I can’t find the words to describe the pressures of being responsible for my child’s care, safety, and happiness. It flips from teaching her a new song to correcting her feet as we walk to the park, to completing exercises for OT at the dinner table all in what is a seamless day. I am responsible for management of her medical care, monitoring her goals and expectations in IEP meetings and finding typical activities where she can seamless integrate with girls her age without sticking out too much.
I have the same twenty-four hours to get myself together, work, cook, clean, manage my finances while trying to hold up my social life and squeeze in moments for self-care. I don’t get to take days off to focus on these items, which means in between my own therapy and hers I’m on the phone or sending emails to conquer it all. Some days not enough gets done, others it feels like I could do it all and bake a cake at the end of the day. I don’t get a chance to catch my breath. It seems in a day a whole lot happens, and nothing gets done.
How would you feel running for a finish line that keeps moving around? Instead of this being your last mile you run only to find out you have ten-more? “What is the point of it all?”, I ask myself as I collapse in the bed exhausted and defeated by the day. Will I ever find balance? When will life feel normal again? The answer is both freeing and fearful, there is no normal.
The earlier I accepted that it all cannot be done in a day, that disappointments are not just part of life but is my daily process I felt a sigh of relief. Nothing and no one ever died for admitting their hardship. What you discover in the moment is an opportunity to be kind to yourself, pour a glass of wine, and let go of expectations. Accepting that life will be built different than anyone else you know. That for the most part your friends and family advice on your child is void. Finally, I see the adversity in the journey was giving me the courage to live a new life on our terms.
This pandemic has shown me my strengths, identified some flaws, and brought my daughter and I closer. She is loving the time together. She is growing stronger each day. We take long walks by the water, we go for rides through the countryside to keep from going stir crazy. I try my best to fit in as much as I can. I let tears roll when they need to, express grief when necessary and move forward with my day. It does not matter if my day is good or not, Sophia still needs me. That fact pushes me to complete any seemingly unbearable task. I push through to be seen and heard in places I was told I am invisible. I work through all of my stuff to be better. Because when you are better you can do better, and by do better I mean more.
This time has made it really clear what I am passionate about, what serves me, and what I can leave behind. I literally lost the taste for some foods, people, and places. I know more than ever that I need to pursue dreams too. I know now that being visible, truly seeing myself as a part of this world means releasing what I hold sacred about myself.
My truth is layered as my life, my day is unpredictable and explosive some days. Yet in all of this I need to write. Everything. Like the song title that played while on my way to the hospital with Sophia and she got great news, or what my dad said in Bassa, or advice from a good friend, or a book title that showed itself as a street sign. What I know is true is THIS IS MY LIFE. The sooner I start loving it, being present in it, and coloring it with all the things I love life began to love me back. I love my life because it is mines. I only get one shot at this present moment, so I’ll make it count.
I will not be the writer who gets to jet off to beautiful islands to write. I will reflect my life, steal moments in the day when things are a bit quiet and push for it. I may have to do limited touring with my books. All I know is this is my time to write. I hope you are along the ride for the push forward.
Ellen Cappard is an author illustrator creating diverse stories. She has a background in graphic design, painting, photography as well as a decade of experience with teaching and mentoring children and young adults.