Hard Hitting - For a true glimpse into the life of a parent caring for a child with a rare disease.
Celebrate Rare Disease Day 2023 (2/28/23) by helping us raise awareness and money for rare disease research and to support those affected. Tag @austin1stfoundation on Facebook, Instagram, or Twitter wearing Austin 1st swag or blue.
Philippians 4:11 - I am not saying this because I am in need, for I have learned to be content whatever the circumstances.
Stuck in Standstill.
Trying to comprehend on how to get back to normal, when, in reality I have no idea what normal is.
When you become the parent of two children, you anticipate all the years you’ll spend together.
You have new best friends for the longevity of, at least, your own lifespan.
Stressing over juggling sports schedules, school activities and spending countless years making precious memories & milestones. Celebrating birthdays, graduations and accomplishments while also comforting your children through tough times. Watching brothers fight over whatever drama has transpired. An older brother defending his sibling from a cruel kid bullying him at school. Experiencing the joy of boys turning into men.
Becoming a husband, father, uncle, and grandparents-but most importantly knowing they will have a best friend for life to share those moments with.
I must assume most would see all of this as normal.
I truly envy you.
It’s not possible for someone to return to normal when they never got to experience it in the first place.
Doctors' appointments, hospital stays. Feeding schedules that dictate our plans. Constantly debating whether your child is just ‘delayed’ or has something very serious going on.
Making sure every medication is being given at the correct times. Questioning how much medication is too much.
If we hire a nurse, are they going to steal his medications, like the last one did.
It’s as if I try and trick myself into adjusting my thought process and instead striving for our NEW normal.
There isn’t normal. There isn’t a new normal.
This is why people say ‘parents aren’t supposed to bury their children’….because nothing about it is normal.
My life had been set on cruise control for so long caring for our son. Seemingly, coming to a shrieking halt the day he could no longer fight his disease and left this world.
I’ve lost my normal and I remain stuck in a standstill without our first born here.
- Lindsey Terling (Mother of Austin Terling)
Austin 1st Foundation is a 501 (c)(3) Public Charity - See the impact we make and support our mission to be Champions for Rare Disease by raising awareness and research dollars for families in Alabama & beyond.
Watch our Rare Disease Day 2023 video - This video shows the reality of what a ultra-rare degenerative disease can look like.