There is a reason humans are drawn to the ocean. Not only is the vastness of it awe-inspiring and gives perspective to our egos, but there is a rhythm that we find soothing and to which we can relate. Everything comes in waves, from the changes of the weather and seasons, to the rhythms of the human body and our lives.
Our family's life ebbs and flows like everyone else's, but for the last countless months it feels like we’ve ebbed more than we’ve flowed. For example, tonight two of our children played a game they called “lumbar puncture”. I watched them play a similar game many years ago when they re-enacted the birth of a child in an effort to understand and internalize the process for themselves. This time I found it much less humourous.
In July of last year, as most of you know, we travelled home to NY for the first visit since we had left. We all missed the place and the people we called “home” and were thrilled to bathe in the familiarity and chaos of it all. While we were there, we also experienced the things about NY we didn’t love…the poison ivy (it didn’t take long), the humidity and, of course, the ticks. We are no strangers to ticks and when the kids returned from the woods repeatedly with anywhere from 1 to 10 ticks on them each, I didn’t even batt an eyelash. I removed them, as always, bathed the children to catch and remove any stragglers, washed the clothes and went on, business as usual. However, our son had one tick that latched on inside his ear crease and I didn’t catch it until the next morning. I removed the tick and reassured myself that it was not on for a full 24 hours (probably closer to 14 - 16 hours) so it wouldn’t be a problem.
I knew she was wrong. I knew from the second he told me he had a stiff neck. So why did I back down when an authority figure in a white coat fed me what I knew to be untrue? I guess I wanted him to have slept wrong. It was easier than coming head to head with the medical system. And reality.
I have also had Lyme’s, very briefly (if that is even possible). I had gotten bitten once on my thigh when I was pregnant with Tiny. I found it and removed it. The bite itched and was red and swollen and inflamed, though I am unsure if it was ever a bulls eye. I also thought nothing of it at first. Then, one day, I woke up and the gland in my groin near the bite was hot and painful. I immediately knew what was happening. I have to admit, I found it fascinating. I could feel a wave of pain spread across my body like a ripple; like a storm moving in and settling on the land. I have never felt any sickness like it in my life. A shock wave of electric spirochetes advancing without restriction. I immediately took antibiotics and have not felt the waves like that since.
Over the next three months or so following our visit to NY last summer, our son started to have issues. At first they were easy to dismiss. A headache here. A sore knee there. He had joined Jiu Jitzu with his older sister and began acting out in class. I got frustrated and angry with him. What was going on? How dare he behave like this? He removed himself from class, saying he didn’t feel good. My cynical, authority-figure adult side decided it seemed like a tactic to avoid working hard, so I countered with commitment. “You’ve committed to this, so you need to stick it out until the end of the session”. He agreed to go, but not participate. I allowed him to watch on the side, realizing that his persistence was a clear indication that something was wrong. I later realized he just didn’t have the words to describe what was happening. Eventually, he was able to articulate that the pounding on the mats hurt his brain and his body. He began complaining about how roughly other kids played with him, how much his body was hurting and, eventually, had an episode where he could not use his leg at all as it was so painful to him.
At this point I brought him to his doctor (October), explaining what had happened in July and what was going on now. She said she could see nothing wrong with his leg. She attributed it to growing pains. I insisted that there was something else going on, if not Lyme's than something neurological as all his symptoms seem to move up and down the spine. She said she would order some blood work, but did not yet think a Lyme’s test was warranted. I said I would have his teeth and eyes and anything else checked in the meantime that should be ruled out neurologically. She said to bring him back when he was actually experiencing the leg pain.
Over the next few months the episodes became more pronounced, though still really sporadic. Some days he could not walk well, some days I had to tie his arm(s) to his chest because it was too painful for him to support it (them). But many days he seemed absolutely fine. When I tried to bring him to the doctor’s office to show his aches, there was either no room in the schedule for us, the doctor was not in or we were elsewhere in Vancouver unable to get back to the office until things had passed again. Meanwhile, I had made appointments for him to see anyone who was available and may have a clue for us. He saw the dentist, the eye doctor, a cranial sacral practitioner, a chiropractor and, when he got worse once again and his doctor was on vacation and not available, we went to see a naturopath. Most of these practitioners could see that there was something very wrong happening, but continued to point us back to the general practitioner to get the tests he needed. So, finally, we returned to her once more.
I was working that day and sent my husband to the office with a full page detailed note (OCD much?) of all the things we had done to find answers and all the issues he had been facing since seeing her in October. I told her we had seen a naturopath in her absence and gave her the list of blood work he requested us to have checked. Apparently, medical doctors frequently take this foray into “fake science” personally. We were told that naturopaths always want to do a lot of unnecessary tests and that she would choose some repeat blood work, but that it was probably just growing pains and a nervous stomach.
