Embracing the Unexpected When Parenting Medically Complex Children

My kids have a collection of conditions. Our most prominent conditions being cancer, hydrocephalus, cerebral palsy and extreme prematurity. At least those are the ones that seem the biggest in this moment.

When one (or more) of your children receives a diagnosis, the natural instinct is to start reading and researching. You want to be familiar with this beast that just plopped down in front of you and won’t move. You may even join an online parenting group to find out the things your research may not tell you.

For me, I thought I sought out online groups to learn more. But almost immediately, my questions and motives switched gears. I wanted to know I was not alone. Some of those diagnoses came unexpectedly and knocked me down. Others were suspected, at least a little bit. I’m an excellent Dr. Googler. Regardless of how the news hits, it’s isolating. I spent some time in my head, which for me is not a good place. I need people. I need to talk or type through the fears and questions, and find the people who could give me real answers, advice and validation. Those online communities became my lifeline in the early days.

I also found those groups so I could ask the questions I see a lot of newly diagnosed families ask. What does this mean? What will our lives look like? I wanted to know to prepare, but I also needed hope. I ultimately wanted to read that with time this would be footnote, and my children would grow and have typical lives.

Honestly, after the first year with the twins when the hits just kept coming, I recognized and accepted that our lives would never be typical.

It’s OK to Not Be a “Success” Story
I here to tell you, our lives did not pan out the way I wanted or expected. But our lives are wonderful.

For the preemie parents: we did not make it home before our due date. We didn’t make it out without medical equipment. The NICU wasn’t the end of our scary days.

Our micro preemies left the NICU at 162 days old and 177 days old — that’s nearly six months. Before going home they had a combined five surgeries. One came home on oxygen. Before their first birthday, they had five readmissions and five more surgeries. Currently they are 3 and have added six more surgeries and eight more admissions.

If you saw them in public, it’s likely you would not guess they are 3. They often are thought of as younger, and less often thought of as twins.

For the hydrocephalus parents: at age 3, our son has undergone four shunt surgeries. We still are concerned about his head growth, his ventricle size and shunt failure. We’ve been through one failure and one malfunction — they didn’t present the same way. I’m never sure if a stomach bug is just a bug or the first sign of a shunt issue. I don’t know if I’ll ever be sure. The only thing I know with any certainty is for my son, needing another brain surgery is most likely just a matter of time.

For the cerebral palsy parents: I don’t know what the long-term future looks like for my son. In the beginning I wanted to know he would walk and be able to play with his siblings. Earlier this month he received his first wheelchair. Will he always be in a chair? It’s anyone’s guess right now. But for now this is what he needs.

For the record, he loves his chair. He has always enjoyed being with his siblings. His siblings look out for him and I hope he doesn’t feel excluded or left behind. My goals for him are to be as independent as he can possibly be and live a happy, full life — however that looks.

For the cancer parents: Late last year, a second child of ours was diagnosed with cancer. There aren’t as many second-time cancer moms, but we are around. I’d like to tell you it’s easier the second time, and while some things are, in general it still is hell. Cancer is an unpredictable monster and this second time for us has been more involved and dramatic than the first time. We’ll get through, but it was not something we ever anticipated happening again. Apparently, there is no family cancer quota.

Life Has and Will Go On
Our lives continue to go on. Our children are growing. Our children are happy, at least they appear to be happy. Our children are loved. Our children are thriving despite their multiple health challenges.

I’ve reached a point in my life where I will never say we are done with hospitals. Our story moves like chapters in a series of novels. Our story will never be over, it will just pick up and move on in some unexpected way.

I will never announce to the world our children are living typical lives, fully recovered from whatever fresh hell they have experienced. And that is OK. This is our story.

Basically, it’s OK to come out on the other end and not be OK. It’s OK to not be typical. Whatever your story, embrace it, love it and own it because it is yours.