision to bring Alice home on hospice after thirteen days in the NICU.
What the doctors told Aimee and Rob didn’t align with what they were seeing at home. Although the doctors said Alice would be unable to sense her external environment or internal body, Alice began crying when hungry. She was not supposed to be able to feel hunger. Aimee and Rob didn’t want to have false hope, but even at Alice’s first visit to the pediatrician, she made eye contact with everyone. The pediatrician implied that, perhaps, they should seek out a second opinion, as it was clear that Alice was more aware of her surroundings than she had been credited for.
After a month of hospice, Aimee and Rob decided to transition Alice out of those services and start early intervention therapy. Although the early intervention workers decided Alice wasn’t ready for therapy, since she slept through her initial assessment, she eventually made enough progress to be eligible. After following the pediatrician’s recommendation to see a second neurologist, Aimee and Rob knew they had made the right call. Unlike the NICU neurologist, who painted a definitive picture of doom and gloom, the second neurologist left the door open for hope by naming the uncertainty that existed. She said that, while she couldn’t promise Aimee and Rob that Alice would walk or talk, she also couldn’t say that Alice would never do those things. Stating confidently that Alice’s trajectory would fall one way or another would be dishonest. From that point forward, Aimee and Rob began to assemble a complete team of specialists and therapists to make sure Alice had the best chance possible of reaching her full potential, whatever that would look like.
Those early years were confusing given all the vagueness surrounding Alice’s future. Aimee had difficulty coming to terms with the fact that Alice would not fall on the milder end of the spectrum of outcomes. Initially, Aimee had been set in her belief that Alice wouldn’t need a G-tube, that she would eat entirely by mouth. Alice was able to take a bottle and eat a bit by mouth, with a great amount of effort. But by the time Alice was three years old and began going to school, she was very socially aware, refusing to drink from a bottle in front of her peers. Aimee soon realized that it wasn’t productive to waste the entire school day trying to force Alice to drink from a bottle. She realized that, if a permanent G-tube would make Alice’s life easier, there was no reason to fight the recommendation for surgery. So, at three years old, Alice had a G-tube placed surgically in her abdomen.
In addition, when Alice was on the cusp of transitioning from preschool to kindergarten, Aimee was largely in denial that Alice needed a substantially separate classroom. She decided to hold Alice back a year, hoping this would give Alice time to develop before a decision was finalized. But after that year, Aimee realized that having Alice learn alongside her neurotypical peers for the entire day might not be what was best for her unique circumstances. Now, they’ve landed upon a comfortable balance between the substantially separate and integrated classrooms. While it may have taken Aimee some time to process, she is proud of how far she has come in terms of accepting all the equipment and accommodations Alice needs.
More than anything, what helped Aimee cope with this new normalcy was connecting with other families. Immersing herself in the Hope for HIE community allowed her to see that having a child with disabilities didn’t mean she had to stop living and enjoying life. Aimee began going to meet-ups with HIE families in her local area, where moms bonded with one another over their shared experiences, while the kids played together. In a sense, seeing other HIE kids in person instilled in Aimee a newfound appreciation for the uniqueness of each child’s journey, as well as gratitude for what Alice was able to do. By seeing other HIE children’s lived realities, Aimee realized that each child had their own challenges and strengths that cannot be truly appreciated and understood through hand-selected, highlight reel snapshots on social media.
Things started to calm down as Aimee and Rob adjusted to the niche HIE parenting experience. Aimee struck a comfortable balance between pushing Alice to try her hardest in her therapies, while also identifying those days where they both just needed to take a break to recuperate. Having a child with complex needs meant a busy, exhausting schedule packed with appointments. To avoid burnout for herself, and to give Alice typical, fun childhood experiences, Aimee loved doing activities, such as going to the movies or shopping with Alice. Simply getting out of the house and doing something normal brought a lightness that both Aimee and Alice needed in their lives.
To further enhance this lightness, Aimee began to think about how wonderful it would be if she could give Alice a lifelong playmate. When Aimee found out she was pregnant with their second daughter, Ruby, she was simultaneously over-the-moon excited and anxious. Though Aimee loved Alice regardless of the missed milestones, Aimee was excited to witness the “firsts” she had missed out on the first time around. But she was also anxious that something would again go unexpectedly wrong during the labor and delivery process.
