People act like parenting a medically complex child is just constant sadness and stress—like we’re trapped in a never-ending cycle of grief. And yeah, some days are hard as hell, but the reality? It’s a mix of exhaustion, victories, frustration, and ridiculous carpet stains that never fully come out no matter what cleaning product you use.
I realized just how different my life was when I casually asked some coworkers how they get puke out of the carpet. Their response? “Oh, that doesn’t happen often… we just get the carpet cleaned.”
I sat there thinking… you get your carpet cleaned when it happens? Like, call a professional? Because if that’s the case, I need a live-in team of professional carpet cleaners. That was the moment I knew: we live in two completely different worlds.
Honestly, so many people have NO idea what medical parenting actually looks like. I wrote more about the things no one tells you in Medical Mom Truths: What You Need to Know—because this life comes with a whole different rulebook.
So, what’s it actually like raising a medically complex child? Here’s the real, unfiltered version—the hard stuff, the emotional gut punches, and what actually helps.
The Unexpected Challenges of Raising a Medically Complex Child
1. Insurance & Paperwork: A Full-Time Job You Don’t Get Paid For
There should be a crash course in medical insurance when you leave the hospital with a child who has complex medical needs. But nope, instead, you just get baptized by fire, left to figure out the maze of approvals, denials, and surprise bills that make no sense.
I once spent days filling out a Social Security Income (SSI) application. DAYS. Only to have a caseworker tell me, “You wasted your time and the government’s. Your son will never qualify.” Oh, and she added, “The government actually did you a favor even looking into his disability status.”
So that was fun. The takeaway? Not every program is worth your time, and not every system is set up to actually help. If you’re a medical parent, ask other parents where to focus your energy before wasting hours (or days) on an application that leads nowhere.
2. Therapy Over “Fun” Activities
While other kids are off at swimming lessons, music class, or soccer, we’re doing therapy. We spend so much time in appointments that by the time the day is over, I’m completely drained—physically, mentally, and emotionally.
And let’s be real: even if I had an open evening, I wouldn’t have the energy to add one more thing to our schedule. Sometimes, therapy is the “extracurricular,” and that’s okay.
The Emotional Side of Parenting a Child with Complex Medical Needs
1. Watching My Twins Grow at Different Speeds
Having twins has made my son’s cerebral palsy even more obvious as they get older. It’s not like when they were babies, where development happens at different paces anyway. Now, one is running in circles, climbing everything, and getting into trouble, while the other is working so hard to meet milestones that most parents don’t even think twice about.
It’s really hard sometimes. I catch myself comparing, and then I have to snap out of it.
What helps? I stop and play with him. Then, I think about where he was a year ago. And without fail, I tear up—because he’s made SO much progress. That’s what matters. Not the timeline, not what his brother is doing, but how far he’s come.
2. That “I’m Not Doing Enough” Feeling (And Why It’s a Liar)
Oh, the constant guilt. Am I doing enough therapy? Enough research? Enough advocating?
Honestly? Probably. But it never feels like it.
The only reason I can shut that voice up is because I have incredible therapists who remind me that I’m doing everything I can and more. If you don’t have people in your life who say that to you, go find them. We all need someone to tell us, “You’re doing enough.”
3. The Day I Realized I Actually Knew More Than The Doctors
I used to feel like I was just along for the ride—that the doctors and specialists knew way more than I did about my child’s needs. Then, one day in the ER, I pushed for an X-ray when they told me everything was fine.
Guess what? Everything was NOT fine. My son was admitted immediately for an emergency procedure. If I had just gone home like they suggested, it could have been really bad.
That was the moment I realized: I know my child better than anyone. I walked out of that hospital knowing that from now on, I will trust myself first.
What Actually Helps (And What I Wish Someone Had Told Me Sooner)
That said, staying on top of appointments, paperwork, and endless medical tasks is a whole different challenge. If you feel like you’re constantly playing catch-up, trying to remember when your kid’s next therapy session is, or just want a way to reset and get ahead of the chaos, check out The Medical Mom Reset Workbook.
This workbook gives you simple but effective tools to track medical info, appointments, and therapy goals without the stress—because let’s be real, we already have enough on our plates.
Final Thoughts: If You’re a Medical Parent, Read This.
💡 You’re not doing it wrong.
💡 You don’t have to be perfect.
💡 You know your child best.
💡 Find people who remind you that you’re doing enough.
💡 And for the love of all things holy, invest in a good carpet cleaner.
Feeling overwhelmed trying to manage everything? You don’t have to do it all in your head (or on a million sticky notes that disappear the second you need them).
The Medical Mom Reset Workbook helps moms like us—moms juggling appointments, therapies, and a mountain of paperwork while trying to keep life running smoothly.
If you’re ready to take control of the chaos (without spending hours figuring it all out on your own), grab your copy here: Medical Mom Reset Workbook.
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