Goodbye Oakview!!

“Today is the last drive to Oakview,” I say to the tired and sleepy 14 year-old in the passenger seat as we approach the middle school’s parking loop. I have driven through this loop a countless number of times to deliver forgotten lunches or instruments, take the kids to school when they missed the bus, or picked them up from art club. But today is the last time I will be taking this route.

I am filled with a sense of melancholy. Oakview Middle School has been Tracy’s home for the last three years and was the home of his brother for the three years before him. So for the past six years Oakview has been my home too. It has been the building that has housed, formed and grown my two teenage sons. It has been the venue in which I chaperoned Friends and Fun nights and attended band concerts and award ceremonies. It has employed the teachers who I have come to know through emails and conferences and field trips.

No one could have expected the last day at the school to look like this. Unlike every other last day of school there is not a mess of students crowding the halls, giving high fives, and furiously trying to get in one last yearbook signing. There is not a gathering of parents and teachers and administrators clapping for the 8^th graders as they exit the doors of the school for the last time, a time-honored tradition of the Lake Orion School system. There is not a train of yellow buses lined up to take their progeny home for the last time.

Today the school looks lonely. There’s a smattering of cars in the parking lot but not a person or student in sight. I’m not surprised. Because of COVID-19 the school had to assign blocks of time for the kids to come to school to clean out their lockers, and Tracy had the early morning slot. He hasn’t seen this time of day in months. From the lack of students I can assume his peers with last names that begin with A-B haven’t either.

He puts on his mask and picks up his bag of books and band music and carries them into the school where he will empty the contents into bins along the wall and then fill the bag up again with the contents of a school locker he hasn’t seen in three months. Who knows what lurks in there?

As I sit in the parking lot and wait for him, a wave of sadness rolls over me. I am surprised – I did not expect to be so affected by this one little drive. As far as I was concerned school was over three months ago. But the enormity of this moment, that I won’t be coming back, that my baby is going to be in high school next year (and my oldest will be a senior!!) threatens to unmoor me.

When Michael finished 8^th grade there was a plethora of activities to mark the occasion: the color run, Lewis and Clark days, 8^th grade band concert, awards ceremony, and 8^th grade celebration. It was a time of finality; there was a day when we could say “You’re done with middle school; now you’re an official high schooler.” With Tracy, we did not get that closure. He had none of those celebrations, for, due to COVID-19, his last true day of school was March 12^th.

So much has happened in his three years here. From my safe place in the parking lot I look into the 6^th grade hallway and think back to the beginning of middle school, when that small kid asked me to attend his orientation day (the parents were invited) for moral support. I watched as his happy smile engaged others; he was eager to make new friends and learn new things. I saw the pride he felt in turning in his trumpet for the much harder oboe. I listened as he told me the names of the friends in his classes.

As I stare at the mural on the inside of the school that says “Be Awesome Today!” I remember all the great teachers Tracy has had, from his 6^th grade science teacher who told us how much she enjoyed Tracy’s vibrancy and color to this year’s math teacher who went above and beyond to make sure he was finally put in the math class that was right for him. Some of these teachers I have known for 6 years because Michael had them too. What great leadership Tracy has had as role models, especially the principal who sent a weekly newsletter home to parents telling us how awesome our kids are and how much she enjoyed being a part of their lives. I will miss her positive attitude and those newsletters, sigh.

Even though I feel sad, I’m kind of glad it’s over. Middle school is a soup of stinky, moody, angry, and sad hormones that push and pull kids like taffy, stretching them in every way and causing a lot of mental, emotional, and physical growth. Even though Tracy made new friends and learned a ton of new things, these past three years haven’t been easy on him, especially this last one. The school year of 2019-2020 doled out more heartbreak for the 8^th graders of Oakview than almost anyone can bear in a lifetime.

Just as they were getting into the stride of their last year of middle school they had to pause in their learning about math and science and study a subject that had not been in the curriculum – death and loss. In November a dear classmate suddenly and tragically lost her life, and so they had to deal with incredible grief and sadness. Tracy took it particularly hard because he had known her since Kindergarten.

As winter progressed I saw as he tried to regain some sense of normalcy at school, but could tell that he and many of his peers were just done, clocked out of school permanently. Perhaps it was too much to look upon the empty chair of their friend every day. Enough was enough, or so they thought.

In March the pandemic hit and middle school was over just like that, a pause that caused the 8^th graders to shift their way of being once again. Kids who thrive on being around their friends were stuck home with their parents, having to do “optional” homework and attend “suggested” online classes, another level of new normal. Despite the warm, loving and caring presence (both in person and online) of the Oakview teachers and principal, the grief, loss, tragedy, and challenges of this year have molded him and his peers in a way that I don’t think we can even yet define.

However, if there’s anything I have learned from Tracy and his class of 2024, it’s that when you get knocked down you keep getting up, again and again and again. That’s resilience, a term that has been used for his class. I think it is apt, for these kids have had to face many challenges, and will most likely continue to do so as even the near future is a relative unknown.

This year has been hard on everyone. We are living through difficult and turbulent times. School is not ending in the manner we’re used to, loads of people are unemployed, the virus threatens to linger for months if not years, and there is civil unrest throughout our country and in the world. Uncertainty is spreading as fast as the virus.

But I have hope for the future, because I know that in a few months’ time school will begin again, high school, a new chapter for Tracy and his peers. And while we don’t know yet what that schooling will look like, we do know the students will continue on their path of learning anyway. Because they are brave, tough, and resilient.

I watch Tracy come down the stairs, his last flight of middle school. He collects his yearbook from a teacher and I watch him come through the doors of Oakview for the last time. He’s a far cry from the happy-go-lucky 6^th grader who first walked the halls 3 years ago. He’s much, much taller and leaner, with chin-length multicolored hair and a slow, long stride, and a very different attitude towards life. While I feel sad our middle school lives are over, I know he is happy to be done.

It would embarrass him too much if I were to get out of the car and clap for him. So I do it from the driver’s seat – I wipe my tears away, put on a big smile, and shout “Congratulations!” as he opens the passenger door. He rolls his eyes at me in his typical teen manner, but I can see the spark of a smile growing.

It’s too early for Dairy Queen to be open, but I want to mark this occasion in some special way. We have plenty of ice cream at home though, so I make a very unexpected and very much appreciated move.

“Ice cream sundae for breakfast?” I ask.

The smile grows into a great big grin. It’s the only answer I need.

We drive through the parking loop for the very last time, past the front entrance, past the American flag waving proudly as always, and past the sign that reads “Oakview Middle School, Established 2002”.

"Goodbye Oakview," I whisper. “Thanks for everything!!”

This post is dedicated to all the teachers out there, not just the ones at Oakview, who made it through this challenging year and kept our kids on track emotionally, socially, and mentally.

Fear as Healer - How I am Making Sense of my Coronavirus Fears

It was late January when I first heard about the coronavirus. Like most Americans I dismissed it as another hyped up illness, comparing it to the overblown H1N1 or SARS scares of years past. It was something that was happening a half-continent away in China, what was there to worry about?

In February my family thought nothing about flying to Florida for winter break. On March 6, two weeks to the date after our return, my eldest texted me to see if I would pick him up from school. He wasn’t feeling well – he had a scratchy throat, nausea, and fatigue. He later spiked a fever that went up to 101.2 and lasted a day, followed by congestion and a cough. At the time there were no coronavirus cases in Michigan, nor was there any specific information about the pathology of the illness. The symptom list was vague - fever, coughing, and difficulty breathing. But I wondered – could he have picked up the coronavirus at the airport or on the plane? I took him to the doctor a few days later. When I signed him in I noticed a new spot on the sign-in sheet – “Have you traveled anywhere in the last two weeks?” I marked yes. But despite that no one mentioned anything about coronavirus or where we had traveled; the nurse practitioner listened to his chest, said it sounded good, and sent us on our way.

