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Tomorrow is Valentine’s Day.

My son announced last week that he wasn’t going to take Valentine cards to school this year. He said he just doesn’t care about it anymore. He’s in 5th grade, so the announcement didn’t really surprise me (although I did double-check today that he really, really meant it and was prepared to do a last-minute run to get whatever was left on the shelf at Target – but he is standing by his decision).

My daughter has spent much of the last week preparing cards for her classmates and personalized gifts for her besties. She doesn’t “do pink” anymore, but my guess is she’ll be decked out in red and hearts when she heads to school tomorrow.

My husband heard our son talking about the Google Doodle being new for Valentine’s Day this morning and had a moment when he thought today might be February 14th and checked with me to make sure he hadn’t missed it.

I have little gifts stashed away for my husband and the kids. My husband will actually be on an overnight business trip tomorrow night, so I will probably take the kids out for dinner between afternoon therapy and evening aerial. If my husband was home, the only way the day would look different would be a quick dinner at home between afternoon therapy and evening aerial.

This will be our 24th Valentine’s Day together. And while the holiday has never been a day we marked with grand romantic gestures, the celebration has certainly scaled itself back over the years. While I would adore a date night out with my husband, at this point in my life I actually cringe at the thought of having that date on Valentine’s Day in a crowded restaurant, while also paying the “parent tax” for the babysitter and pizza back at home.

All that said though, I am feeling a bit more sentimental this year. The little gift I got for my husband is a nod to a younger version of ourselves and also a glimpse of what our future selves may become. It’s sappy and a little goofy and won’t make sense to anybody but us. It’s perfect. And for the first time in a long time, I found myself wanting to find something perfect for Valentine’s Day.

Life has become a kind of hard that our 18-year-old, or 25-year-old, or even 35-year-old selves could have never imagined. And while the days are a little easier now than they were at this time last year, we know there are still tough times ahead. But there is something our 19-year-old selves knew, that remains true to this day, and it is what gets us through the darkest of dark days.

In 1993, our 19-year-old selves saw the movie Sleepless in Seattle, and as a couple we became infatuated with the idea in the movie that certain people are M-F-E-O….made for each other. Corny. I know. Even back then I knew. But I’ve decided I need a little more corny and sappy and sweet and lovely in my life. In a world where so little makes sense and so much is heartbreaking, my husband is my rock. It hasn’t always been easy – we haven’t always been easy – but that’s all a part of our evolving love story. In 24 years worth of Valentine’s Days we have cycled through several versions of ourselves as individuals and as a couple, but the constant is love and even though we don’t need an “official” holiday to celebrate that love, it is a nice excuse to remember and share a little bit of our love story.

So this is for Him. The man who is my partner in life and parenting,  my biggest supporter and by my side as we navigate this journey. It’s not always easy, and I’m not always easy to love, but we were MFEO.

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If Not Here, Then Where?

I’ve lost count of the number of hours I have spent in the waiting rooms of doctors, therapists, and specialists in the past 2 years. I would wager that the total number is well into the hundreds. Hour, upon hour, upon hour has ticked away while I sat waiting for my son.

Some of those waiting rooms are crowded, busy, and unpleasant. Some are spacious, peaceful, and comfortable. All of those waiting rooms have other parents, waiting in chairs for a son or daughter to finish whatever therapy lies on the other side of the waiting room door. Often, those waiting parents also have other children with them – these are the siblings for whom sitting in a waiting room is as common as hanging out at a sibling’s sports practice. Almost always, my daughter is sitting with me in those waiting rooms.

Just this week,  my daughter and I were sitting in the waiting room of my son’s psychologist. It long ago became our habit for my daughter to get as much homework done as possible while we are waiting. On this particular day she was tired, and the homework felt overwhelming, and she was coming up with every excuse possible to avoid having to do the work. She and I went back and forth half a dozen times, before I finally told her I didn’t actually care if the work got done, but if it didn’t she was the one who would have to face her teacher the next day. That was enough to get her to finally buckle down and do the work.

