I’ve written several posts on this website about the grieving process, which began with our son Andy’s SMA diagnosis. But, I don’t want you to think that our life was devoid of joy during those weeks between the day we learned about SMA and the day we lost our son to it. Certainly, we were devastated by the severity and fast progression of the disease – but we were always thrilled with our amazing boy. For 20 weeks, 5 hours and 13 minutes, he filled our lives with love, wonder, and laughter.
SMA was a part of Andy, but it will never define him. He was funny, smart, cuddly, silly, patient and, more than anything else, brave. He smiled every day, even when we couldn’t. His body was paralyzed, but his eyes danced.
We didn’t realize it at the time, but we were holding an angel in our arms. And, that angel made sure we learned these lessons:
- Don’t underestimate your children. They are smarter than you think (and often smarter than you are).
- Time is not a given for anyone, so don’t take it for granted.
- Live in the present moment, trying not to dwell on the past or to project into the future.
- Try to see the light in every day, especially when your world is at its darkest.
- Learn how to laugh through the tears and to find the beauty in grief.
- Understand that sometimes the smallest gesture can make the biggest impact.
- Never say no to the chance to cuddle with someone you love.
- Cherish every moment you have with your family and friends. And, show them how much you love them anytime you can.
- Know that asking for help isn’t a sign of weakness – it’s an act of trust.
- Say thank you and mean it.
- Allow yourself to have moments of pure, unadulterated silliness. Sing loudly and dance wildly.
- Love yourself, just as you are. You are perfectly you.
- Feel what you have to feel, and don’t apologize to anyone for it.
- Accept that you can’t control the curveballs that are thrown at you in this life…but you can control how you act in response to them.
- Don’t be afraid of the things you don’t understand, but take the time to learn about them.
- Always follow your instincts and trust in yourself.
- Make sure your priorities are in order. It’s trite but true – your gravestone won’t ever say “beloved employee.”
- Realize that you’re doing the best that you can with the information you have. Don’t second-guess yourself.
- When all else fails, don’t lose hope.
- Believe in angels. I know I do.
Thank you, Andy, for picking us to be your family and for continuing to teach us how to live. We love you.