Fear post #2: Manufacturing fear

Heading down Highway 281 the other morning, I scared myself. And I think it was deliberate.

I was driving downtown to drop Colin off at theater camp and then to work, and I found myself in a glut of traffic that prompted me to put my Camry’s sweet 270-horsepower engine to the test (it doesn’t often get used) to get out of what seemed like a sticky mass of cars going too slow. They were also hovering too close.

I felt a little thrill, a rush of air in my chest and a catching of breath when I pressed the gas pedal down forcefully, sped up, and passed another car. I was driving on a curve, far above the ground, over the gentrified streets around the Pearl Brewery area below, and it felt a little like flying. To add to the thrill, it was the exact location that Jason’s highly aggressive acceleration and passing tactics scared me to the point of tears, years ago when we were first dating. I think it’s a now a permanent sense-memory.

But the scariest part wasn’t the speed, really. I wasn’t even going over the limit, or if so, not by much. It just happened that, at the moment of action, I thought, what if a tire blew and we careened over the highway with our last breath in our lungs? What if these were the last few moments of our lives?

I have similar thoughts sometimes, in other circumstances—the what-if-something-awful-happened-right-HERE moment. It’s not frequent, but they come sometimes when I’m boarding a plane or something. It’s usually when I’m with Colin and Jason, which, in an odd way, is comforting. (At least I’m having paranoid thoughts about dying together.) I used to have them before we had Dylan, and I really had them for awhile after we lost Dylan, so I used to attribute them to a post-death paranoia of losing another loved one.

Typcially, after the fear passes, I always chastise myself for thinking such scary thoughts. But today I simply wondered, why did I do that? Why do I do that? And then, almost immediately, I remembered a line from a movie I saw recently in which one of the more memorable characters delivered this great line: “There is no courage without fear.”

And it struck me. I was generating courage by manufacturing fear.

I’ve had a bit of a courage void for a long time. I just haven’t needed to be that courageous for awhile. Nothing is posing a threat to me or my family. But lately, I find that I need an infusion of courage. I’ve been starting down some new paths and feeling anxiety over them. I started selling a jewelry line to try something new, push myself to think differently and potentially generate some extra income. I’m applying for new jobs and looking at ways of making a living that offer new challenges, maximize my time (i.e., get the best pay for the hours I can devote), and still allow me the flexibility I need to care for my family the way I want to. The job- or contract-seeking process brings with it the typical worries that my skills are not good enough or out of date. Or that I’m not capable of what I used to be before I stopped working full time to take care of Dylan. Or that I won’t make enough money. Or that I will make enough money but at the expense of the flexibility I’m trying to preserve. I have no idea where I’ll land with all these things.

So, I live nowadays with this low-level, persistent, niggling anxiety, which translates to a kind of fear. But it’s not intense enough to trigger a significant courage response. For that, you need real fear, like the nanosecond of fright caused by the idea of falling to your death with your son in the backseat of your car. All the Facebook memes, inspirational quotes, and YouTube videos of Jim Carrey’s commencement speech have not been enough to rev up my courage engine sufficiently. And I don’t have a pithy, sentimental or gratitude-laden resolution to this problem to make for a lovely ending to this post. All I’ll say is that I’m not asking for the London Blitzkrieg of courage-generators--just something with a little more oomph.

More on the Blitz in my next post, though…

Fear post #1: The union that almost wasn't

I began drafting this post around our 16th wedding anniversary in May. Well, now it's Father's Day; stress, regular life and vacation sort of sapped my creativity and time for awhile. (Or maybe, starting the fear series was more daunting than I had thought it would be.) Either way, this post is dedicated to my husband, a man who never shows fear, and the courage he had to give me another chance. 

There is one singular conversation in Jason's and my entire history, which began in August 1995, that never had any kind of resolution. And it almost broke us up before we were even that serious about each other.

Neither of us actually recall the exact details. Or, perhaps, Jason (who has quite a good memory for intense conversations) may just say he doesn't remember because he doesn't want to have to recount the vivid, possibly grotesque memory of the ball of insecurity that I may have turned into during the talk, which I think may be pretty accurate. That's perfectly fine on my end; I truly do not recount the details. The specifics of that interchange are extremely vague and probably buried deep in my psyche.  I just remember the tenor of the conversation turning incredibly uncomfortable. I remember being indignant and teary-eyed. I remember him acting blindsided, also indignant, and increasingly angry. I remember slamming the door of his car at the end of the evening thinking, "Well, that's done." He actually did tell me that my last (sarcastically delivered) word that night, as I exited the car, was, "Later!" And his was, "Later!"

I do know that I was the one who initiated the conversation, a pretty heavy topic, on a casual date that I think he expected to remain light and casual. Or perhaps he thought he'd get lucky, and my question was a total buzzkill.

The question that started it all was, What is your biggest fear?

To provide some context, we were 24. I had graduated college a couple years earlier, had only been in San Antonio a few months, and I was waiting tables. I was "in between" the types of jobs that my parents could brag about to their friends. I thought I had my proverbial "shit" together (in the parlance of our times) and rationalized that I was just taking the kind of spring break (albeit extended) that I never really got in college.  Jason was going to school, chipping away slowly at classes, and trying to figure out what he wanted to do. And for whatever reason, the very subject of fear started this weird, tense fight between us.

I suspect we were both just giant balls of fear trying to figure ourselves out, honestly, and also trying to figure out if/how other one would fit in the picture. Perhaps it was that fact, along with a true act of God, that kept us from writing each other off.  Because I left that car thinking he was a complete jerk. I suspect he drove away thinking I was crazy. And in my trying to have that conversation, and in his acting like it was completely stupid, we were both right, at least for that night.

The first truly adult relationship move I ever made in my life was to see Jason again. Something told me not to write him off. It was possibly my first courageous act, my first real risk, to treat the relationship as more than a dalliance that didn't pan out. He was courageous in continuing to see me, too--I guess something told him not to write me off, for which I'm grateful every day. For those of you who know our history, it's even more poignant now to think that we stepped forward with each other back then, hand in hand, when we didn't yet have any guarantee how strong those hands were alone or together. We have since faced some fair examples of having to nudge fear aside and do what had to be done. In those situations, my risk reaped amazing rewards, as Jason's courage has always been what led us through. I am proud of and grateful for the rock of a man with which I built this life.