As I settled back into my chair and picked up my phone to check my email, I noticed the one other mother in the waiting room surveying me with a look that seemed to ooze disapproval. What was the source of the disapproval? My daughter and I weren’t arguing – it was a conversation fairly typical of mothers and 4th graders everywhere. So I would think that was not the issue. It could have been the fact that I told my almost 10 year old that she needed to take responsibility for her actions, or it could have been that we were even having that conversation in a waiting room. It could have been I was projecting and she didn’t care at all. I’ll likely never know. After I vented my frustration to my husband via text message, I took a deep breath and focused on my phone. My first rule of survival in these waiting rooms long ago became “keep your head down.”

Several minutes later, I heard the boy who was with the woman ask a quick series of questions…”Why is he still in there? What’s taking so long? Why does he have to keep coming here? Is it because of what happened at school? Is he going to be ok?” To which the woman replied, “Shhh. Not here. There are other people around.”

Not here. There are other people around.

Not here – in the waiting room of an office that is shared space between a psychologist and a psychiatrist.

There are other people around – one other mother and one other sibling, who were also waiting for a child on the other side of the closed door.

If not here, then where? And if not in front of these people, then who?

Maybe I shouldn’t be keeping my head down in those waiting rooms. Maybe I should be looking around and really see the other parents who are very much like me in many ways. And maybe I should be inviting conversation, fostering a safe space, and creating community.

If not here, then where? And if not in front of these people, then who? There is no “maybe.”

There is so much power in naming the struggle – every time I type or say some version of “my son has level one ASD, an anxiety disorder, and a panic disorder”, it becomes a little less frightening. I am actively fighting stigma online and in (most parts!) of my “real” life, but by not saying something (anything!) to another parent in a waiting room, I am perpetuating stigma.

I don’t know if I will even come across that other mother again. But she could really be any other mother (father, grandparent, guardian) in any other waiting room. So this is my vow to her…

I vow to not keep my head down in those waiting rooms anymore. I vow to be open to conversation. I vow to create safe space for other parents who are so very much like me. I vow to foster community. I vow to be a stigma fighter all of the time.

That is my vow, and I challenge every person reading this to make it your vow as well. Join me and be a sigma fighter.

Because I never again want to hear, “Shhh. Not here. There are other people around.”

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Fighting Together

July is the least favorite month of the year for my husband and me – the double whammy of it being an extra busy time of year for both of us at work, combined with balancing kids on Summer break means we rarely see each other during daylight hours, and sometimes don’t have conversations that go deeper than “Can you pick up milk on your way home?” In a “normal” year, the month of July is stressful and exhausting. This year – with the added chaos of refinancing our house, a visit to family in NJ, and having our son at work with me because panic disorder and day camp aren’t things that co-exist peacefully – and the stress levels have been astronomical all month. It’s been rough.

In the midst of this rough month, there have been a handful of incidents that made me stop and think about how other people perceive our marriage. At different points in this month, my husband and I both had people essentially ask how our marriage was handling the stress of our son’s current struggles. We both answered, without hesitation, that we are doing just fine, thank you very much.

Do we argue sometimes. Of course. Is there added stress on our marriage? No doubt.Is it easy? Nope. Is it fun? Not always. Is this what we dreamed of for our family. Heck no. But it is our reality, and we work with what we’re given. We work with what we’re given, and we have love and faith and stubborn streaks that win out when the days get hard.

We have love and faith and stubborn streaks that win out when the days get hard. We also have a relationship that predates kids by 13 years and is coming up on 24 years in duration. We’ve been together longer than we haven’t, and even in this this rough season of life there is no doubt we are meant to be walking through life together.

Part of the beauty of such a long, shared history are a handful of long, shared friendships. One such friend, somebody who has known us from the very beginning, was at our home recently. At some point in the evening, my husband and I disagreed about something. Our daughter told us to “stop fighting” and our friend replied, “But that’s what they do. That’s what they’ve always done.”

“That’s what they’ve always done.” There is absolute truth in that statement, but it isn’t as ominous as it sounds. There is probably more in life we disagree about, than we agree about. And we aren’t afraid to let each other know when we think the other is wrong. We generally agree to disagree on the small stuff – and it’s mostly small stuff – but we always find a way to come together on the big stuff. It’s worked for over two decades, and it works now as we navigate this latest chapter of our story.

