Making It Make Sense

It occurred to me for the first time today while on the phone with a friend that I have rarely discussed any of the finer details of The Littlest Buddy here in this place, or about the pursuit of a diagnosis for why LB struggles in some areas. Cole discussed his verbal delays in a post to satisfy some curiosity that readers had expressed, but for the most part no specific attention has been given to the anxiety or stress we live under dealing with the uncertainty of not really knowing what has been keeping him silent and delayed. That is when I realized that I was a liar. I had not been writing honestly and candidly as the tagline in the header boasts about this place. Looking deeper it has not been a calculated omission as much as it has been an unconscious cling to hope that The Littlest Buddy will someday read these pages and find a source of great joy and understanding of our lives together, and how I have come to love him so deeply since meeting him. I realized that I have been protecting him. I didn’t want this to become a place of confusion, where he suddenly discovers that when he was a little boy there was something “wrong” with him. Or that Cole and I lived with a fear that he wasn’t “normal.” We love every inch of him, and that is what is being built here for him to find.

The Littlest Buddies delays are not discussed here, because they do not define him. For Cole and I, he is expressive and communicative and the greatest thing on our planet. You know him as we know him; his silence and sleep disturbances are a side story to the way he makes us light up everyday despite his challenges. People that read here, see him in pictures and read stories where the central theme is never about his daily struggles to communicate. His delays have always been viewed as a temporary thing, just a bump in the road of his very young life. LB being non-verbal always carried the blame for all of the spin-off frustrations and quirks that he possesses. So for us, the thought has always been that when LB finds his voice he will speed toward “normalcy” and fall into line with the other kids that scream and run in our neighborhood. We wonder if there will ever be a day when we are as thoughtless to blog about the “annoyances” of how he never shuts up and asks thousands of questions.

I felt like there needed to be an explanation so you could understand that Cole and I are not some pair of oblivious dummies sitting around crossing our fingers that nothing is wrong with LB and he will just magically talk one day. He has been put thru the medical ringer trying to pinpoint the culprit to his roadblocks, crossing off and ruling out countless possibilities along the way from Autism, to hearing loss, and always being told "they just aren't sure what is wrong exactly." Also on this pursuit and roller coaster ride is his Father and Stepmother. LB has a whole other family that love him gross amounts. Between the two homes LB has love and support on all fronts. We are his unconventional family, sick with love for him. He is the kid that has 4 parents standing behind him at a teachers meeting, and at the Doctor, fighting for him. In these ways, he is most certainly one of the luckiest boys I know. He is surrounded by adults who understand the value of setting aside differences for the greater good of a little boy who needs his family to be mature and logical and rational. So the pettiness of past does not interfere with the raising of this boy.

I had initially called my friend this morning as I was faced with being alone in the house for the first time and was plainly just trying not to freak the fuck out. I was suffering thru the realization that I have no coping mechanism for being sad. In the past I literally would drink myself into the ground. I would terrify myself with the near drowning of any reason or logic and always emerge spitting and gasping for a big breath of fresh new life. I just don’t know how to be sad in a “healthy” way.

When my father suffered a traumatic brain injury from a ladder fall I was the kid that was strong for my family and made clear-headed decisions. I studied intently in the hospital library so that I could ask better questions and understand our Doctors jargon. In private I was sobbing rivers away from them to preserve the illusion of strength and confidence that everything would be fine. I would emerge from around the corner, dry eyed and smiling and confident that everything was going to be just fine. In the end, my Mother caught up to this strength and became a champion to her husband and guarded him ferociously during his recovery. She was an unrelenting pain in the ass about procedure and detail. She would second-guess every decision, of any person that dared lay their fingers on my father. Some of you in the health profession might roll your eyes at this behavior upon reading that, and possibly have stories of patients loved ones being obsessive or annoying. But I have to tell you she was right more times then not, and prevented countless mishaps befalling my father. I mention this because I have her strength and fight in me to protect the ones I love, but I am not sure that I have her endurance.

Upon learning the news of LB’s diagnosis I found myself thinking of this time in my life with my father and how I handled myself. It was familiar in the way that this is now the second time that I have had to say goodbye to ideas and expectations of someone I love. Now although my father is alive and well, and loving, and he accomplished biblical miracles in his recovery that reduced his neurosurgeon to a jaw dropped moron as he strolled into her office, stood there in front of her, talking and casually joking, after driving himself to this appointment a year after she told us to kiss him goodbye. She had told us that at best he would be a low functioning vegetable. He did in fact recover... and to levels of gratefulness I could never write about. In the end, he was not the man that I remembered. Still a great man, possibly a better man, just not the same man. That might seem course and confusing at first, but without getting into detail about what we are dealing with in regards to LB let it be said, that nothing I am writing here can even begin to match what Cole is feeling. To put it into perspective you would need to find a way to imagine what it feels like within a brief phone call and a few words muttered of a syndrome, that all of the hopes and dreams you hold for the future of your child are suddenly snatched away from you.

A quick awkward phone call while Cole was at work was how the Doctors office delivered the news. She uttered unfamiliar words to Cole, she was cold, and crass, and this method should be reexamined, as it seems irresponsible and unethical. The Doctor let Cole know that they had a diagnosis; it was a name she had never heard of that would change all of our lives forever. When I started this I wasn’t sure what I was writing, I wasn’t sure if this was some kind of an “announcement” of a diagnosis and an explanation… and to be honest I am not sure what this is. I do know that this news doesn’t change how we love LB and so I’m not going to suddenly change the way I discuss him in this place. For us we have a rough road to navigate and I am sure the harder times like this one will end up as posts. I am ending this with the hope that this particular entry will be happily deleted someday before we let a healthy and happy grown ass boy sit down to read thru old stories of his life. It’s our job more then ever to protect LB and to continue building a safe and positive place for him to thrive in.

As I said before, when we know more about this diagnosis we will discuss it in an educated clear-headed way as it specifically pertains to him. For now it would come out as pages and pages of confusion and speculation and worry of what might happen down the road. LB is at no risk of a diminished life expectancy, he will just have a life where he will need his family to care of him for its entirety. It has been a diagnosis that required Cole and I to say goodbye to a future that we had dreamt and giggled about in bed, and we are settling into our new reality of the lives we will need to lead to ensure that LB has the best possible chances for independence and happiness. There isn’t anything that we wouldn’t do for him so it isn’t like we are making hard decisions, we are just coming to terms with a set of symptoms that are now attached to LB that we will never let define him.

So for now, just respect that we aren’t ready to discuss the ins and outs of what is going on just yet. This is good for now. I am going to try and get back to the swing of things soon. Thanks for reading, thanks for understanding, and thanks for not being all up our ass about what is going on. We will be fine. We are not living in doom and gloom. We are not the kind of assholes that give up and turn to sadness. So put your worries for us away, and the hope is that everyone in our lives will continue to treat us as they always have... because if they don't, we aren't interested in having you in it.

All the Love in the Universe ~ Ryan

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