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.