Being the Match

I am happy to report that Jordan is exiting his grumpy phase. For the past two months, Mr. Jordan has mean-mugged or given the stink eye to anyone who approaches him that isn't one of his grandmothers (or his grandmother's twin sister). Developmentally, separation anxiety hit him harder than it ever hit the girls. Thankfully, the "Stink Man" has started to smile again just in time for another CF appointment. The phrase "so salty" will once again refer to his sweat and not the dramatic expression on his face.

Recently, I was asked how Jordan's diagnosis has impacted my perspective on life. Reflecting upon a year ago, when I felt greatly lost and apprehensive of what might be in store for my son and family, I can say that increased knowledge about his disease has aided me in empowering my family. Permitting myself to grieve the loss of the life I initially imagined for Jordan has also allowed me to gain insight into how precious and fleeting life is, which has made this past year joyful in ways that I could not have ever expected. Of course, I am not grateful for Jordan's disease, nor will I ever entirely be at peace with the genetic cards dealt to him, but I am working to make meaning of this situation and enrich the lives of my children and those around me every day as a result.

As an educator, my instinct is to seek answers to questions through extensive research and reading. Scouring the CF Foundation's website for information on trials and promising new drugs being released continues to provide me with hope and comfort. Listening to podcasts about health during the holiday season and how to keep germs away has heightened my awareness of how to bolster immunity and protect Jordan from colds and other common illnesses that might damage his lungs and overall health. Connecting to the CF community through social media posts and reading the stories of young adults who thrive in spite of the many challenges that CF has placed before them brings me tremendous comfort as a mother. Jordan will grow, love, and contribute to this world in amazing ways.

I know that in spite of the truly horrible illnesses and struggles that Jordan may face, he will have a much larger family of people behind him who can empathize with him, encourage him, and love him... from five feet away (check the CF Movie's trailer). CF people are encouraged to avoid contact with other CF patients because of the highly contagious nature of the bacteria that grow in their lungs. Even though they should not physically touch each other,  the ways in which I have witnessed people with CF touch the hearts of other people with and without CF is inspiring and incredibly encouraging. We are blessed with this community of people who are so willing to love, listening, and support - all further reminders of how important these attributes are to convey and share with anyone who crosses our paths.

In my quest to understand his disease further, I came across a bone marrow donor website. While bone marrow has nothing to do with CF or treating Jordan's disease, I continued to read. Initially under the impression that this process required a substantial recovery period and invasive surgery, I was surprised at how relatively simple the procedure is, albeit the procedure is alleged to be painful. After thoroughly reading about the process and the Be the Match organization, I have officially submitted my DNA to be part of the bank of donors to give my bone marrow should I match with a person in need of this life-saving procedure. While I cannot save my son from his genetic fate, perhaps I can help to save someone's son or loved one who suffers from numerous blood diseases and various types of cancer. We are all called to serve our fellow humans. For me, serving in this capacity brings me a sense of renewed hope that medical advances can improve the quality of life for many people. While the diseases may be different, someday I may walk in similar shoes of a parent whose child might be struggling and need a life-saving treatment. Momentary pain of donating bone marrow in this instance can bring a lifetime of happiness for another family, and for me, that brings comfort.

Each day I continue to believe more deeply that everything does not happen for a reason. There is no reason for suffering; tragedies lack logic. However, we choose to learn and grow from what is placed before us. Without obstacles to overcome, we might never fully feel the true depth of love or understand the solace that can be found in sacrifice and serve. I continue to actively choose to create meaning in the life that has been given to me and will continue to challenge my children to do the same. Through our actions, we can choose to be part of a positive change in the world around us, and while each day will not be without pain, our attitudes and strength that we will draw from each other will make it the best day possible. We will live happily, and we will seek ways to serve those who walk alongside us. And for that, the days granted to us will be full.