I have Banned Myself from Mom Blogs

I used to write for a couple Mom Blogs before we lost Samantha. 

After we lost Samantha and after I missed a couple blog posting dates, I explained to my favorite editor that I could no longer write for Mommy Blogs. 

“I don’t have anything to contribute,” I said, “no one wants to come to a Mommy blog for support and read how worse it could be.” 

“Well maybe they SHOULD read it,” my always-optimistic editor said. 

“I don’t want to subject a new mom to our experience unnecessarily, I don’t want to scare her.” 

And so my lovely editor let me go and I thanked her.

Because it IS scary. Our story is frightening. And the last thing a new mom needs to hear is, “well it could be worse….and let me tell you how bad it could be.  

In the realm of what is helpful to hear and what is not, our story hits the top ten unhelpful. 

This week was hard, unexpectedly hard. I gear myself up for the biggies; Samantha’s birthday, Christmas, Jack’s birthday, even Halloween. 

I forgot one……Back to School……

Back to School, you relentless un-holiday, you poster of cute first and second graders in their back-to-school outfits. 

Crap. 

What comes along with Back to School is Back to School stories around work. People are late because it’s back to school. Kiddos are meeting teachers, new classes, new friends, LOTS of anxiety and stories around a usually business centered office. 

I listened a lot and I turned my ipod on a lot. 

Here is what bereaved parents go through……

We LOVE your kids. We love you. And we want to hear stories about your kids.  But we cannot listen without comparing, without feeling a tad jealous, grieving and without secretly wishing that this conversation be over.

But we can’t. This week we live in a Back to School World and it was all back to School. 

At one point a co-worker said, “I’m sorry, this is hard isn’t it?” 

And I could have put her in my back pocket and carried her around  for recognizing how hard it was to hear about back-to-school drop off that morning. 

So I put on my Big Girl Panties and wrangled through the rest of the week. 

Until I made a HUGE mistake. 

Although I no longer write for Mommy Blogs, I still subscribe to them. On Friday, I found myself opening a blog called “Motherhood, The Big Fat F*ck You.” 

And I read it….I don’t always have the best judgement. 

And I got mad….as I knew I would reading a post called Motherhood, The Big Fat F*ck You. It wasn’t as bad as it sounds. It was about feeling unappreciated as a mom and stressed out about Back to School. 

And I wondered, How do stressed out parents of children, who need to vent and Bereaved Parents, who wish nothing more than to be totally, completely stressed out about their kiddos……How do they get along?

My genius answer? 

I have no clue. 

Perhaps it is a sense of perspective….perhaps from both sides. A couple months ago, a new mom cried at lunch because her baby had been sick; she was sleep deprived and  absolutely spent. 

We met later while picking through Jelly Bellys in the break room. “I’m sorry this has been hard.” I said. 

And she started to cry. “I am such an asshole,” she said. “This will pass, it’s nothing like what you have been through and I feel like such an asshole.” 

I gave her a hug, told her she was not an asshole (my goal is really NOT to make people feel like a-holes) and we picked  out the green apple Jelly Belly’s together. 

But that moment for both of us, that moment of recognition, was so very important. 

I’m not sure how it works. I know my friends….my Moms and not Moms who have stuck by me through this crazy grievous process, who have asked the hard questions and stuck around for the hard answers….are worth their weight in gold. 

And Mommy Blogs? I am banned from Mommy Blogs, perhaps for every one’s best interest. 

And I think that might be okay. 

Bye Bye to the Month of July

Adios July…..

Hasta la Vista!

Au Revoir!

Tschuss!

Sayonara!  

July is my emotionally schizophrenic month. Somehow the emotional landmarks of my life all seem to deposit themselves in July. All I can do is hold on, navigate through the bad and absorb the good…absorb it like Vicks Vapor Rub 

Here is my July calendar: 

July 1: We gave birth to, and lost Jack
July 18th: Samantha’s birthday
July 20th-22nd: The Courage Classic
July 25th: The day we lost Samantha

I also have two Non-Profit Conferences in July on the East Coast….just to make things a little fun. 

And it’s hard to separate the good from the bad. The money we have raised from the Courage Classic is amazing. But it has been born from the fact that Samantha had a terminal disease. 

And so we hold on and ride the July ride…..

On July 16th, I started crying to a song called Florida, Georgia Line, otherwise known as Cruise. Here are some of the lyrics: 

“She was sippin’ on a Southern and singin’ Marshall Tucker
We were falling in love in the sweet heart of summer
She hopped right up into the cab of my truck and said,
Fire it up, let’s go get this thing stuck.” 

WHAT is emotional about those lyrics???!!!!

Nothing. But it brought me to tears, blinding tears on the way to work. The lyrics aren’t even GOOD! 

