Thirteen years ago, I was minding my own business. My biggest concern in life was figuring out how to balance my career now that I had just had my second child. I needed to get my Master’s Degree if I were to increase my teaching salary, which was let’s just say…not very much…but my heart ached to be at home as much as possible with the kids. My husband and I had started our family young and staying home was not an option if we wanted to raise them in the community we where we had bought a house. I applied for graduate school.
I felt old for my age, only 28 at the time. I already had a mini-van, a mortgage, two kids, and a career. It all happened so fast. Only a few years earlier I had been single and living at home with my parents to save money to live in “the city”. That never happened. And worse, it did for all of my friends. They were still living a life that was completely foreign to me now.
Still, I was grateful. Although I was nervous that I was unprepared for all of this responsibility at that time, I adapted quickly. I have always been the kind of person that although insecure at first, manages to find her stride and excel in a short amount of time. People said I made it look easy. I assure you, it was not.
Even so, I had a checklist for being a good mom. I made sure to read to them daily, make all of their wellness and dental check ups exactly when they should have them, get them outside as much as possible, and keep them on a schedule.
I researched all of the things I bought for them, went to three different private pre-schools to find just the right one, read all of the right parenting books of the day, and took great pride in giving them amazing bedrooms and clothes. I don’t know why those last two things mattered to me, but they did. I wanted to shower them in beautiful things and beautiful spaces.
I also went through the process of planning out all of the experiences I ever wanted them to have. I planned year’s worth of vacations… Disney, Yellowstone, Washington DC, Europe, Hawaii, Mexico… plotting out exactly when we would be able to afford them. I started buying them experiences for presents instead of things…tickets to plays and museums, trips to water parks, and more.
I even started pre-paid college tuition plans by the time I turned 30. For 8 years, the majority of all of my checks went to those payments. It made going to work just a little bit easier.
I also volunteered for everything I could. I joined the women’s group at church. I began teaching religious education. I helped out at the school whenever I could. I chaperoned field trips. Whatever I could do to help, I tried.
This was my life. It felt heavy and exhausting, but it felt good. While many of my friends were still looking for a relationship or figuring out their career, I already had the life I had always dreamed of. I couldn’t wait to have at least two more children, finish my degree, stay home for a few years, go back to teaching when they hit junior high school, be an administrator, eventually get a PhD and be a professor when I retired.
This is what I thought my life would be like. This is truly what I expected to happen. And then… she got sick.
As my daughter began to slip away from us, first into a world of repeated and chronic physical illness and then into a world of developmental delays and strange behaviors, I tried desperately to convince myself everything would eventually be all right. That’s how my life had always been prior, and there was no reason to believe it wouldn’t be that way now. Somehow, someway, I always managed to get life back on track.
And so for a few years as things got worse, and “eventually” seemed to be getting further and further away, I became more desperate to convince myself it would all work out in the end. My daughter would be fine, I told myself daily. My life would go back to normal, I believed, and the detour we were on would eventually realign with the path I had envisioned.
Alas, that’s not at all what happened. My detour went way, way, way off course and has never returned to the original road. I am now at a place where I accept that. Resisting it for all of those years not only delayed the proper treatment for her, but also caused tremendous anxiety, sadness, and stress. For so long, I just couldn’t let go of what I believed should have been.
Admittedly, there are moments I still can’t. There’s a delicate dance between accepting what is and accepting why it had to be in the first place. It’s very difficult for me to accept what happened to my child, primarily because it was so preventable. It was such a terrible tragedy and such an awful loss for no good reason. I’m not sure I’ll ever reconcile that entirely, although recently I received some incredible insight into possibly being able to (link article).
But accepting what is, not what should have been in my mind…accepting what is right now and dealing with it as it is has lead me to a life I could have never imagined in my wildest dreams.
It was only when I finally embraced what is and stopped resisting it that I was able to make meaning. And crazily, that my life also became richer, more exciting, and more powerful than I ever could have imagined.
It’s hard not to feel strange about that. The idea that my life has benefited as a result of my daughter’s suffering seems like an awful thing. The guilt that comes from that paradox is hard to describe.
And yet, it’s true. The result of trying to make meaning out of her experience has brought me some of the greatest relationships, experiences, and personal growth I have ever had.
For when I finally surrendered to what had happened, dug in and figured out why, and then followed the calling to do something about it, amazing things began unfolding in front of me.
I met and became friends with the most impressive, likeminded people from all over the globe doing incredible work for the cause. I am honored to consider them colleagues.
I became recognized as a powerful voice and writer and was given a platform to share our story, my theories, and my research. I even got a book deal as a result! (I am under contract for a book I expect to finish this fall.)
I spoke at conferences and special events and got invited to be a board member of organizations I care about.
I threw a fundraiser and got asked to co-host another that has raised hundreds of thousands of dollars for children like mine.
I helped put on a rally in Washington D.C. for over 8,000 parents.
I met celebrities and got kissed on the cheek by a bon-a-fide rock star!
I got hired as a consultant for a documentary about the issue and work side by side with a Kennedy.
I have even worked with a powerful lobbyist to create legislation to protect our kids.
Perhaps most important, I changed as a person in the most profound ways. I found my voice. I found my confidence. I found my truth. I found my purpose.
Likewise, I lost some things too. I lost my insecurities. I lost my need to be liked and approved by everyone. I lost the need to try and please everyone. I lost the need for everyone to believe me.
I simply don’t care any more what anyone thinks. I know that sounds cliché, but it’s true. And I can’t put into words what kind of freedom that allows you if and when that ever happens to you.
When you finally learn who you are…when you stop needing other people to validate you, your experience, or your truth; when you stop feeling the need to defend or explain yourself; when you know you are right and that’s really the only thing you need to know; well, then the world is a different place. It really, really is.
I think about the vision for myself I used to have sometimes. I think about 13 years ago and then I think about now. I have to stop and shake my head in those moments and how remarkably different it is from what I ever imagined.
When I get off the phone with a powerful person in government…
When I get an email from a celebrity that I had no idea was following me and thanking me for my voice…
When I look at my book contract and just stare at it in awe…
When I get a text message about congressional developments or off a conference call about legislation…
When I find the courage to run for school board because I know what it’s like to have enemies and I’m no longer worried about it…
Those are the moments I know I have made meaning out of this mess.
Would I trade it in a second to have my daughter healthy and whole? Of course. No questions asked.
But what I’ve learned is that when turning back the clock is not an option, you are really only left with two choices. Staying stuck in the moment and wishing it weren’t so, or embracing it and trying to make it matter.
I can promise you; even the biggest mess can bring the world meaning. And I believe, in the end, that’s really our job. Life is messy. Always has been. Always will be.
It’s what you do to clean it up that makes all the difference.