And what a story it has been so far.

We met and fell in love as college freshmen. We came into the relationship with distinctly different world views and not much more in common than a mutual love of music and innate sarcasm. Add in the fact that our relationship was a long distance one, and the odds weren’t in our favor to survive the first month, let alone last through college. But we did.

And then we were 20-somethings trying to find our way in our prospective careers, and navigating what a not-long-distance relationship looked like for the first time. By this point we had grown into who we thought we were as a couple, and that didn’t exactly line up with who we needed to become as a couple to make it through the transition into the real world. It was bumpy and ugly, and sometimes frightening. But the one constant was our shared belief that we were worth fighting for.

So we fought for us, and just about the time that common lore would have you believe we “should have” outgrown each other, we were married. Our early married years were easy, compared to the seven years that preceded them. We found our groove in our respective careers, continued to grow together, and settled into a generally happy little life.

Then came the years of struggling with infertility. That could have been enough to tear us apart, but it just made us stronger. And the day we found out I was finally pregnant, was also the day my husband found out he’d been accepted into his first choice of graduate school programs. He started business school 6 weeks before our son was born and by the time he graduated 3 years later, our family had grown from 3 to 4 with the surprise addition of our daughter – a surprise that kept me on bed rest for much of the second half of the pregnancy, with a toddler and a husband traveling for business while also completing grad school. Those years redefined “hard” for us and redefined us once again as a couple. Once again, it was bumpy and ugly and sometimes frightening (and this time also exhausting). But the constant remained our unwavering belief that we were worth fighting for.

So once again, we fought for us. And eventually we settled into a new rhythm and a generally happy little life. We bumped along together. Figured out how to be parents together. We adjusted, and adjusted, and adjusted again as the kids grew up and their needs changed. We worked with what we were given, and when that suddenly included a son struggling under the weight of anxiety and depression, we used all of our energy to fight for him. We fight together to get him the care and support he needs. We fight together to make sure he feels safe and loved always. We fight together to help him find his way in this world. We fight together for our son, and for our daughter, and for ourselves. We fight, it’s what we’ve always done.

So if you were to ask us how we are doing, we will likely tell you we are doing just fine, thank you very much. This is our reality, and all of the difficult times that preceded this truly hard season of life built us up to the people,  and the couple,  and the parents we need to be to meet this challenge. This is our reality, and while I wish for an “easy” day once in a while and for more quality time with my husband, I wouldn’t trade away one second of this life we’ve built together.

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Home…Real, Raw, Broken, Beautiful

14 years ago this month, we bought our first house. It was little, but on a decent sized corner lot. It was not in the “best” neighborhood, but in a really good, quiet neighborhood.   It was a good house, and we planned to be in it for about 5 years. Today we signed the mountain of paperwork to refinance that house. We’re still here.

We’ve talked about moving dozens of times over the years – including as recently as this year –  but for a variety of different reasons we’re still here. We’re still here, and I have actually been resentful of that fact. My top two reasons for wanting to leave are the apartment building we see from the backyard and a desire for all of us to have a little more personal space. I’ve even gone so far as to say that I hate this house.

So after signing my name roughly a million times – while also trying to verbally encourage my son to use a skill to self regulate as a panic attack was brewing  – we refinanced the house I have said I hate. Driving home from the appointment, the song “Home” by Blue October came on the radio. I’ve heard the song before, but I never really listened to it until today. Today I heard loud and clear…

We found
Our home
Something we can build for years

The young
And old
I’ll be there to wipe your tears

We all get to see
Who we grow up to be
And anchor when in doubt
An ocean when in drought

We aim for it all
We lift of these walls
To make this house our home

Dancing in the kitchen in the pale moonlight
Only care in the world is that our kids are all right
Daddy loves momma and momma loves him
Tomorrow we get to do it over again

As I continued to drive toward home, I pondered those words and found my perspective shifting. The first time we walked into this house, we knew we had found a home. Back then it was just me, my husband and two cats. It wasn’t part of our plan to raise a family here, but we could envision the possibility of raising kids in this house. Years passed. Life happened. And over the course of those years, we made the house a home. We filled the rooms  with love and laughter, and became a family here. We have dreamed, argued, cried, and grown together in this home. This home has been a sanctuary for each of us at different times when the world has been too rough. In recent years, I  became so bogged down in the limitations of the physical space, that I lost sight of what is actually important.

