When you find out that you’re having a child with a wide range of congenital birth defects, you ready yourself as much as you can. You Google information; you join Facebook groups; you reach out to other parents in the same situation. You pick out the best baby items, realizing your baby won’t use said items for at least a few weeks after birth. You go on NICU and PICU tours, carefully analyzing each piece of equipment your child might need. You meet doctors, surgeons, nurses, ultrasound technicians – the whole gamut of the medical profession. You explain to family and friends that they may not be able to meet the new baby right away; the doctor will need to give the okay for visitors to stop by, and even then, it can only be a maximum of four people in the room at one time.
What you don’t prepare for is the guilt that accompanies mourning the loss of “normalcy.”
In my mind, Rowan would be born. He’d have his congenital diaphragmatic hernia repair. He might have the hole in his heart closed. Then, voila! We would come home with no hiccups on the journey. My husband and I would argue over whether Rowan sleeps in his pack n play or in our bed. We would take walks outside in the nice spring weather. We would take turns feeding Rowan, whether I pumped or breastfed or formula fed. Rowan would just smile and take it all in. And we would be one big happy family.
That, however, was not our reality.
What’s the saying from the Esurance commercial? “That’s not how this works. That’s not how any of this works.” That scene played in my head on repeat, like a broken record, this entire past year.
The first time I ever held Rowan in my arms was when he was one week old. I didn’t even get to hold him right after I delivered him. They wheeled him away in a transport bed for newborns.
I couldn’t breastfeed Rowan because his congenital birth defects caused him to need to be intubated. So I had to pump. My pumping journey stressed me out and caused some of my postpartum anxiety.
Rowan would overwork himself and tire out from trying to eat from a bottle. We would “tube” the rest of the formula down his NG tube, and eventually through his G-tube.
These “Esurance” moments were devastating to a person who wanted to meticulously plan out every detail of every thing in life. I hated feeling guilty for wanting to be “normal”. I knew our son had overcome some pretty life-threatening congenital birth defects, and he was a fighter for all of that. But, still. I would look at him and have feelings of sadness overcome me. This is not what I pictured. This is not how I pictured it.
But after this journey of hospitalizations, surgeries, and therapies, I’ve learned it’s okay to grieve the loss of what you THOUGHT you would have. It doesn’t make you a terrible person. It doesn’t mean you don’t love your child. It just means you have a new “normal” now.
We have celebrated so many victories. More than the average parent might think of. Yes, we had first words, and his first time pulling up to standing, and his first wobbly steps. But we also had celebration of learning to eat, a big deal for a child like Rowan. We celebrated each new food. Then we had days where he didn’t have a tube feeding because he was able to eat all by himself. These moments have been so gratifying.
What we have gained has been unimaginably wonderful. What we have grieved, we have come to terms with. To those parents starting a journey with a child with congenital birth defects or an otherwise medically complex child- it’s okay to have those feelings of sadness. Try to let go of the guilt. On the flip side, it’s more than okay to get absolutely silly and giddy with excitement about milestones that may seem minor to others. You have to define your “normal” and love it.