I have three medically complex kids. Twin three-year-old boys and a seven-year-old daughter. They are wonderful and amazing humans. Each an absolute individual with enough attitude and strength to put me to shame. Honestly, I want to be as cool as them someday.

But, I’m their parent and my view is probably biased. I have been constantly in their lives since birth and I can’t imagine my world without them. Their health issues are multifaceted and unique to each of them, making the complexities of our life more severe.

Side note: My kid’s names have been changed to protect them and to have some fun. Besides, my wife would never go for these names in real life and I can’t imagine why. Don’t judge my choices ;)

It’s Complicated

Leia

My daughter, Leia, has JIA(Juvenile Idiopathic Arthritis). JIA Is a debilitating autoimmune condition where inflammation begins to affect areas of the body. In her case, this means her eyes and joints.

She is at constant risk of developing glaucoma that can lead to blindness. Her joints have not been heavily affected yet, however, it is likely to develop significantly in the next few months.

Finn and Han

The twins were born at twenty-four weeks, leading to unique developmental issues. If you have had a baby that is premature you understand. If not, let me put it this way, while they are three years old in age, they are almost identical to your average two-year-old in both physical and mental development. And on top of that, they have their own issues from their traumatic world entering experiences.

One of my twins, Han, had such a hard time breathing on his own that he almost died immediately after birth. Respiratory issues are common in premature babies, but his inability to function was much worse than average. He now suffers from CLD(Chronic Lung Disease).

This has led to him being extremely susceptible to the flu and other common viruses. But the difference is that anything he contracts puts him right back in the hospital, where he spent the first four months of his life. He pretty much quits breathing anytime he catches anything.

It may be hard to imagine, but my other twin, Finn, is much worse off. After their birth, he developed NEC(Necrotizing Enterocolitis). NEC is an intestinal disease that causes tissues death and perforation in the intestines. Long story short, he has lost over two-thirds of his small intestine and is likely to lose more in the coming years.

This means that he is unable to support himself nutritionally. Eating is not enough, he has to be supplemented with intravenous nutrition in order to grow and thrive. You know those people in hospitals that walk around with the IV pole? That is my son 24/7.

Perhaps you didn't intend to go to medical school when reading this post? Too bad. I didn't intend to be teaching people about unusual medical conditions that plague my children for the rest of my life either.

So now you know. This is my family and I love the f*cking hell out of them.

It’s Hard

Having three medically complex kids changes the way you live life. We do things that other parents laugh at. We wipe down everything. We carry hand sanitizer in our pockets and dispense it to our kids every few minutes. We Lysol wipe everything before we touch it.

We sound and look paranoid and often insane, but it keeps our kids out of the hospital.

We look strange when we go to the park. Finn is attached to a backpack with fluid running into a port on his chest. We carry large industrial cans of emergency oxygen with us, in case Han has trouble breathing. Leia can’t play on some things at the park, because the impact can further damage her joints. This means that my wife and I are running around more than the kids, chasing them to ensure their safety.

During the winter, Finn and Han hardly ever leave the house because the chance of catching a disease or virus is so high. We live for the summer. We can’t wait until it warms up and most infectious bugs go on vacation. But during the winter we have to find ways for our kids to enjoy being trapped in a house for months at a time. It's like we are in a doomsday bunker and need a new game to play because we are all sick of checkers by now.

Side note again: My kids are highly susceptible to diseases and viruses. And they cause long-term damage to their health. Vaccinate yourself and your kids. Its called herd immunity. Come on, people!

My wife and I have had to sacrifice our dreams and ambitions beyond our kids. Dream jobs, destination vacations, our dating life, our sex life. Even five minutes alone is hard to find because Finn’s IV pump goes off and then Leia’s eyes start getting blurry and Han starts turning blue.

And none of this includes normal kid stuff, because they have that too. Throwing fits, screaming, crying, not wanting what's for dinner, not wanting to go to bed, etc. I’m sorry if I have convinced you to never have kids, that was never my point. However, I can see how you got there.

Things like this, and more, is why life is hard with medically complex kids. But they are still so f*cking amazing.

It’s Worth It

Yeah, it is hard. And it is absolutely insanely complicated. But that doesn't stop any of it from being worth it.

Kids are amazing. If I was diagnosed with half of what they had I would crumble and fall apart. Kids have a way of stepping out of their issues and just being small humans that enjoy life.

Finn has endured more abdominal pain than most people will ever know, but nobody can smile like him. Nobody is going to take away his happiness and love for life.

Leia is relentless in her love for people and has little time to slow down and consider her health issues. She wants to eliminate inequalities for women and girls globally and she is obsessed with climate reform. She is more in tune with the needs of the world then I will ever be.

Han is running and playing and embracing life even when it is hard to breathe. Nothing is going to slow him down. I spend much of my day chasing him and watching him explore his curiosity for the things of life.

They are living life in the best way they know how. Their fragile health doesn't slow them down from being themselves. It should be the same for the rest of us. And for my wife and I, we can keep going through it all knowing that it is worth it for them.

Your life is worth it too

The issues of my daily life may seem extreme and honestly, they kind of are. But you can relate. No matter what your hard situations are, they are just as valid as mine.

Sometimes people apologize to me for sharing their hardship, because they think that their issues must be less than what my family goes through. I tell them that, pain and hardship is relative to your situation. It is no less valid than mine.

Nothing can minimize your life circumstances. I didn’t tell you this story to prove to you how much harder my life is, I told you so that you could see the good in our lives despite all the hardship. Embrace the good in your life. It makes it worth it.