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The house is walls, windows, doors, floor and roof. Our home is love, laughter, dreams, security and family. I may not like certain things about the house, but I can’t hate our home. I love the home we have have made. Home is where we are family – real, raw, broken and beautiful. And tomorrow we get to do it all over again…

 

Back on Track to Black

My son began training in the martial art of ninjitsu when he was 7 years old. From the very first lesson he loved it and was hooked. By the time he had trained long enough and showed enough mastery of technique to advance to his second belt, he had declared his intent to become a black belt. The Timehop app on my phone was kind enough to remind me this morning that the day he made that statement was exactly 3 years ago today.

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Ordinarily, seeing a reminder like that would have been an “aww, I remember that” sort of moment. This morning, however, that memory was perfectly timed to be a saving grace.

For a long time, the dojo was one of my son’s few “safe places.”  Even when he was having major anxiety and panic attacks most other places in his life, the dojo remained a safe place. That all changed  at the beginning of June when he had the first of several panic attacks at the dojo. The panic attacks were followed by doubts and anxiety about his physical ability to train and worry about what the sensei, instructors and other kids would think of him. The dojo no longer felt safe and he began to have panic attacks just thinking about having to go there. He declared his intention to quit.

Since the very thought of the dojo had become a trigger for him, we decided to let him take a break. He missed most of the month of June and the beginning of July – including a rank test and a belt test that would have advanced him to brown belt (2 belts away from being a black belt).

Over the weekend, my husband and I decided that this was the week we were going to try to get him to return. He’s been on his new medications for almost 3 weeks, and while he still has high levels of anxiety and there are still panic attacks as well as episodes of anger and depression, in general he is steadier than he was back in June. We knew that the longer he stayed away from the dojo, the harder it would be to get him back. We also knew that even if he said he didn’t care anymore about earning a black belt, he didn’t really mean it.

So yesterday there were several conversations about today being the day he would go back. He wasn’t on board. There were tears, mild panic, and anger. He continued to declare his intentions to quit. And right when I thought we might not ever convince him – we went with a minor bribe.

He had been asking for permission to buy a couple of graphic novels for his Kindle, and we had not allowed it. The possibility of purchasing those graphic novels was enough of a carrot last night, that by the time he went to bed his screaming protests had mellowed into quiet sighs. This morning he asked if he could still get the books if he went to class this afternoon. I told him yes, and then I showed him the picture from Timehop. I reminded him about the goal he once set for himself, how much love he has for ninjitsu, and how far he’s already come toward meeting his goal. And then I prayed he would be able to make it to the dojo and through his class without having a panic attack.

He went. He was nervous, but he went. He made it through class, and at one point was even laughing with his training partner. He did it! And he’s talking about the “next class”. And he asked if I had been able to reschedule his missed belt test. He’s back on track to black! (And at this very moment sitting on the couch devouring the 2 graphic novels we purchased as soon as we got home from the dojo!)

I Hate That Red Wristband

This is our first full week of summer vacation. I wrote last week about how challenging the break would be this year – one kid at home trying to avoid anxiety and panic triggers, one kid at a different day camp each week, and me trying to balance both of them while also muddling through one of my busiest work seasons of the year.

The hardest thing in all of that is helping my son through his minutes, hours, days. We talked a ton in recent weeks about how weekdays would be. We negotiated, and planned, and negotiated some more. And we came up with a plan that seems solid and doable. Part of that plan included giving him this first full week of summer to do (almost) anything he wanted (almost) all day.

Last night was rough. I was talking him through the things he would “have to” do today – including coming with me to drop his sister and a friend at day camp and making up a ninjutsu belt test that he missed over the weekend. He wasn’t happy about either of those “have to” items and we spent about an hour cycling through anger, anxiety, and sadness before we could calm him down enough to go to bed.

