Click on a book to purchase a Kindle version for only 99 cents!
(Temporary Price Cut - Through July)
(Includes our struggles with gluten free for my son in the hospital and in rehab.
Changes are needed - in a big way!)
Click on a book to purchase a Kindle version for only 99 cents!
(Temporary Price Cut - Through July)
My goal for 'Adam' and 'Hailey' is to help teachers, grandparents and other adults understand gluten free for our children who require this strict diet. Please share with your teacher friends, school nurses and anyone who could benefit a child with their understanding. Thank you
The Syrup Maze is the personal and inspirational story of my son's remarkable recovery from a serious auto accident and traumatic brain injury. While "gluten free" and celiac awareness are what I am so vocal about - it is my family that is everything to me. Shortly after initiating this website early in 2012, my family was faced with something I could have never imagined. And the strength and love that brought us all through this difficult time is what rose above all the pain and challenges.
(Includes our struggles with gluten free for my son in the hospital and in rehab.
Changes are needed - in a big way!)
I am currently seeking bloggers who would be interested in reading our story and sharing a review with your followers. The first several pages are available on Amazon. If intrigued enough to read it entirely and blog about it, please email me at email@example.com so I can send you a copy.
The Syrup Maze is the inspirational story of my son's recovery after an automobile accident and traumatic brain injury in February 2012. It is a story of hope and it is a story of strength. It is also my way of saying "thank you" to all the amazing angels in my son's life (in our family's lives) that made his recovery possible, from first responders, to the ER staff, ICU nurses, surgeons, therapists, and so many more!
This is not a story of "horrible things that can happen," but of the light that can shine through.
(Included are the struggles we faced with gluten free in the hospital and in rehab. Amazing surgeons, ICU nurse, staff and - drugs! But food?! Special diet?! They messed up more than once! Frightening.)
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I am offering the first two chapters of my new book, The Syrup Maze, below. And I'm giving away the ending - my son recovered. Completely. I wrote it because I had to. I wrote it to thank the MANY angels in his/our lives at that time. I wrote it to inspire. (And I included the struggles we faced (that any of us with special diets face) with gluten free in medical facilities. It is Celiac Awareness Month, after all. (SO hoping doctors and nurses read this.)
But mostly, this is an inspirational story. Complete recovery from a severe brain injury. The power of prayer. The power of family. The power of love.
1 THE DOORBELL
I don’t like roller coasters. Never did. But life itself is one giant roller coaster, isn’t it. Highs and lows. Moments in time. Feeling the wind and sun in your face with a view of the world one moment, and the breathless helplessness as you rush towards the ground the next.
Life – built on moments in time. The roller coaster doesn’t let you stay on top, but even at its lowest point it eventually, slowly, gradually, creeps back up.
It took only a moment. Roller coasters immediately plummeting downwards.
I hate roller coasters.
A moment in time, upon another, and another; moments I’m having a hard time letting go of. Or maybe I’m trying to hold onto them because it reminds me that I’m not at that scariest part of the roller coaster anymore, that part where you head straight down and have absolutely no control or way of stopping.
It was early morning, Sunday, February 19, 2012. Steve was getting out of bed. I looked at the clock. Not even 5:30. “What’s that?” I asked. “The doorbell,” he answered. I rolled over and for a split second thought, “Steve has it,” and then I reached for my robe and went downstairs. The door was open. A policeman. My memory here is not clear. I would not recognize that police officer if I saw him again. I’m sure he spoke in sentences, but I only heard fragments. “Michael.” “Parents?” “Accident.” He gave me a slip of paper with a telephone number; someone I was supposed to talk to at the hospital. The roller coaster was speeding at a rate I had never experienced and it was hard to breathe. The damn thing wouldn’t stop. I dialed the number. Again, no sentences. “Very serious.” “Someone to drive you?” “Very serious.” No other details were allowed.
