Keeping Your Family Connected When Raising a Child With a Rare Disease

Editor's Note: This article was written by Elle Cole and originally appeared on our partner site RareDisease.net.

Raising a child with a rare disease extends beyond medical hurdles – it encompasses emotional and familial challenges.

The impact ripples through our entire family, influencing relationships and our day-to-day lives. Balancing the needs of our affected child while fostering a healthy family dynamic requires a multifaceted approach. This involves nurturing understanding, fostering effective communication, building robust support networks, sharing responsibilities, prioritizing self-care, practicing gratitude, empathizing with each other, and upholding steadfast resilience.

Embracing this comprehensive approach nurtures our child's well-being and keeps our family connected. It establishes a nurturing space where love, empathy, and inner strength prevail, guiding us through every challenge we encounter.

Understanding how to keep your family connected

The diagnosis of a rare disease in a child can significantly alter the family's dynamics. Parents become caregivers who often find themselves juggling multiple roles, from being caregivers and advocates to managing the emotional well-being of everyone in the household. Siblings may also experience feelings of neglect or have unique needs that require attention.

I have twin daughters, and I want to make sure that I give them both ample time and attention by listening and making myself available for them and their needs. To provide the understanding they need, I must find time to spend alone with each of my children, whether it's playing board games, cooking together, or finding time just to talk.

Communication and support

Open, honest, and regular communication forms the bedrock of a supportive family environment. Encouraging family members to express their emotions, fears, and concerns builds understanding and helps address individual needs. Providing emotional support to siblings and reassuring them that their feelings are valid can alleviate some of the stress they might be experiencing.

Anxieties can run high at times, so we are working on attending family therapy. However, currently, we talk it out, sharing our biggest fears and goals. Furthermore, as we embark on this journey of open communication and emotional support, we strive to create a nurturing space where every family member feels heard, understood, and empowered, fostering a resilient bond that weathers the challenges together.

Shared responsibilities and inclusivity

Incorporating the affected child into everyday family activities as much as possible promotes a sense of belonging and inclusion. Assigning age-appropriate chores and involving them in decision-making processes can bolster their self-esteem and confidence.

Personally, I try my hardest not to treat my children differently. They both receive the same number of chores, and I also maintain similar expectations for their schoolwork.

Flexibility and adaptability

Flexibility is a cornerstone of family life. Schedules have to adjust to accommodate medical appointments, therapies, and unexpected situations. My children enjoy structure, so I discuss changes with them beforehand and add appointments to our family calendar so everyone is aware.

Seeking external support

Seeking support beyond the immediate family circle can be immensely beneficial. Connecting with support groups, therapy, or counseling tailored for families dealing with rare diseases can provide invaluable guidance, advice, and emotional solace.

I don't like asking for help, but I have one close friend and one family member who always try to help me when I need them the most.

Respecting individual needs

Understanding that each family member copes and communicates uniquely is paramount. Some require space to process emotions, while others engage more actively in caregiving roles. Acknowledging and respecting these differences fosters a supportive environment.

In my family, personal time is highly valued; thus, ensuring our home is a sanctuary where one can find solitude has proven immensely beneficial.

Taking care of yourself

Caring for a child with a rare disease can be all-consuming, but self-care for parents is non-negotiable. Ensuring adequate rest, exercise, seeking emotional support, and taking breaks to recharge are essential in preventing burnout and maintaining a healthy lifestyle.

I have learned how to put myself on my to-do list so I don't risk feeling too overwhelmed. As a parent, if you do not take care of yourself it will become more and more difficult for you to care for others properly.

Embracing moments of joy

Amidst the challenges, finding and celebrating moments of joy, laughter, and togetherness is vital. These moments serve as anchors that strengthen familial bonds. Whenever the opportunity arises, I try to create lasting memories and capture the images as much as possible.

Raising a child with a rare disease reshapes a family's dynamics in profound ways. It's a journey that demands unwavering support, understanding, and adaptability from all members involved. Families can navigate these challenges with love and strength by fostering an environment of open communication, mutual support, and inclusivity.

Remember, every step forward, no matter how small, is a testament to the unwavering strength and love that binds a family together.