This morning, it was as if last night never happened. He got in the car with no trouble when it was time to drive the girls to camp, and, on his own,  double checked what time we would have to leave for the dojo for his belt test. I even felt good enough about his state of mind to leave him at home alone for about an hour while I got an allergy shot and picked up some groceries.

The middle part of the day was calm. He watched YouTube videos and I multi tasked on laundry and some work emails. He seemed just fine when I gave him 60 minute, 30 minute, 15 minute, 10 minute, and 5 minute warnings for turning off the computer. I was feeling incredibly hopeful about how the day was going.

But then it was 2pm – time to turn off the computer, put on his gi and go to the dojo. And just like that, he was having a panic attack. It was bad enough that I had to give in and say he did not have to go to the dojo. That piece of information minimized his panic and anxiety, but those were quickly replaced by immense sadness and self-hatred – which for him lately are also accompanied by attempts to hurt himself and requests for other people to hurt him too. It’s ugly, and heartbreaking, and messy, and exhausting. I spent 30 minutes literally holding him down and talking to him calmly as he thrashed and cried and tried to hurt himself. By the end we were both physically and emotionally fried.

A couple of hours later, my daughter was dropped off after day camp. I was excited to hear about her day, and stepped outside to greet her, the friend and the friend’s father. My daughter went barreling past me without a word. Her friend said “We had so much fun! We both got red wristbands.” Her friend’s father said, “She’s upset that she didn’t get the blue wristband.”

The wristbands are for levels of swim proficiency. You need a blue wristband to use the kayaks in the bay. The red wristband only gets you access to a row boat or the dragon boat with an adult. My daughter had been looking forward to kayaking. The red wristband was cause for major tween drama and angst. After the afternoon I’d had with her brother, I did not have the head space, or the energy, or the wherewithal to deal with tween drama and angst. In not my finest parenting moment, I essentially told her to get over it and added that she should probably stay in her room until she could find a more pleasant attitude.

With a little bit of space and perspective, I can empathize with her frustration – especially after she told me that her stomach was hurting during the swim test. She’s been struggling with tummy trouble for a few days, and on another day she probably could have passed the test for the blue wristband. She hates that red wristband, and honestly so do I.

A blue wristband would not have changed what happened during the day with her brother, but it would have allowed her to come home in a better mood. I hate that red wristband and the added emotions it brought into our house today. I hate that red wristband for taking fun away from my daughter (even though there is still plenty of amazing fun to be had without the blue wristband). I hate that red wristband because its presence on my daughter’s arm means that both of my kids are hurting today.

Both of my kids are hurting today. Her hurt isn’t as big or potentially life altering as his hurt, but it is just as real. It is just as real, and in some ways even more heartbreaking. She has missed out on a ton of stuff this past year because of her brother’s battle with anxiety, panic and depression. She has had to be mature beyond her years more times than I like to acknowledge. She has had a really rough year, and we really want her to have an amazing summer to heal some of her wounds. Today wasn’t a great start. But there’s tomorrow, and the next day, and 71 more days after that for fun, and laughter, and healing of wounds.

But I still hate that red wristband…

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Summer Is Coming

My kids have exactly 3 hours of school left in the 2015-2016 school year. That means Summer Break begins at 12:01pm tomorrow afternoon.

Summer break this year is most likely going to be anything other than restful. With my son’s anxiety levels as high as they are right now, and potential triggers for panic attacks lurking almost everywhere, he doesn’t feel like he “can” or “wants to” do any day camps. He just wants to stay home. And I get that.

But then there is my daughter who wants to do everything, and not miss out an anything. And I also get that.

And then there is the fact that my Vacation Bible School is the first week of August, so the next 6 weeks are actually one of my busiest work seasons.

So right now I feel like this…

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But I am trying really hard to remain positive, and flexible, and optimistic. Hopefully most days I can be more like this…

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Because whether I am ready for it or not…Summer officially starts tomorrow at 12:01pm!