The Best (Unwanted) Advice from the NICU

January 8, 2016

We had been in the NICU for just a couple of weeks when a nurse stopped me in the bay just near my son’s bed.

“I’m Chris. I’m the charge nurse.” she said. I don’t remember my response. It was probably as polite as I could muster, but considering the circumstances, certainly not overly friendly. Shortly into the conversation she disclosed that she had a fourteen-year-old son with Down syndrome. It was at that point in our conversation I let my guard down and allowed the tears I had been holding back to leak out. And she grabbed my hand and said, “It’s all in his time. Always in his time.”

It wasn’t the advice I wanted to hear because my most pressing issue at that point was that my son wasn’t eating by mouth. He was in fact aspirating and showing no signs of being able to eat anytime soon. His time was not my time. We were only two weeks in and already getting pressure to start considering going home on a feeding tube. On top of that we were dealing what we later learned were the beginning stages of him going septic. He was very sick. Absolutely nothing was happening on my time and I doubted whether or not we would ever be able to take him outside of the walls of the hospital.

But the way Chris looked into my eyes that day, I sensed that she was giving me an important message that I needed to file away. I needed to remember what she told me.

It’s all in his time.  Always in his time.

It’s been two and a half years since we were living in that hospital between the 2nd floor nesting wing and the 8th floor NICU. We are less in crisis and grieving mode now, but Chris’ words have recently been a welcome wisdom for me.

Over the last couple of years my son has been making some good progress. He’s showing us that he is capable of some things that we didn’t expect at this point, albeit not eating by mouth. He is walking short distances with a walker. Crawling like a boss. Grabbing his favorite toys. And making grunts or primitive signs to request things. He even says “Ma-ma.” I should be pretty ecstatic about those developments he’s made “in his time” for crying out loud. And as happy as it does make me to hear his weak high-pitched voice call for me, there is still so much not happening.

When I begin to focus on all the things he isn’t doing, I hear Chris’ voice in my head saying, It’s all in his time. As I allow her words of wisdom to become louder and more deeply rooted in my heart, the annoying voices telling me to give him more therapy, push him harder, and work more intentionally with him are shushed. Her words not only soothe my guilt over what he’s not doing, and what I could be doing to help him accomplish more, they also help me to accept and enjoy him for who he is and where he’s at developmentally right now.

Within the world of special needs parents, advanced medical care, and therapy strategies, the objective is almost always to transform your kid into a more highly functioning individual. And I do desperately want progress and development, but not for the sake of not fully loving and enjoying him along the way.

The funny thing is that on those days when we skip therapy for the sake of doing normal things–like going to the library or the children’s museum–my little boy is doing his very own version of therapy. It’s therapy that’s in his way, in his time. Therapy that is fun for me to watch and enjoy.

I’m discovering we’re all a little happier when we let him do things all in his time.

thinkerytherapy unwanted advice NICU

Therapy at the Thinkery, our local Children’s Museum.