On the way out, I picked up a fact sheet about COVID-19 by the Michigan Department of Health and Human Services. It said that coronavirus spreads through the air by coughing and sneezing, close personal contact, and touching a surface that has the virus on it and then touching your mouth/nose/eyes. “Health experts are concerned because little is known about this new virus and it has the potential to cause severe illness and pneumonia.” Well, that was certainly disquieting. We’d all had pneumonia a few years back and it was not fun. I was worried about the possibility that Michael had the coronavirus and would have to be out of school for 14 days in a quarantine. A friend in San Francisco posted on Facebook that her daughter’s roommate and boyfriend were sick and presumably had coronavirus. Their symptoms mimicked my son’s, minus the congestion.

It was right about that time when Italy became the next hot spot. Every day the news reported more and more cases and deaths there. I kept a close eye on this because my parents were supposed to go to Spain on March 10. Soon cases started to appear in Spain. No one wanted to tell my parents not to go on their trip, but we all were concerned about the risk, not only of them getting the virus but of getting stuck in Spain if travel to the US was locked down (which it later was). Luckily no one had to; they made the decision on their own, and we all breathed a sigh of relief. Spain did grow to be the next hot spot after Italy; the cases in Spain tripled in the three days after they decided not to go.

That fact sheet of early March - it also said this: “Currently the risk to the general public is low.” Think about that. Only a month ago health experts were concerned about the coronavirus causing pneumonia and I was only concerned about my son missing school! And now worldwide there have been over 81,000 deaths and over 1,400,000 cases, and that’s only the ones that are known. Schools were cancelled on March 13 and as of last week have now been cancelled for the rest of the school year. My home state of Michigan, like many other states in the US, has been on lockdown since March 24 in order to lessen the spread of this virus that is so contagious it is spreading like wildfire. Grocery stores were void of any paper products for weeks, and videos surfaced of fights in the aisles over toilet paper. Simply unreal.

Admittance - The First Step

I’ve been in a very low mental state for the last three weeks. My anxiety and fear levels have been through the roof, and I’m sure much of the world is feeling this way too. I haven’t been writing or meditating or doing much of anything. I don’t want to talk to people and if I do I find myself being irritable and short with them. I feel numb, flat, restless, and unmotivated. I don’t normally pay much attention to the news, but I find myself being unable to stop refreshing Google News to view the latest updates. Every day at 3:00 pm I check the local news website to see how many new cases and deaths there are in my state. With every stomachache, headache, or sore throat (and there have been many) I take my temperature and wonder if the virus has finally come to roost in my body and house.

Does it sound like I’m worried and afraid? You bet I am. I’m absolutely terrified of this coronavirus coming into my home or that of someone I love and changing the trajectory of my life. It’s why I worry about my 79-year-old father-in-law in Wisconsin, as well as my niece who works in the NICU department at the hospital, my cousin's wife who works in the ICU department, and my friend who is a deaf translator at Beaumont hospital. It’s why I won’t go to the grocery store and send my husband as my Hunger Games tribute even though I desperately want to go in his place. It’s why I won’t go on a social distancing walk with my mom and dad who only live a mile down the road from me. It’s why I call people names (not to their faces of course) when they’re not abiding by the social distancing stay at home rules.

And just what are those rules exactly? They’re always changing. The people in charge don’t seem to know what they are either. First it was wash your hands and use sanitizer to block the spread of germs. Then after schools were shut down we were told to put into practice social distancing and keep 6 feet from others who were not part of our immediate family or household. But could we still see other people as long as we were 6 feet apart? Unclear. I started reading articles posted by friends in San Francisco about the measures they were taking. Walks with others? Nope. Their advice was plain and simple: just stay home. And so I did. I declined walks with anyone outside of my home, parents and brother included. I cocooned myself and my family inside my home.

I watched videos of nurses begging everyone to stay home and refrain from socializing with anyone outside of the home because the hospitals were limited in supplies and almost at capacity and you did not want to end up there. I broke down for the first time after watching these videos as the threat of what our world was dealing with became all too real. The second time I broke down was after the announcement that the schools would remain closed for the rest of the school year. Not because I would have to be in charge of homeschooling my teens for the rest of the year, but because our present situation was expected to remain so dire that we wouldn’t be returning to normalcy before the end of the school year. Mostly I was afraid that this would be the new normal, that our lives would be irrevocably and forever changed.

Looking at social media didn’t make me feel better; for some reason it just made me more irritated and annoyed. Many of the people I follow were sharing meditations or other resources designed to help you feel better or to help ease your anxiety and fear. Others advocated learning new skills or making masks or doing anything to keep busy. I felt less than because I didn’t feel like doing any of these things. I did put a thank you heart on my mailbox but couldn’t get motivated to do anything else because I was busy being angry, afraid, and processing my grief over this situation we found ourselves in.

Last week I went on a walk in nature with my son. It was a beautiful spring day, warm and sunny, and I wanted to walk amongst the trees. I knew it would be the perfect medicine for my mental health. We drove to a trail head, only to discover that everyone else had the same idea. The parking lot was packed with cars. My need for sun and nature outweighed any sense of fear I felt at being so exposed, so near others (near being a safe 6 foot or more distance), but afterwards I wondered if I had done myself and my family a disservice? We passed a lot of people on the trail - had I just risked my family’s health?

My worries intensified two days later when the CDC came out with the advisement to the general public to wear masks anytime we were outside of our homes. They now believed the virus could be passed not just from touch, sneeze, or cough; it would linger in the air after you talked or breathed and you could, in that manner, be exposed to the virus. The developments keep evolving. The latest, according to Kaiser Health News, suggests that the coronavirus can infect the heart muscle, leading to heart failure or cardiac damage in patients. Yikes!

Every day things are changing and my anxiety keeps ramping up. Perhaps others think I am going over the top by locking my family down so stringently. The thing is - I’m no stranger to viruses. In fact, I have spent the past decade being vigilant about eradicating them from my body and household.

In 2013 I was hospitalized with Epstein Barr Virus (EBV), the virus that causes mononucleosis and contributes to Chronic Fatigue. Recovery was not simple. My immune system was severely altered and I had to be careful with what I ate or drank (no alcohol for me - it would cause me to get sick again). I even had to be wary of my daily activity levels as overdoing it with exercise or cramming too much into one day would catapult me into a relapse. In 2014 I started seeing an infectious disease specialist.  He discovered that in addition to EBV I had high levels of other viruses. This viral load in my body was significantly overwhelming my immune system, causing chronic fatigue and illness. Antivirals were the cure and in this case, the cure WAS almost worse than the disease, but over time it was effective. I turned to holistic medicine once my viral load lessened and began to get significantly better, and ever since I have worked really hard to strengthen my immune system and protect myself from a relapse.

In 2018 my eldest son, who was 15 at the time, was diagnosed with PANDAS/PANS brought on his heavy viral load of the same viruses I had. Our world shifted dramatically as the illness caused him to have unreasonable contamination fears and OCD behaviors that ruled his life. With the help of some talented doctors we made it through that crisis too, but the threat of a relapse always lurked in the back of my mind.

While I would not want either of us to experience being ill like that again, those viruses were a cakewalk compared to COVID-19. They weren’t deadly, like coronavirus can be. Michigan Governor Gretchen Whitmer wisely said “COVID-19 doesn’t discriminate along state lines, or party lines, or socioeconomic lines. COVID-19 is ravaging our country.” She’s right. Coronavirus also doesn’t care if you are strong and healthy or young or middle-aged. Not everyone has the same reaction. You could have mild symptoms or none. It can strike you down within days if it feels like it. And it wants to be transmitted - that’s how this virus survives and proliferates. You can have it and not have any symptoms, thereby passing it along unwittingly, perhaps to someone who will die from it.

Feeling My Fears

So YES, I am very afraid of this virus. One wrong interaction could change my life in a horrible way. Maybe my immune system is strong enough to handle it now. But I’m not willing to play Russian roulette with my health or the health of my family. I am being uber cautious and careful as we all should be. No one wants to die. So we have to live life for a while without face to face connection or socialization. I think that’s a small price to pay to avoid the spread of this deadly disease.

