Life can be pretty overwhelming when your precious child receives the diagnosis of hypoxic ischemic encephalopathy (HIE). Your hopes and dreams of motherhood shift, and your life is intensely focused on therapies, doctor appointments and research. You wonder how people are able not only to attend all of these appointments, but also manage to implement the slew of home programs that occupational, physical and speech therapists hand out. And what about actually having the time to enjoy motherhood?
The first 18 months of my son Max’s life were spent this way. I cried almost every single day during that time. I grieved the loss of control, the loss of what could have been, the rough start, the new normal we were forced into. I also made sure we attended every appointment, asked a multitude of questions, implemented every home program and researched every single mainstream and alternative treatment, no matter if they were applicable to my child or not. All in an effort to find to find a “fix.”
I was burned out. My husband was burned out. And, most of all, my child was burned out. Everything was about play with a purpose. Every moment from sun up to sun down.
How could we move forward and sustain this pace of life? Like so many, both parents have to work to make ends meet.
Around 18 months, somehow the fog started to lift. We were encouraged to take breaks from therapy. Our therapists saw we were drained. We took a family vacation. We learned more about who our son was. We set aside cerebral palsy (CP), vision issues and all the other diagnosis “stuff” and got to know Max, our child.
Recently, we took our child to a ballgame during physical therapy time, one of the four weekly sessions he attends. We didn’t do the usual Tuesday night grind of rushing from work to pick him up from preschool to outpatient physical therapy, shoving some sort of dinner at him afterwards or in the car.
We picked Max up early. We gathered our gear and played our favorite music on the way to the ballpark. We spent the evening on the carousel and Ferris wheel, ate “baseball food” in the stadium and laughed and loved like the family we always imagined.
We refilled our spirits. No doubt this refreshment will help give Max stronger focus and tenacity as he tackles his latest goals. It will help us as parents to power through IEP meetings. It will also give us moments to hold onto when things are hard. And it will help us to remember that above all diagnoses, we are a family, and Max is a little boy, not a medical chart.
Sometimes a kid has to be a kid, and you have to take a break from being the therapist and just be the parent.
So, to the new mom on the HIE journey with your child, I’m here to tell you this: Keep the faith. You will find that balance, too. Maybe not today or tomorrow, but you will. And you will cherish those times together in the big and small moments that make motherhood truly magical.
You got this. I believe in you. And you have a whole community of people who do, too.