Chronic Sorrow is Real, But I Won’t Let It Define Me

“Will I ever be happy again?” That thought echoed in my head over and over in the days, weeks and months after my daughter was born. When she was only two days old, she received a devastating diagnosis that included daily, uncontrolled seizures, a significant vision impairment and a life expectancy of just 6-8 years.

I was sad and angry and scared. There were times that I truly thought that I might not ever feel joy again.

Spoiler alert: I would be happy again. But, it would take time, and some changes in the way I was thinking.

Thinking about all of the things that my daughter can’t do and how that impacts the rest of our family can make me really sad. Watching her struggle with medical challenges and frequent illnesses makes my heart hurt. And, I’ve found that these feelings of grief can come in waves, sometimes when I least expect it, and certainly not when it’s convenient.

These waves of grief have a name: chronic sorrow. It’s intense feelings of recurring grief associated with ongoing loss. My daughter’s complex medical and developmental challenges have a profound and frequent impact on our entire family. We experience losses, some big and some small, every day of our lives. And, some days, I feel bone-deep sorrow for my daughter, for all of the things she cannot do and for all of the challenges she faces every single day.

Yikes! That’s a dark hole I try not to tumble into very often. While chronic sorrow is definitely real, I don’t want it to be the thing that defines me. I don’t want sadness to be the focus of my daughter’s life, constantly hanging over us like a dark cloud. That’s why I’m on a search for more joy – not just for my own sake, but to improve the quality of life for my entire family.

So, what are some ways I’ve moved away from the sorrow and towards the joy? Here are four things that have worked for me:

1 – Gratitude: When my daughter was a baby, feeling grateful was not easy for me. My sadness was mixed with a lot of anger because it just didn’t seem fair that my daughter and my family had been given such a heavy load. But, gradually, I realized that I had so much to be grateful for. And, the more gratitude I felt, the less angry I was. That made more room for the joy to squeeze in.

2 – Being a little bit selfish: It shouldn’t feel this way, but sometimes taking care of myself feels a like an indulgence. But, self care is not selfish; it’s a necessity. Beyond the basics of eating healthy and getting  sleep and some exercise, everyone deserves to do something every day that makes them happy. Whether it’s just five minutes or carving out an hour or more for myself, I watch for opportunities to take the time to do something that replenishes me. That might be taking a long walk while listening to a motivating podcast, reading a good novel or taking two minutes to relax my shoulders and take a few deep breaths.

3 –  Getting professional help: Early on, I recognized that my grief was more than I could handle on my own. I felt so overwhelmed, and I knew that I needed professional therapy. At first, I felt embarrassed about needing to see a therapist because I thought it was a sign of weakness. But, seeking help didn’t mean that I was weak; it meant that I was empowering myself to deal with my circumstances rather than letting the situation overpower me. I was taking action rather than passively sinking into my grief.

4 – Appreciating small moments of joy: Even on the darkest days, I try to find tiny joys. It could be a smile from my daughter, a hug from a friend, an inspirational quote, a happy song, an ice cream cone with rainbow sprinkles…I’ve learned that joy is there if I’m willing to search for it.

The special needs parenting journey is not easy. Every day, I try to make mindful choices that infuse more happiness into my life. The more joy I can find for myself, the more patience, energy and positivity I have to share with my family and friends. So, while I can’t completely eliminate the sorrow and anxiety in my life, it’s definitely worth the effort to do everything I can to find more joy.

To learn more about my family's journey, check out the eBook "Choosing Joy".