The road with Jackson so far has been long, but as I was talking with a friend the other day I realized something – I feel like we have come to a point of acceptance in our journey that we didn’t have at this time last year. Sure, my husband and I have always been a pair who seemed to take things in stride, facing each of Jackson’s daily battles head on, but compared to where we were at this time last year, our ability to ‘accept’ the set backs and simply move on is exponentially better. This is Jackson – it’s who he is and our job now is to help him be the best Jackson he can be.
That doesn’t mean it gets easier, though.
Yesterday, we received the written results of Jackson’s neuropsychology evaluation. This is done as part of the cochlear implant process and gives the doctors another piece of the puzzle in recommending or not recommending implants. Implants are only as good as they can be used, so an ability to learn and family involvement in that process is a huge deciding factor in the recommendation. Thankfully, Jackson was given the go-ahead and, though we have very realistic expectations, we are hoping that they will be a great option for us.
The evaluation write up included everything from the doctor’s observations (‘Jackson is a HAPPY baby’ uh, duh) to medical recommendations (‘continue with PT and OT’ – no way!?), as well as past test results, many of which we had been read but had not officially seen. There, in black and white, was a description of Jackson from the inside out, a written picture of his brain from his most recent MRI.
‘Small in size’. ‘Abnormal white matter’. ‘Abnormal shape’.
Problem, problem, problem.
We have always known that Jackson has a number of abnormal structures in and damage to his brain – this is nothing new – but seeing it there, in writing, hit me hard. For some reason, seeing the challenges listed clearly and plainly in front of me took my breath away. I quickly took to googling (bad choice) and researching every piece of information I could, getting more and more frustrated as I couldn’t find the information I wanted – what does this mean for the future?
Zach noticed how upset I was becoming.
“Breathe”, he told me. “He’s fine.” And, you know what? He’s right. Jackson is fine – he’s more than fine. He’s a happy, bubbly kid who surprises us every day with his ability to adapt and take his life in stride.
But that doesn’t make it easier.
We’ve received a lot of ‘bad news’ when it comes to Jackson. Over the past 15 months, we’ve grown accustomed to hearing the challenges and hardships we may face as Jackson grows up. And, each time, it stings just a little. But, you know what? That’s okay. Feeling the sting isn’t a bad thing. It means you’re human – someone you love has just been dealt a rough hand and their path ahead won’t be the easiest. You know what is a bad thing, though?
Living in the sting.
It’s okay for it to not be easy. And it’s okay to feel the twinge of pain that comes along with receiving bad news. But when we decide to live there, to stay in the pain and let it overwhelm our daily life, that is when it becomes a problem. No amount of moping or feeling sorry for myself will change the structure of Jackson’s brain. No amount of worry or doubt will make his body into something it’s not.
So what do we do instead? Embrace the sting, acknowledge the fact that Jackson will have a tough road, and move on. Everyday we find something new that he can do; a new skill that many didn’t think would be possible. And everyday we find something new that we can do, too; something we can do to help, be it therapy, appointments, or simply a positive attitude and time spent giving him the life he deserves.
No one ever said this life would be simple. And, I can tell you from experience, getting the ‘bad news’ doesn’t get easier. Instead, we get stronger, learning how to embrace the sting and move on. And, today, that’s exactly what we’re going to do.