To minimize the chance of history repeating itself, Aimee had a planned C-section with a wonderful doctor who had delivered one of her nieces. This doctor truly went above and beyond to make sure Aimee felt as supported and comforted as possible. On one visit with this doctor, a nurse gave her paperwork to sign stating that she was opting to have an elective C-section in spite of the risks involved. Just as Aimee was about to fill out all the forms, the doctor took them away from her. Instead, she told Aimee, “This is not an elective C-section. This C-section is necessary for your own mental health.” The fact that the doctor took the time to validate Aimee’s emotions and the trauma she had endured meant the world. To know that such an empathetic and kindhearted doctor would be the one delivering Ruby made a terrifying situation seem slightly less scary.
The initial days of learning how to navigate life with two children were rough. Whenever Ruby was held, Alice responded like any older child who no longer had all the attention on her 24/7—she started crying. That led to a chain reaction of Ruby beginning to cry and then Aimee crying from exhaustion. But at the same time, even though the crying fits were a lot to manage, thise feelings of jealousy were such a typical sibling response.
Because Alice had to explicitly be taught so many things, it was incredible to see Ruby just pick up on developments, such as crawling. As Ruby grows older, her sibling relationship with Alice remains typical in so many ways, despite their differences. Sometimes they fight over who gets to control the TV or who gets to play with a certain toy. But other times, they both crack up together. Ruby has become like a mini-therapist for Alice. She gets so excited when Alice responds to her questions using the Tobii-eye tracking device. When they are out driving, Ruby is concerned that Alice is well taken care of, telling her mother to remember to park in the accessible spot. Aimee is constantly filled with pride when she sees how this journey has not only made her and Rob so much more accepting of differences, but Ruby as well.
Now, Alice is eight years old and has the funniest personality. Although she is nonverbal, as she is learning how to communicate using her Tobii eye-tracking device, her sense of humor is shining through. Due to cerebral palsy, Alice requires a wheelchair to get around. Currently, she is beginning to trial motorized wheelchairs, while also learning how to move around using a gait trainer. Although the initial neurologist said that Alice would never feel the grass on the ground or the wind in the air, Aimee jokes that Alice feels the grass and the wind way too intensely due to her sensory challenges.
Overall, Alice is a super happy, social, and smart little girl. She absolutely adores going to school and is really popular among her peers. She has rigorous academic goals, as she is entering second grade, currently learning how to read and working on her math skills. Outside of school, Alice does quite a bit of therapy, with her favorite being aquatic therapy. For Alice, Disney World truly lives up to its catchphrase as the happiest place on Earth. The few times she has been there, her face lights up when she meets all the characters and is treated like a princess. Aside from playing with Ruby, Alice also loves playing with her cousin, who is only a few months younger than her. Whenever their children all hang out together, Aimee, her sister, and all the adults make sure that Alice is included in the activities, even if her way of participating may look a little different. Because of the way the family has treated Alice, it’s made it so that Ruby and her cousins treat Alice like any other child—a kid who just wants to be in on all the fun.
In the days and months following the trauma of Alice’s birth, Aimee never fathomed her family would be as joy-filled as they are now. She never imagined she would adapt to a new sense of normal, like one of those parents she saw when she initially joined Hope for HIE. This journey of watching Alice grow up has wiped away all those preconceived notions. Aimee has learned to shift her mindset from one where Alice’s disabilities needed to be overcome to one where the stigmatization surrounding disability and the barriers to accessibility need to be overcome.
If Alice never had HIE, Aimee probably would have been the parent who told her kids it was impolite to approach and ask questions of people with disabilities. Aimee now realizes that doing so only reinforces the notion that disability is something to be ashamed of. Many times, when she is out with Alice, little kids have asked why Alice is in a wheelchair. Aimee genuinely does not get offended. In fact, she would much rather have people ask questions than make assumptions based on how Alice looks at surface level. People who are hesitant to engage with the disability community tend to conflate Alice’s speech impairment with an inability to understand what is going on around her.
In the future, Aimee hopes a larger portion of society can realize that it really is okay to just say hi. For when you say hi to Alice, you will find out what an incredibly bright, good-humored, bubbly, and determined human being she is.
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