Just Keep Swimming

Adventure Is Out There
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Adventure Is Out There

Last week, my son went away to summer camp.

At face value, there is nothing remarkable about that statement. He’s almost 12, headed to middle school, and was at camp with his Boy Scout troop. Going away to summer camp is a typical thing for an almost 12 year old Boy Scout.  But this specific almost 12 year old spent the better part of the past year coming out from the depths of anxiety and panic disorders. At this time last year, just leaving house was a challenge. At this time last year, there was nothing typical about his days.

I wish I could remember exactly when it was that we had to make a decision and pay a deposit to secure his spot at camp. It was months ago. It had to have been after my son had climbed far enough out of the blackhole that was the time of his worst anxiety and panic, to be (mostly) functioning in the world. But it also had to have been well before we finally reached a steady maintenance dose on his medications. Somewhere in the middle of those two points in time, was another point in time where we were far enough beyond living in crisis mode to be able to imagine a not-too-distant future date where he truly would be mental healthy enough to handle a week away from home.

Whenever that day was, it was months ago. So, as it goes with these sorts of things, a deposit was paid, a date marked on the calendar, and on we went with the day to day of life. We all knew that camp would happen, but were not actively thinking about the fact that camp would happen. For months “camp” was more of an idea than an actuality. But then months turned into weeks, and as school came to an end CAMP was suddenly looming in the very near future.

One month before he left, my son was incredibly excited. He would tell everybody about the train ride (a 24-hour train ride from our home in Southern California to the camp in Southern Oregon!), the merit badges he planned to work toward, and the activities he was looking forward to most. Two weeks before he left,  I would have described my son as nervously anticipating the trip. The week before he left he was excited yet increasingly anxious. In the days leading up to the trip, he became solidly anxious, while still looking forward to the adventure.

Two days before he left, he had a panic attack. After going weeks without even a minor attack, I watched the panic wash over him as we waited in line at a restaurant. It was small compared to what it would have been a year ago, but it was real. The cause was a lunch crowded restaurant, the root was his  growing anxiety about camp.

The day before he left was his worst day in months. From the time he woke up until the time he finally fell asleep, he cycled through sensory driven meltdowns, bouts of near hysterical tears, and a handful of minor panic attacks. Through all of that we packed him up for his week away. And through all of that my anxiety level was higher than it had been in months. I spent that day doing lots of deep breathing and praying. I spent that day wondering if we’d made a mistake all those months ago when we decided camp would be a good idea.

The date that had for so long been an idea on a calendar, was suddenly a sunny and humid actual day. With the dawning of that day also came a return in my son’s excitement about his great adventure. As he stepped on the train with a huge smile and a wave, I said a prayer. I prayed for him to have the strength to push through his anxiety and be fully present for the adventure ahead.

He was gone for 9 days. For most of that time we had no direct contact with him (they had their cell phones confiscated when they arrived in Oregon), and only sporadic updates from the adult chaperones on the trip (turns out the camp is in a cellular blackhole). The few pictures we received showed him happy and dirty – typical 11 year old at camp type pictures. For a week the only narrative we could imagine was the one shown in those few pictures.

I wish I could say that the kid who came off the train was as happy and excited as the kid who boarded that same train 9 days earlier. Or that the smile which greeted us, was the smile that we’d seen in pictures while he was gone. I wish I could say that the gut feeling I’d had all week that those pictures weren’t telling the entire story was wrong. I wish I could say all of that, but I can’t. The kid who came off the train was emotionally, physically and mentally depleted. He was spent. He was clearly happy to see us, but the happiness was soon replaced with relief. Relief that he was home, and among his closest circle, and didn’t have to try so hard to keep it together – and with that relief came the release of 9 days worth of bottled up emotions, frustrations, fears, and his self-perceived failures.

The “self-perceived failures” are a big part of the story here. It’s a story we are just beginning to piece fully together now that he’s been home for a few days. I know from the few comments I heard a couple of the older boys make to my son, that he was not struggling silently while they were at camp. Comments from adolescent boys such as “I’m proud of you” and “Forget about the bad parts – you did some great stuff” are super telling to me. The other boys saw how he struggled, and some of them showed the best of themselves by encouraging my son to focus on the successes rather than the self-perceived failures.