This isn’t the first time I’ve felt fear like this, however. For several years I’ve been actively addressing the overwhelming anxiety I have about something happening to my family. It has been a very big fear of mine, probably the biggest fear I have, and it is also a huge anxiety trigger for me, like when my mom landed in the ICU with pancreatitis and the doctors weren’t sure if she was going to make it. Or when I was afraid that a virus or illness would take my son down again and wipe away any progress we’d made from PANDAS/PANS. But the way I feel now is different somehow. I’m afraid to do anything lest the Sauron eye that is coronavirus focus its attention on me. I feel it roaming over my house at all times, lurking, watching, waiting.

I consider myself a spiritual person, a person of faith, and I usually have a tendency to only want to look on the bright side of things - an eternal optimist. But in order to do so I push away feelings I don’t want to feel, like anger and grief and fear. I think this is a normal response but I don’t think it’s a very healthy one, for where do these unacknowledged feelings go? They become buried until the next crisis or trigger, and then they come up again, wanting to be addressed or acknowledged.

I have a friend who is a realist. She tried to tell me that she was worried about the coronavirus when it was still “just” a China issue. But I, like our country’s leadership, didn’t want to listen. I didn’t want to hear that a pandemic could come to America and become our new reality. Later when the coronavirus hit here I tried to find silver linings in our “forced” quarantine like everyone else. I thought of all the writing I could get done, projects to tackle - maybe now was the time to clean the basement? But the truth was I couldn’t do anything because I was at war with myself, although I didn’t realize it at the time. I was stuck in my emotions, hiding from fear.

I don’t like looking at the darker emotions of my psyche but I am very familiar with how they get my attention, hanging around as fatigue, depression, irritation or even headaches and stomach issues. I don’t like to think about what I am afraid of, nor am I in the habit or admitting when I am afraid or even showing it. Showing fear is scary; to me it means I am not strong. It means I am less than as a woman, that I am vulnerable and have a lack of control. Instead I push it away and escape into the dramas of television or books.

Healing and Moving Forward

Today I realized that until I address my fears they will remain stuck. And so I address my fears, face them head on by writing this blog post, admitting them to myself and to you, my readers.

I am rewarded with insight and guidance. I am reminded that feeling fear is not weak. In fact, avoiding fear is the weakness, akin to sticking your head in the sand. Fear may be part of what makes us human, but it is not something we are meant to get stuck in or avoid.

Now I understand. Keeping myself walled off from fear doesn’t mean it’s not there or that it doesn’t exist. It’s like when a child is afraid of monsters or the dark and puts a blanket over herself to hide. Even though she is still in plain sight of said monsters, she feels better because SHE can’t see what is out there. She’s not necessarily hiding from any perceived danger, she is hiding from herself, from her fear, because it makes her feel safe.

In writing this post I have learned that giving your fears a voice takes the charge out of the actual emotion. It releases them from your body and mind. There’s a saying I like to tell my kids: “You can’t always control a situation but you can control how you react to it.” This is good counsel right now because we don’t have any control over the spread of the pandemic right now. Yes, it is certainly bringing up a lot of fear and anxiety but we don’t have to live subservient to those emotions.

My friend posted these wise words from her nephew, Joshua Cate, who is riding out the pandemic in South Korea: “Don’t live in fear… did you know there are other things you can live by? Live by awareness. Live by respect. Live by responsibility. Live by the fact that what you do can either help stop this virus or help it spread. Live in the knowledge that your actions can cause yourself, your loved ones, your family, your friends, your coworkers, and all those whom you come in contact with to either be safe or be sick.”

I’m not advocating living life in fear either, because that’s not what I’m about. I’m saying feel your fears, don’t avoid them. Give them a voice, either by writing them down, speaking them out loud, or drawing pictures of them. Do what feels healing to YOU. Then release them. Afterwards, hopefully you will feel like I do today, lighter, stronger, and ready to get on with my life in quarantine.

In the days, weeks, possibly months to come I hope and pray I’m not adversely affected by this virus and I hope and pray, dear reader, you’re not either. Much love to you all. Thanks for reading.

Feel free to share your fears with me if you’d like either by commenting on this post or sending me an email. After all, we’re all in this together!

Finding Joy in Ordinary Moments - A New Year's Eve Tale

I write this in a post-New Year's Eve not-enough-sleep fog as I stayed up way too late last night. My hubby and I didn't do anything special for New Years' Eve; in fact we stayed home like we usually do, but thanks to an impromptu party, an impressive act of mom-ness, and a surprising act of gratitude, our transition into 2020 was pretty epic (IMHO).

New Year's Eve 2019 1:00 pm - it was our first day back after our trip to Wisconsin to visit Jeff's family. We didn’t really have any plans for the evening and all I really wanted to do was try to reach my goal of reading 100 books in 2019. Still in my pajamas, I was halfway through book number 97 when I heard a screech from Nick's room.

"MOM!!" he called. "Leia used my room for her litter box again!" I sighed and put my book down, figuring that my reading time (and cherished slice of peace) for 2019 was over. Although the damage wasn't as bad as the time several years ago when the cat had wrecked the top mattress of Nick's bunk bed (in her defense both times she was trapped there by our other cat - a very temperamental and alpha female who liked to take over her sister's litter box even though she had her own), several of his favorite hoodies were soaked. I mentally cursed myself for not separating the cats while we were in WI as we have done ever since the bunk bed incident, but what was done was done. I guessed this was the universe’s way of telling me to get up and get my day on. I had been successful in getting cat pee out of clothes in the past but was out of the secret ingredient I needed, so, two teens in tow, it was off to Kroger we went.

I needed to go to the store anyway to get food and snacks for our New Years' Eve dinner/celebration. Both boys were having friends over and I hadn't even figured out what to have for dinner that night. Luckily avocados were on sale (two for a dollar!!) and inspired me to make guacamole, which then inspired a taco bar - all teens like tacos right?!

One hour, $175 later and loaded up on Doritos, Fritos, soda, chips AND a version of the secret ingredient I wasn't sure would work, we returned home. I turned into a whirling dervish as I frantically cleaned the house before our guests arrived. I know they are only teenagers and as my kids always tell me their friends don't care or even notice if the house is tidy or not, but I think everyone deserves a clean toilet.

Four hours later, satiated from a very successful taco bar that teens and adults loved, I finally turned my attention to the pee-soaked clothes. I removed them from their hours-long vinegar bath, put them in the washing machine with some Borax and the secret ingredient - Molly's Suds for Cloth Diapers. I closed the lid, said a little prayer to the laundry angels, and walked back into the kitchen. It was 8:00 - four hours until the New Year. The dishes were done, the house was clean, the kids were sequestered in their spaces watching memes and playing video games with their friends and Jeff was, well my husband was asleep on the couch. So I did what any other self-respecting bibliophile would do - I sat next to him, picked up my book and read while he napped.

When Jeff awoke we invaded the older teenagers' space to play Tetris and Galaga on the arcade and then I taught him how to play cribbage (again). We were both pleasantly surprised when said teenagers invited us to play a game of 31. I said a silent prayer thanking whoever is in charge for giving me a son who at 16 still likes to have fun with his parents and for sending him a friend who is willing to play games with him and said parents on New Years' Eve.

When 11:30 came we turned on Dick Clark's New Year program and invited the younger teens into the living room to watch Post Malone perform, a favorite of theirs. I wish I would have taken a picture of them - Nick wearing his new Lund hat and his yellow and black checkered sunglasses, rocking out and feeling totally comfortable in his skin (a feat he's struggled with all year) while sandwiched in between his two best friends that are girls.

They returned to the party in his room after the performance, pumping their own music loud and proud. When the ball dropped on 2020 Jeff, I and the older teens toasted the New Year with sparkling cherry juice in champagne glasses. The young ones started an Instagram Live party and when I "joined" I was surprisingly welcomed. "Hey, my mom's here!" I heard Nick exclaim.

The elder teens finished their drink and retreated downstairs to write a Dungeons and Dragons campaign and the girls prepared for their parents to pick them up. I remembered the moment of truth waiting for me in the washing machine. As I pulled the hoodies out of the machine I put each one up to my nose and sniffed deeply. All I could smell was the scent of freshly washed clothes - no cat pee! A New Year's miracle!

