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How Being a Special Needs Mom Changed My ‘Before Age 40’ Bucket List

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Yesterday, I found a handwritten note sitting in a box given to me for my 30th birthday. I had made a list of 40 things I wanted to accomplish before I turned 40. Having recently lost my dad to ALS, surely I had met the lifetime quota for hardship and good things were coming my way. 

But now, I shed a few tears knowing most of the items on that list will not be crossed off before I turn 40 in a few weeks.

I try to live without thinking about how things could have been what my life would be like if my daughter did not have cerebral palsy or mitochondrial disease but it was hard to ignore while holding a list written on the day she was conceived. Long before, I learned it’s foolish to think any of us meet our quota.

But today is a new day, and here’s the truth about that list: I didn’t do most of the things I wanted to do, but the lessons I’ve learned in the last ten years are far more valuable than any academic or financial achievement. In a world that values physical perfection and financial success above all else, I discovered what really matters.

I didn’t buy my dream car, but I’m thankful to have a van with a wheelchair lift. It’s not a sexy car, but often the kids argue over who gets to push the button to operate the ramp.

We didn’t keep the membership to the Atlanta Athletic Club, but I’m a member of a secret Facebook page for parents of kids with special needs. We get together for parents night out. How cool is that?

I didn’t get to be the director of student services, but I’ve gotten my daughter the services she needs at every single IEP meeting.

I didn’t get that tummy tuck, but I’m physically stronger and faster than I was 10 years ago. I can dead lift my kid and her wheelchair.

I didn’t take that culinary experience trip to Paris, but my friends know if they need a meal they can call me. I’ve learned how to put a meal together in less than 20 minutes. 

I didn’t finish writing my book, but a thank you note from a mother who read a short article I wrote taught me sharing pieces of my story can help someone else heal.

That week-long yoga retreat didn’t happen, but last week I managed to go to yoga three days in a row. A true retreat considering my kids are home for summer break.

I didn’t buy that bike, but I did manage to convince the insurance company to pay for a second wheelchair for my daughter — a miracle.

I didn’t hire a professional decorator to decorate my home, but I learned to only allow things into my home that bring joy.

I didn’t manage to save what I need to retire comfortably. My part-time job will not pay the bills. But if my daughter has a medical emergency and I’m out of town, my boss is the only person I trust to make medical decisions on our behalf. Working for a person I love and trust is worth more than a million bucks in my retirement fund.

I didn’t end my love affair with sugar, but I know sugar and I will always be unfinished business.

I didn’t get to on another mission trip to South America, but my neighbors know if they’re running behind I will bring all the kids home from the bus stop.

I didn’t give up cussing, but now only use it during two special occasions: filling out the renewal forms for Medicaid and sex.

I didn’t get to teach my kids all about the art collection at the Barnes Foundation, but we’re thrilled to be a part of the Kyle Pease Foundation.

I didn’t become an elder in the church, but I learned what it means to surrender everything to God.

We didn’t have child number three, but I’m truly thankful for the opportunity to love and care for the two beautiful girls we have.

I didn’t do most of the things I planned on doing, but I did better. I made a bucket list for my daughter and with the exception of one thing, every single item has been crossed off. Everything else is icing on the cake.

Am I going to make a 50 before 50 list? No. My list list only has one item now:

“Make it a rule, and pray to God to help you keep it, never, if possible, to lie down at night without being able to say: I have made one human being at least a little wiser, or a little happier, or at least a little better this day.” -Charles Kingsley


Originally published: July 7, 2015
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