The adults who were with him have shared with me stories that illustrate a kid who definitely struggled several times during the week, but who was able to persevere. I have also learned from the adults on the trip that although my kid was definitely struggling, he was also looking out for other kids who were struggling themselves. One adult told me that my son is the most empathetic kid she’s ever met.

He has begun to tell the story of this time at camp in little bits of stories that come at seemingly random times. I’ve heard about the food, the camp staff who he liked best, and every type of candy they sell at the camp trading post. He’s also told me how he “cried every day”,  how the early to rise and late to bed schedule left him feeling rushed, and that there were a few times where he did not take his medication. He’s clearly still processing everything he experienced. My hunch is we will continue to hear his first hand experience for weeks to come. He’s focusing a ton right now on the things that did not go right – but slowly he’s sharing the good stuff. My hope is that over time we will be able to help him reframe the story so that what he remembers is how he persevered in a difficult situation, and as a result was able to have an incredible adventure.

I’m working on focusing on the adventure part as well. A year ago there was no way I could see a near future where he would be mentally and emotionally stable enough to do something as huge as a week away at camp. With time, and hard work and medication we got him there – take any one of those three things out of the mix and we would not have gotten him there. He functions in the world only because of a tenuous balance of time, hard work and medication – this trip was a test of that balance. For the most part I think the balance was maintained. But his admission that he knows his medication was not always taken at the right time or in the correct amounts does bother me greatly. We’ll never know if some of his struggles would have been smaller (or even nonexistent) had his medication routine not been interrupted. I have strong suspicion that played a partial role in the challenges he faced during the trip. That is something that I will continue to wrestle with – where did we go wrong in communicating to the adults in charge the importance of his medicine – but it is not where I am choosing to focus.

Over and over again in the week he was gone, people close to me wondered in amazement at the fact that he was strong enough to be gone. It truly is an amazing thing and something that I do not take for granted. This kid who has been dealt an incredibly challenging hand in this game of life, definitely struggles in the day to day. But when the big things happen he shows up, digs in, and perseveres. There were so many times I questioned our decision to let him take this trip, but in hindsight I would not have made a different decision. By giving him the opportunity to strike out on his own, we have also given him a solid foundation for moving forward. There is so much adventure to be had, and we’re going to help him find his place in that adventure to help him discover his place in the world.

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The View From Here..

School ended today at 12pm. By 12:20pm I had four extra kids in the house – two friends of my son and two friends of my daughter. They all came home from school with us and will all spend the night. It’s a huge “Welcome to Summer” celebration.

Earlier today as I was leaving work and heading to the grocery store to stock up for 6 hungry kids, I told my co-workers that this party was either the best idea I have ever had, or the worst. So far, so good. They ate enough food to feed a dozen kids at lunch, they’ve played video games, had water fights, and nerf battles. All together in a big pack. It’s been so much fun to watch (as I have been attempting to get in a couple more hours of work sitting in the yard.)

Right now the boys are in the living room playing video games, and the girls are in my daughter’s room whispering and giggling. There is peace and harmony and joy in the land of preteens as they ease into their summer break. And the current view from my outdoor “office space” is this…

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That is the remains of water balloon fights, nerf battles and hot tub dunking. It is the loveliest, most joyful mess I have seen in a long time. Its existence proves how far my son has come since this time last year. The beginning of last summer was right after my son had hit rock bottom in his battle with anxiety, panic and depression. While this was clearly hardest on him, his behavior, actions and choices for many months last spring and summer had the net result of our entire family being hostage. We did not have people over because there were too many possibilities for the visit to end poorly.

This time last year, we were all just trying to survive. This time last year, the long and empty days of summer seemed desolate and daunting. This time last year, there was no celebrating.

But today there is laughter, and joy, and fun, and friends, and beautiful messes. Today there is celebration and eager anticipation for what the summer will bring. Today the view from where I sit is incredibly good.