As I put the hoodies over the banister to dry, the one remaining girl's mom arrived to pick her up. The teen thanked me for having her over and with a small unsure smile held out her arms for a hug - another New Year's miracle, for most of Nick's friends don't take the time to be thankful for being welcomed into my home or fed or driven around, much less hug me for it. I shut the door with a tear in my eye, for her simple act of gratitude had touched my heart, and, if I'm being honest, given me some hope for those Zoomers.

To me New Year’s Eve has always been an overrated holiday – it has never lived up to its expectations of being the ultimate party night, for there’s only so much one can do on a cold winter night. However, last night was filled with a whole bunch of ordinary moments that to my surprise brought me a tremendous amount of joy. If my thrill-seeking 16-year-old self could see me at 50, choosing to spend New Year's Eve at home, playing games and spending time with her family I know she would have one word for me - LAME. "Where's the excitement in that?!" she would exclaim. But my 50-year-old self would argue with her, insisting that these seemingly simple moments, of providing a safe and nurturing hub for my kids and their friends to have fun in, of playing games with my husband, or grabbing a quiet moment to get lost in a story, even taking pride in a laundry moment well-done, these are the moments in my life that bring me happiness and there's nothing LAME about that. Where she once had to go chasing her joy I have realized that I can ALWAYS create it for myself, especially in the ordinary moments.

Before last night my sole/soul goal in 2020 was to bring more joy into my life, to do more things that I like, just for me. My reasoning was that I have spent the last 16 years being and doing everything for everyone else and have sadly neglected my own needs. But I see now that while I do need to create more joy for myself I can’t stop creating it for others. Creating joy is a superpower and it shouldn’t be kept or hoarded for oneself.

Today I woke up to 2020 and the sun was shining on a new layer of snow that had fallen overnight, blanketing everything in a crisp, cold freshness. A new year, a new decade, a new month, a new start is upon us, all the trials and tribulations of 2019 washed clean like the cat pee from Nick’s hoodies. And I am grateful!

I am grateful for friends and family, for my children and their friends. I am grateful for being able to process my feelings and experiences into words so that I can make sense of my them and share my insights with you, my dear readers who I am also grateful for.

So Happy New Year to you! I hope your year is full of gratitude and joy and wonder! I encourage you to join me on my quest for joy. Feel free to post in the comments what fills you with joy and gratitude!

Letter to My Teenage Son Who is Grieving

I heard you from the dining room. At first I thought you were laughing. Then as I listened closer I realized that those ha ha ha’s were actually sobs. You were crying, sobbing your heart out, the first I’ve heard since you’ve become a teenager. You don’t wear your heart on your sleeve anymore – you try to keep your emotions close, and I’ve learned to respect that.

What could be making you cry? I wondered. Five minutes prior you walked through the door with your usual after-school "OK Boomer!!" shout. What could have happened to you in the 30 minutes since school ended? 

At first I thought you were crying because of girlfriend drama, but as I came into your room and looked at your grief-stricken face I realized it was something more. I put my arm around you and asked what was wrong. You didn’t pull away like you normally would and it was then I knew something horrible had happened.

“My friend died,” you said between sobs.

The realization hit me like a brick and I started crying too. Crying for you to have lost a peer, a friend, at this young and tender age of 14. Crying for your classmates for this is a hard and unimaginable loss for you all. Crying most for your friend’s parents and family because they are going to have a difficult road ahead. 

Breathe.

We cried together until we were out of tears. Later we talked about your friend and her death, about how tomorrow at school would be a hard day. You kept to your room for the rest of the night, connecting with your friends on your phone. I kept looking in to you to see if you needed my support or a hug or anything. You wouldn’t let me hug you - the one I gave you earlier was the only one you were going to let me have.

I wanted to tell you so much but I just didn’t have the words. 

At 9:30 I went into your room and saw that you had fallen asleep curled up around your cat. Your headphones were lying by your head and your phone was probably buried under your arms. I pulled the covers around you as best as I could so you wouldn’t be cold and I stood there watching you for a minute, soaking you in, loving you on my terms. On a normal night I wouldn’t get this chance, for you no longer let me tuck you in or hug or kiss you goodnight. But on this night I gave you a kiss on the forehead as I tucked you in, letting my love for you out through my actions. I suspect you weren’t really sleeping, but pretended to do so because you needed this from me.

This morning you came into the kitchen wearing a blue hoodie.

“A bunch of friends said to dress in blue and green today,” you said, “for Alexandria.”

You kids! So full of your own wisdom and ways to grieve. As we drove to the bus stop I was glad for the darkness of morning, so you couldn’t see my face tight with grief, the tears as they coursed down my face.

As I dropped you off I was unsure of what to say. I thought about telling you to be strong and brave as you faced the day, for that’s the message society tells us – to put on a brave face and push all our feelings down. But being strong and brave for others means we just push our grieving inside where it will grow and stagnate. 

“Have a good day,” was not appropriate but “I love you” was. That was the only thing I could say. But what I wanted to tell you was this:

This is why I grieve. I grieve that at 14 you have to face death head on, that you have to face the death of a friend. That you have to feel all the feelings of true loss, all the emotions, and start asking questions that have no answer, those questions that I too am grappling with, the simplest of which is “Why?” You’ve seen death before, when he took your Grandmother in January, or your Great-Grandmother a few years ago. But to a young person, that type of death is kind of unreal. It’s not in your face every day, as this death will be.

Alexandria was your friend and you’re going to feel a loss. Every day when you are in 1^st hour band and she is not there to play her part on the saxophone you will feel it. You will feel it in science when you look across your table at an empty seat. When you see friends and teachers crying, you will feel it. And I hope you don’t keep it in. I hope you cry along with your friends. I hope you take my advice from this morning to just be real.

As a mother I cannot fathom what her parents are going through. It is every parent's greatest fear to lose a child and it causes a pit in my stomach to even think about it. So I hope you understand that I’m going to be hovering over you closely, showing you as much affection as you will allow me to. Because I am grateful that you are alive. And I want to love every precious second of you.

We can’t see into the future and know how long we have on this earth and how much time we will have with our friends and families. All we can do is to live in the moment.

As you process your feelings I have some advice on how to handle your sadness. Don't be afraid of grief. Facing grief head on is scary, but also necessary. You can run and hide from it but eventually it will catch up to you and force you to deal with it, perhaps in the form of depression or illness. Grief can be a friend and show you how to be real and truly present in life. Grief can show you true healing if you let it.

That’s the silver lining here, son. To see this difficult time of your life for what it is – a wake-up call. A call to be thankful for everyone and everything. A call to be grateful for your life, even the parts you think are hard, for in the big picture of things they aren’t as hard as dealing with this death. And so, I encourage you to forgive and to be kind and compassionate. Love fiercely your friends and family.

Hard things happen in life - that's a fact. Some things we are not prepared for and could never be, and if grief were not there we would all be walking around numb or angry. Grief softens the anger, it makes us human. 

So sit with grief as long as it takes. Know that when grief comes it is time to be still and listen and feel:

Feel all the feelings that are climbing their way out of your gut. 

Open your heart and love a little more.

Be vulnerable. 

Cry. 

Feel sad (and you will for a while). 

Be brave enough to wear your heart on your sleeve, for that is true bravery.

I am sorry for your loss. I cannot replace your friend but I can grieve with you. Know that I am here for you in whatever capacity you need. And that I love you. Always and forever.

Love, Mom

Lessons From The Tree

The Tree circa 1975 - photo credit Jeff Wurges

One of my most cherished childhood memories is an adventure I had with my dad the summer I was six years old. I met Dad for lunch at his office in the music department of Oakland University. He told me we were going on an adventure, a short hike. Was I game? Or course I was! Our destination - my dad's favorite place, a very special tree. I didn't know it then but Dad was about to teach me everything important about life in three short but profound lessons.

