Being the medical mom of a medically complex child comes with its own set of challenges. I’ve had to learn a lot in a short amount of time – from how to manage my child’s medications to how to advocate for their needs. It’s been a steep learning curve, but I’m grateful for the lessons I’ve learned along the way. Here are just a few of the things I’ve learned as a medical mom.
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What I’ve Learned as a Medical Mom
In 2015, we brought a beautiful little girl into our home, and we completed our adoption a year later. When we completed our adoption, we knew that our sweet Phoebe was medically complex, but we really thought we were only dealing with issues we had seen before like feeding tubes, central lines, suction, etc.
Even though our sweet Phoebe is labeled medically fragile due to her various diagnoses, I thought we were well prepared to care for her having given birth to a fragile baby 11 years ago. There was still plenty to learn about Phoebe and her care, but the most valuable lessons I have learned have been about myself.
I have always been a strong willed mom. When our older daughter, Lily, spent most of her first two years in hospitals, doctor’s office and therapy centers, I did the vast majority of her care by myself. Phoebe’s medical situation is definitely more complex than Lily’s was, but I still thought I could handle it mostly on my own. This was not so. I learned quickly that I am not superwoman.
Medical Mom’s Need Help Too
When we find ourselves caring for a medically complex child, the temptation as a mom is to own it all. We try to be the ones to do “all the things.” Being a medical mom is one of the hardest jobs out there. Not only do you have to care for your medically complex or fragile child, but you also have to deal with doctors and hospitals on a regular basis. It can be easy to feel like you’re never doing enough, and it’s easy to feel like you’re always at the breaking point. But it’s important to remember that you’re not alone. There are other medical moms out there who understand what you’re going through, and there are people who are willing to help. So if you’re feeling overwhelmed, don’t hesitate to reach out for help. You deserve it.
Self Care is Critical for Medical Moms
It is impossible to take care of someone else if you aren’t taking care of yourself first. Make sure to schedule time for yourself – even if it’s just 30 minutes a day to do something that you enjoy without stress or obligations. You need time to recharge so that you can be the best possible version of yourself for your child.
I never thought much of the idea of “me time.” As a mom, my children and their needs have always come first. Only recently did I come face to face with the fact that I must care for myself if I am to care for my family.
After a year of constantly running between appointments, juggling homeschooling and church responsibilities, I found myself physically at rock bottom. I hate to admit it, but there were days when I didn’t even get a shower. I went nights without sleeping. I ate only what I could quickly grab and eat on the go. Prioritize some necessary self-care so you do not find yourself in this place.
You are not alone.
There are millions of other medical moms out there who know exactly what you are going through. You can find them on social media, in support groups, or even just by reaching out to your child’s doctors and specialists. There is no shame in asking for help or admitting that you need someone to talk to. We are all in this together.
Your medically complex child is still your child.
Just because your child has medical complexities does not mean that they are any less of a kid than any other kid. They still want to play and have fun and be loved just like every other kid. It can be easy to get so caught up in the medical aspects of their life that you forget the most important thing – they are still kids at heart.
You are the advocate for your child.
One of the most important lessons I’ve learned is how to advocate for my child both inside and outside the hospital setting. There have been many times when I’ve had to fight for my child to get the care they need, whether it’s getting them seen by a specialist or getting insurance approval for a new medication. It hasn’t always been easy, but I’ve learned that it’s important to be persistent and advocacy for your child even when it feels like no one is listening. You are your child’s best advocate, so never give up fighting for what they need!
You will quickly learn that being a medical mom means being an advocate for your child. You will have to fight for everything from treatments to therapies to insurance coverage. It can be exhausting, but it is so important. Your child deserves the best possible care, and it is up to you to make sure they get it.
Strengthening Your Faith will Strengthen You
I have always known that there is no area of my life about which God is not concerned. I have always prayed faithfully for my daughters, and all of my children. However, I have realized over the past few months that neglecting bible reading, bible study, daily worship and prayer have taken their toll on me. The spiritual man must be fed if he is to be strong.
I never expected to be a medical mom. I never expected my child to have multiple chronic illnesses and need daily medication just to stay alive. But here I am, and I have learned some things along the way. These are things that I wish someone had told me when I first started this journey. Maybe they would have made the road a little easier, or at least given me some peace of mind knowing that I wasn’t alone.
No one ever said that being a medical mom was easy, but it is definitely worth it. Parents of medically complex children have to learn a lot beyond the basics of how to take care of their kids medical needs, how tp communicate with doctors and other medical staff. They have to learn how to navigate the new world of being a medical parent. It isn’t always easy but these parents do whatever it takes for their children.