The Process of Bringing My Blog Archives Back To Life is NUTS!

Our Park City House, May, 2006
Our Park City House, May, 2006

Every so often I try to tackle my blog archives. I say, every so often, because tackling my archives is a complex, time sucking, and emotionally consuming (totally existential) endeavor. See, I didn’t just remove my posts from the public’s view by say setting them to “draft” in the backend of my website, I (literally) yanked my blog offline (well Dave yanked it because I asked him to). Consequently, for the past several years, my blog has existed (been stored) in a variety of database files. I know. Crazy, right? I completely agree! In truth, this creative act of duct-taping all the former pieces together is often why I find myself republishing my archives only “every so often.” And when I actually do jump into the republishing “process,” I always ask myself the same question:

Our first Christmas in the Park City House. December 2007.
Our first Christmas in the Park City House. December 2007.

“Beth, why oh why did you ever take your blog down?”

Good question. I am sure my therapist will have a much different answer than the one I present here [wink wink]. And really, my answer is always dependent on my mood, the time of the month, or what crazy emotion a specific post reignites. Recently, and after reanimating several posts, Dave and I both weighed in. We agree (yet again). I was an idiot for taking my blog offline – if only for the fact that keeping my blog online would make this whole re-publishing process easier – and it would.

Park City House in Winter
Park City House in Winter

Further, I think it is helpful to understand the process to see why it drives me nuts. First, before reposting/reanimating, I always recheck the post for bad grammar (don’t judge. I am sure I could re-edit until the cows come home and you would still find a comma splice, dangling modifier, or run-on sentence). Next, there are the images. Currently the images that are attached to the archived post only exist in file names (99% off the time). What the image issue implies is if I want the image, I need to relocate it, or find a similar image from the same time period. Ay-yi-yi! The image issue is confounded because new blog software requires me to set a post image. If I do not have a set post image, my blog posts look dumb. And because appearance is everything [wink wink], “dumb” is not acceptable. Then there are the links. In my old posts, they are often dead — not always, but often, which is almost worse. And because I am totally OCD, I search out active links that correlate with the old link. Yesterday, I searched for Tom Cruise and his couch-jumping, Oprah chewing out James Frey, and Oprah speaking about Hurricane Katrina. What I learned: late-winter-and-early-spring-of-2006 Beth loves the Oprah! The boys were also age four and six at the time. I think Oprah was a good friend to 2006-Beth.

Moving past Oprah, and the links to Oprah, there is the vanity part. I mean my vanity, which is in direct proportion to my comment total. Pushing further, you and I both know that the amount of comments one has directly correlates to how awesome one is. See, I may not be awesome now, but long ago, in a land far, far away I was, awesome, that is [wink wink]. The formula is simple. Because I am vain (and used to be awesome), I want people to see the accompanying thread. It still kills me that I have misplaced most of them like the 148 comments that accompanied one of my craziest posts. If one can be that awesome after a post like that, well then, wow! So in my search for the missing comments, just yesterday I came one step closer to finding them. They are not only in a database, they are attached to Moveable Type not WordPress. They are probably gone and I will get over it, because in truth, everyone is awesome!

Love that we always had moose in our yard. Park City, Utah
Love that we always had moose in our yard. Park City, Utah

While we’re on the topic of my comment vanity, the craziest, hardest, most exhilarating, most healing and weirdest part about re-posting old posts is falling into the emotional vortex of my past. Consequently, when I work on bringing a post back to life, I find it very difficult not to fall in. Because I did not have a crystal ball back then or have one now, I could not see. I could not see what would be important now. For instance, in my posts in the Spring of 2006, I see a woman getting caught up in a Mommy Blogger World. My posts became more about getting along with other mommy bloggers than being true to myself. I see myself getting sadder and sadder and I now see that stepping away was really smart, actually. I see how frustrated I was and how frustrating that world was. To fit in, I was starting to hide a lot of who I was. I became fearful. Ultimately, brave-Beth morphed into a very insecure lady. I had a hard time calling bullshit and often couched my frustrations in posts about truth-telling. Dude, I wrote so many posts about truth. I was mad. Why didn’t I just say it? Anyway.

