Welcome, Morgan, Mother of the Month February 2020. Morgan, your story has and will inspire many!
It has been almost six years since the birth of our daughter, Annie and her diagnosis of cystic fibrosis. As I pause to reflect on the past six years, I am struck with how much has happened. If you would have asked me six years ago what the future would look like for us you probably would have received a blank stare.
Our daughter Annie had just been born and came into the world while I was going through a major health crisis. During my pregnancy, I was dealing with a swallowing disorder called Achalasia which made carrying her to term extremely difficult. After her birth by c-section, I was diagnosed with pneumonia and following that a hole in my heart.
While I was fighting to stay alive my husband was given the news that our daughter’s newborn screen had shown she most likely had cystic fibrosis. My mom and my husband decided to carry this information together until they had a plan to meet with doctors and confirm her diagnosis. The next twelve months were a blur of tests and surgeries.
Annie’s sweat test confirmed she had cystic fibrosis while our 5-year-old son did not. I was in and out of hospitals in Montana, Idaho, Utah, and Oregon with a failed ablation then a successful ablation on my heart, esophageal surgery and finally closing the hole in my heart. Through all of this, we were blessed by constant support from family and friends. When my mom and husband finally told me about our daughter’s cystic fibrosis diagnosis, we were faced with a sharp learning curve making sure she received the care she needed to stay healthy. I vividly remember sitting in her doctor’s office after they had reviewed her sweat test trying to convince the doctor and nurses that Annie didn’t have CF. They were so patient with me but finally had to say “your daughter DOES have CF and this is what we can and need to do.”
Annie has been a constant light in our lives. She has taught me so much about grace. I was so sick when she first came home from the hospital, we did not have the bonding time most mothers do when they bring their newborn home but my family was there to do everything they could to make her feel so loved. I honestly don’t think she even missed a beat! I remember listening to my mom rocking her in the middle of the night while I was too sick to make it down the hall, she would sing to her “Beautiful, girl, beautiful girl.”
She IS our beautiful girl and such a blessing to our family. She is also one tough cookie. Annie was hospitalized for pseudomonas at 2 then hospitalized for a mucus clog and a collapsed lung at 4. She has endured all of that, every hospital visit and all of her treatments with such strength.
After getting well I threw myself into prioritizing relationships and CF Advocacy. I traveled to Washington DC twice to share Annie’s story at March on the Hill. I also joined a Patient Advocacy group and started writing for the Cystic Fibrosis Foundation’s Blog. I really enjoyed all of these opportunities and found healing through purpose. Attending the Mother’s Retreat was another great source of processing and healing. Spending time with other mothers dealing with similar issues was really special. I remember laying under the large drum in the middle of the drumming circle feeling the energy from the group, listening to my breath and just letting go of so many of the bottled-up emotions inside of me. What a gift to have others who understand, who can help you heal even without words.
Our experience with cystic fibrosis has been a walk with grace. Learning to accept. Learning to live for today. Learning to love, forgive and accept help from others. I know our story is just beginning but I choose to be thankful for what it has taught me. My heart is full.