Three Things I've Learned About Myself

When I was younger, I would sometimes find myself thinking about how I would handle adversity if and when it came my way. I don’t mean disappointments or small setbacks. I wondered how I would react to a really difficult life circumstance. I thought about whether or not I had it in me to behave with strength and grace when things got really hard.

Then, at a routine 20-week ultrasound during my second pregnancy, I started to uncover the answers to those questions. I learned that when faced with a really difficult situation, sometimes I reacted with strength and grace. But, at other times, I was overcome with grief and very, very angry.

Through my 17+ year journey with parenting a child with profound disabilities and extremely complex medical needs, I’ve learned three important lessons. I don’t think these things are unique to me; instead, I think many people who are facing adversity, including special needs parents, have uncovered these truths on their own path to hope and happiness.

1. I can choose joy.

Shortly after my daughter was born, we received her diagnosis and I was devastated. Learning that she was legally blind and would soon start having seizures that would be difficult to control was like a punch to the gut. Knowing that she would have profound disabilities, significant medical challenges and a shortened life expectancy sucked the air from my lungs. I was heartbroken, spending my days feeling sad, scared and angry. I clearly remember wondering, “Will I ever be happy again?”

The answer is a resounding “YES!” – I have found happiness again. In the beginning, it sometimes felt more forced than genuine. In addition to my baby daughter who had gotten the difficult diagnosis, we had a two-year-old son. So, even when I felt like staying in bed and pulling the covers over my head as a I grieved, I had a baby and a toddler relying on me to care for them. And, I wanted to do more than simply take care of their physical needs – I wanted them to experience the joy of childhood.

At first, I felt like I was faking it, trying to infuse normalcy and fun while my mind and heart were reeling. But, gradually, I was able to capture small moments of true joy. And, the more I watched for them, the more of those moments I was able to find. I learned that even though it wasn’t always easy, I could choose joy.

2. Gratitude is a life saver.

I will be honest – when we first received Julia’s diagnosis, I didn’t feel like I had very many things to be grateful for. In fact, it felt as though our family’s situation was extremely unfair. We had been thrust into a world of unrelenting seizures and medical appointments and therapies.

During those early months, a good friend said something I’ve never forgotten. She told me, “Michele, everyone has a backstory. Your suffering may be easier to see, but everyone has challenges in their life.” At first, those words took me by surprise. After all, my daughter was having hundreds of seizures every day as we tried medication after medication to get her some relief, and the simplest of milestones were passing her by. In the meantime, I was trying to find my footing as I returned to work, which meant working opposite shifts from my husband so that one of us was always home to care for our kids. I was overwhelmed; gratitude and the suffering of others outside of my family were not at the top of my mind.

But, there is always something to be grateful for. Looking deeper, I realized that I was so lucky because:

• We had access to great medical care, and we had a pediatric neurologist who was fighting hard to improve our daughter’s quality of life.
• My husband was a strong partner, willing to put his career on the back burner as he adjusted his schedule to be home with the kids every morning while I went to work. He was all in, dedicated to me and our kids.
• My husband and I both had extremely flexible employers, which made it possible for me to continue my career. In addition to providing some financial security, my job gave me the opportunity to spend time with other adults and focus on something that challenged my mind so I didn’t spend all of my time with unproductive, obsessive worrying.
• Even after returning to work, I could still spend lots of time with my kids every day because I only worked part-time. I was able to enjoy the best of both worlds – a working mom and a stay-at-home mom.

And, the list goes on and on. Once I changed my mindset to be more grateful, my overall attitude began to change as well. A spirit of gratitude leads to more gratitude, and for me, that was the foundation of moving from chronic sadness to bursts of true joy and stretches of quiet contentment.

Turns out, gratitude was the key to my ability to choose joy.

3. I am stronger than I thought I could be, and I am SO resilient.

As the mother of four kids, I know that parenting is hard. And, special needs parenting is really hard. My parenting journey has challenged me mentally, physically, emotionally and spiritually. Through it all, I’ve learned that I am stronger than I realized. I envision myself as soft and kind on the outside, with a spine of steel on the inside.

With so many hurdles to get over, there have been lots of stumbles along the way. But, each and every time, I’ve picked myself up, brushed off the dust and carried on. I recently saw a quote that said, “So far, you have survived 100% of your bad days.” That made me pause for a few seconds, and then I realized that it is absolutely true. I’ve made it through every one of the scary and hard and sad days. That means I have a perfect track record of resilience. And, so do you!

What lessons have you learned as you’ve worked to overcome really difficult challenges? I’d love to hear your story so that we can all learn from each other!