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

Chapters

It's time for my annual end-of-the-school-year post.

I have been avoiding writing this post. It's true. It's not just that my oldest is going into high school next year, but Nick is ending his elementary years and heading to middle school. Two major endings and two major beginnings. The utter emotional impact of this week is huge.

Years ago I knew this week would be coming and yet preparing for it has been brutal. Besides buying stock in waterproof mascara I honestly don't know how I am going to survive the last two days of school. Because both boys are completing their last years in their respective schools there is double the celebration. We have the 5th grade picnic, 8th grade picnic, 8th grade awards, 5th grade awards, 8th grade party, 5th grade clap-out, and 8th grade clap out, several of which are at the same time. Since I can't be in two places at once I am going to have to make sure I even out my time spent for each kid or I'll be accused of playing favorites!

I'm happy for the boys as they move forward because I know they are ready for that next step. They are both excited to meet new friends and be challenged (finally!!). But because I'm a mom I know these next few years are going to fly. Before I blink we'll be looking at colleges. I'm definitely not ready for that.

It seems like just yesterday Michael was starting kindergarten. That cute little boy with the blond bowl cut now has braces and is just a hair shorter than I! At 14, he swears occasionally and tells his brother inappropriate things. Yet, he still likes his Legos and is still obsessed with Star Wars. He's not into girls (he says) and is still a very gentle, kind-hearted soul who truly cares about others.

Nick has grown a lot too. Wasn't it last week that he was crying on the playground in kindergarten

because he missed his mom and because the 4th graders at recess were giants? Now he's the one who is giant! There are no more tears when he gets on the bus and I know he doesn't think about me at school either. He has found his niche as trendsetter and has made some pretty good friends.

I am in a much better place than I was when I wrote this post about Michael starting middle school, or this post about Nick's first few weeks of kindergarten. I am confident that my kids are going to be ok in their new schools. Heck, I'm even looking forward to it.

The wise words I once wrote to Michael are now coming back to me. This is only the end of a chapter; in September we will start a new one. There are many chapters to the books of Michael and Nick, and I look forward to all of them.

This poem is dedicated to my boys and their friends and also to all the moms who are ending chapters with me.

Precious Kid

Graduation

Is it possible?

Just yesterday I was marveling,

Tiny fingers and toes

Smiles and coos

Bright eyes.

Now I admire

Heart to hearts

Genius thinking

Bright eyes.

Oh the places you’ll go

Based on the places you’ve been.

I can see the gears turning

So much learning.

School skills

Math, English, History, Science

Life skills

Cooperation, Responsibility, Honor, Passion.

Inside

The same heart beats

Now larger

Filled.

And yet…

Every experience, dream, wish

Expands it a little more.

Advice:

Go for your goals

Reach a little higher

Love without limits

Live life like nobody’s watching.

Always know that I am.