5 Life Lessons I've Learned From My Daughter's Rare Disease

Dear Mitochondrial Disease,

When you came into my life eight years ago, I started preparing to go to war.

I wanted you out of my daughter’s body, and I was willing to give up everything to do it. I went to the specialist, walked away from my career, relocated to another state and cut those who were too weak for battle out of my life. I gave it my all, but you are still winning. Today I know I will not win this war, but I will learn. You have become my teacher. I get new lessons every day, but these are some of the things you have taught me.

1. Live life to the fullest. This is a lesson that I already knew, but like most people, I forgot it once we settle down in the suburbs. Our days became full of scheduled activities for the family. We gave up our sense of adventure and the willingness to take risks. How did I get from being the girl who went skinny-dipping in a Costa Rican rainforest to the mom with a color-coded calendar?

You came along shook my world and made me realize life is short and we have to make good memories together. One day you will leave me with a heartache that nothing will heal, until than, we are going to make memories that you cannot steal.

2. Love without expecting anything in return. I tell my daughter I love her and she cannot say those words back to me. I will have to care for her for the rest of her life, without ever hearing her say “Thank you.” Yet I love every minute of being with her, and it’s an honor to take care of her. I have learned to love without any conditions, and I care for her without any expectations.

3. Be independent. I had to become physically strong when I realized I couldn’t depend on anyone else to lift and carry my daughter for me. I am her caregiver and I must stay strong because you have taken away my daughter’s strength.

Thinking about the strength she has lost gives me the drive I need to continue getting stronger. Knowing she may never walk keeps pushing the two of us to run faster. Oh, you thought you took away her ability to run? Look in her room, and you will see all her race bibs. My legs, her wheels and our team have made her into a strong runner.

4. Be present. Caring for Rebecca requires me to stay in the present. There is no cure, and I don’t know if she will be here past the present moment. This is a skill that has carried over to other areas of my life. When I am eating, I enjoy every bite. When someone is talking to me, I listen to every word. When I am outdoors, I notice the details in nature. When I hug, I put warm thoughts and love into the hug. When I am with you, I am with you.

5. Be flexible. Getting stronger emotionally and physically requires learning to be flexible. When I am at the breaking point, I tell myself to bend so I don’t break. Yoga has become my time to bend physically. Prayer has become my time to surrender spiritually. Through yoga and prayer I have learned to become comfortable with the uncertainty of having to live with you.

I cannot see you as a blessing, but I can see you as a lesson.

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