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A Picture Is Worth a Thousand Words…

We are in the swift downhill race to the end of elementary school for my son. Every single day there is some celebration marking the end of the class of 2017’s time at the school. 

Today that celebration was an awards ceremony honoring academic achievement. My smarty pants, loves school, never met a book he didn’t like kid went into the morning knowing he would receive an award and was eagerly excited when he woke up this morning. 

Even with that excitement, the actual act of sitting in a cafeteria full of other kids and parents was hard for him. He is doing so much better at keeping his anxiety in check, but crowds, noise, anticipation and that cafeteria all remain individual triggers. Put together, he could have been sitting in the middde of a perfect storm. At this exact awards ceremony last year, he could not even enter the cafeteria – he listened from outside the doors. 

But today he managed to get a win over his triggers and demons. Today he sat in the midst of the other kids, cheered his friends and classmates on as a couple dozen awards were given out before his name was even called, and walked proudly and confidently up to the stage when his own name was called as a recipient of the President’s Award for Outstanding Academic Excellence. In other words – he rocked it!

I took gobs of pictures during and after the ceremony. Some show him solemnly examining his award, some show him beaming with pride, one shows him with his amazingly kind and wonderful teacher, and a couple even show him goofing off with friends. But this picture is the one I know I’ll treasure most over time. 

This picture of his back (and the back of his sister’s head) tells the part of the story I think matters most. The story isn’t that he’s an excellent student with a crazy smart brain. That’s amazing, and we’re super proud of his academic achievements, but it’s not what really matters here. What matters here is the fact that he is in the room. We could tell he was about to burst out of his skin at several points during the ceremony, but he didn’t give in. He fought through the anxiety and was a true participant in a huge personal milestone moment. From our seats in the chairs behind the kids, we were able to witness him truly being present for himself and with his peers. And it was beautiful. 

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Too Much!

One day last week I spent sometime updating calendar. There were at least a dozen things – some work related, some volunteer related, some kid related – that I knew were happening, but had not yet made it onto the calendar. I am generally pretty good about getting things down on the calendar as soon as they are scheduled, so it was unusual for me to have to actually make the time to do a calendar update. As soon as it was done, I realized why all of those things had not made it onto the calendar….there is just too much happening in the next month.

That same afternoon I was chatting with a friend at school pick up. A friend who I have seen quite infrequently recently because we both have too much on our plates. I told her about my time spent updating the calendar and how i had decided that if I just didn’t look at it, then none of it was real. We laughed.

Later in the week, the subject of the calendar came up with my husband. We operate off a shared Google calendar, so he gets notifications overtime I put something on the calendar. That day I did my major update, he got a separate notification for each of the dozen or so events I created on the calendar. He joked to somebody that there is just too much on that calendar which functions as our shared brain. But there’s more truth than humor in that statement.

Too much. Even though I have become so much better at learning to say no, there is still too much. Some of it is ongoing – the work meetings and events, sports practices, therapy appointments, medication checks, orthodontist visits, and  tutor appointments are all things that take up space on the calendar on a regular cycle. Some of it is seasonal – year end awards ceremonies, scout events, performances, track meets and parties are all taking up space but will soon give way to the more open calendar of summer break. That calendar is really not vastly different than many other families, but lately when I look at it, instead of seeing the individual events, I just see too much.

And what do I do with too much? I power through. But sometimes powering through comes at a cost, as I was reminded this past weekend.

Saturday morning I woke up feeling mentally tired (my normal these days), but physically fine. By the time I had showered and headed out for a day full of work events, I noticed that my back was a little sore. I proceeded to stand on my feet for the next few hours, and when I finally sat down I realized that my back was actually very sore. Another two hours passed as I sat in a meeting and then drove home. By the time I pulled into my driveway the soreness in my back had become full blown pain. As that afternoon and evening progressed, the pain became worse and worse.

My husband asked me what I had done to hurt myself. My answer – nothing. I didn’t do anything. I could not put my finger on any one act of lifting or bending or moving that had caused strain to my back. His response to that – perhaps it was my body sending me a message that I needed to slow down from the too much. He also pointed out that I can’t take care of anybody else, if I am out of commission myself.