From Varner Hall we trekked over lush green hills full of tall grasses until we reached a small park surrounded by pine trees. As we reached the edge of the park I caught my first glimpse of The Tree - a grand maple set on a hill in the middle of a large meadow, its majesty commanding and watching over the field. A large forest surrounded the area and behind the tree was a marsh full of tall, brown cattails. The sky was a brilliant blue and the air was heavy with the sweet smell of Queen Anne's lace.

Lesson Number One: You are never too old to feel and express joy.
As I started to walk towards The Tree Dad stopped. This was no ordinary tree, he told me, so we had to approach it in an extraordinary way. "You have to frolic," Dad said. "Watch!"

Frolicking occurs when your heart sings and the melody comes up and out through your fingers and toes, causing you to play and move about energetically and excitedly. I watched as Dad swung his arms back and forth, propelling his legs forward, so that he was running and leaping at the same time. I joined in and so we frolicked down the valley, running and jumping with glee on our way to The Tree. How celebrated The Tree must have felt as we ran to her in that happy-go-lucky manner. To this day there is an unspoken rule between Dad and I that if we come upon a field or meadow we must frolic our way through it.

Lesson Number Two: All life is sacred and it is important to give thanks.
When we arrived at The Tree, Dad gave me my first lesson in how to hug a tree. He taught me how to extend my arms and press into The Tree so my whole body was supported. He taught me to turn my head so my cheek rested on The Tree's smooth skin, close my eyes, and breathe. Just breathe, appreciate, and love The Tree.

Then Dad helped me to climb The Tree, lifting me up into a low-hanging bough, watching as my long legs wrapped themselves around a branch, never letting me go until I was securely attached. I'm sure Dad would have liked to climb The Tree too but he knew he was needed on the ground to catch me if I fell, because that is what parents do for their children.

Lesson Number Three: The present moment is where we find our peace.
Dad passed my picnic lunch up to me - I remember it was cucumber sandwiches with mayo on homemade wheat bread that fell apart, and soft, black plums that stained my palms with sticky, pink juice. I laid back into The Tree's very supportive branch and ate my lunch, listening to the cacophony of crickets keeping time with the slow summer beat. I gazed from my perch out over the valley. Time had stopped and the outside world disappeared. If I'd had any worries at age six they were no longer there. There was only this moment, in The Tree, with my dad, and I was at peace.

That day my dad's special place became mine also. My dad and I visited The Tree often, sometimes bringing Mom and my brother to frolic in the open meadow. As a young adult, I attended Oakland University and visited The Tree when I needed a time out from the hustle and bustle of student life. It was a place I could come and sit and be one with nature as I listened to the crows call out to one another and the crickets chirp out their steady beats. I could lay back and daydream as I watched the clouds in the sky blow across the horizon. It was a place where I could be at peace with myself.

When my first-born son Michael was two and I was pregnant with Nick, Dad and I took him to The Tree. It was an early August summer day, not unlike the first day Dad introduced me to The Tree. In keeping with tradition, we taught Michael to hug The Tree and how to sit underneath her branches and enjoy the stillness and peace she provided. 

One fall after Nick turned three, Dad and I took the boys to The Tree. The University had installed a new parking lot and a new Facilities building so we weren't sure she would still be there or if we could even find her, but we did. The late afternoon sun was glorious as we frolicked towards the majestic maple. We taught Nick how to hug The Tree and Michael learned how to climb her. We threw her leaves into the air, leaves that were as golden as the sun's yellow rays. The air was magical that afternoon and it is still one of my most favorite days.

The Tree Circa 2008

Then life took over and we stopped visiting. I remember the year when Michael was nine or ten I decided to reacquaint him with The Tree, but five years had changed the area - there was no one to maintain the land and the meadow had disappeared, overgrown with trees and bushes and grasses. I think we caught a glimpse of The Tree but could not get to her without some serious bushwhacking, which my son did not want to do that day.

At the end of this past summer, I invited my dad to go visit The Tree. Forty-four years had passed since our first visit and we were no longer spring chickens, but he was game. We weren't even sure if The Tree would still be there. So much had changed since the last time either of us had been - what was once a forest was now a student parking lot. But glory of glories, we found the dirt road that led to the park and found the ring of pine trees that now towered into the sky. That gave us hope, but we soon discovered that our meadow was no more, now overgrown with towering aspens and multitudes of crab apple trees and some version of flowering mint or oregano that made each step smell heavenly.

There was too much overgrowth for us to head straight through to The Tree, so we circled east, then south, bushwhacking through the weeds and prickers in search of our tree. Every now and then we would stop and breathe in the heady floral scent of Queen Anne's lace.

Our memories worked overtime, trying to place the location of The Tree in this jungle. During our trek we discovered many new additions to the area - a hiking trail maintained by an Eagle Scout, a golf course, and lots and lots of bushes, trees, flowers, and bees - but we did not find The Tree.

Finally we found the area that had been the meadow. As we looked around we saw a few tall aspens but no giant majestic maple. However, as we walked further we came across a large assortment of dead branches lying across the foliage.

Resting Place of The Tree - 2019

"This must be it," Dad said as he looked around. I didn't want to concede - I really wanted our tree to be alive, but we had walked the perimeter for an hour and there was no sign of her. Dad gently broke off one of the branches, a reminder of The Tree and all she had signified. We stood in silence for a moment, lost in our own memories of The Tree, giving thanks for her place in our journeys.

I was grateful for the lessons she had shown Dad so he could share them with me, for they have turned into the principles in which I live my life: remembering to be joyful, to revere life and to give thanks for every moment, and to know the present moment is where peace lies. In turn, I passed them along to my sons when they were ready, upholding Mother Nature's circle of life. What I was most grateful to her for, however, is the bond she created between my Dad and I. Such memories she helped to foster and create!

Dad and I trekked out in silence, Dad using the branch as a walking stick to help him navigate over the raspberry branches and burdock root plants. I was sad The Tree was gone - she had come to be a friend, one I could visit when I needed a little space or an infusion of peace, and believe me, as the mother of two boys I required a lot of both! However, I knew she had lived a most wonderful life and would someday soon be part of the earth again and perhaps rise once more, for Nature is ever evolving. Maybe by the time I have grandchildren she will have returned. One can only hope. For now, however, I am content to recall her magnificence from memory:

It's summertime and the sun is high overhead. I am nestled a few branches up in The Tree. Dad is sitting at its base. I gaze out around at the meadow before me. Nikki, our dog, chases birds and squirrels in the sunlight as we watch. The air is heavy with humidity and fragrance. Silence surrounds us - an occasional bird waking from a midday nap calls to us. Peace is upon us and I breathe it in.

The Last Day of Summer

I’m sitting in the back seat of Jeff’s truck next to Michael. Our bathing suits are on, the boat is hooked up, and we’re ready for one last ride in the boat and one more swim before school starts.

Outside the truck the clouds are looking dark and ominous. I look at my weather app and it says that rain is imminent in the next 66 minutes. I hear what I think is thunder right before Jeff gets into the truck.

Part of me wants to throw in the towel (literally!) and cancel the ride. Even though I have the laundry done, there’s dinner to prepare, backpacks to fill, schedules to create – lots to do before the first day of school. But the other part of me says screw it – it’s Labor Day and all we have done today is labor. In actuality most of what we have done this summer is labor, with a few boat rides sprinkled in here and there and one get-away to Wisconsin and Minnesota. If we get wet it doesn’t matter, after all we’re on a boat on top of the water, which is also wet. And if a storm rolls through we’ll pull the boat in.

Jeff echoes my sentiments and off we go. After all, a boat ride on Labor Day is tradition. By the time we get the boat backed into the water, Murphy’s law is being proven – it has started to sprinkle. But again, we plan on going swimming, which is wet, just like rain. Every other boat is rushing in – they’ve seen what the radar looks like. But I remember last Labor Day, when we decided to take the boat out. We had just backed in when a patrolman came over and told us that a huge storm was headed our way within the hour. My gut said go anyway so we decided to take our chances. My gut was right - the storm passed us by, not a drop of rain was shed, and we had a great time swimming.

