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| Olivia Baute arrives home after a day of lunch with friends. While this may seem routine for any 21-year-old, for Olivia, any outing is an accomplishment. As she battles a plethora of complicated diagnoses and genetic mutations.What others may see as misery, Olivia attacks with the intent of conquering and finding joy. |
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| When Olvia arrives home, she is met with one of the many challenges of the day: inaccessibility. Many of the doorways within her own home do not meet Americans with Disabilities Act (ADA) standards. Since the contract on the house was signed prior to her being fully wheelchair bound, the contractor was unwilling to make the needed accommodations in the house. |
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| In order for Olivia to be able to access the items she needs from the pantry, the items have to be closer to the sides so she is able to reach them. "Accessibility is one of the biggest challenges," said Baute. "Everything is just so inaccessible, even in my own house." |
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| Olivia greets her favorite furry floor nurse, Ollie. "One of my favorite parts of the day is when I wake up in the morning and Ollie jumps on my bed to greet me," said Baute. |
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| Stairs located anywhere pose a challenge for Olivia to move about, but these challenges have not stopped her from finding joy. "I've really shifted my perspective to enjoying the small things so like if there's a pretty sunset, or when Ollie runs in my room. I think that perspective has really helped me a lot because it applies no matter what's happening. It's exciting to see your friend on a regular day, and it's exciting to see your friend walk into your room in the ICU when you're awake on a ventilator." |
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| Olivia uses an adaptable knife to cut her strawberries. After being on a ventilator three times, it caused her to lose most motor function in her legs, and some motor function in her hands. |
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| Baute approaches every day looking for adaptations or ways to make her life easier and allow her to be more independent. With an accommodating knife like this, she has the autonomy to go and make her own snack. |
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| Medication preparation is what consumes most of Olivia's days. She has an entire closest dedicated to store medications and supplies needed for daily life that's just outside her room for easy access. |
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| Olivia gathers her medications for the evening and the next morning. "I usually spend about 2 hours at night prepping everything for the nighttime, and everything [I can] for the next day so I don't have to do as much," said Baute. |
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| Baute moves to her medication preparation station located in her room. This allows her to keep all of her medications for the day neat, organized, and easily accessible in the privacy of her own room. |
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| For Oliva, needing constant assistance only fuels her fire to become as independent as she can despite her limitations. Something as simple as managing her own medication in her own space is very liberating. |
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| While the time she devotes each day to stay healthy is lengthy, she is grateful for the opportunity given her extensive medical history. "At this point, our perspective as myself and as a family has changed. There's so much I can't do and it really sucks, but there's also a lot I almost didn't survive to get to do." |
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| She reflects on her fight to survive as she finishes up the last vial for her nighttime syringes. "I just celebrated my 21st birthday and when my birthday rolled around I thought, 'wow, at one point they wouldn't think I'd be celebrating 21 and here I am," says Baute with a smile. |
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| Olivia then administers some medication needed after finishing up her organization. It is a process that requires attentiveness, organization, and focus to be done correctly. Correct medication administration is the difference between feeling decent, and making a visit to the Emergency Room. |
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| Olivia then moves on to prepare her fluids for the night. This process is slightly easier because her fluids only needs to be changed every 12-24 hours. |
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| Baute hooks the tube to her fluids. Baute feels accomplished to do this on her own because before she has a central line, a nurse would come and put and IV in every three days. A central line is a tube that is inserted into a large vein near the heart to make it easier to administer fluids. |
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| However, after the morning and night time medication preparation is complete, there is still more to do. Now it's time for Olivia to take some of her daily required medication. |
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| Olivia pushes the medication through her central line. "I [prepare my medications] all throughout the day basically. I have meds at least every 4 hours," said Baute. |
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| Throughout the hardship, Olivia chooses to live her life with joy that continually inspires those around her. "There are so many people that refuse to believe that you can have joy in a life like Olivia's," said her sister, Emily Baute. "That's why I think it's so cool that [Olivia] values such small moments so much because they end up being big things when you think about it." |
