It is hard to believe that my son will be five this fall. Joseph was born at 24 weeks gestation and is a survivor twin. His twin brother, Campbell, passed away after 23 days of life. Joseph spent 228 days in the NICU before coming home.
Joseph still has lots of specialists and by default, lots of appointments. When sitting in waiting rooms at his appointments, I often see other parents of preemies – parents who have just brought their child home from the NICU. I’m not sure what it is. I don’t know if it is the expression on their face – the look of fear, the look of worry, the look of relief that their child is home, the look of lack of sleep. There is just a look.
They don’t wear a sign that says “parent of preemie” and they don’t say a word. I just know when I see them glancing nervously around the waiting room anxiously waiting to hear their child’s name.
I am not one to normally go out of my way to speak to someone in a waiting room. It seems that a lot of people want to stay in their own space and not be bothered. I respect that and stay to myself.
If I could say something to the parent who looks terrified that their baby is home, I would say this:
“I once had that look on my face. The look of fear, pride, anxiousness, and nervousness all wrapped into one. For all I know, I still have that look! I was once in your shoes. I was bringing to Joseph to his appointments fearful of picking up a random germ that might land him in the hospital. Fearful of a new diagnosis. Scared the doctor would give me bad news. Afraid of the future. Terrified of the unknowns.
I get it. I have walked in your shoes.
I want you to know there is a support system – a support system of parents who ‘get it.’ A system of parents who have gone to all of the appointments, read the results of evaluations, spent early morning hours figuring out how to pay the bills, worrying if insurance is going to cover the latest round of tests, praying you make it through the week without an emergency room visit, wondering what the future holds for your child, spending hours on the phone trying to schedule follow up visits. I get it.
If there is one piece of advice I could give you, it is this: enjoy each moment. Yes, I know. This is easier said than done. It’s hard to enjoy every moment when life is full of stress and sleepless nights right now. You are rushing to get to the next appointment. You are making sure you have all of your medical supplies stashed in your emergency bag. You are worried and anxious.
It is so easy to get caught up in the ‘what ifs’ and the ‘what should be’s and the ‘what could have beens’ that we forget to live our life. We forget about the life being lived right in front of us. Is your life exactly as you thought it would be? Probably not but enjoy it. Savor it. Bask in every second. Love every smile, every time your eyes lock with your child.
You are amazing. You are strong. You are resilient. You have a whole support system of people who have paved the way and are cheering you on. You are loved.”