Seeing death and suffering makes me fear for my child’s future
I know Sanfilippo syndrome is terminal, but sometimes it's hard to handle
My daughter Abby has Sanfilippo syndrome, which is rare, genetic, and terminal. We’ve lived with the condition for eight years now, since her diagnosis in 2017, at age 22.
In some ways, strangely, I feel less capable of handling this awful disease now than I was eight years ago.
Living with grief
Over the past few months, I’ve felt engulfed in grief. My husband and I know of multiple children with Sanfilippo who’ve been very sick or have died. We’re in touch with these and other Sanfilippo families through social media; in fact, when a child passes away, we’re usually notified on Facebook. It never gets easier, especially since we know that we’ll be posting about Abby’s passing one day.
Normally, I see these posts about deaths, share them, pray for the family, and move on. But I’ve had trouble doing that lately.
Parents of Sanfilippo children will also share on social media when their children are in the hospital or otherwise having medical issues. Again, I usually see these posts, comment or share if appropriate, and pray for the family. For some reason, though, I cannot even read posts or watch videos of this nature right now.
I realize I might sound selfish, and I apologize to those families who are right now in the thick of being caregivers to sick or dying children. However, I’ve been imagining being in those parents’ positions, helplessly watching Abby suffer, incapable of doing anything about it. It’s been too much.
Hoping my daughter is spared too much suffering
Abby’s health remains fairly stable. Even though she continues to decline, mostly physically, she still exhibits signs that she’s happy at times. I guess I’ve been triggered by seeing those posts about all the other Sanfilippo children who are suffering, thinking that Abby will be like them one day.
While I desperately want Abby to remain with us, I more desperately want her not to suffer. I cannot imagine standing by her bedside in a hospital and watching her in pain. But we may end up doing just that one day.
It’s such a strange space to live in — knowing your child will die and not wanting it to happen, yet yearning for it to happen mercifully.
That was the case for me, my husband, and his family last month, as his father ended up in hospice and eventually passed away. This man, my father-in-law of 31 years, died from Alzheimer’s disease on June 2. He’d been declining rapidly over the past six months. Family surrounded him as he entered hospice, and we watched as he deteriorated. It was difficult for everyone since he was so loved.
But it was another reminder of Abby’s ultimate fate.
Moving forward with support
I realize that I’m not in a healthy mindset right now. I have support around me to help me shake this state and move forward, but it’ll likely creep back into my life.
I make this point in almost every column I write: Abby is so loved by so many people. One of her caregivers recently moved away, and we hired a replacement who instantly fell in love with her. And Abby is mostly content for now. I must appreciate that and be thankful. One day at a 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.
About the Author
Leave a comment
Fill in the required fields to post. Your email address will not be published.