Today we are the only crazy people launching a boat in the rain. I hope we won’t get caught in a downpour – don’t we deserve a little fun time before all the craziness of the school year starts?

As the boat carries us out to our swimming hole, I ruminate on my reluctance to let go of summer. I mean, no one likes summer vacation to end, but usually by the last few weeks of summer I am ready for routines to begin and peace from bickering kids.

This year, I’m not ready.

Maybe it’s because I know that winter will soon be here, for there is nothing that makes time go faster than a school year. September begins with curriculum nights and football games; October is conferences, cider mill visits, and Halloween. In November we begin to pull out warmer clothing and winter jackets and then Thanksgiving break is here. One month later is Christmas and New Years, and the days of summer with boat rides, sunbathing, bike rides, and reading on the deck are distant memories.

Winter is not my favorite season and so that is a plausible excuse for not wanting summer vacation to be over, but I don’t think that’s the real reason. The truth lies in my heart, and my heart knows that these summer days with the kids are coming to an end. Next year, the summer before his senior year, Michael will probably (hopefully!!) have a job and it will be his last summer before reality really kicks in and we have to start thinking about college visits, college applications, college, college, everything COLLEGE!!!

I’m not ready.

This summer was different, because it was my first with two teenaged boys. It was my first summer where time was not dictated by me but by the boys, who spent a lot of time staying up late and sleeping in and getting together with friends. It was the first summer I was able to give them some freedom to determine and make their own plans for the day.  It took me a long time to be able to give them that freedom without feeling anxious (watch for the post about that – it’s coming!!) but because of it we had a very harmonious summer. And I’m not ready to replace that with all the anxiety that comes with school – early morning rising, homework, lack of free time.

I remember as a younger parent with two active kids, talking to an older couple as we waited for our table at a local restaurant. They had teenagers and I could see as they watched our kids they were remembering their children when they were younger.

“They grow up so fast,” the dad said.

“Savor every moment,” the mom said.

I smiled and nodded and brushed their words off because the teenage years seemed so far away from the stage I was at with my needy elementary school-aged children. At the time all I really wanted was one moment of peace and quiet. Now, however, I am in that couple’s place and I have many moments of peace and quiet.

But they were right. The time with my kids has flown by so fast. In two years I will be the proud parent of a high school graduate and three more after that I will be the proud parent of two high school graduates. It seems inconceivable to me. I can’t stop time and I wouldn’t want to. Part of me is excited to see what these two young men are going to do with their lives; the other part can’t imagine daily life without them.

I’m not ready, but it’s ok. I’m going to take that wise couple’s advice. From here on out I’m going to savor each and every moment. The first task on my list is to enjoy this last day of summer vacation, clouds, rain and all.

The boat is now anchored in the deep water. The rain has stopped. Michael and I stand on the back of the boat, toes grabbing the edge. In tandem we jump into the cold water.  It is cold but refreshing.

We swim until thunder cuts our antics short and chases us into the boat. We are deluged with rain on the way to the dock, but it’s ok, we are already wet. 

Our PANDAS/PANS Journey

When you hear the word “panda” do you think of the cute little black and white animal or do you cringe in panic? If it’s the latter,then maybe you’re like me and have some experience with PANDAS or PANS, a disorder that affects children of all ages and causes behavior, emotional, mental, and physical challenges including tics/debilitating OCD/anger and rage.This disorder has turned my world and my family’s world upside down. I have not been able to write about it until now nor have I spoken about it to many people. But now it is time to tell the story about our journey with PANDAS/PANS. This debilitating disorder will be featured on 20/20 tonight. If you're not familiar with this disorder that attacks so many children please read on. Information is power and perhaps you can help a family get the help they need to diagnose their child. It all started the summer of 2012, the year Michael turned 9. At the beginning of August my happy-go-lucky child became angry, tired, and depressed, and began hitting himself in the head. Nothing seemed to have triggered this behavior, although he was suffering from extreme allergies at the time – runny nose, swollen eyes, sneezing. Even he couldn’t tell us the reasoning behind it, just that he was very sad. It was very scary. Upon the recommendation of our pediatrician Michael started seeing a psychologist. He talked with her about school and friendships but even she couldn’t get him to open up about his feelings of low self-worth. We began seeing a homeopath, for I had seen miracles happen from this type of “energy” medicine (I had used homeopathy to heal my own allergies). Between the visits to the psychologist and the homeopathic medicine we saw a big improvement in Michael’s mood by the middle of fall. He wasn’t having suicidal thoughts anymore but he still struggled with issues of self-worth and self-esteem, and he became an extreme perfectionist out of nowhere. Irrational fears of ants and blueberries appeared, sometimes sending him into a panic attack when he encountered them. As his parent I was continually stuck in panic or dread or worry myself, and spent countless hours researching, desperate to get my happy, worry-free child back. Over the next year our house passed around a lot of illness: I was ill with chronic fatigue caused by Epstein Barr Virus and a host of other viruses, strep throat, and various flu bugs. At the time I was amazed at how well Michael fought these all off. He rarely got sick and when he did he might be down for only 24 hours. What he did begin to suffer from, however, was a lot of weird, unrelated symptoms, like severe gas pains and lower abdominal pain, strange one-day fevers, pains in his knees and lower legs (that were not growing pains) and a lot of emotional lability. The summer of 2013 Michael returned from a week at Boy Scout camp tired and depressed again and filled with what seemed to be allergic inflammation. At a trip to the pediatrician our doctor suggested that Michael might have PANDAS or PANS, something I’d never heard of before. PANDAS stands for Pediatric Autoimmune Neurological Disorders Associated with Streptococcal Infections. It's a disorder that causes behavioral changes due to a strep infection gone awry. In a normal child with strep the immune system produces antibodies to protect itself and fight off the infection. In a child with PANDAS, the antibodies see the immune system as foreign and attack the child's body and brain instead, causing high amounts of inflammation and a myriad of symptoms such as obsessions, compulsions, and tics. PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) occurs when a trigger other than strep (such as an infection or allergic reaction to something in the environment) causes symptoms, such as abrupt-onset OCD, anxiety, emotional lability, aggression, behavioral regression, deterioration in school performance, sleep disturbances, and sensory sensitivities (from www.Pandasnetwork.org). At the time it was a relatively new disorder but our doctor knew of a pediatric immunologist that might be able to help. After meeting with us and reviewing Michael’s history this doctor told us he didn't think Michael had PANDAS because he didn't have any OCD or tics that so commonly present as PANDAS symptoms, nor did he have a history of strep infection. Instead he thought it might be a sleep disorder. So he prescribed a sleep study, the results of which pointed to a mild sleep apnea. We were then referred to an ENT specialist, who concluded that Michael didn’t have sleep apnea and his tonsils were fine but perhaps we should look into thyroid. After another visit to our pediatrician and some more bloodwork we were back to square one as the thyroid was fine. It was like this for the next several years, swinging from referral to referral as strange physical manifestations came and went. The turning point came when Michael turned 11 and received a DTAP vaccination at his physical. Two days later he was in the kitchen getting ready for karate and he began making strange movements in threes. He would clap his hands three times, step three times and then repeat a statement three times. His pupils were dilated and his eyes were glassy. We then turned to another doctor - a pediatric neurologist, who also ruled out PANDAS (again, because Michael didn't have any OCD or tics) but suggested autoimmune encephalitis was the cause. Because Michael's symptoms fluctuated so much and didn't cause any "major" detriments to his daily life, the doctor didn't want to prescribe any treatment unless we saw a worsening of symptoms. I had always thought Michael had a good immune system because whenever he got sick he was well within 24 hours. What I didn't know at the time was that while his body was fighting the illness, the brain and nervous system were putting up a bigger fight. As a parent I knew there was something that wasn't right and while I felt defeated that all of these "expert" doctors couldn't figure out what was wrong I knew it was time to seek a more holistic approach. At this time our pediatrician diagnosed Michael with anxiety. She was just starting a separate wellness program that used yoga, nutrition, massage and mindfulness to help calm and retrain the nervous system and lessen inflammation. It was a year-long program and involved lots of appointments and commitment from both Michael and myself. We saw many results from it, in particularly an extreme handwriting change, but when it was over Michael (now a 7th grader) wanted nothing more to do with doing the yoga exercises or the meditations. And so I let it drop. I was dealing with my own healing crisis, the fluctuating flares of a chronic Epstein Barr Virus infection. He was involved in band at school and seemed to be thriving, although he kept having issues with friends and the increased homework of 7th grade was really stressing him out. During the summer of 7th grade he was chosen to attend a week-long outdoors camp with select boys from his school. It was a great experience and he came out of it happier than I'd seen him in a long time, but also with a physical relapse - he was so inflamed with what we thought at the time were allergies from being outside. We treated it with homeopathy and herbs and eventually it subsided, at least on the outside. What I was to eventually learn was that his brain was still very much on fire. That fall he started 8th grade. He seemed to be in a good place and so I took an outside job for the first time since I had become a mom. It was temporary - slated only to last for 8-10 weeks - but it was the first time in a long while that I'd had something other than the kids or my writing to focus on. The job went well and so did life outside the job - somehow I managed to pull off working, making lunches, planning meals, doing laundry, and keeping the house tidy. The boys spent a lot of time alone after school and seemed to relish having some independent time, but looking back I suspect that the sudden change was too stressful for Michael. A few weeks before Christmas, Just as my job was ending, my mom got very sick with pancreatitis and ended up in the ICU. It was touch and go for a few weeks and I was suddenly not at all available for my family, spending every moment when I wasn't sleeping at the hospital. The boys weren't allowed to see their grandmother, nor was their grandfather available to spend time with them. So all of a sudden three of the people the boys spent a lot of time with went AWOL. Looking back I'm sure the boys picked up on my fears about the seriousness of my mom's situation and had built up quite a bit of stress themselves. I normally have a good gage on their emotional state and we talk about what's going on, but I just didn't have the time or energy. The good news is that my mom got well and was home by New Years' Eve. However, not everyone came out of the situation unscathed. A few weeks into the new year I noticed Michael's hands were red and scaly up to his wrist. I asked him about it and he admitted he'd been washing them a lot ever since Christmas because he was afraid of being contaminated by his younger brother, who at the time was 10. When asked what the contaminant was Michael could never say, but would adamantly refuse to touch his brother or anything his brother touched, or even sit anywhere his brother sat. He wouldn't even use the same bathroom. This made life very difficult and very scary for everyone in the household. Tensions were at an all-time high. Physical issues we could deal with because we had experience with them but this new mental invader of OCD was totally out of our wheelhouse - it was irrational and thus you couldn't deal with it as such. Our son was changing yet again in front of our eyes and I had to wonder if what we were seeing was PANDAS, despite what all the doctors and specialists had said. After another visit to our pediatrician, who also suspected the same thing, we returned to the pediatric immunologist we had seen several years before. By the time we were able to see him Michael had been in art therapy for several months and was working on strategies to work through the OCD and contamination fears. I felt like it was helping. So, when the doctor told me yet again that he didn't think it was PANDAS because he wasn't stuck in a constant state of OCD and that it seemed like the OCD was getting better, I felt relieved. I didn't want to believe it was PANDAS. I had been browsing the PANDAS Facebook sites and reading the stories of other parents whose children had PANDAS, all of whom seemed worse off than Michael. I didn't like the thought of having to treat Michael with long-term antibiotics or subject him to plasmapheresis or IVIG, the touted treatments for PANDAS that didn't always seem to be the magic cure.

