Sorry To Miss The CureSMA ConferenceI really wanted to go to The CureSMA Conference this year! I have no idea why Mike didn’t sign us up. I’m still so mad at him! Why on earth...reactions3comments
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 do. I get paid to be with Mike...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 into that teenager. Finally into that young adult...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 family. Jessie was not meeting her age-related milestones...reactionscomments
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 condition with spinal muscular atrophy. When it’s cold...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 joy. She's trapped in a body that won't...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 “empty nesters”. This is met with different emotions. ...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 had a bucket list also. When she was...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 and co-worker to name a few. When...reactionscomments
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 didn't know anyone who was disabled personally until...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 experience for me. My senior year of high...reactionscomments
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 her needs. There were many choices in life...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 to her twin brother. Our pediatrician advised us...reactionscomments
This is Her SpaceAdvocacy is part of my daily life. I provide family support to newly diagnosed families, I share Emma’s story as a patient ambassador for the treatment she receives, I work...reactions4comments
Being a Parent of a Child with SMAI have talked about this a few times already. I have also read other parents' points of view on this site. I can say with certainty that we all come...reactionscomments
Caring For Our Daughter Born With Spinal Muscular Atrophy: One's Family ApproachWe were going to have a baby! My wife Zelda, water had broken that night and off we went to the hospital as planned. So, my wife, my parents, and...reactionscomments
Grandparents Help Child with SMA Live LifeZelda's water had broken that night and off we went to the hospital, as planned. So, my wife, my parents, and her mother crammed into my car, and off we...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 twins, my daughter, Jessie was born with Spinal...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 was the beginning of the pandemic and Mike’s...reactionscomments
Tough DaysSome mornings you wake up and you just know the day is going to be tough. You want to stay in bed, in the warm comfort of your home, and...reactions1comment
