Here’s a little note from 2016 about our mission to help families thrive, not just survive…


Photo Credit Raven Ivory Photography

Last June, my daughter, Gianna, came home from Summer Camp sponsored by the Muscular Dystrophy Association, which is an annual opportunity of kids with neuromuscular diseases to feel “normal” for a week, by giving them the opportunity to participate in adapted fun outdoor activities that might be otherwise limiting.  As we unpacked her bag, we found a collection of band-aids with the word “Thrive” on them.  “What does that mean, mom?” she inquired.  Without consulting the dictionary or Google, I came up with what made the most sense to me, in the moment, “It means to live and grow in a healthy way.”  “Oh,” she replied, “well, that sounds like a good thing.”  “Yes!  It is!”  I told her.  “That is exactly what I want for you to do in your life—to thrive.  We should all want to thrive, not just survive.”

In that moment, I was taken back to the early months of 2011. It was the middle of winter.  I had just had a baby.  I had recently gotten the diagnosis of myotonic muscular dystrophy, for not one, but all four of my kids.  I had a partner that was gone during the craziest times of the day, leaving me to be the primary caregiver.  I was tired. I was struggling with some depression (not that I would tell anyone, though.) I had four little people relying on me to not only survive, but to do my best to help them thrive.  In those dark moments, I finally reached out to my sister, who could tell as soon as she heard my voice, that I was not okay.  She encouraged me to do some self-care, to get help if I needed to, and gave me advice that would follow me (though I was honestly years from fully heeding)—“You owe it to your children to be your best self.”  At that moment, I knew that being in “survival mode”—a place that many of us land in—was not enough.  I had to find a way to get into “thrival mode,” a process that would take me YEARS.

First, I shifted my mindset.  Getting the news that life as you know it in both the present and future will be permanently affected by a degenerative neurological disorder that plagues all of your offspring plus your partner is kind of a big deal.  However, I didn’t let myself fall down the dark hole of disease.  See, I actually like my kids, I have fun with them, and I love hanging out with them, so if I have to care for them and live with them for the rest of their lives, that really is okay by me.  I gave up all my expectations and decided I needed to figure out how to live our lives, while we have them.  I started dreaming up adventures for us, places to go, and things to see.  I got more relaxed about homework and school, and focused on ways to make them productive and members of society, which I still want them to be, in their own way, despite their disabilities.  I gave up that whole ideal that parents have for their children—“I just want them to be healthy & happy”—and a focused on the happy part, while also trying to keep them as healthy as possible (let’s just say our kale and Vitamin D3 consumption has increased significantly over the years.)

Then I worked on myself…sort of.  I found my way to my yoga mat more. I ate better. I lost by “baby weight.”  I focused on my work, built up my business, earned some important credentials, and put forth a pretty stellar and believable exterior of thriving.  However no amount of warrior poses, kale, or “It’s Normal.” Enlightened Mama t-shirts could cover up how I was really feeling.  Deep down, I was barely surviving.  Sure, my kids were doing really well, all things considered.  However, I was miserable in my marriage to a partner who did not share the same “Carpe Diem” mentality that I did, and was actually devastated by our kids’ disease (and rightfully so, as he was the one to unknowingly passed it on to them,) but wouldn’t admit it.  Each day brought more distance and discomfort, as he preferred alcohol and denial, over reality.  My work-life balance was horrible, as I was literally up working on my computer every single night into the wee hours of the morning.  I rarely got a solid night’s sleep.  I put the needs of my colleagues, students, and families well above my own.  The real kicker?  I didn’t see that anything was wrong.  I was so used to my life being that way—in complete and utter “survival mode”—that it felt normal.

All that changed when I unexpectedly fell in love, going on two years ago now.  An amazing person came into my life, who actually SAW me, who actually SAW that I was barely hanging on.  And she wanted nothing more that to help me stop surviving and to start thriving.  She has made me enjoy my life again.   She encourages me to take baths and to set boundaries with my clients—and I actually do!  I have turned my computer off more and started going the the movies again.  I sing more, dance more, laugh more, and love more. The changes that have taken place for me over these last 18 months have been immense.  I have shifted and modified nearly every facet of my life.  I chose to leave an unhealthy relationship, and have recently entered a new marriage that truly feels like a partnership on all levels.  I have altered my work to create a life that is balanced for me, for my new wife, and my family.  I am allowing doors to close and even bigger windows to open.  I am a completely different person, which is a good thing.  I am now a truly happily married woman, in a healthy relationship.  I have grown, I have changed, I have healed, and I have broken my own silence.

See, I realized that my silence was my greatest downfall.  I didn’t speak my truth, I didn’t open up to anyone, and I chose to ignore my pain, as opposed to turning to others for help.  Most recently, I broke some major silence by making a public post on Facebook about being sexually assaulted when I was 14, something that I have realized, in this time of transformation, deeply affected me, more than I ever realized.  As you can imagine, it was incredibly difficult to go public with this secret of my past, but for me, it was a very important part of my healing. I had no idea when I posted it, that it would bring forth courage in all of many others as well—“survivors” as we are in the habit of saying. I know that for all that were able to share that they felt my pain, their are dozens (or perhaps even hundreds) more who read it but were silent, not because they didn’t want to be heard, but because they weren’t ready to share in that way, which I completely understand and respect.  My speaking out about it, not only publicly, but most importantly to the people that were around me at that time and/or were involved in my residual trauma (i.e. my friends, my parents, and my ex-husband) has allowed me to finally break out of survival mode and really get into “thrival mode,” something I have been craving & seeking for years.

My newfound, ongoing thriving in my life has meant that I have turned my back on a society and a system that decided that it was okay for people to just “survive,” that thinks that being “fine” is completely acceptable. It’s time to put an end to this mentality of survival, and truly begin to thrive, in whatever way is meaningful to the individual.  It’s time to start putting our oxygen mask on first so we can help others around us, especially our children.  And know that there is no right or wrong way to thrive, as we all need to find the path and journey of our lives that allows us to do just as I instructed my beautiful daughter—to live and grow in a healthy way.  I don’t want to be a survivor anymore.  I want to be a thriver.  Anyone care to join me?

With immense gratitude,
Liz Lull