Motherhood is a beautiful yet challenging experience. The responsibility of caring for and meeting the needs of another life can be demanding, and for mothers with spinal cord injuries, these challenges take on a distinctive character. Coping with a life-changing disability can turn even the simplest tasks into difficult barriers, often requiring a lengthy rehabilitation process to regain basic motor and sensory function.
Anita Kaiser, a survivor of a life-changing car collision, exemplifies the resilience and determination required to overcome these obstacles and embrace the joys of motherhood despite her disability. At only 24 years old, she sustained a severe spinal cord injury (SCI) from the accident and became quadriplegic. She spent three months in acute care followed by a year in rehabilitation to recover basic upper limb functions.
Undeterred by this life-changing event, Anita refused to let her injury hinder her dreams of marriage and motherhood. After months of rehabilitation and with the help of a writing splint, Anita found herself pondering on the first words she would write months after the accident. With this newfound opportunity, she decided to write the names of her future children - a testament to her resilience in the face of the challenging injury she had experienced.
Empowered by the support of her family and boyfriend, she embarked on a journey of marriage and, soon after, became pregnant with her daughter, Olivia. This milestone began a new chapter in her life – navigating the world of parenting with a disability.
As she began her journey, she felt the pressure to represent the disabled community in the realm of parenthood. She was under the spotlight to prove that individuals with disabilities are just as capable as any other at parenting and felt afraid to make mistakes that would deem her incompetent in this role. However, taking a step back, Anita remembered the support and resources she could lean on to help throughout her parenting journey. This allowed her to fight against the uncertainty and anxiety of the immense challenge ahead.
To make the daunting task more manageable, she chose to break it down into smaller activities, which she focused on mastering one at a time. As she did this, she not only discovered her strengths but also uncovered practical tips and tricks that proved invaluable in caring for her daughter at different stages of growth.
Here are some of the valuable lessons she learned in her parenting journey as a woman with a spinal cord injury.
Breastfeeding
Breastfeeding can be a challenge for mothers with SCI, and varying concerns can arise depending on the level of injury to the spinal cord. Due to Anita's injury at the C6/7 level, she experienced difficulties with upper limb strength and trunk stability. As a result, she encountered challenges with breastfeeding. To overcome this, she used a breastfeeding cushion and a set of tourniquets, wrapping them around herself and her chair. This allowed her to breastfeed with increased stability as her baby was supported for latching onto the breast without requiring excessive upper body strength.
Dressing/Changing
With reduced motor function in her upper limbs, Anita found it easier to use sleepers with zippers that she would attach a key ring to for her newborn baby. As Olivia gained head control, Anita began using two-piece outfits without buttons and zippers. She also received a personalized crib customized by a group of engineer volunteers at Tetra Society. This crib was adapted to her needs, allowing her to wheel under it and open a sliding door to easily place her daughter Olivia from her lap into the crib.
Throughout the process of changing and dressing Olivia, Anita was amazed to see her daughter's collaboration in helping her accomplish these tasks. "…one of the things that was so amazing was that I recognized from very early on that even as a newborn baby, it's almost like they can sense your abilities. And they adapt to you, because she would be very different with me than she was with my husband."
Turns out, Olivia loved being her mom's little helper. From an early age, she would follow commands and remain patient as Anita worked hard to dress and change her. This was a different story with her dad, where she would be less cooperative and squirm all around.
Transportation
Taking Olivia out on trips outside the house was an immense challenge for Anita and her husband; they couldn’t access the same adapted resources they had at home. Because of this, Anita made sure to toilet train Olivia prior to making trips outside the house on her own. She also contacted Tetra Society again, this time to modify the difficult 5-point harness car seat that made it challenging for her to buckle and unbuckle her daughter. By placing a rubber ball on the buckle, the engineers made it easier for Anita to press on it and release the harness. This enabled Anita to travel on her own with her daughter and enjoy some quality girl time.
Playtime
Due to mobility challenges, Anita had to modify playtime activities to accommodate her disability while nurturing a strong bond with her daughter. As Olivia grew older, Anita shifted towards engaging in seated activities, including arts and crafts, puzzles, and board games. She also enjoyed playing catch with her daughter, exploring games that were inclusive and tailored to accommodate her mobility challenges.
As Anita mastered the above activities over time, she developed a stronger connection with Olivia and slowly became accustomed to her role as a mother. Having gone through multiple challenges in her parenting journey, she has a few recommendations to give disabled women who wish to embark on the journey of motherhood.
Recommendations from Anita for want-be-mothers who have a disability:
Get informed
Having completed her master's research on parenting with spinal cord injuries, Anita had more than sufficient information on assistive devices and resources available for parents with disabilities. She used this opportunity to learn more about the process of parenting with a similar disability as hers and to plan her future with her husband.
She was also able to develop a friend group with other females who had similar spinal cord injuries and had married before her. These connections not only provided a supportive community but also allowed her to witness and appreciate the efforts of these women, serving as a source of inspiration to pursue motherhood when she initially doubted the possibility.
From these experiences, Anita recommends doing well-informed research, communicating with your healthcare provider, and contacting companies/organizations that aim to aid people with disabilities. These resources can help individuals develop a well-rounded plan for their parenting goals.
Try not to be overwhelmed by the task ahead of you
Multiple times throughout her journey, Anita felt overwhelmed by the challenges that laid ahead of her. With the pressure to prove that she could perform her parenting role as well as any able-bodied parent, she felt anxious and scared of what was to come. However, Anita did not let these emotions interfere with her goals and simplified the tasks she set herself to accomplish into smaller activities she mastered with time. Because of this, Anita recommends taking the journey step by step and tackling childcare tasks one at a time until you feel confident in your abilities.
Don't worry about what other people think – just focus on yourself
Although she was mainly surrounded by supportive family and friends, Anita encountered some individuals who disregarded her capabilities as a mother with a spinal cord injury. She exerted much effort into raising her daughter and finding resources she could use at home to help. However, outside her house, the unavailability of her trusted resources required her to rely mostly on her husband. People would misinterpret this, as one guest at a family reunion suggested her husband was "both the mother and the father" of their relationship. This shattered Anita's feelings as she felt unrecognized for her efforts and judged as incompetent. However, with the help of her family and friends, she was able to overcome her worries about what other people thought or mentioned about her. She focused on her journey and knew that although outsiders could not see her work, she was giving her most outstanding efforts in raising her daughter.
Anita's journey through parenthood and disability is an incredible story of resilience, perseverance, and unwavering love and commitment to her child - it is hard to capture everything in a single blog. However, her experiences are meant to encourage women with disability to remain hopeful of one-day becoming mothers and having children of their own. Anita's story can serve as a reminder that, even through all the challenges of parenting and disability, there is always a possibility to partake in this role and raise exceptional children.
A very special thanks to Anita for taking the time to share her story, experiences, and invaluable advice!