As I re-read my old posts I noticed that I hold onto everything personal. Meaning, if Kyle or Eli said something cute, I want more. When I mentioned a trip, I want to know where we went. Why didn’t I write down where we went? So weird. When I briefly mentioned Park City, or that we were building a house there, I wanted details. What I know now is that I wish I had been less concerned about getting a ton of comments (for instance) and more concerned about recording the cool details going on around me, details like what it was like to build a freaking house in Park City, Utah. I am so proud of Dave. I still am. The process was completely mind-blowing, hilarious, marriage-testing and totally worth it. Did I ever tell you how Dave bought our land in Park City? He literally called my bluff.
Dave was very interested in living in Park City, and had been looking at lots. I did not particularly want to live in Park City. He found a lot up in a canyon that was in the crook of a bend in the road. I said,

Our Park City House when we put it up for sale
Our Park City House when we put it up for sale

“I don’t like that lot. Now, if it were one of those lots across the street in that cozy little enclave, then I would be interested”

Those lots were not for sale. I thought I was safe. Little did I know that Dave would go to the city, see who owned the plots, approach the owner and ask if they would be interested in selling it to us. They were. Bluff called.

Did you know Dave also put a team together, and with his own two hands built a Park City mountain retreat? Our Park City neighbors were also building a house (the same ones who sold us the plot). I thought it was hilarious that the contractors let Dave and his team have at the discarded (almost new) pieces of wood they carelessly threw away each day, to the extent that at least 5% of our house was built with materials scrounged from the neighbor’s dumpster.

The guy who taught Dave everything he knows about carpentry was our college friend James. I did not think it was hilarious when James’ dog bit the neighbor (and Eli). James also went AWOL and Dave had to complete the job on his own. He rocked it. I hated that all of our tools were stolen (out of a huge lock box no less). I loved that after our tools were stolen that Aaron, one of the guys working on the house moved into the old camper on our lot. I loved Fatty the Squirrel. Phil, another builder, did not love that Fatty always ate his lunch. To help Phil save his lunch, we bought him a locking lunchbox. Fatty had it coming to him the day he was hit by a car. May he rest in peace. I loved our Moose! And yes, ask anyone, I hated living in that snowy mountain place, yet I absolutely loved that house! We miss it!

… So back in 2006 (because those are the archives I am working on now) I wish I could have seen the future. I wish that all of us could. Blogs were new. We took our cues from the Mommy-blog leaders and thought, at least I did, that we needed to write like they were writing. Trying to one-up the personal tragedy of other mommy bloggers grew old. Looking back, I wish I did not feel like I had to tailor my content to get the attention of other mommy bloggers. Now I see that before there was sponsorship sell-out, bloggers were selling out to each other (myself included). Further, publicly writing my pain on a daily basis became tiresome (and was sort of dishonest because it made people think my life was much sadder than it was). Today, the landscape has completely changed. I am not sure that is such a bad thing. I see those old blogs old-school bloggers pulling the plug on their once cherished blogs. Yet, in a full circle moment, maybe blogs of today will fund their success by returning to the very beginnings, the time before sponsorships, the time before people really cared about keeping up, the time where we were (possibly) our truest selves. Just a thought.

Our last day in  our Park City House, January 31, 2014.
Our last day in our Park City House, January 31, 2014.

Whatever the case, I am happy to be reviving my archives now.

Tagged :

Stevens Johnson Syndrome Family Recovery: Tell Me How to Cry. Please.

Me & the Boys

It appears that I have lost the ability to cry. No. Really I have. Once in a while I can muster up some mist around my eyes. On occasion I can even convince a few tears to roll (albeit uncomfortably) down my face. And once in a while a kind word, or an unexpected look pushes all the tears out. Of course these unexpected tear-moments make me furious. Then, as quickly as the tears start, I demand they stop.

