“Angela was full of drive, full of hugs and laughter, and made her way through each day as it came.”
Angela Frances Ricker, Trisomy 13, 10/08/2004 to 12/05/2015, Orford, New Hampshire
Angela was born at home on a warm October afternoon. The midwife knew to pay extra close attention when she saw a large encephalocele on the top of Angela’s head, and soon we noticed some other signs (clenched hands, feet whose toes touched her shin bones). We took her down to the hospital and they did a bunch of tests. After 5 days we had her diagnosis and based on the lack of hope for a long life that was described to us we decided to take her home and enjoy her for as long as she was here. She spent her first 6 weeks healing up that encephalocele (leaving a butterfly-shaped scar on her head) and then put her energy toward growing and learning, slowly but surely, how to eat, grab, smile, crawl, laugh, pull up to stand, feed herself with her bottle, walk with a walker, walk holding hands, enjoy the world around her, knock things off of any available surface, bang on the piano, ask for and give big hugs, soak up the sunshine or the flickering light of the fire, eat wood chips and sand, manipulate various toys at any angle, crawl off any bed, lick windows and mirrors, and so many other things. She never did breastfeed (unfortunately!) but I pumped milk for her for 22 months, and she fed herself from her bottle for 8 years or so. We fixed her VSD when she was 3 and showed no signs of planning to leave us, and that gave her the energy available to learn so many other things. She was seizure free for 4 years but began to have trouble with seizures at age 8, also hitting puberty at about that time. She slowed down a bit and became more withdrawn and eventually at age 9 1/2 lost her suck and swallow coordination and we started to feed her via a g-tube. She also had chronic diarrhea for her last 4 years of life due to a fairly rare form of colitis (lymphocytic colitis). Yes, we were champion diaper-changers, thank you very much!
Angela was full of drive, full of hugs and laughter, and made her way through each day as it came. From the age of 3 she attended our local community school and was in Kindergarten with 5 different classes that came through, so that by 2015 she had been classmates with every kid in the school except the current preschoolers. They all knew her and interacted with her. She loved music and light and being held. Our arms feel empty without her.