When my daughter, Willow, was born we heard over and over again how weak she was because of her Down syndrome. Doctors and nurses used words like “fragile” and “frail.” Willow’s medical file was filled with even uglier words. “Failure to thrive” topped the list. Hypotonia, or low tone, quickly followed. Every word wreaked of weakness. … More What Doctors Didn’t Tell Me About My Daughter’s Down syndrome
3 years ago in October, I put Willow’s life in the hands of a heart surgeon. 2 years ago in October, Willow was diagnosed with a rare blood disorder after a leukemia scare. 1 year ago in October, a nasty bacterial infection caused Willow to miss Halloween and spend a few nights in the hospital. … More Pass The Spaghetti
Warning: If you’re looking for a cheery, inspirational post, come back some other time. This one promises to be dark, ugly and depressing. Still reading? Don’t say I didn’t warn you. I’m angry. I’m angry that life is so bleeping hard sometimes. I’m angry that swearing is naughty, because it feels really good to say … More The Ugly Truth
I spend so much of my time being angry. Not at a person, but neutropenia. Chronic benign neutropenia, to be exact. Doctors define it so simply. Neutropenia is when your body doesn’t produce enough neutrophils. Neutrophils are a type of white blood cell needed to fight infection. For my 19 month old daughter, Willow, neutropenia … More Forgiving My Daughter’s Attacker
Be joyful always; pray continually; give thanks in all circumstances, for this is God’s will for you in Christ Jesus. 1 Thessalonians 5:16-18 This quote from the bible looks all cute scribbled on a chalkboard in my dining room, but lately, it’s been annoying me. Be joyful… always?? Is that a joke, God? I know … More Being Joyful Always
Hehehehehehe…. I did something naughty…. hehehehehehe… and I feel a little guilty…. hehehehehe… and a little silly…. hehehehehe…. and a little regretful… but only a little…. hehehhehee. It all started yesterday when I got the mail. Willow’s 18 month check up is next week… so we received a developmental questionnaire to fill out ahead of … More Do I Dare?
I’m not usually one to write back-to-back blog posts… but something has been weighing heavy on my heart these past few hours. It all started after searching wordpress for blogs featuring the term “Down syndrome.” I do this frequently… as I find it fun to read about the lives of other families like mine. I … More Dear You….
Willow never ceases to amaze us. She makes a hobby out of smashing stereotypes… conquering obstacles… and defying expectations. I guess you could say she likes to keep the world guessing. Just ask her doctor. Two weeks ago… I blogged about Willow’s blood count. Her neutrophil level was low and her doctor was fairly certain … More Huh?
The minute we met Willow’s oncologist we knew he was the best. He reeked of confidence and every nurse we met sang his praises. While his initial diagnosis was leukemia… a discussion about Willow’s health struggles and a few hours of contemplation led him to change his opinion. And he was right! A bone marrow … More Cyclical Neutropenia-shmenia
You think your Monday was bad? Talk to Willow. Well… maybe you should talk to me instead… because as I’ve mentioned before… Willow doesn’t talk much. Anyhow… Willow’s Monday started with a camera stuck up her nose and down her throat. Yup. As I’ve mentioned before… Willow’s nose is constantly stuffy… so today we met … More Nosebody Nose The Troubles I’ve Seen