April 18, 2018 | By: Marty Barnes
Categories: Family Support
Birthdays were very symbolic in our household.
Not only was Casey a year older, but she had defied the odds for yet one more year. We would go all out for her birthdays. Each year we said we were going to dial it back, not go too big or too elaborate. But we always did. Casey’s birthday was a HUGE deal each year.
In 2016, I was working on the plans for her 10th birthday. She was a big Elvis fan and was in a phase where she loved to just hang out with her girlfriends.
She was a big Daddy’s girl. If she would hear him come in or see him out of the corner of her eye, she would light up. We decided for her 10th birthday that we were going to have a daddy-daughter sock hop. We were going to play lots of Elvis and other Casey-approved rock ‘n' roll.
We had ordered a life-size cutout of Elvis. We had a great time standing him up in different areas of the house and scaring each other and the nurses. We were decorating socks with music notes and other sock-hop themed shapes to hand out as favors to all of her little friends.
Each year with Casey, we knew it could it be our last. As she got older and her health started to go down faster and faster, we knew that our time was limited. Making it to 10 was a really big deal. Somehow, I knew deep down that there was a good chance we would not be able to celebrate 11 together.
On March 10, 2016, Casey took her last breath. She would have turned 10 on April 23. We put Elvis away and he has been folded up under her bed ever since. We put away all of the other decorations as well. She was so close. When people ask me how old she was, my answer is 10. Yes, I know she didn’t technically turn 10 but she earned that 10th year.
We did a balloon release and her friends sent balloons to heaven for Casey to celebrate on that first April 23rd. We will continue to celebrate her every year for as long as I am able.
She may not be here physically to celebrate with us, but she deserves a celebration in her honor.
If your child has passed away, here is information that may offer help and comfort.
Parenting a child with a disability is a journey, not a destination. Some people have been dealing with this since their child was born. Some people have joined the journey later in their child’s life.
Categories: Family Support
So much I've written about focuses on my child's autism spectrum disorder and ADHD challenges. For just this moment, I want to focus on the absolute, beautiful joy of being his mom.
Categories: Family Support
It’s easy to get caught up in the social challenges that children with disabilities face. But when we consider the progress made over the last 80-90 years, we can be grateful for how far we have come.
Categories: Family Support