The coughing, the nebulizers, the pills, the doctor's appointments, the needles, hospital stays, peripherally inserted central catheter (PICC) lines, surgeries, fevers, fatigue, and so much more -- cystic fibrosis requires so much physical and mental strength and bravery. I thought my journey through lung failure, transplant, cancer, and chemotherapy would be my toughest fight yet. I was wrong of course. What I've heard my whole life, that motherhood is the hardest job you'll ever have, is true.
I have physically and emotionally endured more than I ever could have imagined. But nothing compares to the beauty, love, sacrifice, and struggle of motherhood. My mom taught me from the very beginning that there were lots of ways to build a family. I had secretly always wanted to be pregnant, give birth, breastfeed, and raise three kids. But deep down I knew I'd have to find a different path to motherhood.
At age 25, after talking to my family and my doctor, I decided that I wasn't ever going to carry a baby. When I met and fell in love with my husband, Adam, I told him from the beginning that I wanted a family but, similar to other aspects of my life, we would need to go the unconventional route. With the blessing from my CF care team, I went through in-vitro fertilization (IVF). One year, three embryo transfers, and two different surrogates later, we were pregnant.
As Bryce grew bigger and stronger in Kim's tummy, my lungs grew weaker.
By the time Bryce was ready to come into the world, my lungs were ready to retire. I was too sick to be there for his birth. The first person he met, the first person to hold him, the first person to kiss him was not me.
I waited close to 50 hours to meet my boy. It was the longest, darkest two days of my life. But man was it worth the wait!
Four weeks later, I received my life saving double-lung transplant. Of course, being sick, on oxygen, and having a fever was NOT how I envisioned starting things off with Bryce. But yet again, life reminded me how little control we have over our lives at times.
The night I got “the call,” I kissed Bryce good night and a wave of fear washed over me. “What if I don't see him again?” But the other part of me knew I would never be the kind of mother he deserved without new lungs. My transplant recovery was nine days from the operating room to discharge. I pushed through the pain and exhaustion because of Bryce. He was starting to try to smile and that was a first I was not willing to miss!
Fast forward: Bryce is four and half years old now. He is the most beautiful, tenderhearted soul. He loves T-ball, basketball, swimming, the beach, and Cheerios! My determination and passion to not just live but to thrive has always been there from the day I was born. But, as a mother and organ recipient, I feel even more responsibility to take care of myself. Motherhood and chronic illness demand two opposing mindsets. I put the needs of my child first. It's instinctual. When Bryce cries, when he's hungry, when he's scared, when he's sick, when he wants to play, or sleep, or test my patience … no matter what's going on with me, the world freezes and nobody else matters but him.
But my responsibilities as a cystic fibrosis, diabetic, and lung transplant patient, include full night sleeps, resting when I am tired, eating regularly to keep my blood glucose steady, staying away from sick people, avoiding crowded places especially during flu season, and traveling to see my care team at least every three months.
I am constantly being pulled in two different directions. I have missed Bryce's first day of pre-K while in the hospital and I have taken him to the pediatrician when he was sick. As a mother and a patient, neither of those scenarios were easy for me. After sinus surgery, I wasn't able to lift him for 4-6 weeks. He cried and wanted me to hold him and when I put him to bed, I cried in the shower.
Ultimately, it takes a village. My husband, our parents, siblings, aunts, uncles, cousins, friends, and total strangers have all helped raise Bryce.
After four and half years of love, adventure, giggles, potty training, surgeries, fevers, ear infections, nose drips, and birthday parties, I have decided that ultimately what Bryce needs the most is ME.
He needs me to be alive and healthy so I can love, guide, and support him for as long as possible. It's with a very heavy heart that I have to watch other people care for him when he is sick, leave him so often to go to my clinic visits, stay in bed while someone else drives him to school, or drag him to a lab appointment when his friends are at the park.
Some days I still cry in the shower, but most days I know deep inside that I am a good mother and I am a good patient. They don't have to be mutually exclusive. In fact, CF has made me a better mother and being a mother has helped be a better patient. Through my struggles, I have learned resilience, compassion, patience, persistence, and gratitude.
I can't imagine my life without the struggles of CF, but I also can't imagine my life without Bryce. Luckily, I don't have to. To all the CF patients who are thinking about becoming a parent someday, it is a deeply personal decision, one that I hope includes your partner, your family, and your CF care team because it's going to take a village!
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