Keep Your Unvaccinated Kid Away From Mine

I try to stay out of the vaccine “debate” as much as possible. As someone who works in clinical psychology and has a son with a rare metabolic disorder, I find the “debate” infuriating and have so many different issues with it, but I refrain from arguing about it because it’s a waste of energy. However, it’s been on my mind lately given Gus’s health issues and today it’s all coming out. So, here goes (be warned):

1. The supposed link between autism and vaccines has been completely and 100% debunked by the medical community. For those of you who do not know what debunked means- it means that it does not exist. There is not any truth to these claims. There is no real evidence.

2. Any medical professional who says that there is a real relationship between autism and vaccines is first of all, a quack. And second all, they probably have a product or line of treatment to sell and promote. They are preying on the desperation and vulnerability of parents.

3. The idea that the medical community is somehow involved in a grand conspiracy to infect our children with potential developmental disabilities is preposterous and ridiculous. Doctors and medical staff that are involved in pediatrics are some of the most amazing and special people on this planet. If you think that those individuals who spend countless hours on the front lines fighting for children could in any way be involved in the actual harming of children, you clearly have not spent any amount of time on a pediatric hospital unit. As someone who has, the medical community who work with children are modern day angels and superheros. I’ve seen them at work. It’s insulting to the entire pediatric medical community to think they would harm children in any way.

4. There is a frenzied fear and paranoia that exists regarding autism in our society that is incredibly stigmatizing to individuals and children who actually have autism. People treat autism as if it is some type of terminal illness that must be avoided at all costs. People live in fear of this disorder that they actually know nothing about. Most people who harbor such fears have probably never even met a real person who has autism. Their views about children with autism are what they’ve seen on TV or read in their latest Google search. If people actually met and had relationships with individuals with autism, they might discover that they are absolutely wonderful people. They do not have some type of plague which must be avoided at all other costs.  They might realize that autism isn’t actually anything to be afraid of.  Get rid of the fear and you get rid of the stigmatization that this vaccine/autism “debate” continues to perpetuate.

5. The “dilemma” about vaccinating children is a white, middle-class problem that’s not actually a real problem at all. The highest incident rates of whooping cough and measles (which by the way were almost nearly eradicated and are now on the rise) are highest in affluent communities. It’s true. Check out the statistics for yourself.  The “dilemma” is fueled by people who need something to obsess and worry about.

6. Not vaccinating children is a public health risk and it kills children. Yes, kills children. And it has the potential to kill mine and other children like mine. My son becomes critical when he gets the stomach flu, the effect measles would have on his fragile system would have devastating effects. I think babies and kids dying is a big deal. I think anything that helps prevent the potential loss of innocent lives should be used. And as far as I know, no child has ever died from autism, but there’s plenty that have died from childhood diseases that could have been prevented.

So, while you’re “protecting” your child from a threat that doesn’t even exist, you’re exposing mine and millions of other children to real threats that have the power to kill them.

 

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Throwing Up

My entire life I have been terrified of throwing up. Nobody likes throwing up, but I cross over into hysteria if I even think about the possibility of puking or if there is even the slightest chance that I have come into contact with someone who has the stomach flu. It is a completely unrealistic fear, but feeling nauseous sends me into a frenzied panic. I feel like I won’t survive if I throw up. It’s that intense. Don’t ask me why. It just is. Always has been. I have had more panic attacks than I can count in regard to throwing up. They go all the way back to my childhood.

Somewhere in my early childhood, I began developing mantras to help me calm down when I felt sick. The one I chanted most frequently was, “I can’t die from throwing up. I can’t die from throwing up.” I still use the mantra today. I rehearse it again and again to decrease the anxiety associated with being sick because feeling anxious only contributes to feeling nauseous. The anxiety only makes me feel sicker. The majority of the time I don’t know if I’m actually sick or if it is just the anxiety and panic feelings about the possibility of getting sick that is making me feel ill.  So, I chant as a reminder that even though my brain is telling me I am going to die and I feel like I might, I am not actually going to die.