Earlier, as I sat in my therapist’s office (yes I go to therapy, don’t you), well, as I sat in her office with purpose I declared,

“Today I am going to cry! I need to cry! I do not know how I am going to cry, but I will. I will think of dead puppies or cute little babies, babies lost at Disneyland, that is. I will imagine sad things until one of these heartbreaking images finally dislodges my tears.  I know they will. I know they will, because I really need to weep.”

We laughed. I urged her to shout at me, humiliate me, and demand that I cry. Saying something like this, I suggested:

“Cry, Beth! Cry Now!”

We laughed. And then I came close.

Here is how it happened. I said something like this,

“I think this next story would make anyone cry.”

Just thinking about Kyle and his crazy bloodied face made my throat swell, and my heart scream. Then I talked about all the people I pissed off while Kyle was in the hospital, people who had their own version of helping and being involved. I am usually week to these sorts of offers. But because this was about Kyle, not me, I found some strength to give him what he needed, not what the helpers thought he (and really our family) should have.

“I don’t understand why they didn’t get it.” I exclaimed and continued,  “I had nothing to give. Why couldn’t anyone see that. I was doing my best to keep Kyle alive. I was doing my best to make sure he didn’t go blind. I shut the world out so I could stay afloat. Why don”t people get that?”

I still do not know why people do not get that. I was not letting anyone in. Dudes, I cannot even cry. Why would you think I could accept your help?

As often is the case while in therapy, or really, while talking, words were coming out of my mouths and I was thinking about something completely different. I was thinking about about the second time we admitted Kyle to Primary Children’s Hospital. I was talking about crying and what I was seeing is Kyle. I saw him. I see him sitting in that 3rd Floor hospital room, pleading, pleading with all of us. In my imaginings I see him in worn hospital clothes. In truth, he was wearing his own pajamas. I see him screaming.  In reality, he was screaming. Instead of tears, I felt anxious. I felt sick and I thought about how we had to change Kyle’s his room. It is strange the things that happen in the hospital. For us, we felt claustrophobic, which I am sure is not completely uncommon. Consequently, the first room they assigned us to was way too small. Kyle and I were breathless and overwhelmed. I am certain there is a good argument about Feng Shui somewhere in there. Thankfully, the nurses were nice. They knew how devastated Kyle was to be back and moved us to a different room. Thank God they did.
We were no more than five minutes into our new room when Kyle stood in the center. Emphatic, he began screaming:

“I DO NOT WANT TO BE HERE! PLEASE! PLEASE GET ME OUT OF HERE!”

Yes. It was too much. The vision of Kyle scabby-faced and powerless was enough to send me back to the moment I was in now — back in my therapist’s office. Safely away from that moment, I took a breath and watched as Kyle walked away from the center of his new room over to the windowsill. He climbed up onto the windowsill, turning his body away whimpered,

 “PLEASE MOM! DAD! PLEASE TAKE ME HOME! PLEASE!”

Kyle had been sick for so long. I was so sad for my boy. I was mad. I was exhausted.  Like a runaway train, helplessly, Dave and I stood there watching. We watched as our boy completely unraveled.  Thank God for angels. Because as we stood all dear-in-headlights like, our former neighbor happened to walk. Lo and behold she is in charge of Patient Relations.

“PLEASE.” I asked her. “I don’t know what to do. He is losing his mind. He feels so trapped and helpless. He is mad. He is not getting better. We had to bring him back for a new treatment. He is depressed. He does not believe it will work. He does not trust us.”

I do not know why she was there, but she was. It was around 7:00PM. We delayed, I mean fought, bringing Kyle back to the hospital. We did not want to put Kyle through any more unnecessary treatments.

“Can you come talk to him?” I asked her.

“Sure.” She came in the room and tried.

“Please. Please let me go home! Why? Why do I have to be here?” Kyle pleaded in choked and heaving sobs.

I knew it. I knew how he was feeling: Powerless. Your life, your every breath is in someone else’s hands. It is black, breathless and sad. Kyle was suffocating and so were we.

“Kyle, I know it is not fun, but you have to be here. You have to be here to get better. Your doctor needs you here. She needs to make sure you are ok.” She said.

