Three Little Birds

About 15 years ago, one of my friends went to Jamaica. I don’t still have a lot of relics from that time in my life, but I do have the Bob Marley coffee mug he brought back to me as a souvenir. One side of it has a gold-plated lion, and the other side is…

Matters of the Heart

February is celebrated as American Heart Month in an effort to raise awareness about heart health and the prevention of heart disease. Kids with special needs are often at an increased risk of heart conditions. Down (Trisomy 21), DiGeorge (22q11.2 deletion), Turner (Monosomy X), Patau (Trisomy 13), Edwards (Trisomy 18), Alagille and other syndromes carry…

The Beat Goes On: An Update

This morning I sat in my daughter’s cardiologist’s office while he talked to me about what was wrong with her heart. My husband Ben joined us via Facetime and I held Ellie, who just wanted to hug. We were chest to chest, and I could feel her heart beating while the doctor pointed to the…

Proving me wrong every time

Ellie was kicked out of the G-tube Club this week. She had been a faithful member for over two years, but as she grew older, she found herself unable to continue to abide by the rules and standards. I guess chewing and swallowing her food was just too much of a temptation. I am glad…