As I listened to Dr. W begin to describe what was wrong with Gus, I couldn’t help but think about the fact that my son could actually die from throwing up. The disorder he has is genetic. It’s an autosomal recessive trait which means that both me and his dad carry the defective gene. I carry the genetic marker that is responsible for his illness and I couldn’t help but notice the irony in it.  Perhaps my fears of throwing up had been grounded in the unconscious knowledge that I carried something inside me that is the most threatening when the body becomes severely dehydrated or ill. It didn’t escape me that I had spent my entire life fearing throwing up and now I was getting confirmation from one of the most brilliant minds in the country that it was a realistic fear. You really can die from throwing up. At least in the case of my son.

In January, when Gus got so critically ill, Yancy and I got into a huge about taking him into the hospital in the middle of the night. The part that I forgot to mention in my previous account was that Yancy is very aware of my abnormal and heightened fears of throwing up and figured that I was so freaked out about Gus because of them. I had let Yancy calm me down and reassure me like he has so many times in the past that throwing up was nothing to be afraid of. He guided me back down to reality and assured me Gus was not going to die from throwing up. Except that he was. Right in front of our eyes.

The defective gene that we carry which we have passed onto our son is extremely rare. So rare that only a few hundred people have ever been diagnosed with it. It’s a defect in the enzyme, mitochondrial acetoacetyl-CoA thiolase. (What kind of language is that, right?) Dr. W explained that most people who have been diagnosed with it are related, usually first cousins.

“Maybe we’re related.” I blurted out as soon as he made the relative statement. I couldn’t help myself. Nobody laughed. Nobody even smiled or said anything. I tried to smile because it was kind of funny that my black husband was somehow my first cousin. Dr. W went on to show us a diagram like this:

The circled number four is the part of the metabolic process that doesn’t work like it’s supposed to in Gus. I kept thinking, “I gave this to him.” I wasn’t blaming myself in a self-pitying way, but simply acknowledging that I had given him this problem just like my genes were responsible for his big, square head and his angular, defined jaw.

Dr. W continued to explain that if we had another child it would have a 1 in 4 chance of having it. It was easy to do the math in my own head about Gus’s children. My grandchildren will have a 50% chance of inheriting it. This thing. This thing that nobody really understands. That only a handful of people have ever had. It’s not going away. It’s in our family. We birthed it and it is here to stay. For the first time in my life, I’m not afraid to throw up. Instead, I’m afraid of him throwing up.

 

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Untitled

Stephen Spielberg Pediatrics Research Center. It’s the first thing I see when I step out of the car and into the parking lot. I stand there frozen to my spot while Yancy unlatches Gus’s car seat and pulls him out of the car. Stephen Spielberg. It seems oddly fitting since I’m having one of those moments where I’m watching myself. Recording.

Gus skips happily along between us each one of his small hands holding one of ours. He’s so excited to be able to play games on Yancy’s Ipad since it happens so rarely. He’s chattering on about which game he will play and how he’s the best. He has no idea what is about to happen. He doesn’t know that the nurse called me as soon as I got off work to tell us to be there fifteen minutes early because they are drawing another blood panel today.

The last one we had before leaving the hospital a few weeks ago was one of the worst we’ve ever had. It didn’t help that I was there alone because Yancy had gone home to let out the dog. Neither of us had known the lab would be back that morning or he would have stayed. The look of terror on Gus’s face as they pushed me aside to hold him down on the bed was one that will never leave me. The way he screamed, “Mommy!” over and over again with eyes filled in terror and bewilderment will be burned into my mind forever.

Medical Genetics. That’s what we’re looking for. Except we can’t find it. And I am furious at Yancy. I shoot him seething glares of hostility and rage as we walk through the hallways searching. And every time he turns to look at me I make sure he knows I’m pissed. The truth is that he hasn’t done anything wrong. Not a thing. I know it’s unfair. I know he’s done nothing to deserve it, but I can’t help myself. Sometimes I just need to be angry. I need to get mad about it and he’s my target. The truth is that he’s the only one who knows what this has been like. He’s the only person that I don’t have to try and explain things to. He’s the one person who knows every step of this journey.

