How to have a strong marriage in a rare disease family
Prioritizing our marriage, seeking support, and supporting each other are key
In today’s fast-paced world, maintaining a strong and healthy marriage can be challenging. It’s even more difficult when the complexities of raising children with medical conditions are added to the mix.
Our daughter, Serenity, battles a heart defect known as pulmonary atresia, and our son, Juju, has late infantile Batten disease, also known as CLN2 disease. This makes it even more crucial to prioritize the well-being of our relationships and our family.
I’d like to share with other families some valuable insight about things my amazing husband, Jonathan, and I try our best to practice daily. In reality, we are all human and imperfectly perfect in our own way. It’s important to keep our marriage fresh, particularly because we’re raising children with rare conditions. The following are things that work best for Jonathan and me.
Communication is key. We always establish open and honest lines of communication to navigate the emotional roller coaster that comes with parenting children with medical conditions. We regularly check in with each other, share our feelings, and actively listen to each other. This helps to strengthen our emotional connection and develop a deeper understanding of each other’s needs and concerns.
Another crucial aspect of maintaining a strong marriage is prioritizing quality time together. In the hustle and bustle of daily life, it can be easy to let our relationship take a back seat.
We try our best to set aside dedicated time for each other. We plan regular date nights, even if they are simple and low-key, to reconnect and nurture our bond. What works best for my husband and me is participating in activities that we both enjoy, such as going for walks, cooking together, or watching our favorite movies. These moments of shared joy help to rejuvenate our relationship and remind us of the love that brought us together.
Finding our tribe
When raising children with medical conditions, it’s important to seek support from others who are going through similar experiences. We always connect with support groups or online communities, where we find understanding and empathy from people who can relate to our journey. We enjoy sharing our challenges and triumphs with others who truly understand and can provide much-needed emotional support and guidance.
We always try to remember that we’re not alone on this journey, and that seeking support is a sign of strength, not weakness. In addition to seeking support outside of our marriage, it is crucial that we support each other as a couple. We try to be each other’s pillar of strength, offering encouragement and understanding during difficult times.
We celebrate the small victories together and remind each other of the progress we’re making as a family. Actively supporting each other creates a foundation of love and resilience that will carry us through the toughest of times.
It’s easy to become consumed by the needs of our children, but it’s essential that we prioritize self-care by making time for activities that bring us joy and help us recharge. Whether it’s exercising, reading, or pursuing a hobby, carving out moments for self-care not only benefits both of us in our marriage, but it also allows my husband and me to show up as the best version of ourselves — for each other and for our children.
By prioritizing our marriage, seeking support, and supporting each other, we have created a resilient bond that will withstand any challenges that come our way. One important thing to remember is that the journey may not always be easy, but with love, understanding, and a shared sense of purpose, we’re able to keep our family bond strong and create a nurturing environment for our children to thrive.
Note: Batten Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Batten Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Batten disease.
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