Please Ask Me About My Child

People often don’t like talking about sad topics. They probably feel they lack adequate words. Most want to offer advice, or say something to make another person’s life better.

But if you have experienced a sad event, you can’t avoid it. You wake up thinking about it, and it is the last thing you think about before going to sleep. When something consumes your daily life, it is hard not to talk about it. This is a brief insight into the lives of families who have terminally ill children.

When I learned that my daughter Abby had Sanfilippo syndrome, my world turned upside down. A whirlwind of emotions emerged: shock, anger, sadness, and disbelief. I thought it was the worst news I could have received. It left me feeling broken.

Life had to go on, but how?

The news affects your work, social events, and family gatherings. It becomes an integral part of your life, yet others don’t feel comfortable talking about it.

I remember feeling awkward at family gatherings shortly after Abby’s diagnosis. My daughter Emily, my husband, Jeff, and I were engulfed in grief. We were still in shock, and it was almost all we talked about among ourselves. We did not anticipate family avoiding the subject.

Conversation with others covered jobs, weather, and various family matters. I know the diagnosis had less of an impact on them, but we still needed to talk about it. Don’t misunderstand. We have an incredibly supportive extended family. But even the people closest to you avoid talking about sad events.

We also have experienced this elsewhere. My family has attended the same church for more than 20 years. Abby no longer attends because of the progression of her disease. Yet hardly anyone asks us about her.

When I was diagnosed with cancer, people were empathetic. They are less prone to express concern about Abby. I don’t think it is because they don’t care. I think they are worried about upsetting me. They don’t have the words to make it better, so they avoid it.

I am here to say: Please don’t avoid asking about Abby! She is still here, so let’s not act like she is gone already. If it’s too upsetting, I will let you know. It hurts more not to be asked about her. Your acknowledgement of Abby is comforting and meaningful. I have talked with other moms of terminally ill children who agree.

Let this be a teaching moment.

If you are not sure what to say to parents, just ask how their child is doing. The answer may be lengthy or short, and it could trigger an emotional reaction. But we need to talk about it. We need to vent. Lend us your ear. You never know how much it might help someone to be heard.

There is a beautiful song from the Broadway musical “Waitress” called “You Matter to Me.” Listen to the words. And make someone know that they matter to you.

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Note: Sanfilippo 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 Sanfilippo News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.