Going back to the days after that night, I wish I could remember how it felt, to go forward despite wanting to run away and play it safe. If I could remember that feeling distinctly enough, it could provide much-needed validation for other risks I face. A gut-compass to tell me I was going in the right direction when I think about doing "the thing you would do if you knew you wouldn't fail."

But it doesn't work like that, does it? That's where faith comes in. Whether you call it God, or your higher power, or the Universe, or just your own intuition and self-reliance, you have to clear the noise, listen, grind through the fear, and move forward to that risk that is calling you to act on it. And grab a strong hand to hold when you do.

A Mothers Day for the living

On the Friday before Mothers Day, my eight-year-old son, Colin, told me that he was going to serve me breakfast in bed.  "Do we have a tray?" he asked.  We do, and I showed him where it was.  He had also made a card for me, which he refused to show me until Sunday.

"What will you make me?" I asked.  "Pancakes and bacon,"  he answered--which is no surprise, as that is his favorite breakfast meal.

I told him that he'd better involve Dad in these plans, and I quietly added bacon to my grocery list.

I don't think I've ever been so happy for Mothers Day to come.  To see my son so engaged in planning, so excited to do this for me, was an utter joy.  I thought that the days leading up to Sunday might be even more delightful than the actual day.

On Saturday, Jason took my son out shopping.  The two of them plotted.

On Sunday morning, I laid in bed watching TV shows on Netflix while the Two Male Speeces buzzed about the kitchen.  I snuck out to get some coffee and was reprimanded.  I promised them I wouldn't come in again, and I said if they just had a bell I could ring when I needed a refill, that would be great.

A few minutes later, Jason and Colin stealthily approached the bedroom door.  I say stealthily because they really did take me by surprise. They were so quiet in their approach, I did not have a chance to video Colin ever-so-carefully carrying the tray of food, juice and syrup into the bedroom.  His face was so serious, stuck in a fretful frown of concentration, he was so afraid to drop it.  As he turned the corner of the foot of our bed, I started crying like I never thought I would at the sight of bacon strips. Here were my two loves--one teaching the other the art of pampering the woman in your life, one eagerly wanting to do a good job at it.

But there was even more.  My son spent his own allowance money buying me shower gel and lotion.  He picked out the scent himself--a scent that he said "smelled like mom."  When I stopped crying and hugged him, I said "I am the luckiest mom in the world because of you."  And he smiled and said,"I'm a great kid."  And I laughed and told him yes.

Later that morning we went to church.  For the first time since Mothers Day 2011, the pastor gave a sermon that did not talk about mothers' dealing with tragedy or crisis.  Oh, it still made me cry, but that's because he showed the video of NBA MVP Kevin Durant paying tribute to his mother.

It was a perfect day. Perfect, as in, with no asterisk.  I can't explain why. It was a day of joy, relaxation, laughter, no cooking (thanks to my lovely mother-in-law for cooking dinner), touching base with my wonderful mom on the phone, and being overwhelmed and thankful for the father and husband that Jason is.  Dylan entered my mind a couple of times throughout the day, and I smiled at the thought of his sweet face and vowed to sit down and watch some videos of him later.  I had the peace that passes all understanding, but also one that arises from a deep knowing that Dylan is in a continual state of joyfulness. In our house this year, the day was for appreciating and being appreciated by the ones I actively nurture--mother, the verb, more so than the noun.  I will be ambushed by sadness, feel cheated, and cry about Dylan another day.  That fire will never fully be extinguished.  But Sunday was for Colin to show me he loved me, for Jason to show him how to love, and for me to relish them both.

I know so many mothers who, most likely, did not have this peace on Sunday.  I know exactly what that feels like, even if our individual stories vary.  I don't pretend to know why we were chosen to lose our kids.  My uneasiness comes when I think of fellow mothers who lost their children too early, who may read this and wail wildly in their anger and sadness.  I only have my prayers to offer that they, too, feel peace someday, and that they are held close and celebrated by their loved ones for all they do.



  

The bear is everywhere

Comedian Lewis Black once told a joke about our awareness (or lack, sometimes) of things around us. I think he was actually referring to a Britney Spears Pepsi commercial that aired a few years back.  He had been unaware of the commercial until someone mentioned it to him, after which he saw it incessantly. To paraphrase, he uses an analogy--something like "So you're talking to your neighbor, who says, 'There's a bear in the neighborhood, sh*tt$ng everywhere.' And you say (skeptically) 'I've never seen a bear around here.' And then the bear starts following you around."

Well, the bear has been following me.

Over the past few months, probably since January, I have had this bear in my periphery.  He holds up signs, makes my friends post messages on Facebook, writes books for me to read, slaps bumper stickers on cars that pass me by on the road, peers in my window, and tells my pastor what to preach about in church. 

Maybe that's a little paranoid.

But it doesn't seem merely coincidental that one subject--and at the core of that subject, one word--has permeated almost every substantial bit of non-work-related discourse I have been engaged in or noticed over the past few months.

For example, one of my high school friends who has long been a successful, confident, happy artist and writer has been posting very frankly and frequently about this one topic.  It is a topic that makes me incredibly nervous, one that I've even fought with my husband about early on in our relationship.  It's a subject that most people struggle with in their life--maybe even for all of their lives.  I am pretty sure that the bear actually kidnapped my friend and forced him to post this content on Facebook and his website.

And yes, I keep seeing bumper stickers about this subject, internet memes, and articles.  And yes, my pastor really has talked about it in more than one sermon.  And no, the answer is not love, kindness or forgiveness. And it came up in the most interesting way in a book I am reading. That damn relentless bear planted the message everywhere.

The subject is fear. Or, rather, overcoming fear to achieve your ideal life.

So, given that I have not posted in awhile--and fear being a factor in my absence, along with some other issues--I will begin my series on fear.  I'll try to make it fun; part book review, part personal anecdote, part sharing other writer's thoughts, and the like.

Welcome to my new digs

I've been doing some remodeling here.

Sorry for the cheesy analogy, but that's truly what it feels like. Trying to give my space a new look, working the elements around a redefined purpose.  You are supposed to tackle space planning projects (or anything, really), with a purpose--and as you know, I have been wrestling with what that is for my blog.  