Kyle screamed and cried out, “WHY DIDN’T YOU MAKE ME BETTER THE FIRST TIME? I WANT TO GO HOME! WHY? WHY DO I HAVE TO BE HERE?”

She continued, “Kyle, they want make you better.”

Now quietly pleaded, he said, “Please — please let me go home.”

“Beth, Beth, what do you want me to do? I do not know what to do.” She said.

“He is scared. He is mad and he does not understand. He feels cheated. He does not trust that he will be ok. He is not better and he is so tired of being sick.”

I walked out of Kyle’s new hospital room to catch my breath. That is what I did. She followed. My friend tracked down a hospital social worker who literally talked Kyle off of the window sill.

I felt my voice crack. I feel it crack now. Tears want to come and then I hold my breath. Now it is a habit.

My therapist talked about how locked down I am. I am.

“It is understandable, Beth. You could not let your guard down. You had to be there for Kyle, for Eli and for your family. You had to stay strong.”

“And now it is cumulative.” I said. “I think I stopped crying and unplugged after my miscarriage(s) and then we moved. Every time there is a new heartbreak, my tears grow smaller and smaller. I don’t know how to heal my broken heart. I do not know how so I take deep breath and move forward. And now, I do not know how to cry.”

So back in that room and ever so ironically, I thought about my college boyfriend. When we finally broke up, I cried for months. It was ridiculous how much I could cry.  Ask anyone who knew me then, I I could not stop. I am a little embarrassed about that time and today, I also long for that time. I long for those moments when I could cry so deeply and so freely.

As far as my tears go, I always come close.

Then I snap out of it. See, what they don’t tell you is that when you come home from the hospital like actually might get worse. It is lonely. Visitors stop coming (yes, probably because I scared them away -wink, wink). Instead, I think I need to be strong. And right now as I type this post Kyle is sick again. He is sick a lot. His immune system is so weak. I start to believe everything is ok and then he is sick. He says,

“I just want to sit here and be with you.”

What do I do with that? When will he be safe? Forget crying. When can I breathe?

This is Kyle after he was home from the hospital, the time he was supposedly better.
This is Kyle after he was home from the hospital, the time he was supposedly better.

 

Tagged : / / / /

Topics Chosen by My Sons: The Economy, Difficult Friends & Crazy Mom in the Snow

My Family

Me: “Hey Eli will you give me a topic?”

Eli: “How about the Economy?”

[we all break into laughter and Eli and his friend run off.]

Me: “Now that is broad.”

I wait a few minutes. Kyle is playing Blokus with his friend. I think I will try this again.

Me: “Hey Kyle what should I write about?”

Kyle: “I know. How about dealing with your friends? You know, Difficult ones?”

Me: “Really? Another complicated subject.” And then I think to myself, “Way too complex and anything I say about friends will surely offend someone out there.”

[I pause.]

Me: “Come on. Seriously. I need your help. Give me another suggestion, please?”

Kyle: “Mom, I know. Write about dealing with claustrophobia — because you live in the snow?”

Me: “hmmmm?”

[contemplative pause]

Kyle: “Mom, really you know the snow! The snow. Because you do not like it. Yes, I am talking about you and how you do not like living in the snow.”

[Again we all laugh. Kyle and his friend put their game away and walk off.]

I am left here thinking, By golly, “I think these boys know their mom.”

Yes, Eli is quite astute suggesting I write about the state of the economy, either Salad Days or Tap-Water-Only days, I am always worried about money and I see that my boy knows it. Maybe I am worried because this is how I roll. Maybe I am worried because I did not grow up with much and I have seen how quickly it can all slip away. And maybe even I think a lot about the state of our finances because I have a super-coupon-using husband, a husband who does not let me walk out the door without one of his Happenings Coupons, Groupons, Living Social or any various specific store or restaurant coupons. Online he is a PRO at quadrupling his discounts. He seriously could have his very own TLC show called something like, BIG DADDY DOES COUPONS. I have learned early to love and be grateful (come on, he saves us money) for this fact about Dave. And if Kyle and Eli absorb anything besides my will-you-please-pick-your-coat-up-off-the-floor-and-hang-it-up-and-stop-wiping-your-boogers-on-everything motherly requests, well maybe, if they have absorbed anything, they will absorbed our crazy, yet measured frugality.

