Your Love Demands It

October 9, 2013



That question has challenged our family through at least a couple of tense changes. Oh I don't mean tense as in stressful or anxious. I mean tense as in past, present and future tenses.  From the moment of Jesse's accident the question was already languishing just behind our conscious mind, "how WILL we know which way to go?" For a considerable part of this journey however we have asked ourselves, "how DO we know which way to go? And I believe that one day we will look back on these days and be able to ask ourselves, "how DID we know?"


It is the same question being asked by the many families that have been in touch with us over the past sixteen months.  I remember the feeling. It was worse, much worse than coming to a fork in the road as often happens to us in life and having to decide on a direction.  When a child aquires a brain injury such as Jesse did there is no fork in the road.  It is more like a dark forest. It is really a wilderness experience. There are no signs, no directions, no guide posts.  No, there is no road at all.  It is a groping in the dark for knowledge and understanding.  It is the challenge of lay people suddenly and without prior notice being thrown into the world of complex medical crisis, where all the individuals that are so unceremoniously forced into your life are all but speaking another language, using words and terms that you have never heard before. They are explaining all the various parts of the human brain, what it can do and what it can't. What you can expect which in Jesse's case was his certain passing, and what you cannot expect, which was that he would never have a life worth living.


This is a very abstract position to be in but if I can encourage anyone who is in a similar position right now I believe there is a great light that will point the way. 



is a greater compass than all the medical specialists in the world. Let's face it, if they are telling you, or maybe I should say WHEN they tell you that there is no hope for your child your love will search a hundred times longer and a thousand levels deeper than any specialist to find the road to help your child.  I wish I could say that every child that acquires a brain injury survives, but I cannot. Every injury is unique. I have never heard a prognosis that was good by any stretch of the imagination, but many children do survive.  Jesse is one that did!


Not only has our love and commitment to Jesse helped to reveal to us what would be best for him, but Jesse himself has shown us the way. The brain is such a complex and brilliant masterpiece of creation that as the months have passed we continually see different things coming to the surface in Jesse. It's kind of like watching any group of toddlers as they develop. One walks at 12 or 13 months, another walks at 8 months. One child talks early, another starts late. One happily toilet trains, another steadfastly resists and on it goes.  Yet eventually by the time they're grown they are all talking, walking, having shed their diapers, riding bikes and eating Macdonald's Happy Meals.


Jesse is currently experimenting with a host of sounds. At random times he will just open up with a compilation of all his sounds that goes on for ten seconds or so or until he runs out of breath..."Aaaeeehhhaaooohhyyyuuuu!!!  We love it. We know his brain has gotten the idea lately that he can express himself with his voice.  He is finding it fun to play with.  He has learned now that he can initiate a response from us and that in his own way, he can participate in the conversation. So there it is...he's holding up a sign that says "Follow Me!" Talk to me. Engage me in conversation. I have something to express, so we turn down that road and follow what is currently connecting in his brain. And what happens when we do?




Besides our love that finds the way to bring our children back and in addition to they themselves showing us which course to follow next, there is one other way of finding the answer to the question "how do we know which way to go?"  It is profound, but profoundly simple if you believe, and it's all about faith. You see faith sees the invisible, believes the incredible, and receives the impossible. Life follows faith like night follows day. Doubt sees the obstacles; faith sees the way. Doubt sees the darkest night; faith sees the day. Doubt dreads to take a step; faith soars on high. Doubt questions who believes; faith answers, "I"!

That my be a little too poetic for your personal literary taste but in our experience our faith in God and trusting in his leading cannot be separated from our story as it unfolds around Jesse. We are so honored to share Jesse's experience with whomever it might help.


The fact is we find we can never get complacent about Jesse's care and condition for even a day.  Every day is a building block to tomorrow. You might have noticed yourself, in life nothing stays the same.  If things aren't getting better they are getting worse and that seems to be a kind of law that rings true with just about everything. If your savings account is not beefing up it is most likely draining. Your relationship with your friend or partner is getting closer or more distant.  You are getting healthier each day or your health is slipping more each day. Everything seems to be on a kind of teeter-totter. Back and forth these things go, never stagnating but always changing, either for the good or the bad.  Our challenge for Jesse is to keep him moving in a developmentally positive direction, never stagnating, never turning back, always moving forward.


I normally write this blog about every two weeks however it has been a month since I was last able to sit down and write.  We have had a nasty head and chest cold in our house for a couple of weeks now, one that just keeps sitting on the fence wondering if it should turn into a flu or not but in any case it has definitely been having it's way with us.  Jesse is the only one of us that has not been sick although he did approach it for a couple of days and it couldn't have happened at a worse time for him. One Saturday afternoon a couple of weeks ago Jesse's G-tube slide out of his stomach.  The G-tube is a little tube that runs into his stomach giving us an access point for his formula, his water and his meds.  It has a little flip cap on the outside of his body and a little balloon that inflates with 4 mils of sterile water inside the wall of his stomach that keeps it from sliding out.  On that Saturday afternoon though for some reason the balloon sprung a leak and emptied at which point some slight brush against the cap just pulled it right out.


We of course immediately called the medical suppliers for a replacement G-tube. You would normally go to the hospital to have it changed but Kristin has learned how to change them herself and we were all anxious to get the new one put in.  The problem was that all the suppliers were closed on the weekends.  Jesse who is used to getting three feeds a day and several injections of his medications had to go through the rest of Saturday, and all of Sunday before we could finally get down to Sick Kids hospital on Monday to have the procedure taken care of.  As it normally goes even though it was regarded as an emergency, it was 5:00 in the afternoon before they could finally get it in. In the meantime Jesse was put on intravenous to bring his electrolytes back up and water to rehydrate him. The poor little guy went two full days with no food, water or meds, and he did it all while fighting a virus. We know that if we as adults would have experienced the same situation the worst that would have happened is that we would have become even grumpier than we normally are, but with Jesse it quickly became an emergency. It took him a few days to bounce back but bounce he did and we're back to our therapy protocol again.


We know there will probably be many more minor emergencies such as that in the future but God willing we will slay those dragons one at a time.  So take courage you parents of sick or injured children.

And remember if the medical box you currently find yourself in is not giving you the answers that satisfy you, be brave, advocate for your child and look outside the box.


We believe you will find a way. After all, your love demands it!


Bob Arrigo

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