The day Clare was born was the day we learned she would soon die. She was our second child and arrived 18 months after our healthy daughter, Molly. The doctors gave Clare three months to live, which meant she would be gone by Christmas. 

Our baby was diagnosed with something called Rhizomelic Chondrodysplasia Punctata Type 1 or RCDP. It’s quite rare and always lethal. As it turned out, my husband and I each carried a scarce recessive gene, and as fate would have it, those matching genes decided to meet.

The disease basically impairs the normal development of many parts of the body and its characteristics include short arms, small stature, bone and cartilage abnormalities, seizures, abnormal facial appearance, severe mental retardation, profound psychomotor delays, breathing difficulties, and cataracts. In fact, the only body parts Clare could move on her own were her feet, which she used to feel our faces, and her mouth to drink formula and give kisses. 

After her diagnosis, the head geneticist at the hospital explained how Clare would die. He used a word that I’ve never associated with a human being before—implosion. He said it so matter-of-factly, like he was talking about expecting rain later in the day. He told us how her organs would outgrow her skeletal structure within three months, and how she would simply collapse within herself. Then they sent us home with hospice care and we waited for her to die. 

Clare, however, had other plans. Three months passed and right before her first birthday, our family went to the upper peninsula of Michigan for the weekend. Since Clare couldn’t move most of her body, she had to lie flat in the back of a double stroller she shared with her big sister. Clare had recently had surgery on her eyes because of cataracts, and sometimes the sun would bother her. I always put a light blanket over the hood of the stroller to protect her. It left about an inch of room on each side.

Clare really liked the air up North. It was easier for her to breathe and we playfully nicknamed her “Hemingway,” after the famous author who grew up not far from where we were in northern Michigan. On this particular day, Clare was asleep in her stroller while my girlfriends and their kids enjoyed the afternoon. I continued checking on her while she slept. She looked so peaceful and I was so thankful that she was here with us. After about an hour or so, she awakened and as I lifted the blanket from the stroller, I noticed a tiny hummingbird had inexplicably flown in and was resting comfortably on Clare’s heart. I immediately knew I was witnessing something divine. 

I called my friends, Kellie and Phyllis, to come and see the beautiful bird lying on Clare. At first, they thought it might be wounded. I lifted Clare out of the stroller and the little bird stayed put. Kellie gently picked it up and placed it in the palm of her hand. The bird rested there for a moment and then flew away. 

When we came home a few days later, I scoured the internet for any information about hummingbirds landing on babies. Not surprisingly, nothing came up but I did find a hummingbird “expert” and told him what now sounded like our own personal fairy tale. He had never heard of hummingbirds landing on people, but he did say something that has stayed with me ever since: “Some things are meant to be experienced and not explained.”

Fast forward a few months: I was out shopping at an artsy-crafty store and bought a book called Animal Energies by Gary Buffalo Horn Man and Sherry Firedancer. It’s filled with little-known facts about all kinds of animals, insects, and birds, and interprets our physical and spiritual encounters with them. This is what it said about hummingbirds:

“Hummingbirds bring us the gift of beauty. All of the Creator’s children are beautiful in their own way, but the hummingbird, in particular, reminds us of the beauty and wonder in the world. They pull us out of the mundane so we may acknowledge the beauty of creation… If a hummingbird comes to you, it may be saying you cannot keep a gift from the Creator to yourself; it needs to be shared.”

Since that extraordinary day in the woods, I’ve often wondered why this beautiful, tiny creature decided to rest for a spell on our little girl. The bird had no idea that Clare couldn’t move, but maybe it knew something else. Maybe it recognized a kindred spirit.

From that day on, our family lived each day to its fullest because we didn’t know when our sweet girl would leave us. On January 19, 2005, Clare took her last breath. She was five-and-a-half-years-old.

We could not keep a gift from the Creator to ourselves.

Clare’s story needed to be shared. 

Our beautiful, little bird had flown away.