The receptionist ushers us in pretty quickly since we are the last appointment of the day. The minute the nurse starts talking about labs and blood, Gus’s eyes turn to look at us. I see the look of betrayal in his eyes. The tears start immediately. I want to crumple right there on the floor with him instead we start valiantly trying to tell him not to be scared and that we’ll be there with him. Trying to convince him that it will be okay, but the closer we get to the lab the more worked up he gets. By the time we walk into the glaring lights, he is sobbing. And begging. “Please, don’t make me do it. I don’t wanna do it. Please. I wanna go home.”

I’m begging and pleading with him just as hard. “Please, Gus. Just relax. Calm down. It’s not going to be like it was in the hospital. It’s not gonna hurt like the hospital.” I promise.

It doesn’t matter. Nothing helps. There are arms everywhere. Faces and screams. They’ve taken him from me. I want him back. It doesn’t help that I know the tests have to be done. The blood has to be drawn. Because he doesn’t. He has no idea. He just knows the two people in the world who have promised to always protect him are helping strangers hurt him.

It takes three adults to hold down a four year old child and his screams shatter the white room. All I can do over and over again is whisper that I’m sorry.

“I’m so sorry, Gus. I’m so sorry, baby. It’s going to be over soon. I promise,” I whisper. But my words do nothing to calm him. I’m unsure whether they actually reach his ears. He is in a place of primal panic. I start yelling at Yancy to stop yelling at Gus even though I’m pretty sure he’s not actually yelling, but rather the volume in my head is turned up as high as it can go. I am breathing as if I have just crossed the finish line at one of my marathons. My forehead throbs and my jaw is as clamped so tightly it feels as if my molars might break. My body is on fire. I want to rip their faces off. Throw them off my son. Scream at them to get away from him. Leave him alone.

Finally, it’s over and I rip him off of the chair and into my arms. He is kicking and screaming. He wants down. He wants to run away. I want to run away too. I want to throw on his Batman cape while I put on my green Robin mask and run until we are out of this world. Into the next world where none of this is happening and little kids don’t get sick. But I can’t. We are here and so is everyone else. Crowded around so tightly I can’t breathe. One of the nurses is trying to shove a glass of water into his hands and I can’t take it anymore.

“Get away. Just give him a minute.” I scream. I scoop him up again and see a bathroom door to my right. I reach for the door and slam it shut, locking it behind us. Their voices fade away and it is just me and my baby boy. They can’t touch us. I pull him down on the floor with me and rock him slowly back and forth. And I talk about the only thing that I know might reach him. Ice cream. I talk about the ice cream we can get when we leave. Rocky road. His small body finally gives up the fight and relaxes in mine.

“Can we get sprinkles?”

“We can get as many sprinkles as you want,” I promise. It’s the one promise I feel like I can keep.

Eventually, we have to leave the bathroom. I get him to pee in a cup and wipe his face with a wet towel. Everyone applauds when I walk out of the bathroom with him. All Yancy can say is-“wow, that was hardcore.” I say nothing. We plop him on the exam table when we get back into the exam room. He wants the Ipad. He snaps at us when we try to talk to him as we wait for the doctor to come into the room. I understand. I’d be pissed at us too. I can’t blame him.

I stare at him wondering how this will affect him. Not the physical part of being sick, but the emotional scars. How deep will they run? Will he sit on some therapist’s couch trying to pinpoint the moment he lost his innocence and realize in a moment of remembrance that it was now? Or was it the last time we let them hold him down and torture him?

My thoughts are interrupted by the click of the door and the voice of the doctor, “I think I know what’s wrong with your son…”

For four years, we have been waiting to hear those words. All of the hospital stays and emergency room trips. Countless tests. Doctors. Nobody has ever said them to us. Nobody. It should come as some relief, so, why do I feel like I’m going to throw up all over the glistening white speckled linoleum floor?

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The Heart Of The Marathon

As someone who has ran 5 marathons in the last few years, I’m going to let those of you who don’t run marathons in on a little secret. Contrary to what you might think, marathon runners are not elite athletes. Granted, there are elite marathon runners and all of the other professional runners who are actually competing with each other to cross the finish line first for a prize, but they comprise such a small portion of all the runners who are out there on the course. What are the other 20,000 people doing on a marathon course?