The topic of  friends and friendships go is a dicy one. I know Kyle has no grasp of  internet wrath, or better, Kyle does not understand the intense horror when one encounters a pissed off woman! I am kind of relieved that he has been spared such as dealing with the wrath of an angry friend. It’s a gamble. Even when I think I am writing something nice or measured, I have learned that my nice or my measured may not convey.  So to address the topic of friends and friendships, the only way I could write about friendship difficulties is to go all Fight Club on this post. You know what I mean?  What I say on this post stays on this post [wink wink].  I say most of this in jest because I, myself, have learned in the hardest of ways online and offline that you should just keep your mouth shut. As a vocal woman, shutting my mouth can be difficult. Thank God for Dave, my personal sounding board. Were it not for him, my head would surely explode.

What I can HONESTLY say to my sons is that all friendship is an opportunity. If things do not go the way you want them to, then reframe, maybe move on and look at what that friendship has taught you. I know I learn every single day from my boys and from the very happy and extremely heartbreaking moments they have experienced as they learn how to be a friend. Healthy friendships are something to be mastered. What I can give my boys is my example. If I make a mistake, I own it. This morning, for instance, I completely lost my shit when I saw that my son (who shall rename nameless, but you have a 50% chance of getting it right), well, my son covered a nice custom-made ladder with stickers. Sure, the ladder was in his room. And sure, he thought it was his. Yet, we he and I have talked many many times about how he cannot cover furniture in his “cool” stickers.  Further, if he thinks he would like to cover the furniture in stickers, he should ASK me first! As he and I scraped and scratched the gooey, sticky mess off the ladder, we talked about owning it.

“Hey, you know how when I do something wrong to you (like yell too much), I tell you I was wrong, say I am sorry and try to make it right. You know that, right?”

“Yes.” He said and then I continued, “That is the best we can do.”

Most definitely I would say friendships, actually any relationship, is never a piece of cake. He is smart and he gets it; the power of owning it, dealing with it and moving on. We did not have an school moment such as a hug. Instead, moments later he told me a joke, which let me know that all is well.

I have covered their two topics (friends and coupons). Now I need to address my S.A.D., which I like to call. “Crazy-Mama-in-The-Snow.” How I am dealing with the snow now (it took me long enough) is is to pretend that the SNOW is is not there. Picture a landscape absent of white, glistening snow is easier to do this year. Why? Because we have not had a lot of snow. Here is how I do it. When I look out the window or step out of doors, I simply look up and over the white stuff covering the ground. The darkness, well, it is just an excuse to take a much needed nap. I know my Snow-Hate has been hard on my family. Believe me my seasonal depression is something I am working on. And if I am working to make peace with the crappy snow, what more can they ask for, right? Ok, I know. They can ask for a mom who will ski with them as much as their dad does. I will, however, go to the beach with them any time they want.

The Economy, friends and Crazy-Snow-Mom, have been discussed and I hope the boys approve of what I say. I do not think it matters because now they are off shooting their Nerf Guns (hopefully not at anyone’s eyes) and looking for Zombies in the basement.

 

I’m an idiot Part 3: Dooce and Crazyus

 

 

The idiocy of this post. Here is deal. When I decided I wanted to actively blog again, a well-known blogger told me the following:

“Beth, if you ever wanted to become something again, or even be excepted into the blogging community,  you owe your public an explanation. They need to know what happened between you and Dooce.”

The ridiculousness of it all, is that for some reason I feel like I  (owe you an explanation, that is). Hmmm. Still working on that.

So . . .

Here is my first conundrum, and probably why I find blogging a most paralyzing situation. See, I have not been sure what to say or how to say it. Likewise, I feel weird sharing. I am also terrified of the backlash. I have experienced gas-lighting, and it ain’t fun.