I was only eight or nine years of age, but witnessing the mother of a Vietnam soldier during her worst nightmare is a sight I will never forget. A car pulled up in front of the house across the street. Two uniformed men got out. The sight of her circling her yard, over and over again, pulling her hair, crying “no, no, no……”
I was now this mom. I couldn’t stop. “No, no, no, no, no, no, no …..” I found a sweater, a pair of jeans. “No, no, no, no, no, no….” I grabbed some socks, shoes. “No, no, no, no, no, no …..” I couldn’t stop. “No, no, no, no ….”
The world stopped when Steve opened that door. It wasn’t more than minutes later when he was behind the wheel and I was getting into the passenger seat with my socks, shoes and phone in hand. Breathe. Pray. “God, please take care of my son.” Breathe, pray. It was so damn hard to breathe.
And now we were headed to the hospital. A thirty minute drive and I knew I had calls to make. His dad lives over four hours away. It wasn’t much past 5:30. I hoped he would pick up. He answered. How do I tell him about his son, knowing he had to spend the next several hours on the road? I spoke slowly, deliberately, factually. He and his wife were on their way shortly after hanging up. Now, his sisters. I dialed my son-in-law’s number, again grateful to have the phone answered. He too, just listened to direction.
Moments that followed became a sequence of a bad dream where you find yourself in a room or with another person, not knowing how you got there. Steve pulled up to the emergency entrance. I rushed through the doors, to the desk. “Where’s my son?” It all became such a blur. Did someone walk us back to him? Did they direct us to where he was? I don’t remember.
And then I saw him. He was lying on a table, doctors and nurses surrounding him. The room was filled with people in scrubs and masks. Be calm. I had to be calm, he might hear me. I needed to let him know I was there. Did I talk to him? I hope so; I don’t know. Did I touch him? I hope so; I don’t know. His eyebrows, neither completely attached, his head heavily wrapped, and a brace secured around his neck. Why was that tube in his mouth?! Machines. So damn many machines. Knuckles on both hands were raw and his right eye was the size of a purple golf ball. How long was I by his side? I don’t know. They kept doing things, working on him. I didn’t ask questions. No one offered answers.
I heard someone ask, “John Doe?” “Mother?” Then I saw it. His wristband. “John Doe.”
“His name is Michael! He has a name! Call him Michael! You have to call him by his name! Do you hear me?! His name is Michael!" Was that sadness I saw briefly in their eyes as they glanced at one another, or did they think I was crazy? Of course I was crazy. What mom wouldn’t be? Slight nods of reassurance as someone prepared a new wristband.
I stood there watching, hoping someone would wake me up. And Steve was there, by my side. My rock. There were no words to be said. He couldn’t tell me my son would be ok. He couldn’t tell me anything that would make it all go away. I was so glad he didn’t try. But I needed him there. I needed him more than ever. I needed him to hold me up.
Someone approached us, introduced us to a woman. Chaplain?! NO! I told her to go away. “I don’t need you! Please go away. I don’t need you. He’s going to be ok. I don’t need you!” She just stayed there, calm. She was so calm, assuring me that she was just going to stay with us. I kept begging her to “Please – go – away. I don’t need you. He’s going to be ok.” I wasn’t rejecting God. I needed Him desperately as I continued to ask Him to be with my son. I wasn’t rejecting guidance or reassurance. But I didn’t see her as someone who was brought to me for comfort or prayer. In my mind, at that time, I saw her only as someone sent to prepare me for my son’s death.
We were in a room, sitting with the chaplain. I don’t know how we got there. I don’t know what she said. I don’t know how long we were there. Did I talk to her? I was stuck in a horrible nightmare that took me from one space to another without allowing me to remember how I got from one room to the other or what the correct sequence of events was. I was back with Michael again. A doctor yelled to him, “Michael move your toes. Move your toes Michael.” A flicker of movement gave me reassurance within that he would be ok. “Michael! Move your fingers.” Directions were given. Slight responses. Very slight. Eyes remained closed.
