Please Fix Me

Originally posted on July 7, 2006 at 9:57 PM.

Me and my boys Hawaii 2007

Wednesday, July 5, 2006, there we were. It was beautiful, sunny and warm.

Dave took the day off and we were driving East on I-80. I turned on our CD player and instead of listening to Kyle’s Magic Treehouse CD, I randomly switched to something else. Immediately I recognized that it was one of the CDs that has been in the car for at least six months. You see, between NPR and children’s CD books, it is hard to fit in the occasional Mommy-Mixed-CD. And out of the speakers I heard Coldplay’s Chris Martin sing,

“When you try your best but you don’t succeed
When you get what you want but not what you need
When you feel so tired but you can’t sleep
Stuck in reverse

And the tears come streaming down your face
When you lose something you can’t replace
When you love someone but it goes to waste
could it be worse?”

I could not stop them. Through heaving sobs, I shook my fist in the air and yelled,

Damn You, Chris Martin! Damn you Coldplay!

Just the night before, I mean, just hours before, Dave and I were talking about how much we enjoy sex when I am pregnant. Dave joked about how much better the love-making would be as my belly grew. We felt close and I was finally letting myself be excited about this little baby. As Dave touched the tiny beginnings of my pregnant belly, we decided that we were probably having a boy . . .

I sat in the passenger seat choking. I could not breathe. Snot covered my face.

“Lights will guide you home
and ignite your bones
And I will try to fix you.”

I thought my head was going to explode. For the past two days I have remained the strong mother and stoic MidWesterner that I am supposed to be.  Then the blindside:  a silly, love song’s profound words completely knock me off center.

Right now it is happening now. I am sniffing away the wet, tear drips that cover my face. I know I cannot hide anymore. (I have been hiding since Wednesday.)

Zeke's Pink Gerber Daisy, Sugarhouse, Utah, July, 2006
Zeke’s Pink Gerber Daisy, Sugarhouse, Utah, July, 2006

Another blindside happened earlier.  I saw something sitting on our back doorstep. It was a bouquet of flowers.  My friend left them after she received Dave’s phone message. She knew that I could not speak, so she left the flowers in a safe place for me to find. When I found them, my tears found me. I needed those flowers. And I needed (still need) the phone calls. I needed the chocolate wheat-free, dairy-free cookies. I needed the tea. I needed those beautiful pink nutmeg-smelling irises. I needed the gentle phone call warning me that they were coming and that I didn’t have to come to the door if I didn’t want to. I needed the card hidden in our secret mailbox. I needed my sister’s email and my other sisters’ caring words. I needed little Zeke’s pink Gerber Daisy. I needed the hugs. I needed my friend Marianne, who was visiting from Minneapolis to grab me and say,

“I know you can’t talk right now, but Beth, I love you.”

I needed my kind doctor to choke up and lower his head as he, Dave, and I viewed my ultrasound. I needed Dave to quietly hold my hand. I am sure I will continue to need while I struggle through this. But honestly, I don’t know how to say,

“I need you.” I usually don’t need.

I was about to take Marianne and her two beautiful children, Makeda and Dima to the airport as I stood at the back of our car fighting with her double stroller. In a flash, all the angry pain I was holding in came crashing out. And then I really began to fight with that stupid, gigantic, awkward, idiotic, four-wheeled, piece of shit (a child’s stroller).

Marianne physically grabbed a hold of me, encouraged me to stop long enough so she could say,

“Beth, I am here to help. I know you want to do it all by yourself, but you can’t. I understand. I do the same thing.”

I needed to hear that. I needed her to stop me.

Easy E, The Gateway, Salt Lake City, Utah, July 2006
Easy E, The Gateway, Salt Lake City, Utah, July 2006

I know you know where this is going. I have to say it anyway. See, Wednesday I was headed for my ultrasound. Before leaving for my appointment, all the calm I had felt this past month was washed away when Eli completely freaked out while I attempted to get him into his car seat.


“What? You can’t be serious? Eli, those Popsicles are precisely measured by a machine. They are ALL the same size. Now stop it and get in the car!”

Of course I was nervous about being late. I needed to drop the boys off at the park first where My mom was waiting to watch them.

[crying] “Mom, I can’t buckle my seat belt.”

“Eli, just do it! Please. We are going to be late.”