Much like Dylan's room in our home (sorry, more analogy), it has been painful and tough to redefine this space. With his room, it took months of brief visits, along with some crying, and eventually we started to make little, incremental changes. Removing medical equipment was the first change--and we were eager to do that, even in our grief.  Then giving away medical supplies.  Then baby furniture.  Then some packing away of his most cherished things. It was hard work.  Have you ever felt deep fatigue in your entire body and soul after something?

It turns out that the room has multiple purposes now, and one of them is still to house some of Dylan's memories.  We have his Winnie the Pooh doll, his doggy, and a couple of angel figurines on the dresser.  Other memories are in a box in the closet. The walls have been painted, and my sewing machine now lives there on a sewing table--the promise of a pleasant hobby awaiting me when I have some time to reacquaint myself with threading a bobbin correctly.  With our futon, a dresser and nightstand in place, it also serves as a guestroom--primarily for our mothers so far, which seems fitting. The window provides welcome light into our hallway, so we keep the blinds open.   

From that experience, I am slowly learning that I don't want to, or intend to, completely move Dylan's presence out of this blog, just as he will never leave my mind or my heart.  But I am starting to feel content with multi-purpose blogging.  I want to share how Dylan informed my life to be different, to be better, albeit sadder oftentimes, even after the grasp of grief has loosened.  I want to explore ideas that used to stay in my head because I was too busy, or too afraid that they wouldn't mean enough, or be expressed in a way that is eloquent enough.  But I have made a place for these thoughts.  Dylan taught me to make a place for them, and that they had value, even if it was just to me and a few others who love my family.  I think there's still more to say.  

I wrote my last post about the butterflies that swarmed San Antonio during October 2013, the one-year anniversary of his passing.  Those sweet creatures have crept into this space to lift me up once again, to help me face, head-on, such topics as my fear, my beliefs, longing, love, and whatever else I feel passionate about in this "part two" of my life.  You're welcome to join me whenever you desire.       

Diagnosed No More

I'm a little nervous about making this move. But, as I've alluded to a couple of times, it seems to be time to let go.

There is no diagnosis that rules our lives anymore. Well, I don't know if that's completely true. Between my asthma and Colin's ADHD and Auditory Processing issues, we are at least influenced by diagnoses. Mine is old hat; I've dealt with asthma since I've lived here, and I know exactly what I have to do to keep it in check. I also know that, someday, Colin's issues will be as uncontroversial.

But as much as I love Dylan, and as much as it fills my heart with joy that he no longer suffers from Spinal Muscular Atrophy, I have had such a rough time extracting myself from this identity that I had assumed: the mother of a living SMA child. It is such a tragic disease, and witnessing Dylan live every day with it was what made our lives so extraordinary and special. Every day that he lived was a miracle because he rose above the confines of it, and the apparent inevitability of death from it, every day that he was alive. And I got to play a tiny role in his survival, his comfort, his happiness.

I think the grief that ensues for caretakers of kids with life-limiting illnesses reveals a Stockholm Syndrome of sorts. You never wanted your child to have a disease, yet in assimilating to your role as caretaker and assuming a very different type of motherhood than you expected, you become extremely attached to that life and, by association, its origin. Therefore, when you remove the SMA from your life, the loss is twofold; I miss my son terribly; and, oddly, I miss the privilege of being entrusted with my SMA child. It's the extra-ordinariness of watching your little miracle defy odds, and the amazing meaning that it imbues in every moment and every task, that feels as irreplaceable as him.

And so I've still got this blog that refers to this diagnosis, one year and four months after he died.

Last October, the month he was born and the month he died two years later, there was a crazy, unusual number of baby yellow butterflies in San Antonio. At least, it seemed like it.  I would see them every day as I drove around our regular stomping grounds, dozens of them, as if a huge cycle of hatching had taken place.  They were a great comfort to me some days, especially since we were approaching both his birthday and the year anniversary of his death. On easier days, they were just a nice diversion for a few seconds at a stoplight.  But I noticed them every day.  In my search for a new name for the blog, I Googled about these yellow butterflies and found a few types that were common to the Southern part of the United States and Mexico because of the warm weather.  Their formal names were nothing useful or poetic, but the flurry of little yellow wings each day reminded me of Dylan and the way his smile, the flapping of his feet, and his coos and noises uplifted me.

To truly honor your loved one, you have to separate those uplifting memories from the pain of loss.  You have to remain uplifted when the uplifter--and his diagnosis--are gone.  You may not have that identity anymore, but have to lift yourself up so that the extra-ordinariness doesn't fade away from your life.  What else is there but to be better than you were before?

So, I'm trying to let those little yellow wings that Dylan sent lift me up farther than I thought I could go, just as his life--and his illness--did. And the next time you come here, there will be no diagnosis.

February 7, 1995

19 years ago on this date, I rolled into San Antonio, Texas for the first time. It wasn't as cold as it is today, but it was foggy and damp--and at 4 a.m., it was too dark to see what lay in front of me.

I was moving with a friend, an ex-co-worker whose adopted mother lived here. I was in a dead-end job, working in marketing for a casino in Laughlin, Nevada that was in financial peril. (How awful does that look on your resume, less than two years out of college, that you handled advertising for an enterprise that was going belly up?) I had broken up with my four-year boyfriend a few months earlier, unwilling to settle for marrying in my early twenties into a family of funeral home owners.  

It was the one time in my life, that I can recall, in which I had virtually nothing to lose. It was my opportunity to try out a brand new, unfamiliar place.  I had a roommate, we had an apartment, and our furniture posessions were compatible. I had enough to pay a couple months' rent, gas up, and eat. What else did I need?

19 years later, I marvel on this life that has slowly unfolded, revealed itself like the city did as the sun arose and the fog cleared. Unknown, and rather unimpressive at first. But you have to get in it, work in it, meet people, eat and drink with friends, get lost, explore. Mind you, I had never lived in a city larger than around 30,000 people!  

