Why It’s Important to Be Honest About Daily Struggles
I’m a glass-half-full kind of girl. It’s usually not difficult for me to look on the bright side of life. Recently, I had one of those days where everything felt right. We are on…
Bloom — Prudence Jones
Prudence is a caregiver and loving mother to her two-year-old son, Alfie, who is affected with LAMA2-related muscular dystrophy. Prudence is married to Alfie’s dad, Rylan, and they all live together in Tamworth, NSW, Australia. Before Prudence became a mum she was a primary school teacher, but since Alfie’s diagnosis she has been immersing herself in trying to learn as much as she possibly can about LAMA2, raising awareness and educating others on what parenting a child with muscular dystrophy entails.
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Baby Emelia Brings a ‘New Normal’ to Our Family
In August, my 2-year-old son, Alfie, became a big brother. While bringing a new baby into the world is an important life event for any family, when you are already raising a child…
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The People We’ve Met Due to My Son’s Disability Are a Blessing
My 2-year-old son, Alfie, lives with LAMA2-related muscular dystrophy. Obviously, it is hard, stressful, and heartbreaking to raise a child with a disability. I wouldn’t wish this condition upon anyone. From his premature…
The Excitement and Fear That Come With Giving Your Child a Sibling
Most weeks, I toss around column ideas with my friends and family, asking them for advice on what they think could be important or interesting for me to write about. Last week,…
Caring for My Son Helps Me Continue Being a Lifelong Learner
Before my 2-year-old son, Alfie, was born, I was a primary school teacher. While I still work occasionally on a casual basis, it’s a much smaller part of my life than it once…
Despite My Initial Fears, I Now Praise the Feeding Tube
Last June, my 2-year-old son, Alfie, had his first surgery to place a feeding tube. It has now been a year since the percutaneous endoscopic gastrostomy (PEG) tube replaced the nasogastric (NG)…
Grieving the Challenges That Lie Ahead for My Son
Last week, I took my 2-year-old son, Alfie, for a walk-through at a local preschool. We are checking out all of the preschools in our area so we can find the best…
Helping My Son Conserve Energy Is a Constant Juggling Act
Growing up, I was never good at performing tricks. I couldn’t whistle, I’ve never been able to cartwheel, and I’ve always been terrible at juggling. Now, every day is the…
Why It’s So Important to Find Your People
When Alfie was first diagnosed, I went searching. I needed answers. I needed to know that my little boy would be OK. I searched every website and every social media…
What a ‘Typical’ Day Is Like for My Son, Alfie, and Me
BEEP BEEP BEEP BEEP. My eyes spring open. It’s still dark. It’s not my alarm that I hear. “Wake up!” I say as I roll over and poke…
What I’ve Learned Since My Son’s LAMA2 MD Diagnosis
On Oct. 21, 2019, I sat in a doctor’s office with my 11-month-old son, Alfie, and was handed a piece of paper. Nothing was said, nothing was explained — I was just given the…
