For a parent, the worst thought in the world is losing a child. The love a parent has for his or her child is unceasing. Bringing a human being into the world, then raising and loving them only to lose them is unfathomable. Yet, parents of children with terminal illnesses like Sanfilippo syndrome are faced with this reality.
My daughter Abby has Sanfilippo syndrome, so I know her death will precede mine. I have to decide to focus on the present instead of the future to avoid full-blown depression. Enjoying her while she is here and relishing the small, sweet moments with her is how I choose to spend the time she has left here on earth.
However, I realize that those around me who hear about Abby are left feeling hopeless. I understand this because it is exactly how I feel whenever I hear of a Sanfilippo child passing. There are never adequate words to convey to those parents. But ignoring their grief is not an option, either. Those of us who witness these sad events are left feeling useless. At the same time, we’re desperately searching for something to do to either help the parents or honor the child who has passed.
I have heard a common sentiment from parents who have lost children, which is not to forget their children. This makes sense. A child’s passing does not negate the impact they had on others’ lives when they were here. It is important to honor those who left this earth too soon.
So, I decided to start painting these children. I gathered all the names of children who have passed from Sanfilippo syndrome, found pictures from their parents’ Facebook pages, and painted them. So far, I have painted 35 children for 31 families. Think of all the people impacted when you imagine 35 children — their parents, siblings, friends, caregivers, teachers, therapists, and others. So many people who cared for these angels while they were on earth. Here are some of those paintings:
Painting these children is a therapeutic and prayerful process for me, as I gaze carefully at all of their faces: each eye, nose, mouth, and unique quality that makes them special. It was a gift for me to capture these kids’ likenesses in paintings. I tried imagining what they sounded like, their quirky personalities, and how they impacted those around them. Envisioning them in heaven with hordes of angels around them, playing, walking, running, and doing all the things they were unable to do on earth is magnificent.
This process has also allowed me to connect more closely with some of these families. It has allowed me to gently enter their lives while discussing the delicate issue of their child passing away. I have learned more about these kids and the things that their parents miss about them. They are conversations I will always cherish.
I will continue to paint these angels as long as it comforts their loved ones left behind. I want parents to know that their children will never be forgotten. Anything I can do to reassure them of this is worthy of my time.
Note: Sanfilippo News is strictly a news and information website about the syndrome. 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 Sanfilippo News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.
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