And I did explore. I met my soul mate later that year and married him in 1998. I got iobs--waiting tables on the Riverwalk at first, just to make money. Then other jobs--seven different employers, two of them comprising 13 of my 19 years here.  I still have friends from nearly every job. I've had two beautiful kids here.  I've lost two loved ones since I've lived here--my sister and my son. I've hurt deeply here.  I've bought my first house here, traveled to great places from here, and witnessed the unfolding of September 11, 2001. I've experienced more fear, pain, joy, stress, laughter and awakenings here than any other place on Earth. Here.

Facebook has been celebrating its ten-year anniversary lately by culling photos and posts from everyone's pages and making individual slide shows. Besides being a bit quick, ithe videos are also a stark reminder of how little Facebook really captures the whole of our lives, due to our own self-editing. We're entitled to that. But, as I look back at my last 19 years in San Antonio, the beauty lies in the unvarnished version of this extraordinary life I've lived. Evidence lies in the many friends I have on and off Facebook, in the photos I do and do not share, the thoughts I post and the thoughts I keep to myself.  If I could build that video, it would truly be exquisite.

How blessed I am for this life.

Groundhog Day Resolutions

Happy Groundhog Day...um, plus one.  It's an exciting time, for those of us in the minority who maintain that Groundhog Day is a much better day to start resolutions than January 1.  It's perfect, really.  The gym has cleared of all of those "January oners" who vowed to exercise.  The Super Bowl is over, so you can safely swear off hot wings. And the cold weather is closer to gone (at least in South Texas), so you can commune with nature more, if that's on your list. 

The other advantage of implementing your resolve on February 2 instead of January 1 is that you have a whole month to hear others' resolution lists, giving you the fodder to think about yours carefully while you pay off Christmas and get back into the post-holiday groove of normal life.  January is the hunkering-down month, the nothing-special month, perfect for reflecting and making notes. Much better, really, than trying to reflect while the frenzy of holidays and relatives clouds your judgment.  I wrote a little down almost every day, allowing myself the luxury of time to think about my priorities. 

So, after a month of rumination, here is my list:

Look up.  This was inspired by an acquaintance and fellow alumni of my graduate English program.  It means to keep your eyes and your heart open and ready for "amazing little discoveries."  This acquaintance, writer and designer Alyson Wagner, sent me a wonderful New Year's e-card that she designed with this image, an uplifting discovery she made on a winter walk.  It was perfect medicine for my lost feelings of "what is next?" 

 

 

1) Keep writing.  As I mentioned, I have felt so lost lately without my little one to write about.  It's ironic that once my grief over his death started to subside, a deep grief for the loss of the words that Dylan helped me create has overtaken me.  But I've always been a writer, of different sorts (persuasive and informational)--I was just too afraid to let the good stuff out, the stuff that doesn't garner a paycheck but pays so much more.  And the subject matter--unconditional love, loss, having your soul refined by a traumatic experience--is still relevant, will always be relevant.  I just need to render it through the lens of my life going forward. Part of this resolution is changing the name of the blog to stop dwelling on the disease that no longer exists.  I am in the next part of my life, informed by all that I have experienced and mindful of his spirit as a source of deep strength and love.  And the blog's name needs to reflect that while honoring him, since it was him who changed me.  It's coming soon.    

 

2) Read my friends' books.  Nothing is better than keeping good creative company if you want to keep your own creativity flowing.  I am fortunate enough to know a few wonderfully creative and fearless people who have written books, and I plan to read them all--and share information about them here--throughout the year. 

 

3) Finish reading David and Goliath.  I started reading Malcolm Gladwell's latest book last year and have been too addled with the details and drudgeries of daily life to complete it.  But, as a mother of a child who is wrangling the challenges presented by ADHD, auditory processing disorders and developmental language issues (not to mention the loss of his little brother), I really need to consume and live its message. Gladwell proposes that the adversity that we tend to associate with the underdogs of the world--deaths, learning disabilities, discrimination, physical disabilities and other less-than-desirable poker hands--should be interpreted not as disadvantages but as powerful keys to potential greatness. Which leads me to my last resolution...

 

4) Stop feeling sorry for Colin.  I struggle desperately with this one, as any mother would.  I see him struggle with bullies, isolation and poor grades at school (see aforementioned learning issues listed in #3) and I want to hug him constantly just to squeeze out the uneasiness and frustration he feels.  These issues were starting to arise when Dylan was still with us and have worsened as Colin advances in grade levels.  Maybe the trauma of losing Dylan exacerbated them.  But, as much as I want to cradle that big 8-year-old in my arms and rock him every day for hours, I can't just make these things go away.  My job is to get him the professional help he needs, encourage him to work hard, cheer him on to success and insist he stick with it. I already know that overcoming these obstacles will build a character as strong as steel in him.  He will know the meaning of excruciatingly hard work by the time he graduates high school, unlike those kids who never struggled with their schoolwork. He will know about loss and sadness more than most others his age, and that will make him especially tender and compassionate toward those he loves.  He will be an amazing man for these things--unless I get in the way by coddling and pitying him.       

 

5) Oh, yeah--and try not to drink too much beer, as it makes my midsection all mushy. 

 

So, I'm holding myself to these things and will talk about them throughout the year.  Especially the resolution to look up, become aware of everything around me, and make those little discoveries that change your life.  That's the difference Dylan made. 

Moving on

Those words are hard to see on the screen. But it is happening.

Incredibly slowly, like a glacier melting, I seem to have moved into a phase that lies just a hair, a drop, beyond grief.

The episodes of being ambushed by sadness are infrequent, almost non-existent.  It's not that I don't miss Dylan, but I am just removed enough that I can call up those feelings when I want to think about him.  I can look at pictures and videos and choose to cry, to laugh, to miss the sound of his sweet voice.  When I do look at them, it feels slightly surreal.  We had this beautiful child, and now he's gone from us. But the sadness that this activity generates is still prompted by me, instead of it surprising me.

When I am with Jason and Colin nowadays, it feels complete.  It no longer feels as though someone is missing, for whatever reason.  I never thought it would feel that way again.  In the 2008-2009 time period, Jason and I tried on and off for several months to conceive a child.  Eight different inseminations, some without fertility drugs, some with.  I even underwent acupuncture.  (I figured it couldn't hurt.)  But the practice of unsuccessful conceiving can wear on you.  We made a conscious decision to give up around Thanksgiving 2009, after so many cycles of disappointment.  We decided that the three of us were perfect, that we would joyfully embrace our family as it was. And here's the thing: we really were joyful about accepting this life as perfect.

