“Nobody has ever measured, not even poets, how much the heart can hold” – Zelda Fitzgerald GM-1 is much like the enemy – it comes to kill, steal and destroy. We’ve seen it take so much from our son in such a … More “But the greatest of these is love”
Ever since Joey’s diagnosis last year birthdays, holidays and anniversaries have brought with them a mixed bag of emotions. When we celebrated David’s 4th birthday last November I wanted nothing but a joyous occasion surrounded by friends and family – it was an extraordinary day filled with so much joy and happiness. Christmas was precious … More …”For better or for worse, in sickness and in health…”
Sam and I waited three days after Joey was born before we agreed on his name – Josiah Michael Scaparotti (I remember the nurse telling us we couldn’t leave the hospital before we had named our baby and filled out all the paperwork). We chose Josiah partly because we love the story of king … More Life in the Valley
After two months of fighting one respiratory virus after another Joey is finally doing better. Every time he gets sick we buckle up for another roller coaster ride of uncertainty and sleepless nights. Degenerative neurological disorders bring so much uncertainty. They are the perfect nightmarish combination of definitive and unpredictable. At least that’s our experience. … More Strength Made Perfect In Weakness
It feels like we are in a new season within our current season. This journey has never been easy yet lately it’s been exceptionally hard. Joey has been healthy as far as viral and respiratory infections go but it seems GM-1 has been getting the best of him and we’ve witnessed more of a rapid … More Seasons Within Seasons
Saying goodbye is a natural part of life often marking the end of one season and the beginning of another. We transition out of the old and into the new, many times bidding adieu to the familiar and reluctantly accepting the unknown. Sometimes joyfully leaving the past behind and expectantly entering a promising future. Goodbyes … More Goodbyes Along the Way
My hope and prayer was to write and journal here more often. Yes, life has been busy, we’ve had a lot going on, but in all honesty the thought of writing scares me a little bit these days. Hard to believe since I’m very much a processor. I don’t do well with thoughts and feelings … More Raw isn’t pretty, but it’s real.
It’s been three months since we found out Joey has a lysosomal storage disorder, two since the official diagnosis. My concept of time has changed completely. In some ways it’s been three very long months – many, many sleepless nights, a gazillion doctor appointments, meetings upon meetings with various agencies including two with Hospice of … More Three Months Later
This is a blog about Josiah, our youngest son, and his journey as he battles GM1 (infantile gangliosidosis). A baby with Infantile GM1 gangliosidosis usually appears normal until onset (usually by 6 months of age), but developmental regression eventually occurs. Signs and symptoms may include neurodegeneration, seizures, liver and spleen enlargement, skeletal irregularities, joint stiffness, distended … More Joey Bear
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