My oldest daughter walked in. Was it a half hour after I arrived? Ten minutes? An hour? Her eyes were locked on her brother from the back of the room, tears instantly spilling out. I looked her in the eyes and said, “We’re not doing that in here.” She nodded slightly, understanding me, and then proceeded to talk to him as she dried her tears. “I love you Michael. We’re here.” She took my hand. I cannot remember the last time my daughter held my hand; probably twenty years. We stood together, watching as they continued to work on my son, her brother.
“Where’s Kayla?” They were supposed to pick her up. The instruction was to tell her in person. But she wasn’t home. She must have been at a friend’s, phone on silence. But she would want to be here. I didn’t want her to find out in a phone call and I didn’t want her to drive over alone. My kids are all so close. But I was beyond any ability to allow any other fear or worry in.
I found myself in the waiting room again, back in the ER, back in the waiting room. I had no idea how long I stayed in one place. There was no keeping track of time. Time had no meaning or purpose. And then I was told a police officer was there to speak with me. How could I feel more fear and panic? But I did. Our brains have this amazing ability to allow an incredible amount of thought in, in only a brief moment of time. During those micro-seconds between the opening of his mouth and the time the words actually came out, my thoughts included the fear that he would tell me Michael was to blame, that he had one too many drinks or misjudged a turn, or . . . ? I knew my son to be a very safe driver, but he was 22 and human, and humans make mistakes. Humans make bad choices.
My breath was held as he spoke. He told us what he knew. Another car rolled in front of my son’s as the result of an overcorrection after an angry passenger who wanted to fight another passenger allegedly grabbed the steering wheel. While Michael’s car was at a stop in the middle of the highway, after hitting that first car, another driver, a drunk driver who didn’t appear to have slowed down, hit his car from the rear. The impact was with such incredible force that my son was ejected out of his door, dents and injuries later signifying that the door had been shut, but now opened from the force of his body. In that instant, the reckless choices made by two individuals changed the lives of many. A single, avoidable instant.
Blood tests proved my son was sober. Sigh. I knew this, as Michael is always careful enough to spend the night at a friend’s or to have someone drive him if he intends to drink. But hearing the police officer tell me, “he had obviously been doing the right thing,” was a great relief. My son was lying in the ER, fighting for his life, and yet I felt relief. I couldn’t stand the thought of him having to face being responsible for such an accident and now I knew he wouldn’t have to.
But I was told he was ejected from his car. This didn’t make sense. I couldn’t wrap my head around it. He always wears his seatbelt. Why? How? And then he told us there was a passenger who was also ejected, a passenger who appeared to be in worse condition than my son and who was taken to another hospital. They were not sure he would survive. The assumption was that the second driver hit them just after they removed their seatbelts, and from the looks of the windshield, it also appeared that this occurred after the airbags had been deflated. It was because of the severity of injuries sustained by both boys that they were brought to separate hospitals, to give each the attention of a full ER team.
Time was a blur as we continued to move from the ER to the waiting room, and back to the ER again, over and over. A doctor met me in the hall with questions about Michael’s eyes. “Yes, he’s had eye surgeries,” I told him. And then I understood. Something clicked. I knew where he was going with his questioning. I started to talk faster. I needed to quickly clarify that his pupil was NOT dilated because of brain damage, rather the result of surgeries as a baby. He was born with something called Persistent Hyperplastic Primary Vitreous (PHPV) in his left eye. The lens in this eye was damaged, a cataract, basically, and had been removed as an infant. Scar tissue remained in that eye, as well as a folded retina. One of his surgeries included the removal of part of the iris, resulting in what appeared to be a permanently dilated pupil. He said that that explained some things, “but not everything.” I chose not to hear that last part. I let myself believe that this is what bothered him and that this clarification meant everything would be ok. Yes, he was still very concerned, but I pushed that look and those words aside in order to let the news I wanted to hear be the words that resonated in my thoughts.
