Hearing this was like a light bulb moment for Carl as I am not practically minded at all. I become easily overwhelmed when completing simple tasks like taking care of the house and getting myself and the family organised, which means I take longer to get things done than most. He once found this extremely frustrating and still does to a degree but appreciates the effort I make to manage it and improve and better myself. Knowing I have a KdVS diagnosis, combined with my upbringing, has helped provide him with a good understanding of me and how I operate that he never had before. This helps him have more grace and acceptance, both for me and the daily frustrations I create. Not only that, but it also helps him to understand our children better, and the kind of challenges they will encounter as they grow.
He has a very deep love and affection for all four of us as his family and loves and values us all as we are. I truly believe that with understanding comes acceptance, and in our own personal ways, we have both come to terms with being a rare disorder family. Having lived with KdVS my whole life and being in a relationship for so many years together (married since 2009), we have felt less in the dark as a result about what KdVS looks like. It has manifested itself uniquely in both myself and our two youngest children. Knowing, however, I was first to have it has given me a lot of purpose and passion to be a role model to my children of what great things are possible when living with a rare disease diagnosis. My husband is supportive of the approach I have taken and how I use it to advocate through sharing our journey with the world as a source of hope and encouragement to many other rare families. He has also responded with acceptance and love and doesn’t see Josh and Avary through the lens of KdVS. He understands it is a part of them, but first and foremost he sees, knows and loves them just as his kids without defining them by their disorder in any way. What he focuses on is being the best dad he can be to all three of his wonderful children.
We share the same view in that as I also choose to look beyond our children’s diagnosis: to love and celebrate them as the uniquely wonderful, playful, affectionate and joyful children they are. I also make sure that I acknowledge KdVS as being a part of them which requires some extra time, patience, care, support and understanding, which I give gladly. It is important to us both that our children receive all they need both from us, and the relevant therapists and other professionals required along their journey who can help assist them in reaching their own fullest potential. We don’t see KdVS as something that takes away from who they are, but instead, what adds a special something to show the world the beauty of being different. Nobody knows exactly what the future holds, so what we rely on is love for ourselves, one another, and our children to be our courage and strength to face whatever challenges lay ahead.