Then Dylan surprised us by being conceived successfully just a few months later.  He also survived the platelet/antibody issue we have when we conceive (which we learned about when Colin was born) that can be fatal to a newborn. But within his first six months, we inevitably learned that he was only supposed to be with us a short while, at least physically.  Two years and 18 days, to be exact. I still marvel at the ride the three of us we were on with him.  Those two years reshaped our lives completely.

Now, he binds us three even closer in a shared experience.  It was as if we were meant to be completely changed through this experience, and then pick up where we had left off in 2009--the happy three. But different.

As I move beyond grief, there are still parts of my life in which I still feel terribly lost.  To be blunt, I am not sure what to do with this blog.  I have always loved to write, wanted to write something important.  One of the greatest by-products of our life with Dylan was the opportunity to choose a brushstroke and a canvas and paint his story.  I wrote not just about a dying child, but about living with Dylan, caring for him, watching his little, fleeting successes, witnessing his decline, and how much love and pain it etched onto my heart.  How deeply amazing this journey was. How he made all our lives matter so much more.  How for me, he was evidence of God's hand on us.  Then I wrote for many months about losing him, learning to live without him.

But now I wonder, how could there be anything else to say that was so important, so enriching, so tragic and beautiful all at one time?  What would I ever write that would be so meaningful as that?  I used to feel a physical void, a void of time, that was left after I did not have my youngest baby to care for anymore.  Now I feel the terrible void of feeling that nothing I could contribute now would be nearly as important as that wonderful story.

Now, what?

Go back to living without writing, as I did before Dylan?  It doesn't feel right. Writing equals awareness, awake-ness, for me.  Dylan opened me up wide, and I prefer the opened-up me, the changed me.  And the blog exemplifies that version of me.  But I also know that I cannot continue to write in a blog titled "Dylan, diagnosed."

So, much like the process of grieving and finding a "new normal" after the death of a loved one, I must find a new purpose for this blog, and a new title.  I am overwhelmed by the task.  But I am compelled to try.

The Spirit of Dylan

Last year around this time, I'm sure I was terribly sad.  But I don't remember it that way.

I recall feeling a wealth, which is to say tidal waves, of gratitude.  I don't know if it was because I still felt freshly full of love and gratitude from the outpouring at Dylan's memorial on November 15.   But I do remember those two things.  Love and gratitude. 

And it wasn't just me.  The typical Christmas for us includes Jason, my mom, my mother-in-law, and Colin.  And we all seemed different. It felt as though we collectively gave ourselves a buy from all the normal holiday stressors.  Of course, we made sure to buy gifts for Colin and each other, and we had a nice dinner, and we did pretty much every tradition we were used to doing. But what didn't seem to occur was the normal tension over giving too many/too extravagant/age-appropriate/likable gifts, or saying something wrong, or the worry over the potatoes being perfect, or if the food was prepared smoothly or if the timing was messed up, leaving something cold, or burned.

We've always had nice Christmases. But last year felt like an elevated state of peacefulness and calm.  Relief that we didn't have to see Dylan suffer on another holiday.  Cognizant of how lucky we were to have had him at all.  Grateful that we had each other.  Blessed in so many ways.

The true, and often forgotten, spirit of Christmas prevailed.

But a lot happens in a year.  Time actually does erode the sharpest pangs of grief, dulling the pointy parts just enough to provide some comfort. I noticed that, after I crossed the year mark, I felt the story of Dylan being nudged, slightly, from the forefront of my own life story to perhaps a volume of a larger set, albeit a big, thick volume.

With that, I feared that we would lose that special peace that Dylan brought.  I'm talking largely about myself here.  I feared that my slow reprieve from pain and return to "normal life" would also return me to worrying about petty stressors. Was everyone getting along, happy?  Did we spend too much?  Not enough?  Did Colin get too many presents?  Why aren't my scalloped potatoes getting thicker? 

But it occurred to me this past Christmas Day that Dylan changed me, and everyone else close to him, permanently, and not just over one year.  He came to us in 2010, a dream that we never thought would happen after failed attempts at conceiving.  We almost lost him to aspiration pneumonia in 2011, then got to bring him home from the hospital two days before Christmas--and what a gift that was. In 2012 we mourned him but also breathed in the peace, love and gratitude that he left us.

Once again, the true spirit of Christmas prevailed. Thank you again, Dylan, for changing me. 

  

All Saints Day

The other day, I ran across the following passage from notes I took at a session on spiritualty held at a statewide conference for pediatric palliative care:

Caring for a child with a life-limiting illness is the closest thing to hard evidence of the existence of God and the validation that you are not in control.

Having graduated with a Journalism degree back in the days when good journalism was still the norm, I have a burning desire to attribute this passage the best that I can.  The facilitator of this session was Ryan Campbell, a chaplain for Children's Medical Center in Dallas, who had this statement on a slide. Unfortunately, I do not recall if these were his words or those of a parent of a dying child.

It doesn't matter.  Dylan did prove to me, beyond doubt, that God exists and is rich in our lives.  I'm ashamed to say that it took a child with SMA to do that.  But I see it now.  Caring for Dylan was the most exquisite thing I have ever done in my entire life, and I had to trust God implicitly to do it.  Staring into Dylan's beautiful blue eyes was witnessing God right in front of me. 

Apparently, God likes to make raspberry noises, because Dylan did them incessantly whenever he was happy.  I'll bet they're both up there doing it now. 

Thank you, little saint.

Disclosure

Colin still wears this shirt, occasionally, and by choice:

It's pretty small, having been bought right before Dylan was born.  Colin was just five years and three months old.  If he lifts his lanky eight-year-old arms up while he's wearing it, you can see his belly.  It has been relegated to the play-clothes drawer, only to be worn on weekends. I started to fold it with the clean laundry the other day and started crying. 

I wanted him to be a big brother so badly, and not to a child who had to leave us so early.  The ache over this loss, Colin's loss, is still strong in my chest--something that has not really subsided over the past year.

Yet Colin's coping skills are much like Jason's and mine. At the beginning of school, on his "About me" worksheet, he wrote "no" under the question about brothers and sisters.  He also told a doctor the other day who asked if he had any siblings that he didn't have any, looking nervously over at me to see if it was okay.

