Sunday, August 24, 2014

Family History

When I was 15 weeks pregnant, I walked out of my OB's office sobbing. We had just found out that the baby I was carrying, was a boy. I was ashamed to tell anyone about my reaction. He was healthy, so what did I have to be upset about, people would say. 

They didn't know shit.

For me, the news that I was having a son and not a tiara wearing princess, wasn't about gender preference, it was about genetics. And fear.

I grew up with an older half sister, and a younger brother. My sister was a few years older than me, and had a few physical problems, but nothing that made life too difficult. I remember her having to wear a back brace to bed at night for a while, but to me, she was no different than anyone else. I looked up to her, and until my mid-teens, aspired to be just like her. She was normal; popular among her group of friends, smart, and beautiful.

My younger brother, on the other hand, was about as far from normal as a kid could get. He was only 16 months younger than me, so everyone expected us to be great friends. We were anything but.

One of my earliest memories is of my brother's first psychotic break. We had both gone to school that day as usual, but on the bus ride home, he was absent. I thought nothing of it until I got home and found our mom in tears.

She confessed that he had had an episode while at school, and was away to get help because he was sick. My brother was gone for three days. I later learned that he had been placed in a children's psychiatric hospital, beds complete with restraints, after running away from school with a knife, after threatening to kill the principal and her family.

He was barely nine.

For years, I watched my mom struggle to control my brother. His outbursts became full on rages. The "people" in his head apparently grew louder and pushed him to do unspeakable things. Not too long after his first hospitalization, did he attempt to drown me in the neighborhood's public pool. On more than one occasion I watched as he tried to hurt our mom, or attempt to take his own life.

Our house was filled with drawings that didn't make sense; arrows pointing to corners, circles overlapping circles. They stayed taped to the same spots so long, when we finally moved the walls were whiter underneath.

My brother is 20 now, having just celebrated his birthday not too long ago. I haven't seen or spoken to any member of my family now, for almost a year, for unrelated reasons. At my last count, my brother had been committed somewhere around seven times, the last three falling closer together than the rest.

I never knew my brother's official diagnosis. Our mom never cared to share it with us, and I never thought to ask. I knew he scared me (and still scares me), and that was all that mattered at the time. The more I think about what he was like growing up, the more obvious it is what kind of condition he has.

My mother used to tell me that I'd make a great mom. I'd been the rock for our family, helping to raise my brother when her disabilities got in the way. I'd understood and withstood my brother's assaults, and still stood up for him to the bullies. I could handle him. If I ever had a child like him, I'd be prepared. I would know how to fight for him, how to care for him, how to stay strong.

As with many other things, my mom was wrong. Having a child like my brother was my biggest fear.

My own son, is as different from my brother as they are alike. I lived in fear of the unknown until he was born. His early arrival overshadowed every concern I had once had. He grew and as we left the confusing world of prematurity behind, I let my guard down.

Until his regression.

When Caiden lost his words at 18 months and started getting violent, my first thought was autism. My brother's illnesses were the last things on my mind.

Eight months later, we have few answers and dozens more questions. I find myself wondering if there's more going on in his head than we realize. Could his smaller brain size be affecting the delicate balance of his chemical levels? What if his extreme behaviours aren't from autism, but bi-polar disorder, or worse, something akin to my brother?

Over the last week, we've seen a behavioural regression. When we started therapy, his meltdowns all but disappeared. Now they're back with a vengeance and I find my heart aching for normalcy.

I watched my brother punch himself in the head and put holes in walls for years, and barely batted an eyelash as I attempted to restrain him, oftentimes getting injured in the process. With Caiden its different. Each time he falls into a meltdown, it feels like I'm drowning. There is something so fundamentally wrong about watching your child writhe on the floor, screaming to the point of choking, and being completely unable to so much as touch him.

Sure, I know how to fight for him. I know how to pester doctors into giving me the appointments and the tests I want. I don't always know how to handle a toddler who instills a fear I have never known before.

I fear he will hurt me one day. Even at just two years old, he's strong enough to now.

I fear he will follow the same path my poor brother did, and that his youth will be stained by hospitalizations.

I fear he will never get all the help he needs.

I fear we will never know what makes him so different.

I fear one day he'll regress so far that we'll lose him completely.

I don't always know how to stay strong for him. Sometimes his meltdowns include equal amounts of crying from the both of us.

What I do know, is how to love him. I love him like no mother has ever loved her child before. I have lived a hell other parents don't dare imagine. Each day, he breaks my heart, and each day, it is only he who can put it back together.