This is emotional roulette we play in July. 

And in between honoring my babies;  friends and family donate, come up to Copper, ride 156 miles in the Colorado Rockies and raise $82,000 in the memory of Samantha. 

$82,000 so far!!!!

MMMYYYYY Goodness!!!! More tears. 

Here I am on the ride


It is a three day tribute to Love. Love for my daughter, support and love for our family…as my dad says in the middle of July, “Thank God for the Courage Classic!” 

Indeed. 

Here is a video….little preview of the amazing weekend we had: 
https://www.facebook.com/video/video.php?v=10201195395600090

I cannot thank our supporters, riders, donors enough. You keep my heart beating in July. 

tum-tum, tum-tum, tum-tum…..hear that? That’s my heart, beating in July.

As July ended, I found myself in DC at a conference. The opening speaker is one of my favorite authors, Cheryl Strayed who wrote Wild. 

Wild is about her path, hiking on the Pacific Coast Trail after her mother died. It is her journey through Grief. Oprah picked it up and started her book club again, starting with Wild.

Here we are bonding- I told her briefly of our story and how her journey spoke to me. 



She signed my book (that I already had but bought another one so she could sign it)….

To Heather

May you always find beauty on the wild journey

………..This is what I know about this month, I know without a drop of doubt. 

July is beautiful. July made me a Mother. July brings my friends and family together in a beautiful celebration. 

July is Wild. 

Life is Wild. 

The best we can do is hold on, enjoy the ride, grasp the ones we love…..tight…..and not let go until it’s kind of uncomfortable and you are wondering who is going to let go first…..and cry to random country western songs. 

July, I kind of miss you….kind of. 

Happy Birthday Sweet Jack

Today our first born, Jack Jorgenson Schichtel would have been eight. 

Eight! 

Crazy. 

But today is not my hardest day.

Yesterday was my hardest day. It was yesterday, eight years ago that we learned our baby, that we came into the hospital to give birth to, had no heartbeat but still somehow needed to get out of my belly. 

Yesterday, eight years ago, was quite awful.

But yesterday…yesterday…..Hubby and I got up at 4:45 in the morning and packed up our bikes to ride Idaho Springs to Arapaho Basin. At 5:30 we were in the truck, bikes in the back and coffee cups in hand. As we watched the sun rise, I patted his leg. 

“Eight years ago today really sucked,” I said. 

“Yeah,” he said. “No matter how hard today is. It will never be as hard as that day.” 

Nope, I thought, It never will. I could climb Loveland Pass 1,000 times.

But I felt so grateful, that in some crazy way, we were riding out our grief together. 

So we rode. And every once in a while I would think “Wow, at this point, eight years ago, we knew Jack had died.” or “Wow, eight years ago, I was checked into the hospital.” 

But most times I thought “Wow, today this bike group is kicking my butt.”  

Or “Wow, Loveland Pass at this point of view looks really high.” 

Or, “My thighs really stinkin’ hurt.” 

Because I’ve I said before, thighs yell louder than grief when they are really, really angry.

And so we rode, Hubs and I, up to Loveland Pass: 


Today, we woke up and kissed each other. 

“Happy Jack’s Birthday.” 

Tonight we celebrated….






I have a ring that is a frog (Jack’s animal) he came along with us and enjoyed some creme’ brulee. 



And we talked about little signs that our kiddos are still around….two doves in the garden, a callous on my hand that looks like a heart, a crazy fledgling robin that won’t leave our yard……I KNOW, I’m a freak…but this is what I need to hear the night of Jack’s eighth birthday.

Grief is hard. Sometimes you need to climb a mountain and eat some creme’ brulee with a frog. 

The best part is to celebrate in some crazy way, with Hubs. For that, I am forever grateful. 

Happy Birthday Dear Boy. 

My new hat

A couple weeks ago I found myself at the United Mitochondrial Conference. 
It just so happened to be in Newport Beach, CA so I thought I needed a little beach time. 

Kinda….
I had reservations about attending this conference.
I would learn about new discoveries in Mito research for why?
I would sit in sessions about children with mito issues for what?
I did not need to be in this world as a parent and if I couldn’t be there as a parent, I didn’t know how I could be there.  
But, alas some of my favorite people where going. I hate to miss anything, ever. And I really felt the need to figure out who I was in this Mitochondrial World. 
And so…..to California. 
Our MFM president, Maria was brave enough to share a room with me. On the way to our room, we passed through the exhibition hall. I viewed testing companies, supplements, hospitals, everything I didn’t need and ironically, missed so much. 
And so I cried in the exhibition hall.  
And Maria hugged me. 
She’s a good roommate. 
And so the weekend progressed, with sessions, with acronyms I didn’t understand and genome sequencing….yeah….try me with genome sequencing.

