When our family learned that Miles had Prader-Willi syndrome, everything changed. I had never heard of PWS before, and I was in shock. I was scared and heartbroken for Josh and Carolyn. All I could think was, What are we going to do?
Processing the Diagnosis 
Carolyn asked me to never look up Prader-Willi syndrome on the internet. I didn’t, and I never have.
Every minute felt like an hour. It took me a while to process everything. I remember feeling very scared and not knowing what to do, wishing I could fix it all. I put my faith in God and took one foot in front of the other. I am also very blessed to have a loving family and friends who surround me with their support.
Watching Your Child Hurt
There were so many hard moments.
Seeing your child cry and be heartbroken, telling us, “I will never be able to give my son a birthday cake.” Watching Carolyn go back and forth to the NICU for 84 days, having to leave her baby, Miles, there. Her never being able to breastfeed him or hold him without all the tubes. Not knowing what I could do to help her, with unanswered questions coming one after the other.
It truly was one of the hardest times of my life.
But I do have to say this. My daughter has the strength of Wonder Woman. Her strength and power to be Miles’s biggest advocate has been amazing. Her knowledge of PWS and her pure love have made me so proud of her.
Taking Action
It took a while for me to process everything. Carolyn helped me understand PWS and the day to day life for Miles, and she still does this for me today.
I wanted to do anything I could to help Miles live the best life possible.
One way I’ve been able to do that is by supporting Carolyn with her One Small Step walk. I help gather raffle items, reach out to sponsors, and support Carolyn in organizing everything.
Fundraising has been wonderful. It gave me a way to put my energy toward helping Miles and others with PWS. I will admit that the first year was a little overwhelming. The next year, things fell into place much easier.
Making Meaning
Being involved makes me feel like I’m doing something good for Miles and for everyone living with PWS. It truly is amazing how our small community rallies together to support our fundraiser, Miles for Miles!
The love that surrounds Miles, and all of us, is just wonderful.
With all the bad things in the world, this journey has reminded me that there are truly good, kind, and generous people out there.
A Message for Other Grandparents
Be inspired by who your grandchild is. Be part of their life. Trust in your love for them.
There are many ways to help, whether it’s organizing a walk fundraiser or supporting one. Most of all, just listen, be present, and love.
Miles teaches me things all the time. His love for us is so true, simple, and completely beautiful. As a grandparent, you need to hold on to that and be there in any way you can.
