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Sarah’s Story: Adapting Toys & To A New Normal

April 30th, 2022  | HIElights of Hope

Name: Sarah Kirkpatrick

Location: Alabama, United States

Child’s Birth Year: 2017

Keywords: Advocacy Work/Blogging, Cerebral Palsy

In 2017, Sarah and Russell welcomed their first child, Stella, into the world. During her pregnancy with Stella, Sarah was always a little on edge, as she had previously had a miscarriage at fourteen weeks. For the most part, though, there didn’t seem to be major complications with her pregnancy.

At thirty-five weeks, Sarah began to experience back discomfort, so, to play it safe, she went to the hospital for a checkup. About two exits away from the hospital, as they were driving, Sarah felt a vague popping sensation, and thought that her water broke. At that point, she was excited. She knew that, while babies born at thirty-five weeks were considered premature, they often look like full-term babies and had organs developed enough to be relatively healthy.

Yet, as she looked down, her excitement quickly turned to sheer panic—instead of seeing watery fluid, she realized she was gushing blood. The remaining car ride was traumatic for Sarah, but was also for Russell, who had to concentrate on driving safely, though his wife’s health was inexplicably deteriorating.

At the hospital, Sarah was immediately taken away to deliver Stella, while Russell was told he couldn’t go into the delivery room. All he was told was that there was a 50-50 chance that Sarah would survive and virtually no chance that Stella would survive. In the waiting room, he wondered how, in a matter of seconds, pure excitement could turn into pure terror.

When Stella was delivered, she wasn’t able to breathe on her own. It took eighteen minutes to resuscitate her, but even then, her prognosis looked bleak at best. She was immediately put on a cooling blanket and transferred to a hospital with a higher-level NICU, so Sarah did not even get to see Stella for the first few days while she herself was recovering.

After cooling, Stella didn’t transition well. She was constantly having seizures, and it took her weeks to get off life support. From the beginning, the doctors were preparing Sarah and Russell to say goodbye, informing them that Stella barely had any brain function or functional movement.

Yet, slowly but surely, Stella started to come around. She began making eye contact with people, interacting more, and she finally began to smile. Now, although Stella is still pretty severely affected—she has quadriplegic cerebral palsy, a feeding tube, and epilepsy—she is doing better than anyone originally expected. A goofy toddler, Stella is nonverbal, but she is still very expressive. She loves cartoons, cats, going in the pool, and playing with adapted toys. In general, she is a very happy, easygoing kid.

With each passing day, Sarah and Russell learn new things about Stella. In the early years, they weren’t sure how much Stella was able to comprehend when they spoke to her. Now, it’s becoming increasingly apparent that, while Stella may not be able to verbalize her thoughts, she has a clear grasp of what’s going on around her. To bridge that gap in communication, Stella is currently working with an eye gaze device so that she has an additional avenue to express herself. Sarah is constantly inspired by the resilience Stella shows, in spite of all the barriers she has to face at such an early age. For instance, even two minutes out of a surgery, Stella will already be smiling and giggling. And throughout the pandemic, Stella has continued to bloom, becoming so much more social and active than she ever was before. For Sarah, witnessing how much Stella has grown over the years has been nothing short of amazing.

In the beginning of her journey, Sarah left the NICU feeling so clueless. It wasn’t until she found Hope for HIE that she received some answers, with the biggest answer being to try not to predict the future. As a parent, she got Stella involved in therapy from an early age, but the group helped her realize that she didn’t have the power to determine what outcomes Stella would and wouldn’t reach. In those early days, Sarah read other parents’ stories, desperately trying to find a future she could stomach. When she found a story she could mentally accept, Sarah thought, “Okay, well maybe everything won’t be so bad…maybe Stella will be like that kid.” What she soon learned, and what she wants stress to other HIE parents, is that comparison truly is the thief of joy. It’s difficult for parents, both within and outside of the disability community, to see an image of a child rolling over or walking and not automatically think, “Well, my child isn’t doing that yet.” But what drastically helped Sarah cope with her circumstances was trying to find peace and joy within her own situation. Once she focused on appreciating Stella for where she was at, Sarah was able to remain grounded in the present and enjoy motherhood more than ever before.

Early on, especially in rural Alabama where they live, Sarah noticed a major gap in access to quality treatment for children with disabilities. Local healthcare and therapy is hard to come by, so Sarah drives two hours with Stella to take her to a children’s hospital where physicians have experience treating children with similar disabilities. Sarah also noticed that many of Stella’s local physicians treated her as if she was a neurotypical child, which was far from the right approach.