Here is the Mayo Clinic, collecting blood for the Mito Biobank….for that genome sequencing 
 This is Elvis (seriously) who took my blood for the mayo clinic



And something amazing happened that weekend…..
I found my new hat (no, not Elvis’ hat, although I was tempted).  

It is not a hat of a mito parent, it is not a hat of a bereaved parent, nor a hat of an advocate….it’s a combination of it all…..a fedora-sombrero-beret with a touch of cowboy. 
What I found is that what we are doing makes a difference. 
I noticed this when I ran into the founder and CEO of Oroboros Instruments, Erich Gnaiger. He was wearing the Oroboros logo on a t-shirt.

 
*This is the Dragon logo. Dr. Erich Gnaiger is on the left. 


“hey!” I said, after some wine. “We bought your machine!”  
“Ja?”  he said because he is Austrian….and so I, of course answered him in my not so fluent German.
“Naturlich!” (I know, you’re impressed, aren’t you?)
Anyway, to make a long story shorter, he knew who we were. He knew about our Dr., Dr. VanHove….who had gone to Austria and trained with Dr. Erich Gnaiger and our fabulous machine, named Sam.
As the conference went on, word spread about the work we had done and the money we had raised for our Mito cause. I spoke extensively with Johnston Grier, who is putting the database for Mitochondrial Research (NAMDC) together…yeah, our donations are sponsoring Children’s Colorado participation.
I went from crying because I didn’t know where I fit to crying because we fit in so many places.
Friday night, I sat with our Mito families over the fire pit. We talked about losing our children, the fear of losing our children, and the absolute magic of our children.
Me and the President

And I thought…..here we are….I represent what these families fear most and they represent what I miss most. And there were no sad faces, just an understanding of what we are all going through. So I took off my fedora-sombrero-beret with a touch of cowboy because I didn’t have to wear a hat, I could be me  in search of what is next.

When we left, founder and CEO of Oroboros Instruments, Dr. Erich Gnaiger gave me a kiss on both cheeks….yeah, because we bonded…because he’s Austrian and they kiss on both cheeks and because I can speak in my broken German. 

Naturlich! 

And I left feeling full….still unsure of my role on this path but knowing that this path is good, important, worthy and hatless. 

Words Better than Mine

54 year old Joel Westbrook lives with adult onset Mitochondrial Disease. I am grateful for his words and his willingness to be a Lodgepole Pine.

Here is Joel’s post from our MFM site.

Thank you Joel.

We have had the privilege of visiting Yellow Stone National Park twice. We went once in 1986 and once in 1990. The great geysers, wildlife, and incomparable panoramas amazed us. We saw the buffalo, deer, and got a close-up of a moose cow and her calf.  We took rolls of film and kept even more memories. The moose shot was likely a foolish one, we passed them while driving down a park road, and I stopped and got out as she stood on the road behind us, the calf off the edge in the woods that lined both sides.
Our travels to Yellowstone are not the only wondrous visits we have been able to enjoy. There could be very deep debates of what is the “best” place in America, (over the earth?). Even the geysers are not unique to that area of rugged beauty. Wolves, buffalo, birds and other scarce pieces of creation are seeing the park as a refuge from what might otherwise be extinction. It could be said that Yellowstone is one of the most diverse pieces of real estate we can so easily get to.
We saw the park twice, once before the fire, once after. Like most Americans, we sat by television news reports of the destruction. There were comments of how it might never recover. Supposed authorities cried this would be a tragedy from which there would never be full recovery.
Our second visit confirmed what some were very surprised to find. The burned areas had found new life. Small plants that had been shielded from the sun, now flourished. Diversity of life exploded after the fire. Even the animal life continued to go on and even multiply. The new life in the park would not have been except by the fire’s passage. We learned that the lodgepole pine tree cones don’t open except in forest fires.
There are things in life that do not come easy. Some great things only follow what others would define as hurtful. Expressions of love, depth of concern, level of compassion, and other big qualities of our humanity, are rarely seen or known by other means. People with Mito, Alzheimer’s, Multiple Sclerosis, and other silent thieves are the “Petri dish” of growth for those who must care for those who our society calls ill. These “ill” people (of which I count myself) are not the debris of life. These lives challenge our sense of normal, in love, in giving, in going beyond ourselves.
These lives are the foundries of greater being. Too many lives fill their length without doing anything memorable. Lives that breathed, ate, slept but never reached out beyond simple day-to-day that is called life (by some). It was my answer to such a call that led me to be a living liver donor. I saw a life that was nearing a sad end, potentially leaving a wife and three kids behind. The doctors were able to remove a part of my liver and completely replace the liver of a man I will call friend. I did not get paid for this (such is illegal), and it was not I who could gain that drove me. I gained being able to help. Now I am receiving from others having become one in the “Mito family”.
I believe in God. I know that when we have given to others, He knows and remembers. Maybe we should get T-shirts that say, “I am a lodgepole pine!” for the depth of challenges that care-givers experience.
—————————————————
More about Joel: 
“I am a 54 year old Son, Husband, Father, former cop/corrections officer, hiker, bicyclist, rock climber, preacher, teacher, and Mito patient of 5 1/2 years. Miriam and I live in Trinidad, Colorado, a small town that suits our living. I would like us to be closer to doctors, medical providers and support group, but for now we are comfortable in our community.
I was born to stoic Iowa farmers. Miriam had a dad that was a career Air Force officer, so she had many places to call home. We have three kids who are out on their own. The older daughter (32) is married (and divorced so has heart pain in addition to fibromyalgea), who does computer tech. Our son who in the middle (28) is teaching English in Korea for now. Our youngest, a daughter (24) is getting married this October, who is in social work (also fighting fibromyalgea).