It both saddened me and gave me relief that this self-preservation instinct was intact.  It's the same thing I do.  It's not worth getting into with most people. When I am asked about children, I don't always say I have one--although it's most often the easiest response. Occasionally, there's a situation that allows me to say two without having the other part of the conversation--the "where is he?" part. The other day I was in a waiting room talking to a woman with an infant who was crying.  The woman was self-conscious. We started chatting about infant things, as women often do, and it put her at ease.  Without thinking, I'd talked about giving my youngest one chamomile for an upset tummy, as well as referring to Colin's infant stories.  When the woman asked how many kids I had, I said two.  When it came to infant care, I fully deserved to lay claim to both. 

It's a treat when I can talk about Dylan without having to explain where he is.

The part that hurts me is that Colin feels inclined to hide a part of himself that he was so proud of, a title that he was so thrilled to have.  A love that was so big that now seems to have no place to go.  He is the big brother--of a brother he can no longer kiss, play with, boss around, fight with.  

I am not sure how long he will want to keep wearing the shirt.  I will always keep it for him, long after it is too small to wear.  My hope is that his pain will become smaller and smaller, like his shirt, until he can just put it away as a keepsake and touch it every once in awhile.        

52 Sundays

Dylan's last day in our home was one year ago today.  Not by the date, but by the day. 52 Sundays have passed since he was with us at home.

I hadn't figured that out before this morning in church, and when I did, I cried--right there in church, during musical worship.  I almost walked out, I was crying so much.

52 Sundays ago, October 21, at around 6 a.m., I called the doctor on call and told him that Dylan had been struggling with keeping his sats up. (Translation: his oxygen saturation was dropping below 90 percent, continually.)  Fearing the worst, I asked if we could just try a larger dose of Lasix, a diuretic he had been taking to keep his lungs dry.  We had just come back from the hospital four days earlier after not finding a culprit for his struggling, such as a bacteria or virus, and I wanted to exhaust all my options before resorting to the PICU again. He said yes, let's try it.  He gave me a larger dose and told me to follow up with him later.

Within an hour of giving Dylan the Lasix, he was breathing beautifully, smiling, and surely eager to watch his cartoons in the living room.  We gathered around him with joy.  I can't describe adequately my happiness, my relief, to see his condition improve so vastly.  That did the trick, I thought. That is what he needed--a bigger dose.  He had been taking the previous dose for 10 months and it had never been adjusted for his larger weight.  There was my answer.  I desperately needed it to be the answer.

The birthday party that we had to postpone from the week before--Dylan's birthday party--was on.  We made ribs, had grandparents over, gave Dilly ice cream, opened presents.  My heart was so full with gratitude.  It had been Jason's birthday as well, the day before--so we all rejoiced for our oldest and youngest boys.

The next day, Dylan's struggle returned with a vengeance.  After trying everything we could at home to stabilize him. I rode with him in an ambulance downtown again--for the second time that month.  For the last time, it turned out.  It took the next nine days to figure it out, but it was his body's time to fail, which is the only guarantee you have with Spinal Muscular Atrophy.

Now, 52 Sundays later, I seem to be reliving those very steps.  The ride, the hospital stay, the stable days filled with tenuous hope, and the crashes that dashed hope. Where I would normally find a one-year anniversary kind of arbitrary intellectually, my heart and body doesn't.  I am primordially wired to dread these milestones. I feel it in my core.  And I have to brace myself now to get through to November.

     

Happy Birthday

Today we celebrated our son, Dylan, who would have been three today. I don't know if they celebrate birthdays in Heaven. From what I understand, every day up there could be filled with balloons and firecrackers and puppies and cake. But for us, Dylan's birthday will always be a day I cherish.

Jason had the idea to have friends and family over, maybe have a short video and/or photo slides. He said he wanted to celebrate, rather than mourn. I agreed that it seemed better to focus happily on his birthdate than what would come later this month--the other date. The day that had so much trauma and fear surrounding it that the memory has permeated my body, all the way into my bones, and taken permanent residence. 

Planning a birthday celebration for your child who died is tricky. I didn't want to rememorialize him, but this wasn't just a barbeque, either. 

I wasn't going to have a cake because Dilly couldn't eat cake, but Colin said that we should have cupcakes, and I wanted him to have a vote. So, I went to the store and stood in front of an expanse of party supplies with characters Dylan liked, looking for cupcake decorations. I felt odd and slightly sad. Doing the regular kid decor thing didn't really make sense.

As we got closer to the day, the original ideas dwindled and disappeared from the agenda. No video. No special photo presentation, just the regular scroll of our photo library through the Apple TV. We decided that a balloon release would be just enough remembrance without altering the mood of the party. 

Truthfully, though, I was extremely anxious about the balloons and the tears that would invariably flow from me. I am not one to want to cry with 16 other people around. I didn't want anyone to see how much it still hurts now, nearly a year after we lost him.

I didn't have to, it turns out. 

God gave us rain. Hours worth. Complete with thunder and lightning, and spongy, oversaturated earth. Weather not suitable for balloon-releasing. I sort of smiled picturing a balloon being struck by lightning or beaten down by relentlessly large raindrops.

God gave me the perfect cupcake decorations, too--baking cups with monkeys on them, along with bananas and bright green banana leaves. Dylan's favorite animal. His favorite color. They were in my cupboard the whole time.

God triggered my tears at the perfect time--in the shower before the party. 

God gave us the perfect friends and family, too--ones who understood that our hearts needed their company in order to laugh, to be light, on a day that would otherwise make us so sad.

Broken

Promises, that is. To my sweet angel.  The promise to write something every day. It was a bit unrealistic, clearly.

These days fly by. I think many thoughts about Dylan in the space of each day, sometimes cry, sometimes just smile. According to my pastor, he is now in a state of perpetual love and bliss and, bluntly stated, couldn't give a rat's backside as to whether we down here are sad. I don't mean to sound ugly; quite the opposite, actually. I never want him to feel as though he's missing out on anything wonderful ever again. 

