A Parent's Long Journey to Finding SMA TreatmentWhen we are given a health issue, we face a new journey. When it’s our own personal journey, we do our best...reactions1comment
Spinal Muscular Atrophy: Self-Care Tips for CaregiversSpinal muscular atrophy (SMA) is a lifelong condition. SMA is most commonly diagnosed at birth or during early childhood. The symptoms of...reactions1comment
We Flow with the Changes in Our ChildYes, your role as a parent changes remarkably as your child grows from that little toddler into school age and then again...reactionscomments
Everyday LifeFor our firstborn son, the first five years of his life were pretty much routine. We were oblivious to any health problems...reactionscomments
Taking Care of Myself as Mike’s Full-Time CaregiverIn March 2020 I became Mike’s full-time caregiver. This was a big decision and one we discussed for a long time. It...reactionscomments
Becoming My Boyfriend’s Full Time SMA Caretaker I am the oldest of 5. I had one sister and 3 brothers. Growing up in my family I was always by...reactionscomments
Maintaining Relationships with Family and FriendsCaretaking for a loved one is a full-time gig. I purposely used the word gig instead of job. I really love what I...reactions1comment
Making Sacrifices or Accommodating Each OtherRelationships are all about give and take. We wear so many different relationship hats in our life. Child and parent, sibling, friend, mate...reactionscomments
Sorry To Miss The CureSMA ConferenceI really wanted to go to The CureSMA Conference a recent year! I have no idea why Mike didn’t sign us up...reactions3comments
Escaping the Cold WintersMike and I are thinking about embarking on another road trip soon. These Pennsylvania winters are so hard on Mike in his...reactionscomments
A Parent's JourneyAs a parent, we can remember that day when we heard the news, "Congratulations, you are going to have a baby." From...reactions1comment
Helping My Daughter Make Choices and Experience LifeI realized that we, as parents of a child with spinal muscular atrophy (SMA), were trying to do everything possible to meet...reactionscomments
My Reactions To Finding Out That My Daughter Had Spinal Muscular AtrophyMy experience with anticipatory grief (AG) began when Jessie was about 3 months old. She was not meeting her developmental goals compared...reactionscomments
Preparing Emotionally with a Child with Spinal Muscular AtrophyIt is 1974, and my wife was pregnant. We were not expecting twins However, we were blessed with twins. One of the...reactionscomments
Large Medical Team Helps a Child With SMAWhen our daughter, Jessie was born we were overjoyed. We were unaware of what was in store for my daughter and our...reactionscomments
Jessie's Bucket List - What is on Yours?Everyone has a bucket list. A bucket list is something you want to do or experience before you die. In 1989, Jessie...reactions1comment
Empty Nest AgainAs any typical parent will experience the day when your last child leaves the childhood home. At this point we are called...reactionscomments
If You Fall, I’m Going Down With YouMy sweet child, she’s fearless. She’s put me at max speed. She’s "Daddy look at me!" She’s full of constant laughter and...reactions1comment
Unlearning Ingrained AbleismI'll be honest here- I didn't grow up around anyone with a disability. Growing up, classrooms in my school were segregated. I...reactions1comment
Memories of the Labor Day TelethonI’m sure we all can remember that Labor Day meant watching the Jerry Lewis’s Muscular Dystrophy Telethon. It was always an emotional...reactionscomments
