The Emotional Impact of Having a Medically Complex Child

Baby in NICU Previously on this blog, I have written about our son, Owen, who was born with a multicystic kidney and tracheal esophageal fistula. Today, I’d like to write about how this medically complex child has impacted my psyche and perspective on life for better or for worse.

I did everything right, but it still went terribly wrong. Owen is our first child. I went into the pregnancy the healthiest I had ever been in my life: I was young-ish (I was 32), in shape, I took prenatal vitamins before I was even pregnant, I cut out the occasional beer that I would have on Fridays and I never smoked or did drugs. So, I was stunned to find out at my 20 week ultrasound that Owen had a birth defect: a multicystic kidney.

Despite intellectually knowing that it was just “bad luck” and that I didn’t cause the multicystic kidney, it was still hard not to wonder why and how this happened, and why me? Why him?! I couldn’t help but stew over all of the teen moms who accidentally get pregnant, get no prenatal care, eat Doritos for lunch and still manage to have a totally healthy baby.

Then, about 36 hours after he was born, he was diagnosed with tracheal esophageal fistula. I was shell-shocked. My brain shut down. I couldn’t even process what was happening. Part of that was from the Vicodin for my C-section, but part of it was from my brain simply being overwhelmed.

Thus, Owen spent the first month of his life in the NICU, had his major TEF repair when he was 5 days old and another surgery later that month because his esophagus closed up and had to be dilated. We’ve had that surgery three other times since, plus a week-long stay in the PICU with RSV, the flu and pneumonia (the trifecta!) and a stuck blueberry that had to be removed surgically. Plus, countless trips to the ER for various pneumonias. (These are just the high points.)

Worse Case Kate. Thus, my husband and I had a rough introduction to parenthood. (That is why there are 5 years between my children.) As a result, I am the mother who worries about everything. Not just the medical stuff, which OF COURSE I worry about, but my worry has spilled out into the world in general. Because of all of this, I feel like anything is possible –and not in a good way. I feel like sh*t can happen and it’s probably going to happen to me and my family. Thus, my husband has nick-named me “Worse Case Kate.” No matter what the situation, I can think of the worse case scenario. If we go out of town as a family, which is rare (I should do a post on the financial impact of a medically complex child), you better believe that I know where the nearest hospital is and where the nearest children’s hospital is.

You Don’t Tell Me “No.” Like many mothers of medically complex kids, I’ve had to become a pit bull for my child –not so much with his medical team, but with the insurance companies. Any mother would kill for her child, but you don’t want to face a mother whose child needs medical equipment that her insurance company won’t pay for. I fought for three years to get the Vest for my child. And, yes, he got it. I will dance your dance, insurance companies, and I will win no matter what it takes. I can get the letters, I can write my own letter, I can make the phone calls, I can follow-up with documentation, I can find people above you if you won’t listen to me. No problem. I can do it all day long. All. Day. Long.

That’s the down side. Here’s the up side.

Compassion is king. Being Owen’s mother has taught me a whole new level of compassion for people and to never assume that I know what someone is going through. Most people have no idea what we’ve been through. Even our closest friends and family who know the major events will never truly know the fear, sadness and anxiety that has all gone along with it.

I don’t take anything for granted. This kid has an appreciation for life that I have not seen in other children, except for other medically complex kids. Talk to any parent of a medically complex child, and they will tell you that these kids don’t take life for granted, that they are more sensitive than their peers, wise beyond their years and that they are more optimistic and quite simply, amazing. The grace with which Owen easily travels through life will serve him well.

No victory goes unnoticed. Despite his major respiratory problems, Owen loves to run. Ever since he could walk, he has been running everywhere. He started running 5Ks when he was 5. No kidding. I have finally stopped crying at the start and finish of every race, but every race is still a victory to me.

While I feel like I should say here, “Despite all this, I wouldn’t change a thing,” that’s a total lie. I do still wish Owen was born with two functioning kidneys, and his esophagus was connected to his stomach. The sad fact is, no child should ever have to endure what he has been through. So, if I still have to go though all of this sh*t, I will take what I can get and hope that I can be the mother that he needs me to be and become a better person because of it.

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