Here on this lowly plane, we struggle. Lately it is Colin who requires so much care into the night. Over the past year we have trialed ADHD meds, joined social skills group therapy, been told he may be on the lower end of the Austism spectrum. We've had some success with the meds, offset by a decent degree of side effects. Tonight he was coughing and stretching his neck so much--a series of motor tics--that he couldn't get to sleep until I rubbed his back and asked him to picture his favorite places. This, after we struggled with homework through bouts of anxiety and tears. From both of us.

We don't yet know the full extent of Colin's challenges. He is like an onion, with many layers of sweetness, inattentiveness, anxiety, daydreaming, monents of stunning clarity, obsessive behavior, eagerness to please, humor that comes outta nowhere, and extreme sadness over his brother. And good old-fashioned kid manipulation. I know I am a target, with the guilt I carry around about failing to provide a healthy brother. Somewhere between my dangerously-close-to-enabling (but too accurate to ignore) suspicion that we're dealing with more disorders than one, and his dad's rampant suspicion that I'm being "played" a whole lot, lies the truth. I'm convinced it's in the middle which, incidentally, is his favorite place to sit. This child is so much different--and harder--than Dylan, in a way. Because with this boy, we have an influence on the outcome.

I've heard the thought stated a few times lately that we are not raising kids, we are creating future adults--which scares the Hell outta me. I need to wrap my head around how to get my child through this massive gauntlet of potential processing or learning disabilities, ADHD, PDD, or whatever, to other other side--an adult who exploits his strengths, has developed strategies around his weaknesses, and is wildly happy. 


And for that, I remember that it's no place for the weary kind. Even though I still feel broken.

This Month

It occurred to me today that this month is going to rip my heart out.

It started yesterday--the first day of a month one year ago that was marked by memories of hard breathing, respiratory distress, two hospital visits, and scary days and nights at home in between. The month of final, irreversible decline. Every day that I drive downtown to work, I cry remembering those drives to the children's hospital one year earlier.

Yesterday, Colin reminded us of the void he feels.  He told God during his nightly prayer that he wishes he had another brother. As a parent, you want to do whatever it takes to remove any void, any pain in your child's heart  But how on Earth are two forty-something, sad, heartbroken, screwed-up parents supposed to seek out another child? Not that I don't think about it...

Today, Colin told me he thought about Dylan's memorial and got sad.

So that's the first two days of October. 29 more to go. 

For now, I've committed to writing something--no matter how small or poorly crafted--for every day in the last month of my littlest one's life. Seems like it's at least better than just crying.

Twinkles

This one's for Kim...

My story--the story of my little angel Dylan, that is--is not such an unusual one, and it comes in different forms, with different kinds of loved ones. 

It so happened more than three years ago that Kim had an unexpected conception--or, rather, a delivery.  An unplanned addition to her family.  And upon receiving this sweet little bundle of joy, she learned pretty quickly about the myriad health complications that would probably, at least statistically, shorten the life of this precious surprise. 

But her little one thrived.  The power of love and proper caring really does make an amazing difference in the life of one who would merely be written off as frail, sick, or merely a runt by the onlooker.  I imagine that, after an initial period of wondering what she had gotten herself into, Kim settled into parenting her charge, bolstered by every day that her new child showed happiness, comfort and love.  Kim did not worry "how long" she had with her sweet baby.  She kissed, stroked, loved, played with, protected.  And the joy that resulted was an unexpected, and quite significant, blessing--one that lasted three years with virtually no issues.

Over the summer however, Kim's little sweetie took a turn for the worse.  She started having heart failure and trouble breathing.  Medication helped her to be comfortable for awhile longer, but her sickness ultimately made her suffer, then took its toll.  Kim had to say goodbye to her on July 29.

I could tell Kim felt sheepish about being so scared and worried during Twinkles' bouts at the animal hospital, and for being so terribly sad after Twinkles passed.  Seeing as how she was a dog and all.  

But I can't express strongly enough how much my husband and I hurt for her.  I am pretty sure we knew exactly how she felt.  It doesn't matter whether it's a child, parent, sibling or pet. When your love carries someone that you love farther in life than they were supposed to go, and you experience such incredible joy along the way, it blesses you beyond your wildest imagination.  And the experience refines you with its overwhelming swells of love and pain.

Rest In Peace, Twinkles.  Give Dylan a nudge with your cold little nose.  I hope he pets your soft fur so you both get to feel wonderful.

Aloha, Dilly

The tan granules of Dylan's remains contrasted starkly with the black, volcanic sand of Hana Bay.

We were in Maui, our sixth day of a dream vacation.  Throughout the week we rode in a helicopter over Molokai's mountains, watched the sun rise over the volcanic crater at Haleakala, tore up the water slide at our resort, boogie boarded on Kamaole beach, attended a luau, and marveled at the scenery on our little road trips to open markets and organic cafes.  Today was our trip on the famous road to Hana, a slow, switchback-laden drive through the most amazing rainforests I had ever seen.  It was July 4th.  It was our last full day on the island. The trade winds combined with some light rain to create a welcome coolness, and the holiday made for light traffic. Our last stop was to Hana's black sand beach to splash in the water, a reward for Colin's patience on the road and a way to stretch our legs and relax for awhile until we took the winding road back to the other side of the island. 

I think we may not have even done it--that is, spread Dylan's ashes on the beach. We were so relaxed and in love with our surroundings, it was hard to think about shifting the mood.  But we had talked about it for months. It was a promise that we had made long ago, to take our sons to Hawaii, and I felt the need to keep it. 

Colin was the first one to reach in and take some of the ashes.  I told Colin that his dad and I always dreamed of the day we could take our kids to Hawaii, ever since I traveled to Oahu eight years ago with him in my belly.  But it didn't work out the way we hoped for our little Dylan.  We had to say goodbye to him so soon after he came into our life.  Someday we will say hello to him again.  So we wanted to bring him here with us and say "Aloha," which means both hello and goodbye. 

We each took some ashes and sprinkled them on the ground. I started to cry a little at the end of my speech.  My habit is to try to keep it together in front of Colin so he doesn't get scared, but I didn't pull it back soon enough, and I saw the alarm in his face.  I told him I was okay, and we started to walk away when Colin stopped, covered his face with his hands, and started to sob loudly.