That being said, it is true. For me, 2006 was horrific! My fertility was heartbreaking, my late miscarriage nearly ended me, and dealing with the rise of the mommy-blog-nation FREAKED me out.

Instead of pushing back, or holding my ground, I fell apart. I make no excuses. I am a real human being. Fertility hormones are crazy. Late miscarriages suck! Dealing with other mommies (in such a new and public way) was difficult (at best). Was it hard for you?

Many folks in the blog world understandably associate me (or long ago did [wink wink]) with Dooce and her wildly successful website, DOOCE DOT COM.  Of course they do. For a time, Dooce often chose to write about me and my family in a public format. That is it. In private-friendship world, I would not chose to air this story. BECAUSE this WAS NOT a private friendship, I feel compelled to address it publicly.  And because the world’s most famous and most successful mommy blogger chose to write about me, my husband and my sons, I feel obligated. Isn’t that weird? I think it is.

I also think that is why I am feeling the pressure now. Dooce can remove the posts about me from her website (has she?), and I can take my blog down (I did), YET those posts will always exist — somewhere.

I keep trying to wrap my head around it and to push myself through it.  I also realize that Dooce has written about many, many people.  I think it is her formula and it is brilliant — drama online (where she casts herself in the role of victim). Her relationship talk completely draws the reader in. I think at some point I ceased being a human to her and  simply became character in her online story. And for a time, she often wrote about her BFF, Beth of crazyus.com.  I was on display and I was not certain what to do with all of it, would you?

I hope you will cut me some slack.  I don’t think many people in the industry have. Yes, I benefited from the light Dooce cast on me, but I also have felt the dark and uncomfortable shadow of my association with her.  See, because she publicly wrote regularly about me, when Dooce had an opinion, my world assumed I thought the same.  Behind the scenes it was different.  I was always walking on eggshells, fearing that I would upset her. I always did. It was absolutely crazy. I have never had a friendship quite like this. I could do no right. It was creepy. I learned and felt her cold and unforgiving wrath: no one crosses dooce.

Oddly now and because she wrote about me, and because people still associate me with her,  I feel (and have been told) that I owe you an explanation. Do I? I am not sure. What I do know is that our relationship was prominent in a public forum, so maybe the public is where it needs to be worked out. Thoughts?

Of course my foray into blogging and dooce’s super world was strange. And by strange I mean exhilarating, fun, weird, and horrible. And yes, I liken this particular friendship to a low-rent form of Oprah talking publicly about her friend, Gayle. However, there is one big difference. When Oprah and Gayle fight, they seem to work it out. In contrast, Dooce and I had a falling out. The end. Then I took my blog down, and you never heard form me again.  Here is what I got out of it. A former neighbor of both mine and Heather’s told me this:

“Beth, Heather is telling everyone you up and moved to Park City because of her.”

First, I have no idea if his gossip was true, but it makes a great story, doesn’t it? Second, what the what? We were building a house for two years before I took my blog down. Ah, but third, the actual truth is not dramatic. And we mommy bloggers love the drama, don’t we? It is more compelling for people to hear that I ran and hid from dooce than my actual realty:  I moved and was sad because I had a late miscarriage. I chose to get myself healthy and took my blog down to focus on my dudes and to cope with my sorrow. Well, I would have been smart if I did run and hide, but that just isn’t true.

Likewise, after I moved,  I assume you never heard Heather talk about her BFF friend, Beth again.  But because she talked about me publicly before I took my blog down, and because people keep asking (publicly and privately), I keep feeling (like my blogger friend suggested) that I owe you something.

So I ask you,

“Why do I feel this way? Why do I feel an obligation to you?”

[insert soothing, gentle and peaceful chorus here] MY ANSWER: At this point I believe history has adjusted reality. I do not think any of this really matters, does it? In some ways it really doesn’t.