The answer is simple. Being a part of something larger than ourselves. Healing ourselves. Standing up for what we believe in. Raising money for causes we hold dear. Dying to the part of us that says we aren’t capable of doing great things.

I showed up to my first marathon a few years back fully expecting to see nothing but slim and trim athletes and having given birth to my son only a little over a year ago, I was sure they were all going to be in much better shape than I was. I was shocked to see that marathon runners were comprised of some of the most unatheletic looking individuals on the planet. All shapes. All sizes. And all ready to run. It was during my first marathon that I learned what running a marathon is all about: Heart.

Running a marathon is all about heart. It is a journey of the soul more than anything else. Yes, you train because you have to respect the distance, but we are all running for something and it’s not to win thousands. We are running for a reason. One of my favorite things to do while I run is to read everyone’s t-shirts. Most everyone is running for somebody else or for something else.  The course is loaded with people running to remember someone else because it’s a tangible way to remember, grieve, and acknowledge the importance of their life. It provides a way to give the loss some kind of meaning.

My first marathon I ran as a St. Jude Hero which means I raised money for St. Jude’s Childrens Hospital, but I will always cherish my second marathon that I ran as part of Team Jake. Jake had cerebral palsy and in 2006, his dad ran the OC marathon to raise awareness for Cerebral Palsy. He carried his son, Jake, in his arms across the finish line. The family spent the entire afternoon with Jake and his father celebrating the marathon finish. That night Jake died peacefully in his sleep. Rather than give in to grief and bitterness, the family embraced the OC marathon as an opportunity to honor Jake’s life and to continue to raise money for Cerebral Palsy.

This is what I mean by heart. And this is what was out on the Boston Marathon course yesterday. Thousands of people running to honor a memory. Thousands of people running to honor a cause. Thousands of people running to get their life back. Thousands of people completing the final piece in a long complicated journey of grief. Mile 26 was marked to honor Newton’s victims, but every step of those 26.2 miles carried with it names and faces of runners trying to honor loved ones in some way.

In addition to the senseless death and injury that occurred yesterday, the coward for yesterday’s events took something that is so sacred to the marathon itself. The coward dishonored the lives of countless individuals, took away the opportunity for the runners to complete their journey. Took away the chance to cross the finish line because for all of us that have ran we know that it is so much more than the end of 26.2 miles. For most of us, crossing that line is not an ending, but a new beginning.

My heart broke. I didn’t know how to process yesterday’s events so I did the only thing I know to do. I grabbed my shoes and tightened up my laces. I put a helmet on my son’s head and handed him his scooter.

And we went for a run.

 

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Trust Your Gut

I knew from the first time that Gus threw up that something was seriously wrong with him. I knew it because I felt it in every part of my being. It wasn’t because I hate puking and go into a panic attack whenever someone near me pukes or that I was being dramatic. I felt it in my core that something was wrong.

It didn’t matter that everyone around me was telling me he was okay. That the flu is just really bad this year. The flu affects all kids differently. My pediatrician looked at me when I took him in the afternoon before he was hospitalized and said, “You seem really concerned about the flu.”

I explained to him that my child had barely been awake for the last 20 hours. And when I say barely, I mean barely. He had been lethargic and completely out of it from the moment he threw up. I explained to him that I knew my kid. I know what my kid acts like when he’s well and I know what he acts like when he’s sick. And this wasn’t Gus’s first go around with being really sick. I tried to let the doctor know that my son never quits moving. He is always on the go. And even when he’s sitting still, he’s singing to himself or carrying on a dialogue with the superheros that he’s coloring.  It doesn’t matter how sick he is. There was a weekend where he had multiple seizures throughout the weekend and was still bringing his shoes to me and motioning for the door. My kid was and always has been the anti-sleeper so the fact that he couldn’t stay awake for more than a few minutes at a time was alarming and disturbing.

Our pediatrician took blood and sent us home. I found myself in the middle of the night having a heated discussion with Yancy about how I knew something was seriously wrong with Gus and that we should take him to the emergency room. I was on the verge of hysteria. Yancy calmly explained to me that Dr. K was a pediatrician and he was a doctor who had worked with kids for over 30 years. He said- “There’s no way he would send us home with Gus if he thought there was something seriously wrong with him.”

