Meet Kirsten. She is a wife and mother who cares for her husband who is a quadriplegic and her adopted 2-year-old son with special needs.
Kirsten provides care not only for her quadriplegic husband, but also a special needs son who is adopted. She is a registered nurse and previously provided private duty nursing care to children with special needs. She has been married to her husband Drew for almost 5 years and began learning the aspects of his care while they were dating.
Drew is a C4-5 incomplete quadriplegic as a result of a diving accident that happened when he was a young teen. They are proud parents of a 2-year-old boy they fostered and then adopted in April 2017. Currently, they live in a home they custom built in 2013 to meet Drew’s needs.
Kristen and Drew met in early 2011 thanks to Drew’s cousin who was in nursing school and carpooled with then 22-year-old Kirsten. Drew was 24 years old and working as a computer programmer for the state. He lived at home with his parents who were also his caregivers. Drew’s cousin happened to mention him to Kirsten when they began learning about spinal cord injuries (SCI) in class.
Kirsten’s curiosity resulted in her seeking Drew out on Facebook. She thought he was very cute. Kirsten sent him a brief message saying hello and that they had talked about him that day in class because the topic was about spinal cord injuries. At the time neither was looking for a relationship. But they began communicating through Messenger, then texting and eventually Skyping with each other.
Kirsten was never concerned that he had an SCI and used a power chair. However, sometimes you find what you think you’re not looking for. In the fall of 2012, Drew asked Kirsten to marry him and she accepted his proposal without hesitation. Drew had first asked her dad for permission to marry her. And though Kirsten’s dad was to keep it a secret, he “let the cat out of the bag” in his excitement before Drew actually got a chance to propose!
Although Kirsten does the majority of Drew’s care, he is quite independent once he is up and ready for work. Drew also helps with the chores that he is able to do and they work together well as a team. He loves to cook and is the tech-savvy partner. He handles almost everything that can be done with a computer and phone.
Kirsten is always the last to go to bed and first to get up to start her busy day – which becomes even busier when faced with unexpected issues relating to either their son’s or her husband’s health. She has spent many nights in the hospital as a result. Even on the days when she is not feeling well, she continues to press on. A recent trip to the ER for her own health issues did not deter her from continuing to direct care from the hospital for both her husband and son. How many caregivers can relate to this?
Kirsten and Drew are amazing parents to their son Michael who has significant needs that far surpass those of Kirsten’s husband. They began fostering Michael at 40 days old and the adoption was finalized when he was 7 months old.
Michael has a list of diagnoses that increases as additional health and educational issues are recognized. He is a child with fetal alcohol syndrome and has what appears to be severe gastroparesis (though no official diagnosis as of yet), chronic lung disease and aspiration, and hypertonia among other health issues. His complex care requires physical, occupational and speech therapy as well as 16 to 24 hours of daily continuous feeding through a feeding tube, breathing treatments, and a list of other care modalities that would seem impossible to those not acquainted with what it means to care for a child with complex needs.
While Kirsten’s life is full of difficult challenges, she feels very blessed to be married to a loving husband and a mom to such a delightful and adorable son. Yes, she has many days where she wonders how she will ever manage it all, but she does! Her determined spirit, admirable courage and loving heart help her to press on no matter what. Even with all she has going on in her life, she continues to find time to help others in her community and runs an online support group for SCI caregivers.
Kirsten’s major struggles are self-care and how exhausting it is advocating for her loved ones. She believes organization is key to making her life less complicated and does not hesitate to let her husband take on as much responsibility as possible. Kirsten also derives support from others who are experiencing the same issues as her.
Though this just a small glimpse into what Kirsten deals with and accomplishes on a daily basis, hopefully it will encourage others to know they are not alone in their struggles and challenges. Kirsten also recognizes that she does have a supportive biological and church family. She also has good friends, which often is lacking in other caregivers’ lives.
With all she does, it’s no wonder that those who know her best call her Superwoman! But Kirsten sees herself as just one of many who are doing the best they can to manage given the difficult challenges in their everyday lives.
Kirsten certainly is a positive role model to other caregivers and wants them to know there is always hope no matter what they may encounter.
5 things to take away from Kristen’s story:
- Love knows no boundaries. A happy and successful marriage is possible when one spouse is a caregiver for the other.
- Split up the to-do list so each person can do what suits their abilities.
- Practice good self-care. (Learn more about self-care from Caroline’s Caregiver Series
- Actively seek and accept support from family and your community when needed.
- We can find hope when we hear each other’s stories! It helps to know we are not the only ones.
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The opinions and experiences presented herein are for informational use only. Individual results may vary depending on your condition. Always consult with your health care professional. This individual has been compensated by Bard Medical for the time and effort in preparing this article for BARD’s further use and distribution. BMD/BMDA/0119/0764