To My Kids On Mother’s Day

Ava & Bobby –

It’s very early on Mother’s Day morning and for the first time in months, we are all together under one roof. You are both tucked in your cozy beds and nothing, literally nothing, makes me happier. I am not sure what compelled me to get up and write this morning and I hope you will forgive me for sharing this with the world, but this is the first Mother’s Day since Parkinson’s came into our lives and I didn’t want it to pass without telling you a few things I’ve learned since that day in December when we shared the news. 

I know from working in the news industry for a hot second, you should never bury the lead, so here it is: you two are the strongest, most empathetic and loving kids I’ve ever met and I, without question, am the luckiest person on the planet.  

As you know, when we told you, my therapist suggested to us that we make a list of all the adventures we had been on in the past few years while I already had this disease but we didn’t know it. This, she said, would be proof to you that there is a great, robust, active life ahead for all of us even with this disease. We sat on our bed with the sun shining in our room, talking about all the trips we have recently had - including the day I screamed at you to stay away from the freaking edge of the Grand Canyon 327 times and the time we rode Splash Mountain wearing those ridiculous rain ponchos only to have what had to be the largest wave in park history absolutely destroy us until we were laughing so hard we cried. Despite the fact that we gave you permission to be sad for as long as you needed to feel that way, you both quickly flipped the switch from fear to hope, and from tears  to laughter. I can’t remember which one of you suggested it, but someone asked if we could get to the front of the lines at Disney now and I’ve never been prouder.

These. Ponchos. Did. NOTHING!!! And breaking news, they never do!

I’d love to say that as a kid I would have reacted the same. That I too would have immediately turned the focus outward and started asking questions, like you both did, about how you could help me. I am not sure if I would have, on my own, ordered Parkinson’s awareness bracelets and proudly worn them, like you did Bobbo. And I am quite certain that I would never have shared this blog with my entire college community, as you have Ava. Even if you thought about it yourselves or felt a tinge of self-pity in the last few months, you never asked me how this would affect you and that means one thing, I must be a fucking great mom. (JK…kind of) 

Here you are Ava, on the edge of the Grand Canyon testing me!!

We, as a family, have lost people we love. The hole left in our hearts after losing Grandpa is still there. I think of him all the time, and what he’d say to me if he were here right now. Definitely some kind of nonsense I wouldn’t understand from his giant, brilliant scientist brain, but mixed with a massive dose of love and faith that he exuded always. He’d say “that’s ok, that’s ok” in his special way, give me a hug and offer me a giant glass of red wine at the kitchen table in Succasunna.

I wish I could say that after losing Grandpa, and Zoe, and Miss Laura that I really absorbed the concept of life being short - that I woke up and realized how important it was to not sweat the small stuff. But I didn’t. I instead, sweated ALL of the stuff. I guess I misunderstood the saying because I worried about everything in life, except the things that really mattered. I think of myself back then as Princess Peach, zooming down a Super Mario Kart course missing every single question marked box that was in front of me that would have extended my life or given me extra powers. Like, how many more signs did I need to slow down and really, truly appreciate life? Well consider Parkison’s to be that annoying Ghost thing in the game that parks itself in front of your driver so you can’t ignore it. 

Ok I’m done with the Mario Kart analogies now, I promise, but I can say without hesitation that this diagnosis has given me the gift of perspective that I was missing. I’m not dying, so I don’t want to be too dramatic, but there is a feeling of transformation you feel when you get a life altering diagnosis, so here’s what I hope you will learn from my situation: 

Laugh At Everything:  Laugh at yourself, laugh at your friends, laugh at your spouse, laugh at your future kids…laugh often and at everything you can. When you have the choice to fight about something, or to see the humor in the situation and let it go, the right answer is always to laugh. It’s not always going to be easy to do this, especially for passionate, competitive kids like you, but I promise, you’ll have plenty of opportunities for real sadness and strife in your lives, so when you have the chance to laugh at something, do it. 

You Are Not Going To Get In Trouble: You know when you make a mistake of some kind how there’s this instant feeling of panic that rises inside you? For me, that feeling comes from a deep fear of getting in trouble. That someone is going to reprimand you and there will be some form of punishment coming my way. Even at 48, I feel this way. Well, I am here to tell you, you are NOT going to get in trouble and I credit your amazing Dad for teaching me this. No one is mad at you and you don’t have to go into time out. I wish I had learned this much earlier in my adult life - it would have saved me so much angst.  

It’s Going to Be Ok: In the same vein as above, repeat after me: It’s all going to be OK!!! This has always been a hard one for me to accept because I have to plan everything and I invest so much energy in making everything perfect. But what I am learning is that things really do always work out the way they are supposed to. Ava, I hope this year as Gateway has really solidified this lesson for you. Was the path to ND the way we all originally envisioned it? No. Did it work out even better in the end? Absolutely. Perfect is so overrated and I promise, in the end, it really will be ok. 

Show Up For Each Other: You are both going to be exceptionally accomplished kids. How do I know this? Well you have two amazing parents as role models in this department and as your Great Grandpa Giuseppe used to say, you don’t get a donkey from two thoroughbreds. (I’m laughing so hard writing that) but it’s true. We have set the example for you to work incredibly hard and to be successful BUT never, ever let your busy lives keep you from showing up for each other, and for your future families. Don’t skip each other's milestones or celebrations or vacations. Invest time in each others’ lives and do so without judgment. You will never regret it, I promise you. 

Take The Trip: My absolute favorite memories of the four of us are when we are on trips. Specifically, when after a long day of exploring, we sit at a table somewhere and talk about the day or other random topics. You both have wandering hearts so give into the desire to travel. I hope that your travels will always bring you back home, but if they don’t, we’ll come find you. So go! Take the trip. Put that knowledge of every country’s flag to good use Bobbo! And invite me and Dad - we wanna come too. 

There is so much more I want to say but an inhumane 9 am soccer game on Mother’s Day awaits - and I wouldn’t miss it for the world. But know that this list of really wise advice will grow in the years to come. I’ll add to it as I slowly learn more about how to live my life in this new chapter but today, I just want you to know, that no matter what happens, no matter what the future holds for me and for all of us, that you are the pure joy in my life. Because of you both, and Dad, I consider myself to be truly lucky and the gift that Parkinson’s has already given me is the clarity to see that. 

Thank you for making me a mom. I love you.