Then again…Wait. It kind of does. I, not, you, have suffered the extreme dark-side of Heather’s anger. As a result of falling on the wrong side of dooce, I have been shunned, ostracized, lost opportunities, called an embarrassment, someone who invaded her life, a kiss-ass trying to earn favor with dooce, blah, blah, blah. For instance, I love how common friends say that she and I are only friends because of blogging, omitted the long history Heather and I share. I am continually contacted regarding her. Recently I was told where she lives and asked if I could go and take pictures of her trash can. Another friend emailed me to lecture me on her divorce.  As far as I know, she refuses to make amends with anyone she gets angry at. In contrast and from my own experience, when you make amends, you have to look at yourself. I like to tell myself that she cannot look at herself because it would be too much. If she did make amends with all the bridges she burns, she may collapse, or better, may actually heal, forgive and realize that we can share the world together, that we are all cool, troubled and of value.  I have no idea, but perhaps thats the zone she thinks she needs to exist in for her success. It does make me sad. I really liked her way back when. I am a good and loyal friend. I was a good and loyal friend to her. It is too bad that stupid neighbors and stupid internet people perverted our relationship. It sucks that so many folks tried to use me to get close to her. It totally is lame that she can trust me for the person I am. Why can she write so openly and not give the rest of us the same platform? I never quite got it. I did not like she constantly telling me that she was convinced that I thought she was the bane of my existence. Sorry for using the word, “retarded,” here, but that is just retarded (very foolish or stupid). Really.

Moving forward, taking deep breaths, and oh thank God — I am glad I am here where I am now. I am grateful for what I have learned. I forgive myself for not getting it.Who did? Blogging was new. I never anticipated I would be walking in those particular shoes.I only wish I wasn’t such a pussy. I am learning to be better about standing up for myself instead of letting myself get caught up in the crazy.

Now I live in Park City. When we moved here I did not know a soul. It was terrifying and exciting. I did not have to talk about my blog so I didn’t.  Consequently, no one I see has any idea that I blogged or that I knew Dooce. People here care about skiing, raising an Olympian, money, age prevention and exercise. And if they do know who Dooce is, they do not know she was ever my friend. Here, I am known as Kyle and Eli’s mom, Dave’s wife. We are known as the family who built the green house next to Rob’s. We are the family that took our kids to Hippie Pre-School, and the crazy family who travels the world. These days the fact that Kyle nearly died and was bitten by a copperhead snake is what people in our offline world want to talk about.  Of course, it has been nice.

Here it is. If you want to read my stuff, I would love to have you. I am inconsistent. I no longer know dooce. I am certain she no longer wants to know me. Yes, we still have several close friends in common. And yes, I think it is bizarre. I would think by now that we could move past this. I have. I sent her a letter when Kyle was sick. I have sent good wishes her way. Namaste even to her. Seriously, I can’t give this situation any more power (if that makes sense).  And because I am an eternal optimist, I hope everything will once again be right in this world (yes, including a peaceful resolution with Heather). That being said and because I am getting way too old to believe in happy endings, know that I am not holding my breath.

 

PS I may keep rewriting this post until the end of time. I am ok with that. That was one crazy ass time of life!

 

[to be continued]

part 1: blogher 2006

part 2: 5 year run down

Part 4: the summary

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Stevens-Johnson Syndrome: Beginning to Process

(and there is a long way to go)

I have so much to say and I want to say it. There is just not enough information about this terrible disease. I need to share our story.

Indulgent is what I feel. My Brandi Carlisle Pandora Station is on. The song, “You belong to me,” plays in the background. I hear the words:

Oh I’ll be so alone without you
Maybe you’ll be lonesome too

Fly the ocean
In a silver plane
See the jungle
When it’s wet with rain
Just remember till
You’re home again
You belong to me.

Years ago my friend Katie died way to young of Leukemia. She was much younger than me. I often visited her in the hospital and became close to her and her family. When Kyle was in the hospital I felt Katie everywhere, especially in the hospital playroom. Right now I am in the middle of responding to an email from Katie’s mom.

As I try to respond, my throat tightens and tears fill my eyes. I feel indulgent and self-consumed as the sweet, sappy music plays. I feel weepy and breathless as my fingers click away.

I have to stop and write before this moment leaves.

