I'm a medical mom to a son with VACTERL syndrome. Here's what I've learned in my son's 5 years so far.

• My son was born with four major congenital malformations and a condition I have never heard of.
• VACTERL association is so rare that I have only met one other child who has it.

I was laying on the table at my OB/GYN for my 20 week ultrasound appointment when the chatty tech suddenly became quiet. She slipped out of the room muttering some excuse, and brought in the doctor. I knew something wasn't right. I looked at my husband with my eyes wide and questioning. But there was nothing he could do but just stare back at me, equally as scared.

The doctor finally spoke. There was something off about our son's heart, but she couldn't tell exactly what. We went to see a pediatric cardiologist the next day, who confirmed our worst fears — there was something wrong, but the extent of how wrong would have to be monitored as he grew. So, we monitored.

Every scan with him in my belly and then after he was born seemed to make our own hearts pause as we waited for the results. But the news kept being "'OK for now, let's just keep an eye on it" for every appointment.

We thought maybe we got lucky. Maybe we could avoid surgery, and move on from this tiny blip of a nightmare. And then we got his diagnosis.

We noticed his body was crooked

At 6-months-old, my drooling, adorable squishy dude began to sit up and we realized he was extremely crooked.

We went to orthopedics, and the doctor ordered him to have an MRI. At the hospital I handed over my baby in a tiny hospital gown and grippy socks to a nurse, and bawled my eyes out. He went under full anesthesia, and I sat in the waiting room numb until I could hold him again.

The results were not good. We learned that in addition to his heart defect, he had four and a half extra vertebrates, a tethered spinal cord, and pretty intense kidney reflux. All things likely would have to be fixed by surgery.

He has VACTERL association

We were told he had something called VACTERL association — we had never heard of it before. It is basically a group of conditions that happen together, affecting the vertebrea, anus, cardiac anormalities, trachea, esophagus, renal anormalities, and limbs.

Only about one in 10,000 to 40,000 children a year are born with VACTERL according to the Children's Hospital of Philadelphia.

So with that, my husband and I leaned even harder into what we slowly were already becoming: medical parents. We assembled his team of specialists — a neurosurgeon, orthopedic surgeon, geneticist, urologist, otolaryngologist — and began tackling all his sweet malformations one by one.

Year after year we would walk our child through seemingly endless tests and procedures, major surgeries and hospital stays. And truthfully, it has broken our parents hearts again again. But we keep getting back up, we keep fighting, we keep learning, and we keep getting stronger.

He is now 5 and so brave and we have learned so much

My son is now 5 years old. If you saw him, you wouldn't know anything was different about him unless you saw the sweet little scars on his spine and hips from his surgeries. But he is different. His resilience, strength and bravery had to be honed, all before he even started kindergarten. And if you saw my husband and I, at classroom parties or roaming the halls of Target with our wild kids begging for toys, you also wouldn't think anything was different about us, but we are.

Having a child with medical needs changes you. It forces you to grow stronger — even if you do so kicking and screaming — because the only other option is to sink. And we can't do that when we are keeping a whole darn family afloat.

It doesn't get easier emotionally, but we have (mostly) gotten used to the waiting, worry, long treks to the hospital, and regular scans.

As parents, we have learned so much

We have learned tricks like micro-grieving, like giving yourself a whole day to just be really sad after bad news or a hard procedure, ordering pizza, and family snuggles.

We have learned there is power in community, and prayer. And some days, that might be the only thing getting you through, but it can be enough. Connecting with other families who "get it," or reaching out to our people to pray for us has been so important.

We have learned that no matter what big scary difficult season you have to walk through, you can still fight for tiny pockets of joy, if only grabbed onto through the tiny cracks of life. Late night kitchen dance parties or getting out of doge for a day to explore a new city and just be a normal, happy family. It might not look like big grand trips to Disney or exciting Instagram-worthy moments, but you can fight for the little bits of joy. They are there.

We are in a calm season now, medically, and I thank God for that. I know at any moment my son's sweet little body could give us another surprise. My parent heart will always be on guard for that. But for now, I will savor every moment of having a 5-year-old child whose only job is to be just that — a child.

Katie Schnack is the author of "Everything is (NOT) Fine: Finding Strength When Life Gets Annoyingly Difficult." Find more at www.katieschnack.com and on social @katieschnack.