I was furious. Furious may not be a strong enough word. Frantic is another word that also comes to mind. There are so very many emotions one goes through when their child is sick. And most of them have nothing to do with the child, unfortunately. We take so many things in parenting personally, particularly when it grows intertwined with identity like a vine around a tree trunk, cutting into the bark and choking the tree. What kind of a mother am I? Why didn’t I do more? Why is she doing this to us? What does this mean for him? Too much mental meandering without actually just being there in that moment and dealing with the issue at hand. This realization didn’t come until the spinal tap. (It is amazing how all thoughts are driven from your mind and you become absolutely numb when someone uses the words “lumbar puncture” in the same sentence as your child’s name. But I am getting ahead of myself.)
After about a 5 day stretch of children’s tylenol twice a day to quell a headache that wouldn’t go away, a friend of mine suggested just walking him into Children’s Hospital in Vancouver. This proved to be two steps forward and one step back. They agreed there was something going on, but because he had no fever and wasn’t bleeding out of his eyeballs they could do no more for us than to give us a referral to an Infectious Disease doctor in Vancouver…an appointment that would take another two weeks to get.
Meanwhile, this kid was an absolute trooper. By this time he refused all painkillers because they no longer had any effect on him and actually made him feel worse. He had days when it seemed like nothing was wrong (“Look, Mom!!! I am soooo great on this pogo stick!!!”) to days/nights when he begged me to take him back to the hospital. Nights when I held him up in a warm shower because it is all I could offer him and he couldn't stand on his own two feet.
Since then, he has finally been diagnosed with Lyme's Disease. He had a spinal tap two weeks ago to see if it went into his spinal column (which they concluded, luckily, that it has not) and he is on doxycycline. They told us that it would get worse before it gets better while the bacteria die off and create toxins. This they did not lie about and that is where we live currently - with a nine year old boy that walks like a 90 year old man, or that gets carried around like an infant, crawls on his knees when he cannot stand and then sees his friends and runs to be with them, laughing and playing only to be in the bathroom in 20 minutes vomiting or sitting in a quiet ball on the floor minutes later. He has constant headaches that cause him to shy away from noise and light one minute, and run around frenetically the next, like a dog trying to shake off an earache. We await a “return to normal” for him. I am hoping that it is not too much to ask, though the people with Lyme's I know are less encouraging in that direction.
However, he did turn a corner today, making it seem like the medication is starting to work (or the electro-magnetic frequency pad a friend of mine put him on!!!). This was the first morning since taking the medication that he did not need to be carried down the stairs or around the house in the morning. Typing this all out now makes it sound so very dramatic, which is why I haven't sat down to do it until now. And, yet, he goes on business as usual. Our days are still our days. Yes, he gets upset and depressed about all this (so feel free to give him a good squeeze next time you see him!). But somehow it has just become the new normal. Not a dramatic soap opera. Reading this back to myself makes it sound like I should be crying all day every day…and yet somehow it just feels like …I don’t know…a fact, I guess. A really sucky fact, but a fact. I talk to people about what is going on, not for sympathy or drama, but so they understand a bit about what he is going through. So they find ways to support and show him kindness. And to be aware in their own lives.
The upswing. The upswing is that he has an amazing sense of humour. The upswing is that his sisters have felt closer to him than ever - they check on him constantly and are extremely patient when he becomes frenetic and incendiary because they know it means he’s really hurting. The upswing is that he is learning about his body in ways he had no intention of doing before. The upswing is that learning how to be patient - for him AND the rest of us - is no longer a luxury. It is a mandate. And my biggest take away in all this is that it could have been much, much worse. I can not emphasize that enough. As I stood in the hospital feeling sorry for my son who was about to go through a lumbar puncture, the doctor explained to me that some kids - particularly those with cancer - can have one spinal tap every month. Every month. And that is when there is still hope for them to get better. Perspective.
The unknown, particularly when dealing with your child and illness, is such a scary demon to battle. It is truly a humbling experience to walk into a children's hospital - to see the heroes and heroines, in patient-form, parent-form and those who care for them on a daily basis. They have my utmost respect. I highly recommend everyone to, for no particular reason at all, visit a children's hospital just once in their life. Put it on your bucket list. It will change you.
Once again, thanks for riding this wave with us. Here's to a perfect barrel to give us clarity and wonder until the next turn and thrash of the undertow!