We’d been at the hospital for a while when it hit me – Ashlie! Michael’s girlfriend. How could I have not remembered to contact her?! She was at school, three hours away, and if we had thought in time, Walt and Judy, Michael’s dad and step-mother, could have picked her up on their way. I surely did not want her to drive alone after receiving such news. Someone eventually told me that she had been contacted and was on her way.
Back and forth, back and forth I paced, from the room Michael was in, to the waiting room, then back to Michael. I couldn’t leave him alone, yet at times, it was too difficult to stay. An ophthalmologist came in to examine his eyes. Steve and I stood in the back of the room, watching. Minutes seemed to turn to hours. I could not stand it, absolutely could not stand it. Just tell me his eye is ok! I need to know. TELL ME! But I observed in silence. He hadn’t had vision out of his left eye since he was about four and we had to stop using the contact lens because the retina was folding and all our work to give that eye a chance was over. His right eye had been perfect, better than perfect. Please let it be ok. She just kept examining him. I had to leave. Steve stayed, once again my rock. I paced. I thought I was going to jump out of my skin. I went back. Still examining, so I left again. Seriously! How long? Tell me! And then, finally, an answer. “It does not appear to have long term damage.” And now I could breathe. I could breathe with such incredible relief. Fractured cheek. Scratched cornea. Things that heal. Another sigh. Small steps. One at a time.
I don’t know at what point Kayla arrived, but I was in the room with Michael and all of a sudden she was there. And the same strength I saw in her sister, I saw in Kay. She was fighting back tears but offering loving words and conversation with her brother as though he were awake and listening. And now that all my kids were together, I felt stronger.
We wandered back and forth from waiting room to the back of Michael’s room in the ER to stare and watch, and pray, in disbelief. And by mid morning, his dad and step-mom arrived. Walt went directly to the desk. Judy went directly to me, crying and embracing me in a hug I will never forget, both of us crying together. And then they went in to see Michael.
Eventually some in our group started to get hungry, naturally, and decided to seek food. We’d been there for hours. I ate a few gluten free crackers I had but didn’t want or need more. I was not leaving. I don’t know if they went together or in separate groups, but I knew they wouldn’t be gone long. Everyone left except for my son-in-law. My daughter asked him if he wanted to go with, but he declined. Was it so I wasn’t left alone? We sat in silence. And then the volcano started to erupt. There is strength in numbers, and with so many now gone, I was falling apart. Those I leaned on were gone and I started to lose control. My son-in-law moved from the seat across from me to the seat next to me and put his arm around me, letting me cry. Yes, I do believe he stayed there so I would not have to be alone. And I was so very, very grateful.
I knew I had to pull myself together. Distraction. I needed a distraction. A little boy of about four was running around the waiting room. It appeared that he was with his grandfather. He needed guidance and attention and I needed something else to focus on. So I sat with this boy and asked him to show me the toy he had. Or was it a video game? We became instant friends. Later, between his jaunts from one side of the room to the other, he occasionally stopped in our section of the waiting room to talk or to share some grapes. And he gave me opportunity to smile.
But the need to pace eventually returned. And soon everyone else was back in the waiting room. Ashlie arrived just past noon, and now all who loved Michael the most were there – waiting.
It was in the afternoon when I found myself in front of a physician with his entourage of students behind him. My words, “He’ll be ok,” gave him the need to clarify facts. The words that follow I find very hard to type because I find them difficult to say out loud. I could never even repeat exactly what he said because it was a jumble in my own mind. But he gave me a vision, a vision I absolutely could not bear. He tried to explain to me what happened when Michael was thrown from the car; to the brain when it suffers such an impact as when my son was thrown onto the pavement. The doctor offered a number, so many somethings per second, giving me the vision of Michael’s brain inside his skull bouncing back and forth, reverberating at a speed too fast to count. Yes, he shared information that offered this vision. And I stopped him. He couldn’t talk to me this way. This was my son, and I assured him again that, “He WILL be ok.” I will never forget what he told me next. “We are treating his body in case he wakes up.”