Immediately I felt bad for yelling. I felt bad for letting my nerves take over.

“Eli, I am sorry. I love you.”

“Mommy, I love you too.”

I think Eli knew. I think he knew something was wrong.

Now at the appointment things seemed weird. Instead of waiting the usual forty-five minutes, my doctor was on time. He, not a nurse, whisked us back. I stepped away to empty my bladder, undressed from the waist down and hopped on the table. Quickly he inserted the ultra-sound device. It didn’t take seconds, or even a breath. Immediately I knew. So did my doctor. Desperately  he fiddled with the device trying to see if somehow he had done something wrong. He hadn’t. We both saw it: There was no baby, just an empty egg sac. In the last few days my body had absorbed the baby. Sick! And why the hell did I ever have to see an embryo and a heartbeat? Seriously, why?

Instantly I was positive and pragmatic. I sat up on the hospital bed and  assured both Dave and the doctor that everything would be ok. Then I reassured. My doctor lowered his head. I watched him intently.  He was so quiet and still. He was honoring our moment. He knew our journey well. He knew that this wasn’t just a miscarriage. He knew about our years of trying, years of doctors, treatments, x-rays, blood tests, I.U.I, laparoscopies, hysteroscopys, and huge disappointments. Then I stopped reassuring. I breathed in his wise silence.  Kindly, he raised his head and said.

Beth, if you don’t let yourself grieve, you will not heal.

Those simple words broke through and the tears began sneaking out. I tried to hold them back. I urgently tried to force them back in. I needed to be alone. I felt humiliated.

Dave and I spent the next few hours alone while my wonderful mom entertained my boys, Marianne, and her children.

“What will I tell people? Just yesterday I was telling people how safe I thought I was because I had made it to my twelfth week. I can’t . . .”

See, my body still thought there was a little baby growing inside. It did not want to let go either. And there I was dealing with my miscarriage at home.  I do not handle anesthesia very well so my doctor opted to give me pills to start the process. Though the embryo was gone, all of the tissue that supports the embryo’s growth remained. My body did not want to let go.

It was time. We put the kids to bed. Next we went over our back-up plan of what we should do in case there were complications and I needed to be rushed to the hospital. Then Dave helped me with the little pills. I had to insert six of them vaginally. It was supposed to happen fast. We started watching the movie, Must Love Dogs, because that was what was on. As the movie ended, I felt the cramping and we decided we would try to sleep.

As I lay there, I felt just like I did when I went into labor with Kyle. This time, instead of having a big belly, I was small and completely alone — no doctors, no nurses, no excited well-wishers, just stillness. In our dark room, I was tense. My fists were clenched and I felt the contractions. They hurt so much more than I had anticipated. They progressed, as any labor should. The process went on for hours. That is when I realized  there was a problem. Because I was so tense, nothing was happening. I knew that nothing was happening because I was not letting go. Dave was now sleeping. Alone, I talked myself through what needed to happen. I unclenched my hands. I let my body relax and finally let myself feel this sad, sad heartache. I said good-bye to this new little part of me, and then I lay there until I could not handle the pain any longer. I ran to the bathroom. As I sat on the toilet, I felt a huge gush of blood. I felt the passing of a large mass. Then I heard a loud thud as the mass dropped into the already very bloody toilet bowl. I  stood up and turned toward the toilet bowl. I saw enough without turning on the light. I knew if the room was any brighter that I would have to face my reality. I had faced enough. I repeated the process of running to the bathroom for hours until I could not bear the intense contractions any longer. Then I literally passed out.

Today at the doctor’s office I had another ultrasound. He wanted to make sure all pieces were gone, and they were. We talked about my options. We decided that I would continue seeing him and that I would also see a miscarriage specialist. We even made an appointment with the other specialist, who will be squeezing me into his schedule. I was actually feeling hopeful. And then Dave and I went to dinner. As I watched the parents with their babies and thought about what I lost, I realized that this is just not going to be that easy to get over. I am still barely letting myself touch the devastation. I mean, come on, I have not even been able to tell most of my friends and family about this. Dave and my mom have been speaking for me. And if you are finding out now, it is not a slight. I just don’t know how to say it in person. What do you say?