Sometimes, on the rougher days, you have to dig a little deeper to find your courage, to grasp your shield and face the lion again. I am not special for facing another day, another battle. I do it simply because I must, and to fail to do so, is to fail the one person who needs me the most.

Sunday, August 3, 2014

The Cliff

There's a quote by Ray Bradbury that has cemented itself in my mind. Its one of those things that keeps coming back to you no matter how hard you try to forget it. I think I heard it in high school and I keep stumbling upon it now in my adult life. It goes, "Go to the cliff and jump off; build your wings on the way down." I always thought it was about taking risks and learning as you go, but recent events have made me really think about this idea and what it actually means.

Last month was a good month with Caiden. We have learned how to better prevent meltdowns and how to interpret what it is he's trying to communicate.  As a result, our home has been a much calmer place. It came with a few obstacles though.

Blood work. The developmental pediatrician we saw the end of June ordered a ton of blood work. Things like lead leavels and thyroid function only grazed the surface. We had been putting off getting him tested for the clotting disorder I have, because we were quite frankly afraid of the battle that would take place. Now with these new labs ordered we had no choice.

To our surprise, he actually did well. It only took four people to hold him down, and though he screamed bloody murder the entire time, he was calm as soon as he was allowed to get up. He even got a prize after!

We have most of the results back, and unsurprisingly so far most have been normal. We're still waiting on his chromosomal microarray (looking for deletions or duplications on each of his chromosomes) and fragile x (a genetic abnormality on the X chromosome). Aside from the clotting disorder (which he does have), the one blood test that was abnormal was something called CPK.

CPK stands for creatine phosphokinase. Its an enzyme that your body produces when the brain, heart or muscles are damaged. His levels were slightly elevated but for no clear reason. We were told not to worry about it, it could be nothing.

He had appointments to get his eyes and hearing tested. Both went well, his eye sight is perfect and his ears work just fine!

Then, on July 28th, we had possibly the most important appointment to date. His MRI. Because of his age, Caiden had to be sedated. Totally routine, but we were warned he may wake up a little... grumpy. And grumpy he was. He left quite the impression on the staff when even the morphine they gave him didn't calm him down after he woke up. Eventually he did calm down and we were able to go home, and wait for the results which were supposed to be available later that day.

We waited.

And waited.

And called the doctor.

And waited some more.

Then we got the news on Friday August 1st (for some reason I cant get around August being a bad month).

Global Cerebral Atrophy.

His entire brain is significantly smaller than it's supposed to be and isn't expected to catch up completely. It has either stopped/slowed in growth or shrank. And right now, they have no idea what caused it.

The brain naturally shrinks with age, but this kind of damage is something thats typically seen in people with alzheimers, traumatic brain injury or serious illnesses like MS, none of which he's had.

It puts him at risk for seizures, cerebral palsy, dementia, and aphasia (a condition that hinders you from being able to communicate)- something we're already seeing.

Prognosis varies depending on the cause, type and location of damage, but its a degenerative condition by nature. If his brain has stopped growing, he will likely be stuck at the development he's at now (a one year old). If its growing slowly, we need to get him as far developmentally as we can before his brain does stop growing. If its shrinking... he will continue to regress and the condition would be terminal.

He will need additional MRIs throughout the his life to monitor the growth/shrinkage and to determine what exactly is going on.

Its seemingly rare in children, especially since his entire brain is affected and not just one part, and he has no history of illness or injury. Hopefully, the remainder of the blood work will let us know if there's an underlying condition but for now... all we can do is push him in therapy and hope that his brain doesn't shrink but continues to grow.

"Go to the cliff and jump off..."

I feel like I've been pushed off that cliff, the fall totally out of my control. I'm still a bit in shock. It seems a bit unfair, after all we went through when he was first born, this information was devastating. We started this crazy journey expecting to hear that Caiden has autism. Instead, we found out he has a potentially terminal brain condition. Even if its not terminal for him, he won't be "normal" like you and I. He is considered disabled and as having special needs. He has unexplained brain damage. Hopefully, with enough therapy, he'll be able to lead a relatively normal life though.

" your wings on the way down."

No matter what the future holds for him, he will always be my baby. I don't love him any different than I did before we got the news, and that wont change as we figure out more of whats happening in his body. We will take what comes and learn from it, grow from it, and encourage others to do the same.

Caiden has always had the ability to put a smile on the faces of the people who meet him. He is a happy little boy with a beautifully contagious laugh. He is in essence no different from other two year old boys, he plays with cars, balls and sticks and has an uncanny ability to accumulate dirt. His brain is just a little different, a bit more baby-like than it is toddler.

He deserves love, understanding, and complete acceptance of the person he is and will become.