I sat down with him on a picnic table by the tree where we left Dylan and hugged him, wrapping my arms around his bare, tanned shoulders, relieved that he was letting something out that may have been stuck inside.



    

An Army of Mourners

Lately I have been deluged with stories of untimely passing.

Of course, the most prominent one was the tragedy in Boston at the marathon.  I used to think about that event as such a whimsical, terrific party.  Runners in their "Wicked Pissah" shirts from a past race year worn as a badge of honor.  Crowds of Red Sox fans leaving that day's game to walk down the street and cheer on the runners.  A few people staging their own type of marathon in the local bahs.  What a wonderful way to celebrate Patriot's Day, now marred with shrapnel that finds its way into the tissue and sinew of the tradition, maiming it.  Loved ones hurt terribly, limbs amputated, or even dead, just for loving their runners and loving the run.  

But that wasn't the only instance. Just Sunday, I ran across a post on Facebook--I think it was "liked" by a friend, but I can't even remember which one--about a mom and dad who were spending the last days with their five-and-a-half-year-old son after he was pronounced brain-dead.  I started reading their story, and I just couldn't stop.  He had a number of health issues related to a diagnosis of Cerebral Palsy, and at this point in his life he suffered from major cardiac arrest.  His mom and dad held him, still breathing, for several days while they found recipients for some of his organs.  What a wonderful vigil--holding, caressing, and sleeping next to your son up until the very moment that he can be a hero to some excited, hopeful family.  On Monday, at 2:45 (as in just minutes before the Boston bombing) their Facebook page reported that they walked him down to the OR, where they said their final goodbye.  Doctors, nurses and social workers clapped.

The Friday before, another one of our SMA angels in Texas got her wings, a beautiful little girl named Savannah.  I didn't know her parents personally, but I knew about their daughter through posts from Families of SMA about a run held near Houston every year that is named after (Savannah Smiles) to raise money for SMA research.  She was just a few months older than Dylan and would have turned three in June.   

There have been others, too, since Dylan died--but the dates were spread out. I at least had time to reflect, to pray, to collect myself in between.  But these latest events occurred in a three-day span that also preceded my participating today in a class exercise on death and dying with first-year medical students.  So I have felt immersed in my topic.  And, I met yet another mom today--a participant--who still grieves her three-year-old angel. 

I guess what I think is salient here--what I don't want to forget, and what I wish everyone knew--is that there is a literal army of parents handing their children up to God and falling to their knees, every day.  Simultaneously at any given moment, someone is saying goodbye to their child, either because of a tragedy with no warning, or a disease that affects your child's genes and severely limits their lifespan and abilities, or a number of other reasons, none making any sense. 

In my case and those like mine, I wonder every day, what happens to dragon moms when their little ones no longer require their fierce protection?

That's what grieving is all about, it seems.  Finding a new purpose. I have struggled with this one for almost six months. Sure, some of them are easy to identify--continue to be a friend, a wife, and if you're lucky, a mother to the survivors. Heal yourself and your loved ones, for the day when joy returns and you can breathe differently. Thank God for the exquisite experience, even though you're sad and angry as hell.  Pray for the dying and their mothers, their siblings, their fathers, their children. Donate the clothes that are left, the medical supplies, the time you now have. 

I don't know what else I will do yet to carry on Dylan's memory.  But today I offered my story, breaking down and sniveling, to twenty-something med-school students in their pristine white coats, so that they may possibly be the least bit prepared for the first time a parent weeps and snivels in anguish on them. 

Stronger than you think

I was nursing nasty bruises, skinned surfaces and scabbed-over cuts for more than a week.

I took a self-defense class at one of the local Krav Maga studios a couple of weeks ago, which is where I acquired my wounds. One big cut on my elbow, bruises up and down my arms, big string of bruises on my left leg, some scratches. Oh, yeah--I also had a big scab on the heel of my right hand, which I got tripping on the sidewalk in front of my work three days earlier.  It got opened up pretty nicely again at the class.  I looked like I had joined a fight club.

This class was a three-hour session that worked my every muscle. We learned how to break a chokehold and bend back an attacker's wrist; how to protect your face while throwing a palm or elbow at your attacker's nose; how to grab your attacker on the meaty part of his tricep and shoulder, dig your nails in, and pull him toward you to knee his groin; how to take advantage of the mere milliseconds a man needs to unzip his pants, before raping you, to scoot back and kick his face.  We practiced these moves with our partners and with bags typically used for martial arts and boxing training.  Then we had to fight off attackers in staged scenarios.

I didn't get cut or bruised because these men were unusually rough, or because the class was conducted recklessly or irresponsibly.  I got cut because I went to town on my pretend attackers. 

If we had to hit a practice bag with the heels of our hands, I hit the bag until one of my hands was bleeding and needed to be wrapped up.  I elbowed the bag until my skin was raw.  I banged my attacker's head into the ground (again, the bag) violently, my whole body straddling the bag, hair flying, until I dripped sweat into the pretend attacker's pretend eyes (if, of course, by some miracle they would still have been open). On my three staged attacks, not one of the men took me down to the ground. 

Rape survivors are encouraged to take these classes to regain a feeling of power over their own bodies.  Many were there that day, sometimes having to turn, shaking and in tears, to counselors in attendance from the Rape Crisis Center after a drill. 

I am lucky enough to say I have never been raped.  But Lord knows I have felt powerless.     

It has been too long since I have felt powerful.  I wouldn't even to try to recall it--the last time I felt, frankly, like a bad-ass.  Maybe never.  And it wasn't an isolated feeling--it was mixed with fear, and hypervigilance, and adrenalin, and anger, and fatigue, and sadness for the women around me who had survived unspeakable violations.  The combination of those feelings actually concocted my power.  I have experienced these feelings, in various combinations, more than my share of times over the past couple of years.  But never did I feel empowered. 

This time was different, because self-defense is based on the idea that if you just keep fighting, you can change the outcome.  That's what creates the power--influence over the outcome.  That is what made those bruises such badges of honor, what had me so ramped up with excitement after the class.  Over the last couple of years, power had been drained from my body because all that I did was useless to change the outcome.

The class restored me.  And it opened me up, much like my tiny injuries. 

When you have survived something tragic, like the loss of your son, you kinda want everyone to see those bruises and know that you're still walking around.