So my body sent a warning shot – a pretty painful warning shot, but one that I am already mostly recovered from physically (thanks to a couple days of rest, ice and ibuprofen). All of those things that combine to be the too much are still on the calendar (in fact a couple more things were added just today), but on most days there is time in between the things that are the too much. And it is how I choose to fill (or not fill) those moments that contribute to or take away from my own physical and mental well being. It’s not all of those dates on the calendar that are causing my strain, it’s my own inability (or unwillingness) to use the time in between to care for myself. So as I lay on an ice pack and drifted off to sleep last night, I made myself a promise to pay more attention to my own needs and make the time to care for those needs. There is very little of the too much that I can actually rid from our lives right now. What I can do is add something to make  the too much feel a little easier….

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Maintenance Dose

377 days.

That’s the total number of days between the date my son was first prescribed psychiatric medication and today. In those days the type of medication has changed 3 times and the dosages have been adjusted 7 times. And today, on day 377, the psychiatrist sat across the desk from us and told us that he thinks the current medication combinations and dosages are solid. We’ve hit the sweet spot of “maintenance dose”.

Our decision to medicate is not something I have talked or written about very much. The path that finally led us to the our son’s psychiatrist and that first dose of medication  377 days ago, was long and twisted. Some parenting decisions are easy and clear-cut. The decision to medicate was not one of those.

While I am fairly open on the blog and in person about our story, I am careful to not over share. Specifically I leave out the parts of the story that are too raw or personal. Truly that means I often leave out the specifics of behavior and the grittiest of the details.  These are the things that if you have not lived through, you may not even be able to imagine or consider as possibilities.  Leaving out those details is necessary to maintain some dignity for the people involved, but it also means most of the world is only getting a portion of the story. It is challenging to talk about the “how” we got the decision to medicate, while also maintaining that balance of not over sharing. But perhaps by sharing even a part of this yet untold story, those who do find their family in a similar situation can read enough between the lines to know they are not alone in the difficult decision of to medicate, or not.

I can’t really put my finger on the why of this – but for a long time I was staunchly against medication. I absolutely had concerns about side effects, and although I never articulated it I also had concerns about stigma associated with medication. I was willing to try any other possible intervention – counseling, behavioral therapy, diet and routine changes, homeopathic and alternative therapies. And we did try them all. We exhausted all the other possible interventions. But none of them made a dent in the problem. In fact, in the time we were cycling through my “anything but medication” approach, our family became hostage to my son’s increasing anxiety and depression and the behaviors that accompanied the anxiety and depression.

By the time we made the decision to medicate (actually by the time I finally got there, my husband was ready months before I was), the anxiety had eroded the joy my son once exuded. His anxiety was so high and so persistent that he was barely able to function in the world.  The behaviors that accompanied that anxiety were holding our family hostage. He was in pain and in crisis, but we all were suffering.

I can recall with absolute clarity the moment I knew I was wrong and that medication was a necessity. It was the day he had a panic attack so debilitating he sank to the floor in the middle of a group of people at the Monterey Bay Aquarium. The site of him shaking and crying on that floor is an image that will never leave me. So by the time we met the man who would become our son’s psychiatrist 2 weeks later, when he asked if we would consider medication my answer was an emphatic yes.

And so 377 days ago he started medication. 377 days ago he would not look at the psychiatrist, let alone speak to him. Today as we sat in the psychiatrist’s office, my son looked him the eye and was (mostly) able to answer questions about how he is feeling and what he is thinking. He even laughed at one point, and was clearly excited and hopeful as he talked about the summer camp he will attend this year. He was a completely different kid sitting in that room today, than he was 377 days ago. So much of that can be attributed to the medication.

And so we have reached a “maintenance dose” – for now at least. He will grow and his hormones will kick in – both can wreak havoc with the delicate balance the medications provide. Or some yet unknown and unforeseen life change could amp his anxiety levels – that could also wreak havoc with the delicate balance the medications provide. I still worry about potential longterm side effects, but 377 days into this particular part of our journey I do not doubt that medication was and continues to be a necessity. The medications do not provide a cure, nor are they absolute. They do help to create the space for him to learn to handle the world. They do establish enough balance for him to engage with the world on his own terms. And they have brought enough peace that there is joy once again in his eyes and in his laugh. And for that I am thankful.