In case he wakes up? In case he wakes up?! NO! You have NO RIGHT saying those words to me! Other words I heard that day, “Recovery will be a very long road,” I could tolerate. “In case he wakes up” – not something this mom was prepared to hear.
But I had to share this with my family, this factual information that that doctor so bluntly presented. Everyone was out there, in the waiting room. So I shared that statement, as brutally raw as it was. And that moment, a moment filled with tears and heaving sobs as we all sat in a huddle with our arms wrapped tightly around each other, was the one and only moment we gave ourselves the collective thought that Michael might not be ok. And then it was over and we buried that thought again as we got back in the ring for the fight. We became, “Team Michael.”
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From Chapter 4 - Out of ICU
The fact is that Michael never did test positive for celiac disease. But he knew for certain that he needed to avoid gluten. This was discovered after my own diagnosis of celiac years before. I had had all my kids tested. All were negative but Michael. His results were inconclusive. I was able to talk him into trying the diet for a couple weeks. And the positive changes meant a continued gluten free diet. He transformed from a crabby kid to a happy, social, positive preteen. Canker sores disappeared and fatigue was replaced with positive energy. Introductions back to gluten a couple times made him feel miserable. A recent month-long indulgence with a gluten filled diet in order to have more thorough testing resulted in him looking forward to being gluten free again. He was experiencing greatly increased fatigue, lack of motivation, and mood changes. He didn’t express anything physical that would suggest to doctors, “you’re sick,” but he knew the difference in how he felt and he was ready to feel as good as he felt on a gluten free diet again. But still, those caring for him post-accident had no idea what his reactions to gluten were, and this diet needed to be respected and followed.
When a gal from dining brought in the tray and took off the lid to a bowl of broth, I asked, “Is it gluten free?” She made a call and then took this meal that he had been looking forward to away. Apparently not gluten free. So what he was left with was a container of milk, a juice cocktail (that contained only five percent real juice) and two sugar packets. Not sure what the sugar packets were for. And no, the broth was not replaced! So that was it for dinner.
Here’s my thought: as members of a medical facility, physicians, nurses, dietitians, and all staff, should understand food intolerances and allergies. We were blessed with phenomenal surgeons, and yes, they saved my son’s life. But here are some facts: many (not the majority, but many) with celiac or non-celiac gluten sensitivity vomit after ingesting gluten, and many more have diarrhea. Either of these would have been catastrophic. Michael had a very large incision from crack top up, about eight inches long on his back side, sutured inside and out. And he had staples from ear to ear with major, jaw repairs. He had several broken ribs that continued to cause quite a bit of pain. While he never had these kinds of reactions to gluten, no one knew what his reactions were. This is most certainly a big deal! We at least knew for certain that continued gluten ingestion made him feel miserable, enough so that he chose to avoid it. Hadn’t he been through enough misery? Had he had a drug allergy, they sure would have been all over that, wouldn’t they?
My son is just one of a rapidly growing population that requires a gluten free diet, or some sort of special diet. It frightens me to know that there is a great lack of education about special diets in facilities where we are supposed to be able to entrust our health. How many people enter a hospital with an illness or injury that impairs their ability to communicate their needs? And how many have family able to accompany them in order to communicate their needs and intervene for them? Not everyone, for sure. At the moment of my son’s hospitalization, it was just him who I thought of. But now, with all these months between those horrible days and now, it is all those who don’t have a hovering mom who I think of. And it is myself I think of. Celiac and gluten intolerance awareness and understanding has a long way to go in our medical facilities (including nursing homes) – and this I find quite disturbing.
Gluten issues aside, how about nutrition? Nothing was going in the feeding tube, as X-rays showed that it was not placed correctly. It was left in, however, in case they would need to go in and adjust it in order to supplement his diet. They were still unsure of his ability to swallow and eat well at this point. Nutrition in general, however, didn’t seem to be something anyone but me was concerned about. He hadn’t received any real sustenance in a week.