A recent conversation left me thinking about the power of perspective. While at a child’s birthday party with my daughter, a dear friend asked me how Jack is doing. Jack is my 12 year old son who has severe autism, developmental delay and cerebral palsy. I got excited to answer her question. “He is good!” I said. Gosh it felt great to finally say it. For the past five years when people asked me about Jack I would stop and think for a moment. Do I give them the real answer or the easy one? What can this person handle hearing? Will I be able to answer without crying? Will it make the moment awkward if I answer honestly? Needless to say the past five years have been hard. Jack’s regression and pain seemed to have no end. But lately things are looking up. He seems happy. He isn’t hitting himself as much. The look of pain on his face has lessened. His mind seems calmer, allowing him to enjoy things that once brought him joy. We are happy. So, on this day, my answer is “he is good”. My friend was visibly excited to hear my answer. I could see a look of relief on her face. I am sure she was expecting the same uneasy answer she got the last ten times. And by the way, I love her dearly for continuing to ask despite the undesirable answers. As I drove my daughter home from the party I replayed the conversation in my mind. And then it hit me. Wait, was Jack really doing good? Who on earth says their 12 year old son is doing “good” when he is still in diapers with no understanding or interest in being toilet trained? Who says their preteen is doing good when he doesn’t have any friends his age, can’t read, walk or go to a public place without having a sensory meltdown? Who says their almost teenager is good when his favorite characters are Barney and Bob the Builder? Have I lost my mind? Have the last five years completely warped my gauge of good versus bad? Have I lost touch with all that is “normal”? Am I giving up on my goal of him catching up with typical kids and being able to function independently? Maybe the answer is yes. I’m pretty sure it is. But what does it matter? And whose to say what normal is anyway? Come spend a day with Jack and while all that is normal and typical go out the window, his laugh and absurd noises will bring you joy you have ever known before. And then I dive back into my brain. Am I in some strange phase of denial? An alternate universe? Maybe so. But that's ok. It has to be ok. When it comes down to it I see I have two choices. I can allow the answer to her question to be good, our good. I can continue to celebrate the days when he wakes up laughing at God knows what instead of hitting himself in the head. I can continue to live in our strange, beautiful and sometimes tragic universe and soak up all it has to offer. I can let it change me, warp me, teach me and make me into a person I’ve never known until now or I can curl up in a ball and be sad about all the ways that Jack is not like other 12 year old boys. I can live every day one minute at a time and be thankful for the happy moments or I can worry my days away about the future, what will happen to him when we are gone and wonder if he will be cared for and loved. Of course those worries will always lurk in my mind and I will mourn and be sad from time to time, but today, I am choosing to celebrate our version of good. Those long, sleepless, heartbreaking days have made the happy ones so much happier. Years in a dark place make a tiny glimpse of sunshine so much brighter. That is the power of perspective and I am learning that it is fierce and strong. As the years go by and I settle into this unusual world, it feels more and more like home. Our home, Jack’s home. Day by day I am able to let go of the things I once mourned about Jack’s life. I have
let go of the typical childhood I thought was necessary for him to be happy. His is anything but typical but happiness is happiness no matter how it is achieved. Other boys are playing baseball and video games with friends. Jack is bouncing with glee on his bed at the sound of me vacuuming his room for the 10th time that day (his favorite activity). So here is my takeaway. It’s ok if our good is different than other people’s good. It’s even ok if our good is someone else’s worst nightmare. It’s ours and right now, today, this minute, I am choosing to be thankful for it. So yes, my friend, Jack is doing good.