Lost In Summer

It has been a long time...maybe the longest since I have written to you all last.

This blog has meant many different things to me over the past seven years, in fact, it has taken as many different manifestations as its subject matter, Leo the little lion! Not so little anymore, in a couple weeks he will be seven years old. 

And so will this blog! 

It is amazing to think back to the frightening beginning of it all, and to realize that never in a hundred years could I have pictured myself now, sitting and typing this post at my sunny kitchen table, in my own house, while the early morning sounds trickle in from the open porch door and mingle with the voices of my children in the other room. Not one child, as we all thought seven years ago, but two. 

Seven years ago, Leo was not going to live to his first birthday.

He was not going to be able to talk sweetly to his big sister, as I hear him doing right now. Though I'm sitting in the other room, I can picture them both clearly; his sister, legs bent under her and perched right at the edge of the big couch surrounded by art supplies, books, and paper, multitasking as always, listening to the morning cartoon rather than watching it as she draws and paints. Leo, his bum wedged into the sweet spot where the two big cushions meet and create a little squishy dent, his legs stretched out in front all knees and angles in his little summer shorts, one hand gripping the ever present stuffed seahorse by the tail, the other one reaching out every so often to gently pat his sister on the arm as he watches the screen and comments on what he sees. Once in a while he will yell out, "Mom! Mama! It's OK, I'm fine!" If I forget to ask him, he will reassure me, because a long period of silence from him means he's probably having a seizure, and makes me stop whatever I'm doing around the house, grab the nearest VNS stimulator magnet and sprint to where ever he is. Sometimes, (when there is company over) this has caused some comedy, as I appear in the middle of a quiet and peaceful moment, eyes wild, brandishing a huge magnet and ready to administer emergency medicine only to find a roomful of startled people and no seizures whatsoever.

Seven years ago, Leo was a really sick baby. His head blown up with fluid, unable to move or even breathe if positioned incorrectly, everyone around fearing that each breath would be his last. After shunt surgery, after the reconstructive surgery that almost killed him and at the same time gave him new life, after the endless procedures and scans; Leo is a kid who is unlike any other. He is a mutant bionic marvel of modern medicine. An example of just how far medicine can go in altering the future of a human being. We are all used to hearing about the horror stories and the millions of different ways western medicine has us in a headlock. It is a conundrum of gigantic proportions, how our human talent has created the miracles and the nightmares both. For me with Leo, the nightmares were triggered by ignorance and assumptions, and many of the miracles went by unnoticed, overshadowed by the mechanisms of the survival reflex. Now, I can look back in time, without the stress of immediacy, and with the knowledge gained slowly, sometimes painfully, over the years to make a little sense out of the past.

Sometimes reexamining the past is a pointless activity, only serving to create dissatisfaction with the present, but sometimes, in the right situations, understanding the past can heal the present and fortify the future. Talk to any parent of a recently seriously diagnosed child, and the one thing they want to know is how. How something of such earth shaking magnitude could have happened, and have happened to them specifically. They quickly find out that there is no answer to this question, and to many other questions that arise in consequence. This profound realization of ignorance and uncertainty is what often traumatizes new parents and generates resentment and bitterness that slowly grows over time into a heavy shell of armor. This self constructed armor is what keeps us pinned to the ground, unable to fly, and suffocating slowly from the squeeze on our heart. Only knowledge, patience, and forgiveness can ultimately crack the armor off...

Hearing the news recently, I am saddened by the rising trend of inhumanity surrounding us. So many people with such grievous hurts that their armor (literal armor too) is bullet proof, and so thick that neither reason or compassion can penetrate. The smarter our innovations get, the more ignorant we become. 

In the beginning, this blog was just a vehicle of news; a way to keep friends and family informed on the latest happenings in Leo's saga. Eventually, it became more of a therapeutic exercise for me, the act of putting my thoughts and feelings into words, creating a measure of healing and peace.  I realized that without this safe depository of the "happenings" many issues would have remained hidden to me. The process of writing helped to shed light and bring into revealing substance the transparent thoughts, hurts, and fears. Once fully aware of them, I felt able to deal and dispense forever their troubling influences. 

Lately, I haven't needed this so much. Perhaps it is a good sign, a sign that the hidden pot on my mental back burner has stopped simmering quite as hotly as before! However, this does mean that the blog doesn't get as many posts as before, since thankfully, there have been no huge developments in Leo's health. Therefore I have had more time to think about advocacy and awareness, and how this blog is once again transforming into something new. There is a rising need for knowledge, a demand for empathy and respect in a social environment which doesn't foster them. Moments of crisis can bring out the very worst in humanity, especially where there is a lack of understanding. When a whole society accepts the elimination of a whole race, we have a very serious problem: one that stems less from politics or ideology, but rather from a lack of emotional understanding and a profound empathic disconnection. When a European country has all but eradicated the possibility of a birth of a baby with Downs Syndrome, we need to open our eyes to that fall-out, even if the event has happened on the other side of the ocean. Our world has become so global, so instantaneous, that every rock thrown into the water, is felt not just in the immediate space, but absolutely everywhere. What happens when there will be no more babies born alive with congenital disorders? What will happen when adults with mental and developmental handicaps are considered  undesirable and unnecessary for society? With every new life-saving technology and with every new innovation to help achieve human happiness, the more unhappy we all become, and the less we are able to deal with true adversity and hardship.

When parents choose to destroy a child based on the knowledge given to them by the doctors of a presupposed future of unhappiness and suffering, not just the parents will feel the effects, but all of humanity. Is happiness all we Americans base our decisions and actions upon? Is that the yard-stick used to measure the worth of human life? I believe that there is value in suffering, in sickness, in differences and in imperfection. None of us can see the future, none of us can truly see what paths humanity will take, but we can, in knowledge of love, lift each other up during hard times. Without that, the future would be grim indeed.

Because of Leo's relative stability in the past year, I have made the big leap (for me it's huge) and enrolled in an allied health degree program. Leo's dropped me smack into the middle of the medical world, and though I've been keeping my head above the water so far, I've decided to just go ahead and learn to surf the waves. I have no idea what will actually come of this, but what I do know is that I like learning stuff. This kinda stuff especially!
Here is a film I created for my Bioethics final. This class brought to the surface many things that though I have accepted, I did not fully comprehend. I've decided to share this movie here, because I hope that someday that this blog, Leo, our ups and downs, our challenges and triumphs could help somebody in a crisis feel less alone, less confused, and perhaps less scared of the future.

As a parent, I long for a world in which my children will be safe, and a world where they can fulfill their dreams, whatever they may be. I also wish for a world that can teach my children the importance of respect and empathy for all, but most of all, I wish for a world where acceptance of differences, limitations, suffering and sickness, is not to be feared or ignored. We all will suffer, and we will all face sickness, no matter how much we pretend otherwise. It is not a question of if we will suffer, it is only a question of when and more importantly how. I pray that it is with peace, grace, and courage, no matter what.