In Alabama, there is no form of disability waiver to help cover the financial costs of Stella’s treatments, appointments, or equipment. While Sarah and Russell are fortunate enough to have private insurance that covers the majority of the costs, even having to pay a portion of Stella’s therapy sessions or expensive equipment out of pocket quickly adds up to the cost of a second mortgage. Sarah cannot begin to imagine the financial difficulties that families even moderately below her income level have to face when it comes to raising a child with a disability. Parents should never be forced to make the decision between putting food on the table or giving their child access to much-needed treatment. Sarah hopes that, as a disability parent and advocate, she can share her experiences to help others realize that this lack of both financial and healthcare support needs to be addressed.

Sarah decided to immerse herself in advocacy work to make the journey a little less daunting for other parents like her in the disability community. In line with the global slogan for the disability rights movement, “Nothing about us without us,” Sarah realized that she couldn’t serve as an ally to those with disabilities without first engaging and talking with people who have disabilities themselves. From both her personal experiences and interactions with people with disabilities, Sarah has come to understand the inadvertent harm that comes from the “inspiration culture” (e.g., the story that those with disabilities are to be pitied). In her own life, many well-intentioned friends and followers on social media have put Sarah on a pedestal that she never asked for, calling her a “super mom” for all she has done. However, when people make comments like this, it makes it seem like Stella is some obstacle that Sarah has had to overcome, when that could not be further from the truth. In reality, becoming a mother to Stella has been Sarah’s greatest blessing. Sarah wants people to know that they don’t have to feel sorry for her circumstances, because she certainly doesn’t feel sorry for herself. Like any other parent, she just wants to make sure Stella’s life is as happy, fulfilled, and equitable as possible—this drive is what keeps her swimming against the currents of uncertainty.

Through her various social media platforms, such as Instagram and TikTok, Sarah posts DIY videos and hacks for how to adapt generic toys in an affordable manner. As Stella’s mom, Sarah aims to give her daughter everything and anything to make her life the best it can be. Stella loves playing with toys, but because of her motor planning issues and difficulties with fine motor skills, she needs adapted toys to match her abilities. Since many adapted toys cost upwards of $100, Sarah decided to explore shortcuts to make generic toys more inclusive of Stella’s needs. Alongside Russell, she uses their soldering iron to transform “normal” toys into switch adapted toys. Anytime Sarah finds simple solutions, she passes on that knowledge by posting tutorials across her social media channels. Sarah appreciates the work of nonprofit organizations like FairPlay, which hosts free workshops on toy adaptation. Ultimately, Sarah is ignited by her passion to a) promote inclusivity, by ensuring that children with disabilities have opportunities to engage in play like their peers and b) to help alleviate some of the financial burdens that families of children with disabilities face.

Although Sarah has only been actively immersed in the disability rights community for just over three years, she has already seen incremental changes being made to increase accessibility in society. She feels hope on her Target runs when she sees that they are now selling G-tube-accessible clothing or when she sees parks becoming more inclusive in Alabama. Despite the challenges that came with the pandemic, she feels hope that people are beginning to see that, when we are pushed to it, there are so many ways we can make the world a more accessible place. For instance, people are realizing that the practice of working from home is entirely feasible in many industries, which can be a game changer for those with motor disabilities, who have difficulty traveling from place to place.

She feels hope when she sees coffee shops run by people with disabilities, embracing the irrefutable truth that those with disabilities can still actively contribute to society. She feels hope when she sees how Stella has inspired students at the local high school to build adapted cars for children with disabilities. And while this change may be slow, it’s reassuring to know that, hopefully, the world Stella experiences as an adult will be more accepting of differences than the world we know today.

Being so vocal about her HIE journey and about disability rights has introduced Sarah to many amazing people. Now, when Stella goes to the hospital, the people Sarah has connected with in the disability parenting community are the first to send coffee or goodies. Before this experience, she never thought it was possible to form such strong and meaningful bonds with people she had never even met in real life. But now, she has become part of a global family, with parents, supporters, and advocates, who are on a collective mission to show the world that “disability” isn’t a bad word, nor is it something to be ashamed of. Instead, those with disabilities and their families can go on to lead fulfilling, meaningful lives.

So, to anyone who feels bad for Sarah, she would say, “Yes, my life has its challenges, but why feel bad for me? I feel bad for the people who go through life never having experienced the unceasing love I feel for Stella every single day.”

 

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