Meet our Mother of the Month for November. We all have a story to tell. This is the story from Melinda Perkins, our Mother of the Month for November. Thanks for sharing your story, Melinda and thank you for being a part of our “We Walk Together” Mothers Retreat.
“It’s not the load that weighs you down, it’s the way you carry it.” –C.S. Lewis
Caroline started as a surprise. We hadn’t planned to have kids for a little longer, we had only been married a few months, but then we felt like maybe it was time. I thought it would take at least a few months as is usual, but I found myself pregnant immediately. Everything went well, and at 37.5 weeks, my water broke very unexpectedly. But labor didn’t go as planned and we ended up deciding that a c-section was the right course. Caroline came out looking great, her scores were amazing, everything was right as rain. But that was Sunday night. Monday morning everything changed. The pediatrician said her belly looked distended and since she hadn’t pooped yet, she needed to be checked out. After some tests and procedures they told us she needed to go to the children’s hospital and have surgery the next day to correct whatever blockage she had in her bowels. I had to stay where I was since I had just had major surgery as well. So away she went, torn from my arms, neither of us knowing what kind of load we were going to have to carry.
After surgery the next day my husband returned to my hospital to tell me the news: she probably has Cystic Fibrosis. “Is that the one where they can’t be around each other?” I asked, my Grey’s Anatomy level medical knowledge kicking in. But that was it. That was all I knew. So we waited. Waited for her newborn screen, which came back negative (they don’t test for genetics in Utah, just a blood level). And then we waited for genetics. And a week later we knew: Cystic Fibrosis, double f508Del genes. And then the learning began. After 3.5 weeks in the NICU it was time to take our baby home and hope that we knew what we were doing. And hope that we could carry this new load.
At about 7 months old Caroline began vomiting regularly. She would eat less and less as the day went on, then vomit it all back up around 11:00. We were in and out of the hospital a few times, each time being told it must just be a stomach bug since her X-rays looked good, and some fluids would make her good as new. Finally, after a month of issues, after crying in the CF clinic, after telling them I wouldn’t take her home again, after a 14 hour day of runaround at the hospital, we had an answer. She had scar tissue causing a blockage in her bowel from her first surgery, it was time to remove that piece of bowel completely. Luckily it was just a small piece.
That first year is honestly mostly a blur. A stress filled blur. A blur where I barely left the house, where postpartum depression went undiagnosed, where I felt pretty isolated, where I didn’t really know how to carry my load. But after that, things started to turn around. Weight gain and eating were a constant source of stress and worry, but everything else started to balance itself out.
Our routine had a little more wiggle room in it, I was healthier, and I started getting involved with our local Parent’s Advisory Council. Finding those other CF moms and participating in the events we planned was the best thing I could have asked for. It was a way I could be involved, find support, and help others do the same. I have made some great friends from both the council and meeting people at our events. I know who lives near me, who to call when I have questions, and who to call when I have a CF story to tell that only another CF mom will understand. These are the people I can laugh and cry with more honestly than almost anyone else in the world. Finding these women who fight the same fight that I do has been my way of carrying the load and it has blessed me every day since.
Being able to attend the Cody Dieruf Benefit Foundation’s “We Walk Together” Mothers Retreat last month was another amazing way to connect with CF moms. I couldn’t have asked for a more amazing weekend filled with love, hope, healing, connection, and joy. It has inspired me to continue to find more ways to reach out to the CF parents in Utah and connect them to each other. I want everyone to feel the same kind of support that I have felt over the last few years, because we need it. We need that human connection to survive. We need to find that bond, to feel that love, to be understood, and to give all of that to someone else too. We need to find a way to carry the load that still gives us the chance to live.
Life has carried on, we have another little one who is a CF carrier like mom and dad, we moved closer to family, we have found our normal. But Caroline’s CF journey still presents us with new normals from time to time. She started Orkambi at 4.5, and just two weeks ago at 5.5, she had her g tube placed. And hopefully in about another year she will have a new opportunity to take Trikafta. She is an amazing example to me every day. She almost too happily does her vest and nebulizer treatments. She learned how to use the Toby Podhaler earlier this year. She has already learned to how to clean her g tube, how to unhook herself from her night feeds, and then hook herself up again. She is smart, brave, happy, and confident. We had to talk about how she probably shouldn’t show everyone in her kindergarten class her new g tube, but she has shown pretty much everyone else. She carries her load with an ease that is childlike and innocent and never ceases to amaze. I hope it never changes. I hope I can learn to carry my load a little more like she does. I hope we all can.