Except that he did. Except that there was.

Dr. K called in the morning and said- “I’m looking at Gus’s lab results now. Hang up the phone and take him directly to Cedars. You’ll get there faster than the ambulance.”

I share this because I learned something very valuable from this. I knew something was seriously wrong with Gus and I let myself get talked out of it. Numerous times. I tried to tell myself that they were right and I was just being paranoid. Just being scared. But deep down. I knew.  And I couldn’t shake it. I will never make that mistake again. It could have been a fatal one.

I was talking with one of my dear friends the other day and she reminded me about a family we used to know who lost their toddler last year. We used to see them at the park all the time. We don’t see them anymore because their little boy is no longer with us. Last year, he got really sick. He got so sick that he died from the flu. This was after repeated trips to the pediatrician and repeated assurances that it was only the flu and he would be fine. They found him in his crib barely breathing and the rest ends in tragedy. Fact: The leading cause of death among kids under the age of 5 is the flu.

I share all of this to say: Trust your gut.

I mean it. I don’t tell people what to do very often. It just isn’t my style, but this is important. If you think something is wrong, don’t stop until you’re satisfied something isn’t. Who cares if the doctor thinks you’re being paranoid or overreacting? There’s nobody that knows your kid like you know your kid.

That mama bear instinct is loud. And if she roars- listen.

 

 

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My New Year Miracle

I have to be honest. 2012 was not an easy year for me. It was a keep putting one foot in front of the other kind of year. I’m one of those people who gets really excited about the new year and given how difficult 2012 was for me, I was especially excited for the end of 2012 and the beginning of 2013. I love January 1st in the same way that I love getting a new fresh notebook. It’s a completely blank slate. It’s symbolic of a fresh start and loaded with possibilities.

Within a few days of the new year, I found myself in a hospital room with Gus surrounded by doctors and nurses with concerned looks on their faces and no answers as to what was wrong with Gus. We spent the beginning of 2013 in the pediatric ward at Cedars Sinai. It’s a long story filled with mystery and miracle. Basically, Gus’s symptoms looked like he was in keteoacidosis but his lab results looked the opposite.  His blood sugar was dangerously low (45) and his bicarbonate index was also dangerously low. I didn’t even know what a bicarbonate index was until this happened. Basically, it’s the index that controls and maintains the metabolic functioning in the body. A normal index is 23. A kid who has severe dehydration to the point of hospitalization is 14-15. Gus’s bicarbonate index when we got to the emergency room was a 7.  With no explanation as to why.

As a parent, your biggest fear is that something will happen to your child. And when something does, it shakes you to your very core. Unfortunately, this is not the first time I have had to see my son in such distress and beg God not to let my baby die. It sounds dramatic, but only because it was. That’s where we were. The hardest part was that the doctors didn’t have any answers. They couldn’t explain why he had gotten so sick, what was wrong with him, or if he was going to get better.

The level of powerlessness that I felt brought me to my knees. I must have said every prayer that I knew how to pray. In every kind of way. It was the only thing to do. And then for reason, 36 hours later, at 5 in the morning, Gus woke up and asked for a cheeseburger. By the next afternoon, he was begging to go for a walk and asking me why I looked so sad. When I told him that mommy gets really worried when he gets sick because I love him so much, his reply was simply, “But mom- you don’t have to be sad. I’m not sick. I’m better.”

And he was right.

Have you ever watched a team of doctors in a room, scratching their heads and looking at each other with confusion as they try to figure out what just happened? I have. All they kept saying over and over again was, “it really is a mystery. It doesn’t make any sense.” Even the nurses were amazed. When I brought him into the play room to play with the toy trains, a bunch of them gathered at the window to watch, pointing him out to other nurses, and saying- “can you believe that’s the kid in 4021?” I saw their exclamations of “wow’s” and “no ways.”

The doctors are still saying it’s a mystery. But I’m not. It’s not a mystery to me. It was a miracle.

 

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