Even though the doctor didn't think Michael had PANDAS he was concerned about the high levels of inflammation in his body, the one constant thing Michael had had going for him for the past several years. And so we had more bloodwork done to compare it to previous results. I waited and waited for the office to call me and called multiple times to get the results myself but no one ever called me back. In the meantime, Michael's condition worsened, brought on by stress. It was the end of 8th grade and he became an emotional mess. In a two-week span he had end of the year tests, band festival, and try outs for high school band. So it shouldn't have surprised me when I received a phone call from the office telling me that during a written portion of a test Michael had melted down and cried in front of his peers, an occurrence that was happening with more and more frequency. Soon after school was out Michael caught what we thought was a cold. He was sniffly and had a constant cough that wouldn't go away. It was still there at the end of the summer when we FINALLY got in to see the pediatric immunologist. He apologized for blowing us off and went right to work in explaining the results of the bloodwork that he had done 4 months prior. The inflammation levels hadn't changed much and now he was concerned about the cough being due to mycoplasma pneumonia bacteria, a trigger of PANS. He wasn't ready to diagnose PANS just yet - he wanted to do a PET scan of Michael's brain to see where all the inflammation really was. And so we waited some more while he and his office tried to find the funds for the test. I was getting tired of being patient but Michael seemed to be acting and feeling better so I stayed content with continual research of all things neurological. Then the first panic attack hit. It was the week before high school and he was getting ready for his first marching band practice. All of a sudden he came into my room crying and working himself into a frenzy. I had seen this behavior many times before, especially when he was stressed out about doing something new. But this time he was literally frozen in fear. He couldn't move, couldn't sit down, could only yell and scream and cry. All I could do was talk him through it in a calm voice (even though I certainly didn't feel calm at the time!). Little by little I got him to move until he could sit down on the bed next to me. It was exhausting for both of us. It was a rough couple weeks but once he got through the newness of marching band and high school and fell into a daily rhythm things calmed down. I knew we had moved into new territory though and couldn't wait to get that PET scan to see what it showed and to get Michael on some sort of treatment plan. I just wanted my happy-go-lucky child back, free of stress, anxiety, and inner pain. Throughout October I called frequently to check on the status of the PET scan. The immunologist's office kept telling me they were still waiting on paperwork but it looked like it was going to happen. They gave me crumbs of hope and I kept waiting. Finally in November I got my answer but it wasn't the one I had been hoping for. The office called to tell me they weren't able to get the funds for the PET scan after all and the doctor said he didn't know what else he could do for Michael. I was crushed, rejected by this doctor I had placed all our hopes on. Now what? I was still dealing with that rejection when everything changed. Michael started a swimming unit in gym and was exposed daily to chlorine, a known inflammatory agent for PANDAS kids. He started having a severe uptake in OCD symptoms and his contamination fears grew - now they weren't fears about his brother, he was afraid of being contaminated by his peers at school. He refused to use the bathrooms at school and created a device made out of folders to put over his desk to keep himself from being contaminated. He was being taken over by pure irrational thought and I felt utterly helpless as I watched him struggle. He started wanting to stay home from school and it was all we could do to get him there every day.
Then one morning after Thanksgiving break he got stuck again. He couldn't move from where he was standing in the kitchen with his backpack on. Desperate we pleaded and prodded but he just couldn't move, nor could he break away from the contamination loop in his head that said school was a dangerous place. I knew that you can't reason with OCD but I certainly tried. I could see in his eyes that he was frantic and scared inside and that was heartbreaking. He didn't want to be like this but he just couldn't help it. He didn't feel safe at school nor did he feel safe at home or in his own body.

