Alyssa and Ability360 Caregiver Maria smile for the camera.

Unsung Heroes: Celebrating Caregivers Part 2

Unsung Heroes:
Celebrating Caregivers Part 2

Story and photos by Anja Benjamin

In this profile, we are introduced to a caregiver and consumer whose unique friendship blossomed despite one…or two…generation gaps.

It is a sunny, cool afternoon in San Tan Valley. I am greeted at the front door by Maria, one of Ability360’s Home Care Services caregivers. As I open the door, “Rocky”, a Chipin Applehead Chihuahua, darts out into the front yard. Before introductions can be made, we must corral this little flying squirrel back into the home. More about Rocky’s story later. Alyssa and her mother, Kati, both greet me and we all make our way to the dining area to talk. Maria currently cares for Alyssa, who is 17 years old.

Alyssa’s journey has not been an easy one.

Born with Spina Bifida (“open spine” means that the spine is open like a zipper that doesn’t zip closed all the way), Alyssa had issues with Type II Arnold-Chiari malformation, tethered cord, hydrocephalus, syringomyelia and kidney-related issues, including high blood pressure and hydronephrosis. Alyssa received a tracheostomy at just three months of age.

She has undergone 14 plus surgeries throughout her short life, including three on her brain stem.

In 2010, Alyssa underwent Chiari decompression surgery on her brainstem to relieve tissue crowding and pressure. The brain stem connects the cerebrum with the spinal cord and controls our most vital autonomic activities: heart rate; breathing; digestion; arousal; alertness and swallowing. Prior to this surgery, from age 2 to 12, Alyssa had walked with a walker. Her voice, leg function and her ability to swallow were all compromised afterward. Alyssa had to get a permanent feeding tube. Brain swelling caused additional issues. Prescribed steroids wreaked havoc on Alyssa’s already weakened immune system. Alyssa sees many specialists, and in addition to Maria, Alyssa has a part-time nurse that comes to the home.

“There’s something about her essence,” Maria tells me matter-of-factly. Maria has been officially caring for Alyssa for two years now. Maria ran her own daycare for 21 years. She met Alyssa through Alyssa’s grandmother, with whom she was conducting wellness classes. Alyssa’s grandmother was a nurse for 42 years and Maria, a Wisconsin native, is a naturopath, using nutrition and essential oils in a holistic manner to promote healing. Maria had suggested peppermint oil for Alyssa’s headaches. In addition, Maria discovered that Alyssa was mainly being fed sugar, with minimal nutrition. Maria and Kati replaced the tube-feeding formulas with natural options, which have led to Alyssa having gone a year without any hospitalizations. Maria continues to massage essential oils on Alyssa’s temples, which helps prevent her headaches.

Maria and Alyssa hit it off right from the start. They began Face Timing with each other within 24 hours of meeting. Alyssa asked Maria to teach her to paint. The duo now spends a lot of time painting together. Alyssa is quite the talented artist. She has sold several of her paintings. Kati brings three of Alyssa’s recent pieces of art for me to see. They’re stunning. One of the paintings has a Green Bay Packers theme. This has been Alyssa’s favorite NFL team way before her connection with Maria, who hails from Wisconsin.


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This brings us back to Rocky. Maria bought Rocky for the two of them to share. Maria takes responsibility for feeding and cleaning up after the puppy, and he goes home with her. Rocky will ride on Alyssa’s chair with her when they go for walks in the neighborhood. He licks her cheek and is completely full of adorable mischief.

Alyssa is surrounded by love and support via a blended family. She attends school both in person and online. She is co-editor of her school’s newspaper. Since Alyssa’s voice is very weak, she is excited that she will soon be receiving assistive technology computer equipment from Northern Arizona University. This will enable Alyssa to work more independently on the computer at home.

Maria and Alyssa playfully tease each other throughout their time together. Maria will comb Alyssa’s hair, dress her and “water her” (tube-feeding). They both have a love for music, and Alyssa laughs out loud when Maria tells me that she does the chicken dance, Macarena and the cupid shuffle all for Alyssa’s amusement. Maria and Alyssa do crafts together, whether making jewelry, sand art or painting. They are often engaged in a collaborative activity when together.

Kati speaks to her daughter’s strength in the face of daily adversity and how it’s a privilege to be her mother. Kati states it is important to keep Alyssa’s mind occupied, so as to keep negative thoughts at bay and maintain her normally upbeat, positive attitude. Kati asserts that Alyssa is the happiest kid in the house and that she is generous toward others. She gives great advice and is the first to reach out to family members in other states and keep everyone connected. Maria states that Alyssa reasons conscientiously like a 35 year old yet can have fun like a 5 year old.

When asked what the connection between Alyssa and Maria has meant to her, Kati replies, “So much. Alyssa was missing something.” As her mother, Kati fulfilled her role completely. Yet, Kati knew that Alyssa needed someone else with whom to talk and do things.

I literally prayed for someone for her. I felt like I needed help cheering her on. It’s [their relationship] meant the world to me.”

Maria refers to her relationship with Alyssa as a “17 year old with a 50-year old BFF”. It’s certainly a unique pairing, one that is obviously cherished by both Maria and Alyssa. Maria is certainly much more than a caregiver, providing respite for Kati and companionship and care for Alyssa. Maria is first and foremost a friend and family member, trusted and embraced as only a true friend can be.

Learn more about Ability360 Home Care Services at www.Ability360.org or call (602) 256-2245


Anja Benjamin
Writer

A transplanted Southern belle, Anja Benjamin has lived in the Valley of the Sun for 5 years. Married to Dennis and mother to a 19 year-old cat, Jett, she loves Jimmy Fallon, Twizzlers and a cheering on SEC teams. Anja has been the Executive Assistant at Ability360 for just over 5 years and is currently enrolled in a graduate program at Grand Canyon University.