A few weeks ago, I posted the first installment of my list of hopeful things. It is meant for everyone to enjoy, but particularly relevant for families struggling with a new diagnosis. In it, I focused on the people in my life: the friends and family members who have risen to the occasion, the relationships that have deepened, and the new connections that have formed.
For this second installment, there's a different theme: the ways in which I have grown since my youngest daughter, JJ, was diagnosed with Rett Syndrome. That unexpected phone call transformed my life. I have become a different mother, wife, friend, and person because of it. And for the most part, I’m proud of these changes.
If you are a parent of a child with a disability, you have likely become a different version of yourself too. On the darker days, I’ve found it can help to focus on the ways in which we have changed for the better because of our struggles.
So here it is—the second installment of my list of hopeful things.
1. I now have a clear perspective about what is and isn’t important in my life. I used to worry so much about what other people thought, how they viewed me, and how to accommodate their needs. Now, I am learning to let much of that go, and it feels wonderful.
2. Because of JJ’s mobility and health issues, I have a new appreciation for my own healthy body and those of other people. I will never again take my abilities for granted. I worry so much less about what my body looks like and focus much more on what it does for me. It’s extremely liberating.
3. I never thought of myself as a strong person before JJ’s diagnosis, but I have come to realize just how much I am able to face without flinching. I’ve become a better, stronger, wiser, more powerful version of myself. But I’m not the only one. I love watching this happen to other special needs parents too. There are so many ways in which we are strong.
4. I used to keep one eye on the clock and focus constantly on the future. But JJ’s lifestyle forces me to slow down and just be. Without her, I don’t believe I would have ever learned to relax into the moment and enjoy all the unexpected good times to their fullest.
5. Even though I have stepped out of the workforce, I continue to hone skills that will be valuable should I ever step back in. JJ’s lifestyle means that I have learned to multitask, prioritize, advocate, and remain calm under pressure. There’s actually research to back me up on this. Special needs parents make great employees.
6. I might not wake up looking forward to every day, but I never wake up wondering why I am here or why I matter. At various times throughout the day, I am my daughter’s teacher, therapist, advocate, nurse, pharmacist, and translator. I also act as her eyes, hands, arms, legs, and voice. My sense of purpose is stronger now than ever.
Stay tuned for another list in the coming weeks. In the meantime, let me know about the ways in which you or someone you know has grown stronger, wiser, or more compassionate because of their struggles.
Let me know in the comments below.