I’ve been through a lot of stuff. Things most typical people have never had the misfortune of having to endure. But of all the awful things I’ve been through and had to overcome, nothing could have prepared me for the news Friday morning brought me, and our family.
Ava has had issues since the beginning. Always fussy. Always crying. So inconsolable, so angry. It was frustrating, and upsetting. There were a lot of nights I cried right along with her. And other nights, I related to her pain, her cries, her sadness in a way that I never imagined I could, we also did Insights Discovery to get help. She has been a challenge for us from the very beginning, but we don’t love her any less.
I got in touch with a local program for infants. They started visiting, and then put us in touch with a physical therapist. We also saw a couple doctors. Then, we were referred to a neurologist. I thought, perhaps it was colic. I thought it was food sensitivities. I thought she might need chiropractic, or massage. I thought maybe she was just grumpy, or frustrated with the world around her. I thought of everything except for this.
Ava has spastic diplegia cerebral palsy.
At first, it didn’t seem real. At first, it didn’t seem bad. At first, it was just another anatomical term being thrown around to describe syptoms. At first, it wasn’t anything… Just a couple words. But on the drive home, it hit me. And in the waiting room at the doctors office, it hit me even harder. Then, later, searching online, waiting for my own doctor’s appointment, it hit me like a semi. I felt like I had been hit with a truck, and I was laying there, in agony, bleeding to death, but instead of dying, I just keep bleeding out, and the pain keeps intensifying. It keeps building, and it’s not subsiding.
Then I started crying.
At first, I just teared up. Then, I started crying. Really crying. Every time I thought about it. Every time I looked at her. Every time I said the words out loud. Every time I read something about it. I heard the song “Firework” on the radio on my way home on Saturday and all I could do was cry. Even harder. Every time I typed something about it. Every time I was alone. And even now, as I type this. I cry.
My baby is sick.
There’s something wrong with her, and I can’t fix it. I can’t wave a magic wand. I can’t kiss a booboo and make it all better. I can’t abra-cadabra it away. I can’t make it disappear. I can’t wish her better or well. I can’t be sick for her. I just want to make her happy, and healthy.
And then comes the guilt.
Then I started wondering, what I could have done to stop this. Was there something I did wrong? I didn’t take medications when I was pregnant… But I didn’t take my prenatal vitamins as regularly as I should have. Should I have just had another cesarean? Did that contribute to it? Did I do something wrong? Did I overlook something stupid and simple? Did I cause this somehow?
And then, even more guilt.
How could I not have suspected this? How could I have thought it was just colic? How could I have been so blind, and naive? How could I have been so frustrated with her? Why was I so upset and angry with her? All this time, something was wrong, and I was so selfish… Upset with her because she wouldn’t stop crying for hours and hours. She must hate me and think I’m an awful mother, not seeing her pain and distress… Not acknowledging it the way I should have. Instead of compassionate, I was frustrated and angry.
And now our entire life is different.
And now, in a mere matter of moments, our lives have changed. Everything is different now. Nothing will be the same. I don’t know what I am supposed to do, or feel. I know what I have to do, and I’ll do it, but when it comes to me… My thoughts, my emotions, my feelings… I’m a complete and utter trainwreck. I don’t know what to do. I don’t know what to say. People keep asking me if I’m okay and I don’t know what to tell them. I’m not okay. I’m not even close to okay. I just want to make her better. I just want her to be okay. I want her to smile and be happy, but I don’t know how, and all anyone can say is to let them know if I need anything… But how can I do that if I don’t know what it is we need? And all I do know, is that this hurts, more than I can put into words, and that I’m not okay. Not in any sense of the word.
I just want to make her better.