Dear Mom,
The past two years have been like none I could have imagined. When CeCe was diagnosed with JDM and her life as a normal child ended; I forgot how to breathe. For the past two years, I’ve been holding my breath. I’ve held my breath through over 107 methotrexate injections, 23 hospitalized infusions, countless blood tests, innumerable medication dosages, hospital stays and ER visits, too many doctor’s appointments, and infinite days of anxiety, sadness, exhaustion, and helplessness.
I hold my breath for all the pain she must endure, sadness and isolation she feels, and all that she must bravely face at such a young age. Instead of chasing butterflies, she complains of leg pain and tiredness. She fears Friday evenings and the shots they bring. She begs for infusions because they ease the soreness. She wonders when she will be normal like other kids and when she won’t have to wear sunscreen, hats, and long sleeves. She battles day in and day out all the while I hold my breath, hoping that something will change in her body so she is healed, something will change in the medical world so that there is a better understanding of JDM, something will happen in the pharmaceutical world and there will be FDA approved medications; I hold my breath.
I hold my breath for my daughter, but mom, you’ve allowed me to start breathing again. I could not possibly do this JM journey alone. Your support, care, and understanding give me a sense of peace. You are present in my life and in my daughter’s life which allows me a chance to catch my breath. You drive us the almost two hour long drive to infusions and doctor’s appointments allowing me physical rest. You help distract CeCe and allow me to concentrate on doctor’s reports so that my mental burden is lessened. You hug me when I need to cry and support my emotional well being. You take care of CeCe when I need a break and allow me time to take care of myself. Your support of me, allows me to not only better support CeCe, but it allows me a moment to catch my breath, to keep running this marathon, this marathon I had hoped was only a sprint. You lift my mental load and even allow yourself to be used as my punching bag, sounding board, and shoulder to cry on.
You see not only what CeCe goes through day in and day out, but you see what I see and what I go through. You understand the battle, you are a part of the fight with us, and you are one of the most important people on our team. You have been my ventilator in this crazy unfair journey and I know you would do it selflessly again and again. Words cannot express how thankful and blessed my daughter and I are to have you in our lives, helping us take this day by day, virus by virus, infusion by infusion, and shot by shot.
I love you mom and thank you for helping me be the best mom I can be for my kid,
TaylerAnn
