Parental Partnership: Supporting Families With a Child Affected by a Rare Disease

When I became a mother at 26 years old and my husband a father at 27 years old, we learned that the future ahead of us would be characterized by raising a child with a rare disease.

At first, we were extremely concerned about the journey ahead of us. Of course, we knew it would be filled with unique challenges, but we also wanted it to be filled with many joys as we welcomed our parenting role.

Navigating the journey ahead of us

Amidst the complexities, the parental partnership we had to form helped us navigate our journey without burning out. The biggest lesson before us during this uncharted experience was learning how to be open and honest, provide unwavering support, and give the other person a break when necessary.

In this post, I will share how we learned to make it work and how parents can join forces to create a nurturing environment for their child and family.

Open and transparent communication

Communication forms the cornerstone of a strong parental partnership. In the beginning, we had to lean into our friendship and learn how to communicate with each other without judgment. I would whisper to myself during hard times that we were friends first.

Being open and transparent about our feelings, fears, and aspirations regarding our child's condition fosters understanding and solidarity. Encouraging regular discussions ensures that both parents are on the same page regarding medical decisions, caregiving responsibilities, and emotional support.

Sharing responsibilities

Sharing the responsibilities of caregiving alleviates the burden on just one parent and promotes a sense of unity. For a time, I would attend the vast majority of our daughter's doctor appointments alone, which became overwhelming, so I spoke up and learned to make future appointments when my husband could also attend so he could be just as informed about the status of her health as I was. It gave my husband a safe place to ask questions about our daughter's rare disease diagnosis.

Also, I quickly learned that dividing tasks such as medical appointments, therapies, and daily care creates a more manageable routine. This shared responsibility helped us feel like we were emotionally supporting each other. Thus, during difficult moments, we felt like we were both just as invested, which strengthened our parental bond and showed our daughter that we both cared equally.

Respecting each other's coping mechanisms

Each parent may cope with challenges differently. Understanding and respecting these differences is crucial. While one parent might seek solace in researching treatments and connecting with support groups, the other might prefer a more emotionally supportive role. Embracing these variations and supporting each other's coping mechanisms is essential for mutual understanding and support.

I am definitely the parent who finds fulfillment while advocating, while my husband does not. He copes with the challenges he faces as a caregiver while working hard to provide for our needs.

Decision-making as a team

Regarding decision-making, collaborative discussions about treatment options, educational choices, and long-term plans empower us to contribute our perspectives and insights. This approach ensures that both our voices are heard and considered, fostering a sense of ownership in the decisions made for our child's well-being.

For example, when new treatment options emerge, I actively share these advancements with my husband, allowing us to research and make decisions together.

Prioritizing self-care

Both parents must prioritize self-care to remain emotionally and physically healthy. For self-care, I read books, watch entertaining movies, and write.

On the other hand, my husband practices self-care by biking, working on his car, and exercising at the gym. Together, we've learned to encourage each other to take breaks, seek support from friends, family, or support groups, and maintain hobbies or activities that bring joy and relaxation, which is essential to prevent exhaustion.

Becoming more resilient through our unity

Facing the challenges of raising a child with a rare disease requires resilience. Together, parents can be pillars of strength for each other, providing unwavering support and encouragement during difficult times. Celebrating milestones, no matter how small, as a team reinforces the unity and resilience needed to navigate this journey.

I'm grateful that the support we provide each other allows us to work, fulfill some of our dreams, and still do some of our hobbies. I'd like us to get to the place where we can go on a date night at least once every 2 weeks because I think parental connection is important.

Seeking professional help together

Seeking guidance from healthcare professionals, therapists, or counselors as a united front can be immensely beneficial. It offers an opportunity to gain insights, learn coping strategies, and strengthen the partnership in supporting the child and each other.

In 2020, I started attending therapy once a week. I knew that it was necessary for me to be able to advocate, work, and encourage my children to reach their potential without my fears getting in the way. Therapy has been a motivating force for me to make time for my children and my marriage simultaneously.

Strength and solace for the entire family

The partnership between parents stands as the bedrock of creating a stable and nurturing environment for a child battling a rare disease.

Through open communication, shared responsibilities, mutual support, resilience, and seeking professional guidance, parents form a formidable alliance — a source of unwavering strength and solace for the entire family.