. . . It was one of the many long hospital days. Gratefully, as they often did, one Kyle’s very best friends and his mother,  came to spend time with us. His best friend was still recovering from a brain injury. Kyle’s friend empathetically had this uncanny ability to comfort Kyle in ways I simply could not. My mom was at the hospital that day and we all made our way to the hospital playroom. Kyle was walking with his mobile IV station, tubes and IVs attached. As I talked to my friend, Kyle and his friend built model airplanes. As we sat, I looked around at all the sick children, some dying and some about to go home. I was completely deer-in-headlights overwhelmed. I watched Kyle and his friend, Kyle’s face so swollen from steroids, wearing a tan baseball cap. Somehow when he wore this one tan baseball cap, given to him by another friend, Kyle’s face seemed to look even more swollen, his lips more bloody and sore, his eyes more profoundly injured. He looked to me like a Cancer patient. My thoughts went right to Katie and coincidentally so did my mom’s. I remember the many times visiting Katie when she came to Minnesota for Cancer Treatment, her face swollen from steroids, her sweet and hopeful enthusiasm. I told my friend about Katie and that she had died of cancer. I choked up and forced my feelings down. I was completely caught off guard with emotion. Maybe it was because my heart was wide open. Maybe it was because there really is something beyond this life. I am not sure. What I do know is what I felt next was a gift. I felt Katie, as if she were alive and sitting right next to me, hanging out and helping me let my guard down, something that has not been easy to do.

And then today, I felt Katie as I wrote her mom. Sweet Katie is one of the many unexpected gifts in this whole crazy mess. Each and every time I have thought about her since Kyle became ill, I am completely overcome. I don’t think anyone has any idea until now that this happens. Somehow Katie has been one of the only things that can propel me passed my stoic and frightened exterior. My heart opens wide and somehow I am able to allow those raw feelings and memories of me helplessly watching Kyle suffer surface.

For months I have been scared, confused and completely out of my depth. The indicator of how serious this has all been is that I am holding my usually unguarded feelings tight and close.

Today, and thanks for me finally taking the time to respond to my email, my heart is open once again. For how long, I do not know. I will take the moment and let myself remember. And now with some distance I am beginning to look back and see how absolutely horrifying this experience was. The moments are opening up and revealing themselves to me and I am grateful. These moments have patiently waited to show themselves and I am sure they will continue to do so.

In the safety and silence of my home, I can now see Kyle attached to his mobile IV standing in the hospital hallway, wearing sunglasses and screaming, I mean screaming at the top of his lungs,

“MOM, MOM, MOM, IT HURTS SO MUCH,” followed by, “MOM YOU ARE WALKING TOO SLOW,” immediately followed by a, “I CANNOT BREATHE! MOM, DO YOU HEAR ME? I CANNOT BREATHE! MOM!”

In a state of shock I stood there, in a random hospital hallway, burned out, watching my boy, helpless, his face, his eyes, falling off from the inside, feeding tube inserted down his nose, IV attached in his arm and irritating the hell out of him. And then the gentle Med Tech touching Kyle’s arm, softly pleading,

“Kyle, Kyle you need to be quiet.” With Kyle responding even louder than before, “I CAN’T! I CAN’T! I DO NOT UNDERSTAND! HELP! HELP! HELP! HELP! MOMMMMMMM, HELP ME!”
She gently continued, “Kyle, you have to. You are scaring the other patients.”

We made our way across the floor to the hospital patio. Kyle screamed, spit and continued to flip out. We grabbed a box of Kleenex from the Coffee Cart Lady. Thank goodness for those boxes of Kleenexes. They were everywhere. He tried spitting on the floor. He spit outside. He did not stop spitting. He was mad and he spit. The blood and tissue he spit were so gross. They looked akin to Zombie-Flesh. At that moment I could not see how absolutely bad it was. I could not anticipate the months he would suffer; the months he would continue to lose massive amounts off skin tissue. I could not. What I could see. What I could see in that moment was that Kyle was out of his room. It had been almost two weeks since he had been out of his room. That walk, as brief and crazy as it was, was the first time Kyle had moved, had left his bed, the complete darkness and silence of his room.

And in that moment, that is what I could see.