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My daughter Abby has a terminal illness called Sanfilippo syndrome. This condition has stolen so much of Abby from our family. Witnessing her decline is extremely hard. It is difficult now to remember what Abby was like before her disease progression. She used to talk in complete sentences. She…
I am raising a terminally ill child, my daughter, Abby. This has caused many to call me a hero, warrior, or fighter, among other things. While these are flattering terms and to be taken as compliments, I do not necessarily feel like they describe me. One reason people have used…
My daughter, Abby, is 24 and has Sanfilippo syndrome, which will one day claim her life. I already feel like she’s gone, though. I had never even thought of the idea of grieving the loss of someone who is still living until now. It is a sad reality, but I…
Parenting a terminally ill child carries emotional baggage. It can be subtle or sudden and feel like an extra weight to carry around every day. The feeling of bitterness particularly resonates with me and has developed over time. I am normally an upbeat, positive person. I am generally happy…
Parents of terminally ill and special-needs children experience a multitude of emotions. Our feelings lie across a wide spectrum, and sometimes we feel many emotions at once. Each person’s reaction is different, too — no two parents are exactly alike. However, I think that we all experience similar feelings at…
This time of year is a good opportunity to take stock of the wonderful people in our lives. Here is my inventory of those to whom I am sincerely grateful. My husband, Jeff, is my constant. He is always there for me with unfailing love. He loves me through the…
Do you ever feel like your faith is being tested? Like God is trying to see how much you can take? I don’t think God is malicious and means to push us to our breaking point, but it feels that way sometimes. Getting diagnosed with cancer and having your child…
Raising a special-needs child can be isolating. You think no other child is like yours, and other parents won’t understand the daily challenges you face. When I thought my daughter Abby had autism, I didn’t join a support group or seek out other moms of children with autism. I felt…
Children with Sanfilippo syndrome often have neurotypical siblings. These are rough waters for parents to navigate. You love them equally, but how do you adequately care for their differing needs? My oldest daughter, Abby, has Sanfilippo syndrome. Her sister, Emily, is unaffected. Emily is incredibly smart, beautiful, kind, and…
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…
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