Parenting With Cystic Fibrosis
Last updated: May 2022
The balance of being a provider and needing providing wasn’t something I thought about until I became a mother.
Diagnosed with CF at age 12, most of my teenage years were spent adjusting and learning to manage my new diagnosis. By age twenty though I was also about to become a mother. I would suddenly need to learn to balance my own healthcare as well as another little person's every need.
My first pregnancy occurred in 2005 and was the very first CF pregnancy at the military hospital I received my care. I was naturally monitored very closely and was often the subject of a whole new set of experiences for my team. Thankfully, I had a relatively calm pregnancy and labor considering. I did have to struggle with weight loss, a new diagnosis of diabetes, and finding a safe balance with my antibiotics.
The baby was born very healthy though at just past 38 weeks. There were no additional complications. We were able to successfully breastfeed until an infection sprung up in my sixth month of nursing. I had to stop so I could take a strong antibiotic.
My first experience with Motherhood was an amazing journey, one I’m glad I decided to follow.
Patient and mother
Being a Cystic Fibrosis patient though is never easy and being a mother is never easy, and so the two combined had some difficult moments. I suddenly was responsible for two lives. Every choice I made in my care, affected his life too. He was an easy baby, so it made things easier. He slept hours every day and was sleeping through the night by three months. He was very rarely fussy, ate on a routine schedule, and was content just bouncing around in his little jumper-roo.
On the days my body just wasn’t working with me, he was content with very little. On the days my body was working with me he provided very many smiles.
There were extenuating difficulties as well. His father deployed the second six months of his life. My lung function had declined with pregnancy. I’d struggled putting the weight I lost during pregnancy back on. I’d had to give up breastfeeding, which I loved, at six months and that devastated me. The antibiotic my body needed wasn’t approved for breastfeeding.
The second time around
I added to that balance three and a half years later, when I welcomed my second son into the mix in November of 2008. In many ways he was a whole new experience. Not only was I now balancing my own health, a toddler, and a newborn – my second boy was a full-on bundle of energy. He struggled with colic for a few weeks, he slept way less during the day, and he was on the move by nine months old. While my responsibilities very much doubled, so did the joy my kids brought me. So, for all the struggles, it truly was worth it.
My pregnancy the second time had been much healthier. I didn’t lose as much weight, and my lung function did not decline all that much. My labor though was a difficult one. The epidural failed, my blood sugar and his dropped, and he was unable to solely nurse the first day. They needed his sugar raised more than my colostrum could do. Thankfully, I was able to begin nursing him entirely by day three and was able to breastfeed this time for 13 months.
Balance amidst the chaos
The years have flown by. I have entered into my sixteenth year as a mother.
In that time I have had hospitalizations to learn to work around with two kids. I do have a strong support system though. I had to learn to manage the guilt of having to share myself with my kids and my own needs. I had to learn to focus on prioritizing my health and not slipping into the pattern of getting so caught up in my other responsibilities.
So, I can’t lie and say there have not been some difficult moments. It wasn’t always easy, but we did it. They’ve grown now into teenagers who make me proud. They’ve learned to help on my tough days. Other days, they need extra TLC. Yet somehow, we always make the balance work.
Somewhere in the chaos, we found our way.
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