Today is Wishful Wednesday and that means that I’ve been sitting here thinking of wishes, listening to my heart. What’s on my heart today is the struggle we all face as Modified Mamas. The struggle to be the same people we were before our kids were diagnosed. That struggle, that pulling at your very being, is so damaging to our psyches. Most people don’t get it, they don’t understand what it’s like to be us. But I do. I know what you’re going through. I’m there with you.
For me, it was the not knowing what was going on with my son that drove me crazy. Every test they came up with, knowing I’d have to sit and wait for weeks, months on end to finally get a result just made me so out of my mind with worry. That’s when the anxiety started. Every time the phone rang, I had a sinking feeling. That feeling where your heart drops down to your stomach and you feel like the rug has been pulled right out from under your feet and you’re turned topsy-turvy. The despair in your heart when you hear the nurses voice on the other end of the line telling you that there still aren’t any answers other than negative-or maybe you got a positive result on something that you were hoping wasn’t the case. Ours were all negatives, until they ran out of things to test him for and it became a blanket diagnosis of cerebral palsy. The frustration you feel when you don’t know what to do for your child, and he can’t tell you what he needs. I still feel that when Jamie’s sick or in pain. The fact that he’s non-verbal is enough to send me over the edge on days like that.
I keep remembering the ambulance rides, the ER visits, the ICU stays, the regular hospital stays, surgeries, recovery rooms, doctor appointments, blood tests upon blood tests, MRI scans, sleep studies, breathing treatments, IV antibiotics, pharmacy trips, chest x-rays, shots, and seizures. Febrile seizures that went on for minutes at a time. How scared we were when he’d stop breathing and turn blue. The CPR we administered a few times. Nobody really understands what that’s like until they’ve been through it with their own child. When you’ve looked at your child and known that they may pass from this earth and there’s not a damn thing you can do about it, then you’ll know what it’s like to be one of us. When you’ve eaten so much hospital food that it actually starts to taste pretty good, you’ll get it. When you’ve called 911 so many times that the dispatcher recognizes your voice, you’ll know you’ve made it to the club. When you’ve watched your child go under anesthesia and weren’t sure if you’d see him come out again, you’ll be one of us.
But the point of all of this is, Joel and I have come out the other side. For now, we’re content with Jamie’s health and his development. I honestly could care less if he ever learns where Russia is on a map, but he’s learning to read and write his name. And he’s learning his numbers and addition and subtraction. These are huge things for a child that doctors didn’t think would do much of anything. This is not to say that he doesn’t have off days, where he slides backwards a little every now and then. But for the most part, he’s doing things the educators didn’t think possible. With an IQ of only 51 (don’t even get me started on how they can test the IQ on a child who is non-verbal), he’s doing amazing things. We never gave up hope. We never will. It’s become our family motto. I have so many things around our house that have the word “hope” on them. I even have a tattoo that is for my mom and my son that says “hope”.
So, today, I’m wishing each of you hope. I wish that you will know what it’s like to never give up on the dreams you have for your children even though you may have to modify your dreams and goals for them. When I was pregnant with Jamie, I had hoped he’d be a sporty kid. One who would play soccer and football. Or baseball or be a racecar driver like his dad. But those things aren’t going to happen like I had dreamed. He plays baseball on the Miracle League, and he has a blast! We’ve made so many great friends through the League.
It isn’t exactly as I’d hoped, but my hopes have changed and evolved into what Jamie can achieve. Mostly, I hope he’s happy. And you know what? He is.