Easy as 1, 2, 3            

In my last entry I talked about the reasoning why my life took a sudden turn, well, not only my own but my wife as well. The welcoming of our premature daughter presented its own hurdles, and the information that she would be developmentally disabled as a result of that situation was something that hit us pretty hard as parents. When you have your first child on the way, you always think of what the future will be. How they will turn out, the things they will do, the type of parents you’ll be. One thing that rarely crosses your mind is what you’re going to do if faced with the proposition that raising your child will be challenging, and that they themselves will face challenges.

It certainly wasn’t something we thought about, well I can only speak for myself. My life wasn’t anything to write home about, and I always assumed that any children that I had would be able to face the world on the back of my situations, the work that I put into their life, and be able to do something that would put my life to shame. Not that I wasn’t happy, I just know that I’m not going to be winning any Nobel prizes any time soon, or coming across with the cure for cancer, and that’s ok with me, because maybe the work I was doing, was laying the groundwork so that my children could be the ones to do so. I assume it’s something that a fair bit of parents secretly hope as they go through their lives.

But when I learned that the chances of that happening were slim, it kind of lit a fire under me to do something more. More than my roofing job, and in doing so, maybe still find a way to make her life easier. As she came forward to her first birthday, we had already read a bunch of books when it came to raising a child with any form of disability. And as she neared her second birthday, we started to become aware of what challenges would be facing her. She had a slow reaction time to things, her grip strength wasn’t the best, but man did she ever love to play with toys. It was her favorite time of day.

By the time her third birthday rolled around, we had dedicated an entire room of our house to her toys. She would spend hours a day, playing with her favorites, and encircling her no so favorites around them so that they still felt included. It was through watching her personal playstyle, and a lot of forums on which other parents with disabilities had shared their own stories, that I began to think of what it was that I could do to not only help her, but ourselves, and maybe some other families as well. So I went to the drawing board, with her favorite toy in hand, and began to brainstorm.

The A, B, C’s            

You could say that my life turned around the day that my daughter was born. I’m sure it’s a saying that you hear from many parents across the world at any given time. Everyone talking about how different there life was the day that their child was born. How they learned to live and love something more than themselves. And while there is that existential part of it that affects every parent when it comes to welcoming their child into the world, myself and my wife faced a different situation. One that also affects many other parents out there, but isn’t the same instant joy and gratification that most people get to experience.

You see, our daughter was born six weeks premature, and barely made it out of her first twenty four hours. And while many people have dubbed her a fighter, or otherwise, we’re fairly certain it wasn’t a conscious decision. She fought, her body fought, and she made it through the most tumultuous times. The doctors and nurses at the hospital were the real heroes of the story, bringing her all the attention they could afford, continually checking up on her, checking vitals, making sure she was getting the necessary vitamins and minerals, and just keeping her going through the myriad of machines that were hooked up to her.

Myself and my wife were pretty scared through the whole ordeal, and it’s a pretty scary situation to be in when you don’t know whether or not your child will make it through another night. There was a lot of sleeplessness, sitting there beside her little incubator looking crib, and watching all these machines responsible for allowing her another breath. We felt helpless, there was so much we wanted to do, but there was nothing we could. So we sat and talked to her, and we shared the dreams we had for her, and prayed for the strength for all of us to endure. And slowly, over time, we did.

After the first few weeks inside the machines, she began to have her own movements, her own awareness. She could raise her arms and legs, and grab onto things with small and still weak hands, but she was making improvement. The eyes would stay open a little longer, and the cries would have a little more strength to them. We used to joke that we were the only parents out there who loved to hear our baby crying. But through it all, there was still something that seemed a little off. She was still a little, confused looking. And it can be easy to chalk that up to a baby seeing the world for the first time, but it was a little more than that. Which is when the doctor’s hit us with the news that her brain was underdeveloped. She would have some disadvantage growing up, such as learning and other things that required a lot of brain activity. It was part of what pushed us into our major changes.