Why My Medically Complex Child is Exactly What I Needed

I’d never heard the term “medically complex” before, but it is the best way to describe my son. We are still learning about everything going on with him. If you’d asked me a year ago how I would feel about having a child with medical issues, I would have said I’d be terrified. As much as I wish my little boy didn’t have to go through so much, there are so many reasons I am grateful for our situation.

Support

I feel like I have so much support. I expected to feel alone, but I have met some awesome people. I feel less alone now than I did when I had my first, healthy baby. My son has some awesome doctors, and I really enjoy his physical and speech therapy sessions. In fact, I even look forward to them a little.

When my baby was in the NICU, there were social workers who checked on us all the time. Admittedly, that scared me at first, but I found myself being able to confide in them. I’ve also become so much more aware of how many families have had babies in the NICU or children with feeding tubes or kids who go to therapy or specialists. It’s more common than I ever noticed before.

Confidence

I’ve always been “shy.” A lot of that has had to do with anxiety. I’ve always been terrified of talking on the phone and too scared to go new places by myself. Now I answer almost every phone call I get, and I get a lot. I’ve even made dozens of phone calls in a single day. I talk to who I need to talk to and go where I need to go. I’m typically a very self-conscious person, but having my son has changed that. I am willing to sound and look stupid. I ask silly questions. I do what I need to do.

More Relaxed

As hectic and crazy as life with a toddler and a seven month old with health issues is, I am more relaxed now. My son might be behind developmentally. He might be small for his age. But I am very aware of that. I have people helping me with that. It’s not my fault. I’m not doing anything wrong. In fact, I’m doing the best I can. I often feel overwhelmed, but I have good reason to be. I feel justified in being overwhelmed, and that makes me feel like I’m doing a pretty good job holding it together.

Letting Things Go

I’m learning to be okay not knowing everything. I’m a perfectionist with OCD. I like to have control. I like to plan. I’ve had to let a lot of that go. I had to take things one day at a time in the NICU. I was often frustrated because nobody could answer my questions. None of the doctors knew exactly what was wrong or why or what would happen next or when my baby would be able to go home. It made me very uneasy. I would ask the same questions of different doctors and nurses every day only to get guesses and hypotheticals.

I still hate not knowing. I don’t know what the future holds or what genetics or neurology might find out about my son. But I am learning to focus on what I do know and how things are going. Sometimes I don’t realize how much I don’t know until someone asks what is going on or why. It is what it is.

Empathy

This is huge for me. I hate to admit it, but I have been pretty judgmental in the past. When I became a mom, I started to see that things aren’t always as they appear. But after an early induction, emergency c-section, 39-day NICU stay, and tube-fed baby who sees multiple specialists, I have so much more understanding and sympathy for others. I don’t judge as harshly. There are so many things going on behind the scenes of everyone’s lives that we will never know about. Most people are doing everything they can to make the best of their situation. Who am I to say they are coping wrong?

Gratitude

Along with becoming more aware of other families with medically complex children has come gratitude. While I don’t know the full extent of what we will face with my son, every milestone he hits gives me hope that he will eventually outgrow his medical problems. Yet so many families I follow on social media have it so much harder than we do. I am grateful that my son is doing as well as he is. Plain and simple.

I’m also that much more excited about each and every milestone he hits. It’s exciting to see him doing so well. I notice things I didn’t with my first. Like him bringing his hands to midline, sucking his thumb, reaching to grab toys, and so many other things.

 

I’ve struggled a lot the last three years. A lot of that has had to do with postpartum depression and anxiety. That is finally getting better. I was determined to deal with it when I was pregnant this time around, but my son’s medical problems have made me that much more sure I need to take control of my life. I need to take care of myself to be able to handle everything he needs.

I feel stronger. I don’t mean that to sound high and mighty or anything. I have just faced things this year that I never thought I could face. I haven’t handled everything the best way possible, but I am surviving, learning, and trying. My experiences this year have changed my life.