Becoming a “Medical Mom”
When we become parents, most of us expect growth, learning, trials, hurdles, and celebrations. I say this often to clients, parenting is a ride! There are ups, downs, sideways, backward, and forward progress. Sometimes when we expect it, and sometimes when we don’t.
My parenting journey started as I thought it would. It went a bit sideways when I became a widow. That’s a story for a different day. My parenting journey really took a turn when my son was around 4 years old.
I earned the self-given title of Medical Mom.
My son hasn’t always been small. He was born at a good weight, and grew well as an infant. Eventually, though, the growth slowed down. For a while, myself and his care team thought it was because his dad and I are short. But when he didn’t have any growth in a year, and was falling off the growth charts, things got a bit more serious. We started the journey by adding an endocrinologist to the care team. We added protein shakes to his diet on a daily basis. My son was on a “high calorie diet” which basically meant ‘let him eat as much as his body will take, with care to good protein, good fats, and healthy carbs.’ Lucky kid, right?! He gained maybe 5 pounds in a year, and no height. Long story short, we learned there is a hormonal deficiency which is now being treated. (Thank you, modern medicine.) This treatment will last over a decade. Within this journey, there were visits with GI and neurosurgery. One specialist is in the wings in case we need it. Neurosurgery and endocrinology will be a part of my son’s life for the foreseeable future. This is just one kid in the span of 4 years. I share all of this as just a small glimpse of how I “earned my stripes.”
In our home we also have neurodivergence, learning disabilities, and chronic sickness. We have short-term considerations. We have life-long considerations.
Parenting as a Medical Mom is a different kind of ride. This ride comes with its own stressors- navigating health insurance, bills, seeking out the specialists, managing appointments, managing medications, securing two different medications for two different kids that were in a shortage for most of 2023, as well as explaining procedures and medications to a young child. There are also amazing celebrations- documenting my son growing 5 inches in one year. For real, 5 inches in a year. Typical growth for a kiddo is around 2 inches per year; my son more than doubled that and took it in stride. More celebrations of better understanding our kids’ brains to help them function as best as they can given their set of abilities.
Have I navigated this area of my life with ease and perfection? [insert cartoon choking image here] Nope. Sure haven’t! But do I give myself and my partner grace in the journey? You betcha. How? Let me explain, and hopefully it will help you or someone you may know on a similar journey.
I see a therapist.
My therapist is my sounding board when I need it. My therapist is another pillar of support for me. My therapist challenges me when I get stuck. My therapist listens to me whine, complain, or cry when I need that space. Shout out to my therapist - you rock!
I engage in learning about my kids’ diagnoses.
I don’t do this to try to outsmart their providers at all. I trust those providers so much. I do it so I can cognitively understand what is going on. I’m a life-long learner not only by profession, but by personality. If I could be in some sort of school for the rest of my life, I probably would be (but money doesn’t grow on trees apparently). I genuinely enjoy learning. I also do this to understand when I am conversing with providers so I don’t feel like a deer in the headlights. It helps me ask questions. It helps me feel like I am a part of the care team.
I take care of my marriage.
I choose my marriage. I make it a priority. My marriage is important to me. My kids are important to me. One cannot cancel out the other. The way that we choose to take care of our marriage is monthly date nights, daily connection in the evening, respecting each other’s autonomy (aka it’s golf season so my husband golfs every week; I go to my book clubs), and going to bed together every night. It’s not always perfect. My husband and I argue. We get frustrated at each other, at the kids, at the medical bills, at the dog. And we work it out. We figure it out because it’s important to us to be a team, be a family unit, and have some fun while we are at it.
I found my “village.”
When we started my son’s medication journey, I felt overwhelmed by it all. And I felt really alone. I felt isolated in sharing about it because some extended family members aren’t in full support (which is historically who I turn to in time of wanting support). As a therapist, I knew these feelings were valid, and also needed to be addressed. I turned to good ole social media. I found groups related to the diagnosis, and joined one. Yes, just one, because I also didn’t want to be flooded with information and opinions. Want to know something cool and way out of my norm? I started my own social media group that is very specific to the treatment because there was a gap. Quiet and introverted Jeni is a group admin and moderator. Nothing bad has happened with that group (yet). In fact, I feel supported in both groups, and it seems the other participants do, too.
