Today is Jack’s 28th BirtHdAy!!!!!!

We are thrilled to be celebrating but it’s one of those birthdays that has made me stop and think. 

Dan was 28 when we got married. He was just starting his MBA at Stern and working his tail off at BONY. At 28 I was teaching art at Great Neck North Middle school, we bought our first home in beautiful Maplewood, New Jersey and Jack was born a few months later. We were just beginning our lives together, full of dreams, plans, and the certainty that life would unfold in a fairly predictable way.

Jack is 28 now and his milestones look very different.

He doesn’t drive. He doesn’t have a career. He doesn’t live independently. He never has more than $2000 in is bank account. He still needs help with many of the things most people his age – most people three years old — have long since mastered. His life has been shaped by ALD in ways none of us could have imagined on the day he was born. I never even imagined a 28-year-old life could look like Jack’s life looks today.

Most days I march around life grateful for our lives, but there are moments when that reality catches me off guard.

Sometimes it’s seeing other 20-somethings starting cool graduate programs, getting married, starting a family, talking about promotions and mortgages, or riding their bicycles across the country (A HUGE shout out to Jack Mackay!!!). Sometimes it’s realizing that Jack’s greatest excitement this week has been his Monica Monday, spending time with Maria’s family, going to his day program, and eating the donuts Anna brought to share with his friends at Universal.

For just a moment, thoughts whisper, This isn’t what you imagined.

And it’s true. It isn’t. Twenty-eight years ago, I held a newborn and imagined one future. Life gave him/us another.

But here’s what grief sometimes forgets to mention. Jack’s life is filled with things that matter. He has people who absolutely adore him. He makes strangers smile without even trying. He celebrates life’s smallest moments with wholehearted enthusiasm. Let’s list those things that Jack has enjoyed this week — his Monica Monday, spending time with Maria’s family, going to his day program, and eating the donuts Anna brought to share with his friends at Universal. What a wonderful list of experiences!

He has taught our family more about resilience, patience, acceptance, and unconditional love than any textbook or seminar ever could. He has created a community that stretches far beyond our own family. Through Jack, we’ve met incredible people, found lifelong friendships, and discovered purpose we never knew we would have. His life has changed many other lives. Mine included.

Is it hard? Absolutely.

There are still days when I wish ALD had never entered our story. I wish he could experience the independence so many 28-year-olds take for granted. I wish he could enjoy the independence of driving his first car and falling in love with a first kiss or enjoying a day without hydration through a g-tube and medication twice a day. I wish he had been spared so much.

Those wishes can exist AND so can gratitude for a beautiful life.

Your life may look different than we once imagined, but it is no less meaningful. You remind us every day that a beautiful life isn’t defined by independence, productivity, or checking off society’s milestones. A beautiful life is defined by the love we give, the joy we create, and the lives we touch. And by that measure, your life is extraordinary.

Happy Birthday Boogz!

Love, Mom