I had made an appointment in December with his pediatrician after I received the news that we wouldn't be moving forward with the immunologist. Now I realized we were in emergency mode and so I made an appointment with her for the following day. Michael rarely complains of feeling physically unwell but the morning of his appointment he complained of a scratchy sore throat. I have to admit I was sort of elated at the prospect that perhaps it could be strep because then a diagnosis of PANDAS could be made and we could get him on antibiotics and see if they would make a difference.
The doctor did a strep test as well as prescribed bloodwork to check inflammation levels. She felt his glands were a little swollen so she also tested for mono. When the bloodwork results came in a few days later mono was confirmed. But that didn't explain his behavior. And since the only treatment for mono is rest and fluids, I was again back to square one with nothing to treat his behavioral, mental and emotional state. I knew I needed some new options. I reached out to a Michigan PANDAS Facebook group and received several referrals to physicians that would be able to diagnose and treat PANDAS, if that was indeed the root cause of his issues. I called one of the doctors, a highly revered and recommended functional neurologist, and was told the very earliest appointment was one month away, in early January. I didn't want to wait that long but made the appointment anyway. Then I went to Plan B. Prayer. I prayed long and hard for help in finding the right and perfect doctor who could help Michael and get him in ASAP. Our family homeopath was dealing with a crisis of her own and couldn't help us so I searched the internet to see if I could find someone else. Anyone who could help my son. My prayers were answered immediately. One of my internet searches listed a homeopathic/naturopathic doctor not too far from our home who specialized in treating PANDAS/PANS. When I called to find out more I was elated when he told me he had a cancellation and could get Michael in the following day. Hallelujah!! We spent two hours with him detailing Michael's life over the past 6 years. When all was said and done we had a diagnosis (yes it was PANDAS/PANS) and a plan. Dr. S prescribed a homeopathic remedy that was perfect for Michael as well as some supplements that would help to naturally treat his active mono infection (berberine complex) as well as reduce the inflammation and help with the OCD symptoms (NAC, Omega 3, probiotic). He also suggested Michael go gluten/dairy/sugar free to help calm the inflammation. For the first time in a long time I left a doctor's office feeling positive about the future. I could see a ray of light shining through a dark tunnel of fear and hopelessness. And the treatment started really helping Michael. Every day we saw improvement. As we shared Michael's story with his high school counselor and teachers we were met with compassion and grace, not judgement or ridicule, which was a true blessing. As January approached I struggled with whether or not to cancel Michael's appointment with the functional neurologist. As the mono healed, Michael was beginning to feel better both physically and mentally but I still felt like we were walking on eggshells - never knowing what could set Michael off. My mom encouraged me to get a second opinion and so I kept the appointment. After listening to our story he was quick to tell us that yes it was PANDAS/PANS, and the treatment he recommended was a three-month course of antibiotics and antivirals and the addition of 5htp, a supplement he recommended to help with sleep and anxiety. Even though we were already treating Michael naturally and even though I had a not-so-great experience using antivirals to treat a past EBV infection, I didn’t want to leave any stone unturned so I filled the prescriptions. My husband had been out of town since the day after Christmas and was scheduled to be gone for the next several months so it was up to me to take on the role of single mom/physician/mental health specialist. After three weeks of the antivirals and antibiotics Michael started getting worse. He started having sleep issues and his anxiety was ramping up again. He started not wanting to go to school. He told us that he couldn’t play his bassoon in band anymore because he was overly sensitive to the noises. In a moment of emotion he revealed that all he did during band was sit there with his hands over his ears. Where I was once concerned that his peers would reject him and he would be bullied because of his OCD quirks and his emotional lability and all the stuff he had to do to make it through the day, now I was concerned that he might not even be able to make it to school, that this disorder was taking over his life so much that he would have to stay home. I wondered if the antibiotics, antivirals, or 5htp were causing him to have an uptake in symptoms. I called the neurologist, who told me Michael needed to stay on the antibiotics and antivirals to kill the bugs. He then told me he wanted to prescribe an antiseizure/antipsychotic medication (Abilify) temporarily to help with OCD, anxiety, depression, tics, and to reduce his hypersensitivity to sounds. Now my internal alarm was going off like the robot in Lost in Space “Warning, warning...” He wanted to prescribe medication to counteract symptoms I knew were the result of another medication? And this medication would have its own set of symptoms it could cause too, like obesity or involuntary movements. That did not set well with me. I researched Abilify and reached out to PANDAS parents who had experience with Abilify. I reached out to Michael’s pediatrician and Dr. S. The feedback I received was not positive so it wasn’t too difficult to decide not to put Michael on the medication. With the approval of Dr. S I took Michael off the antivirals and the 5htp and saw a pretty immediate improvement in his mood and behavior and sleep patterns. Dr. S recommended adding skullcap tincture to his regimen to help with anxiety and when Michael took it it worked like a charm. I felt like we’d missed a big bullet in deciding not to take the Abilify. Even though my confidence in the neurologist was shaken after this we still returned for a checkup and follow-up bloodwork when Michael finished his three months of antibiotic therapy. This particular visit to the bloodwork lab required him to give 21 vials! And he didn’t even pass out. It sounds like a lot of blood and it was, but it was helpful in getting a good overall picture of what is really going on (or not going on) in Michael’s body. We learned that he doesn’t have Lyme disease or candida or celiac. We learned that the cause of the PANDAS/PANS-related inflammation is due to mycoplasma pneumonia and strep antibodies and a myriad of viruses including Epstein Barr virus. While we waited for our next appointment at the neurologist’s office we had an appointment with Dr. S, in which he changed Michael’s homeopathic remedy. Michael had been doing really well before this appointment but the change after was short of miraculous. Michael admitted he had been conflicted about continuing to take band – he just wasn’t enjoying it anymore but didn’t want to disappoint anyone by quitting. His real love was art and because of band he didn’t have much wiggle room to take art classes. Once we told him that we would love him no matter what he did and that he needed to make decisions based on what he wanted to do and not on what he thought other people wanted for him, he was able to make a decision that was right for him. He quit band with confidence and was able to fit an art class into his schedule. So by the time our neurologist appointment came around at the end of March Michael had been on an upswing for a few weeks. The OCD behaviors were starting to lessen, he wasn’t so tired anymore, and for the first time in a long time he was smiling and there was joy and confidence in his voice. So when the doctor told us a second round of antibiotics was warranted to help attack the mycoplasma I felt confident in my decision to not have Michael take it, to have faith in the plan Dr. S had set out for us. After all, it was working – we were getting our son back! Currently our story has a happy ending. In the past few months, we learned some of Michael’s inflammation numbers have gone down a little but his mycoplasma numbers are still pretty high. So now we have added a new herbal remedy designed specifically to treat mycoplasma. Fingers crossed!! Michael turned 15 in June and is on his way to becoming a normal teen. I feel pretty confident that he is really on his way to being fully healed. He is now able to use public bathrooms, doesn’t think his brother is contaminated anymore, and is reaching out to friends and trying to be social again, something he hadn’t done since October. Taking back his own power and choosing art over music was so instrumental (no pun intended) in his healing! For the moment, we can breathe again. And if and when there is a flare, which often occurs when he is around someone who is sick or when he is stressed, we have a plan in place, we have tools in our toolbox.
I know our journey has not been as severe as many other PANDAS/PANS children and I am thankful for that, but it has certainly not been easy and it has left a lot of scars. There are so many families dealing with this disorder who have to make decisions they never thought they would have to make for their child, like having to put their daughter on an antipsychotic medication at age 6 or to place their son in the hospital so his blood can be filtered and transfused. All the decisions I made for my son may not be the same choices another family would make for their child and vice versa. But I don’t judge them as I hope they don’t judge me. We are all trying to find solutions. In the PANDAS world it truly does take a village and I am thankful for all the support I have received along the way, from friends and family to doctors and therapists and counselors and teachers and the whole PANDAS/PANS community on Facebook.
I would never wish this disorder on another child or family but I certainly have learned a lot through this journey and I think Michael has too. I have learned to be strong for myself and for my children, to be a mama bear who won’t quit looking for answers, and to never take no for an answer. I have learned that hope and prayer and faith are sometimes the best tools we have and to never discount my internal gut feelings. As much as this has disrupted Michael’s life I do have to commend him for being so strong. He’s had to sit through countless doctors’ visits and hear me recount his story again and again, not to mention suffering through fearful, irrational thoughts and behaviors all while expected to put on a brave face and continue going to school and taking part in after school activities. I share this story in the hopes that a parent who feels the tug of her intuition telling her something isn’t quite right with her child will maybe be able to put the pieces together quicker than I did and don’t have to wait 6 years or more for a diagnosis and treatment. I am not a doctor (although I certainly felt like one as I researched and asked questions and interviewed specialist after specialist) and don’t present this information for others to use as medical treatment or advice. However, PANDAS/PANS is relatively new and many doctors dismiss it as a disorder, so I urge you to question your doctors and do your own research if you feel you aren’t getting the answers you need.

For more information about PANDAS/PANS, go to www.pandasnetwork.org