Kyle, Sugarhouse, Utah, July, 2006
Kyle, Sugarhouse, Utah, July, 2006

I feel  all of it. I like shit.I feel lucky and grateful. I feel blessed to be alive. I am also devastated.I know many women cannot have children of their own. I am very aware that I have two beautiful boys.  I am grateful for friends, friends who keep calling me, even when I cannot talk. I am grateful because as alone as I feel, I know I am not. I am grateful for those who have approached me even when I am not approachable. While simultaneously being filled with love, it also sucks. When people actually reach me with their kind words, I am reminded of what I have lost. When I actually feel their love, I cannot escape the pain. And right now, the pain is almost too much.

I want to run away, but really, where would I go?

The boys, Sugarhouse, Utah, July, 2006
The boys, Sugarhouse, Utah, July, 2006
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.


What do you do with those Shitty things people say to you?

Red & Green Morphsuit Dudes


And with a roll of Duct Tape covering my mouth and tying my hands together, I ride the PMS wave. Once my hormones are back to normal, Dave cuts me lose and I breathe for another 28 days. Oh man, I can only imagine what Perimenopause is going to do to hormone-driven lack-of-verbal control.

Even when my hormones are perfectly balanced, I promise I will somehow offend you. I am just that skilled.  I will most often offend you when I am working extra hard not to offend you. When I try to FIX and MAKE things better,  you will see me as judgmental and I will believe that I am looking out for your best interest.  When you do not approve of my actions, you will let me know with an email, an unfriend, a phone call, a text, a Tweet, words to another friend, a glare, a silent treatment and if I am lucky you will say something like, “Dude, I love you, but you are really bugging me. Stop it!” I like it when you are direct and willing to work it through. My heart never intends to hurt you.

There are  many  many reasons and explanations, people say stupid and mean stuff. That is just how it goes. Really, this post is exactly what I said in my title, “What do you do with the SHITY things people say to you?”

What would you do if you were in my shoes? Here is the shittiest one that completely changed my world. I was a very young girl about eight years old (give or take a year).  I was sitting in our family room/office  while my mom was on the phone with my dad.   They were divorced and he did not know I was on the line listening. To this day, I believe the words I my dad said about me are what has made me stumble and feel completely “less than.”  His most well-intended words broke my heart and in one short sentence I knew he did not want me.  My mom was re-married and I believe my step father was interested in adopting me and my three siblings. I short-circuited and froze as I heard my dad say, “You can have Beth, but I won’t let you have the other three.”   I kept going over it in my mind and then thinking about how I could convince him that he really did want me. (I was so scrappy), “Did he really just say that?”  For a very long time I tried to salesman my way back int his life. “I am sure if I do [fill in the blank], he will want me.”

In one sentence, I went from knowing I had a place on this Earth to feeling like I did not deserve a space on this planet.  I have spent years and years trying to convince myself that I am just as worthy to be here as everyone else.   Those shitty words have formed this giant, you-are-worthless mountain and because of those words I have spent way too much time trying to make it all better. Somewhere I convinced myself if I could  fix and believe in everyone and everything else, maybe that big giant you-do-not-belong hole could be filled. Unfortunately life is not clean. As I have tried to fix the damage caused by the shittiest thing ever said about me, I have managed to pass the hurt along and consequently say and or write really crappy  things about others.   Thank God for  long internet breaks and Thank God for husbands. Thank God for little boys who love their mom.  Thank God for sons who say, “Mom, I think you need a hug.”  Thank goodness for friends who have loved you since you were five years old and who love you even though you say stupid stuff sometimes.  Thank goodness for friends who are human and say stupid stuff too. Thank God for scary scary diseases that wake you up and thank God for healing.  Thank God for perspective and thank goodness for the ability to let go. What to do with the shitty words, well, I say, “Don’t let them bring you down. Breathe and move forward. You never know where that person was when they said them.” Ok, I say all these Zen things until someone says something shitty to or about your children. Then,  I say, “ALL BETS ARE OFF!”

A Picture of My Parents

I think this is at my Christening

Last week Dave and I dropped the boys off at my mom’s and while there she showed me a bunch of old pictures. They were tiny tiny copies of the originals. I quickly pulled out my cellphone and snapped a few copies of my own.

Here she is with me dad and a priest. She is beautiful. I do not know my dad. His name is Will.

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  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

Tagged :

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,


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.