Minimizing Risk

This week, the cardiologist recommended that we all hunker in again, including keeping the kids home from school. With our daughter Ellie’s track record – three hospitalizations for pneumonia this summer alone – he thinks that the odds are not in her favor if she catches any respiratory virus and that she would likely need…

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…

Healthier Tomorrows

I started running nearly ten years ago. It has never been anything that I really enjoy and the habit comes and goes. I’ve sworn it off plenty of times in the past and mostly just walk now because of injuries, but if I get overwhelmed, stressed out or excited, I find myself out there running…

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…

Grace is power, not just pardon.

Ellie’s birthday is next week. She will be two years old. I feel like she has been here for a million years. I think it is because of the amount of attention she requires. I keep hearing that she will grow out of this or that medicine or physical restriction, and I find myself wishing…

Donate Life

Before our daughter was born, my husband and I met with Arkansas Regional Organ Recovery Agency (ARORA) about organ donation. In utero, she was diagnosed with two critical heart defects and Down syndrome. We were told to expect the worst and hope for the best when she was born and to also understand the risks…

Heart-Swelling Pride

Ellie was standing on the curb when I got to her school to pick her up yesterday afternoon. I had to stop the car in the middle of the drive when I saw her. She was standing with the help of her little red walker, her hands gripping the handles. She was wearing her leg…