You know sometimes when you’re driving and you look at the car next to you and someone is crying, and you feel bad for them, but you try to imagine what’s happened. A break up? A death? Did something awful just happen or maybe they’re tears of joy? If you had seen us turn out of the hospital today, you may have wondered the same about me as I stared out the window, blinking back tears.
We were back at Sunnybrook for a follow-up appointment, and I have to admit I was nervous going in. It’s nice being back at the place that birthed all three of my gorgeous children and seeing the nurses in HRO who took care of me for so long, as well as the NICU nurses and doctors who watched over our girls, is so nice.
But, after our pediatrician told me point blank Ella was behind Raegan, I was scared what would come when the specialists took a microscope to her.
Both girls need more tummy time, but Ella is going to need more specialized care, including home visits and a referral to an orthopedic surgeon. Surgery is not for sure, but her hip movements are worrisome, and her right side is struggling, most likely since her brain damage was on the left.
People are always asking me about going back to work, and when I say I have to see about Ella, they often don’t understand. I don’t think many truly get that we almost lost her, that she almost didn’t make it, and I mean, she doesn’t look sick, it’s only when you pay close attention that you notice that she doesn’t wiggle her toes. Of course, I had noticed certain things, but when they’re pointed out to you, you feel dumb for not realizing what it meant.
I think I believed that if I willed her to be better, she would be. Yah, she had a bad ultrasound, but I told myself it didn’t mean anything. When she was sick, I mantra’d she’s not going to die, she’s not going to die 1000 times until she was better. So, I kept saying she’d be ok, and even though I knew the probabilities, I really thought I could make her better with love.
My sweet girl smiles and laughs, has rolled over, and sucks her thumb. I am always so enthralled with her and happy with how she’s doing, that I just keep hoping and willing her to get better. I can only hope that all of the exercises and appointments will make her stronger, and I get to tell her as she gets older how much of a fighter she is.
It applies for all children, but I think when you have a preemie you really understand what it means to hope your child has a happy and healthy life, which does not necessarily mean with all the abilities or possibilities you had dreamed of. The Parent Coordinator at Sunnybrook told me once that most important to her was that her daughter was happy and alive. That’s my reality check for everything because those are the real end goals.
In truth, we are all limited by genetics and the circumstances of our birth (my odds of being a fighter pilot or winning a marathon or being crowned Miss Universe were pretty much zero from day one). There are still a million paths I could take to live a life of happiness and wellness. Hopefully the extra care Ella receives will keep as many doors open as possible for her, but she has what every child needs to achieve as much as she can and be happy: the love and support of her family. (Unfortunately, something else we learned from the NICU is not every child has a healthy and enabling home life, so I don’t discount the value of this.)
I know you’ll continue to be watchful and concerned about her development, but don’t forget that when Ella smiles she is happy, so let yourself be happy with her in those moments because that’s ultimately what we all want for our children.