 

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Love, Faith, and Anxiety

Maundy Thursday is the day that Christians commemorate the gathering of Jesus and his disciples for the Last Supper. Maundy comes from the Latin word mandatum, meaning commandment, in reference to Jesus’ teachings about a new commandment. “I give you a new commandment, that you love one another. Just as I have loved you, you also should love one another. By this everyone will know that you are my disciples, if you have love for one another” (John. 13:34-35, NRSV). That piece of scripture, and it’s message,  has been woven into my life for as long as I can remember, but last night I felt those words in a way I had never experienced them before.

I’ve written before about the internal struggle my son wages between his love for God and church, and his inability to be in large groups of people. After a year on medication to ease his anxiety, he is generally good on Sunday mornings – he knows what to expect, can position himself in the sanctuary in a way that offers an unobstructed escape route, and has figured out how to entirely avoid the over-peopled parts of church. He has found a balance that allows him to participate in worship and fellowship, without being too overwhelming.

But every now and then, he finds himself in a situation at church that is outside of his comfort zone.  With the decrease in predictability comes an increase in the potential for anxiety or a panic attack. Such was the case last night as we observed Maundy Thursday.

He was trying so hard to stay in control. I could see it and I could feel it in his tense body seated next to me. But shortly after we were seated – in a sanctuary that was darker than he is accustomed to, in a seating arrangement completely different from on a Sunday morning, in a worship service filled with heart wrenching words and haunting music – he realized he was not in control. And his chosen means of attempting to hold off the panic attack was to bury his head in my lap and squeeze his eyes tightly shut.

So it was that I found my sweet boy – who is almost as big as me – curled into my lap as the words of this Taize chant washed over us both…”Nothing can trouble. Nothing can frighten. Those who seek God shall never go wanting. God alone fills us.” Over and over I heard and sang those words which were simultaneously heart breaking and soul filling. My heart broke for Jesus, for the world at large and for my son – as I sat holding my son, I felt my heart-break wide open.

The message of Maundy Thursday is love. Love in its purest form. Love for one another. Love in action. And while I am still reeling from the pain of last night, in the light of this day I know that above all else it is our collective love and faith that will see my son through this world.

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Look Closer…

One year ago today….

This was a picture perfect day as captured from the rooftop deck at the Monterey Bay Aquarium. I remember the first part of the day being a lovely family outing. And there are dozens of other pictures taken that morning which support my memory. 

But shortly after this picture was taken, our son had his first debilitating panic attack. In the middle of the aquarium, we all had our first experience with the wave of panic washing over him and sending him to the floor in a fetal position. It was possibly the most frightening moment of my life. And was certainly a turning point in my son’s story. 

Just 2 days before this picture was taken, we had made an appointment with a psychiatrist to discuss the possibility of medication. If there was any doubt left lingering that our boy needed the support of medication, that disappeared as we helplessly watched him first huddling on the floor in the middle of a crowd and then watched as he ran searching for an exit from the building. 

That day marked the beginning of a long series of days and weeks and months that were colored by fear and exhaustion for all of us. Because even though medication was only weeks away from this date, it took a long time for us to see and feel the effect. 

Everything you just read? That’s what all flashed through my head as I saw this picture pop up in Timehop this morning. It was an awful lot of emotion and memory before 7am. 

But then I looked closer. I looked at the picture again, and I saw how far we’ve come this year. On that day we didn’t even yet have an actual diagnosis. We were still searching and trying desperately to get to an answer before something went terribly wrong. On this day, a year later, we have the diagnoses and answers and experience to better handle whatever his brain or life might throw at us. We are so much better equipped. And while we know there are likely more dark days to come (that will masquerade as sunny and picture perfect), we also know we can fight that darkness. 

So look closer. Look closer and you can see both the broken and the beautiful.