The Power to Change a Life...
To Birth a Dream...
To Find a Poet...
"Out of the overflow of the heart, the mouth speaketh" Luke 6:45. Streaming from the emotional depths of the broken hearts of parents that have lost their little ones come their words. Or from the families unfortunate enough to have to watch their child now as they cling to their young lives, come the words that can hardly be expressed. They are those that reach us with their stories. Emotions that give birth to the words that leave an emotional branding on me. My task then to recycle my own emotions back into more words that come full circle again and become a story, a story in a blog.
So challenging to process all this. No wonder it has been over five weeks since I have written. This has been my longest stretch between blog updates. Nevertheless the story must be told. I confess it has been very difficult for me this time to return to my writing as what I am seeing, what my family is seeing is so much more than just "stories". We have been witness to some of the extremely intimate and private pain of families who have recently or are currently experiencing all that we did with Jesse.
"Non-fatal drowning" was an expression I don't recall ever using even once in my life until it happened to Jesse. But the awareness of it's cruel reality in our midst has now become too painful and too obvious to ignore. I guess we see it all the time in the news where human tragedy brings people together sometimes in the most personal way. It's in the answering of an urgent call for help. We hear the appeals and requests for aid whether it be thousands devasted by a natural disaster or a single child gone missing or hurt. Some hear it as a request. Others hear it as "a Call".
I remember when Jesse was at his most critical and fragile state. Jesse's mom Kristin, Bonnie and myself had labored over a question that seemed impossible to answer. Our souls were wrung out to the core but an answer needed to come. It was time, actually it was days past the time that Jesse's life support needed to be removed. The threat of infection was looming in the coming days if it wasn't removed immediately. The question before us was the DNR. For the uninitiated among us the DNR stands for the "Do Not Resuscitate" order. It was waiting for our signature if we decided on it. What was our decision? Would Jesse expire when it was removed? Would he survive, breathing on his own? If he was failing to survive the extubation did we want the hospital to do what ever they deemed necessary to continue his life? They demanded an answer. On the heels of this question was another...Did we wish to donate Jesse's organs so another child's life could be saved?
Our minds were being ripped apart by visions of Jesse's beautiful little body being cut into to harvest his major organs against the ability to possibly see another child given a second chance at life. It had been almost two weeks since Jesse survived his drowning and in that time we had lived in an environment with a complete absence of encouragement. A dark blanket of hopelessness had been thrown over us by the best medical minds this country had to offer. The hopes and dreams, and wishes and plans we had had for Jesse just a couple of weeks before of his wonderful future life growing up as an amazing addition to our family had all been shredded by one fateful moment in a pond and two weeks of down cast eyes in white coats and scrubs reverently milling around his hospital bed.
We knew that God had created Jesse. Jesse had really been his all along, just lent to us as all our children are. We don't own our kids, but they are given to us their care givers for as long as they will have us. We believed then as we do now. God knows best. He knows the future. Our faith in God and his Christ is not unique but it's a faith that starts at a different source, takes a different course and ends with a different conclusion.
We made the choice. We would trust God to do HIS will with Jesse and prayed that he would give us the grace to endure it. We have spent the majority of our lives trusting God and this was definitely not the time to abandon our faith. We unanimously decided to trust him once again. If he choose to take Jesse to Heaven, as hard as that would be we would accept it. If Jesse survived we would know without question that he had a purpose in mind for Jesse's life. Once life support was removed Jesse would need to pass from this life within 45 minutes for his organs to be viable for transplant, as beyond that time the depleted oxygen supply to those organs would have deemed them too damaged to transplant to the waiting recipient. For 45 minutes Jesse sputtering and gasping fought a great fight for each breath. Exactly 45 minutes later the door to the operation room swung open to our private waiting room and the medical staff emerged shaking their heads. Jesse had done it. With Gods help he had survived and won his right to a life.
I think it was at that moment our view of the horizon opened up and we caught a glimpse of a bigger picture. It wasn't yet a calling, but Jesse had set the stage. Eighteen months have now passed since Jesse set a new course for all our lives. Through these months thanks to the media exposure, the internet, and Gods orchestration of it all, families of non-fatal drowning and non traumatic brain injured children have been figuratively knocking on our door. From across the continent the stories have come by way of phone calls and email. A larger plan is becoming too obvious to ignore. I've often heard it said that man makes his plans but God charts his course. And a lighter bent on that same theme...If you want to make God laugh, tell him your plans! That's right, they are oftentimes too small and just too self centred. The point is Bonnie and I and Kristin too had drastically different plans for our futures than the life we are now living but we find no regret in this. We feel honored to be in a position to potentially be able to help so many families that are hurting the way we hurt.
So Baby Jesse and the Arrigo family are now looking at the dawning of a new chapter in our journey. The awareness of newly brain injured children and the blinding fog that enshrouds their families when this tragedy strikes calls out to us...DO SOMETHING! Make a change! Move forward in faith! Did you ever notice this? When you walk with your back to the light you are forever walking into a shadow, but when you turn and walk toward the light, the shadows all fall behind you. We're turning now toward a brighter light and to a higher road.
We've come through a very dark valley in our lives but for several months now it has been leading us to a much sunnier place up hill to a higher ground with a clearer and more distant view of the future. We can't yet see the mountain top but we are willing to steer a course in that direction. It is a journey that may need the strength of many hands and more wisdom than we now hold but as I began to relate at the beginning of this blog, we can't escape the impact and "the calling" of all the words of anguish, hopelessness and fear that have found their way to our ears over these past several months.
Drawing very simply on our experience and compassion our intention is to reach out to kids like Jesse in several ways that we believe will help to make their lives brighter and increase their potential for therapeutic success in rehabilitation. We remember too clearly the dark days of isolation and confusion we felt immediately after Jesse's near drowning, the absence of encouragement, counsel and direction from any source other than the prayers and love we felt from friends and loved ones. Our hope is to be more than a friend to those facing this kind of pain and also to be a resource from which to draw hope, encouragement and strength.
In addition we are seeking medical professionals who are willing to step forward into the shamefully under researched area of non traumatic brain injury. The broadly accepted thought among too many medical professionals that there is no hope of restoration for a severely injured brain is simply not acceptable, especially to those of us who are living with the challenge of rehabilitation. We have seen in Jesse and in others that the brain CAN change, it CAN improve and can experience the joy and love of family.
In addition we are looking forward to a redesign of our web site jessearrigo.com to better serve the families who are discovering Jesse and his story of recovery. Why? Some people ask. Why would you take on an endeavor like this? Life is already so busy. And this is very true however the joy we see in Jesse every day, the joy, the hope, happiness and simple contentment he experiences in his days must not be denied to the many other children who have joined the somewhat marginalized club that Jesse belongs to. Yes, a sort of "club" whose members have all suffered a brain injury and are bravely fighting their way back to a healthier life. And all the kids who we are able to help in their struggle we will know as heroic members of "Baby Jesse's Nevergiveup Club"...of brain injury survival, hope and recovery.
Thank you once again my friend for your interest and support. Please know that as always we look forward to your comments. As a matter of fact your comments are such a major factor in our encouragement to confidently face the challenges of tomorrow.