I am putting some of my available energy into a “boys club” with some of the teens and pre-teens in our church. I like working with my hands on cars, electronics, and house repair.”

Pretty Sure it was Better than a Powder Day

I am a bit of an adrenaline junkie. 

Not super over the top but I tend to rush into things that make me feel good, make my heart beat fast, make me feel like I am alive. 

But the biggest rush I get? 

Raising money for our charity, Miracles for Mito. 

I KNOW……how super cheesy is that? 

Super, duper cheese with a side of cheddar. But I love it. I love it more than a crystal, clear, knee deep powder day….(for those non-skiers, this is a deep snow day. I wasn’t going to post that but if you  didn’t know ski jargon, that comment might seem odd….but I digress, as usual)

Nothing makes me feel more alive, nothing makes me feel like in this crazy world, with our craptastic circumstances, that some good can come from something. 

Last week, we had our Miles for Mito Run/Walk at my company. I am blessed to work at a great place with great people. 120 people came out to raise money for our non-profit. 

We ran, walked, raised money, ate ice cream and enjoyed a lovely spring day. 

At the start line: 


GO! 

This is for charity but we have quite a lot of competitors out there 🙂


Ice Cream Truck! Sweet Cow Ice Cream for all! 

Lovely Day


Samantha and Jacob’s favorite nurse came out to run…..and beat all the ladies! Thanks Whitney! 

This was the best…..at the end of the ride, four women showed up with horses to ride on the path. The kiddos loved the horses and went over to give them a pat. Next thing I know, these lovely women are taking our kiddos around on the horses! 

Now how cool is that? 

Later, people asked if I was happy with how much we raised, how many people turned out, etc. I was happy, I was very happy. But more than that, my heart was full. I felt surrounded by love and support and ate it up like Sweet Cow ice cream. 

It was better than a powder day. 

The Day After Mother’s Day

I waited a Day to post my thoughts on Mother’s Day.

A whole day.

Happy Mother’s Day.

I’ve been thinking about it since I woke up on Sunday morning, needing to make Mother’s Day muffins for brunch, realizing I had no butter, running to grocery store and watching the barrage of young men scour the Hallmark aisle for cards that had that special Mother’s Day meaning.

Well that’s not exactly true.

I have been haunted by the jewelry commercial that has the dad talking to the baby about how great a mom his wife is…..the mom hears the dad talking over the baby monitor and she walks in to be presented with a lovely Mother’s Day bauble…..

It haunts me…and I turn the channel when it comes on. 

And then I think…

Bitter?…..bitter party of one? We can seat you now.

I wasn’t going to post because I don’t want to be that bitter person. But then I had two thoughts: 

1.       This is my blog and my own outlet.

2.       AND, did you know that parents who have lost a child are 50% more likely to get cancer? I personally (truly) think it’s all that bottled angst. And trying to live in a world that just doesn’t know quite what to do with people who have lost a child. All that bottled hoo-ha turns into cellular nastiness. So I am releasing my angst now so I don’t get cancer.

There are three holidays I could really do without: Mother’s Day, Father’s Day and Valentine’s Day. How about, Hey You’re a Cool Person’ Day? 

OrWow, I Love Your Shoes Day?’ 

Or ‘Wine Day?Wine Day would be fun.

And this is not to discredit all the Mamas. I love the Mamas. I know many and I get a great joy out of being in their lives. I love their children and watching them grow. Perhaps that is why this post, and this day is so hard for me. Parenthood is such a great joy. I never want anyone to feel they have to taper their joy because of me.

But Mother’s Day for me is parental joy on crack. 

It oozes out of every media channel…..like syrup on my grief waffle.

Apparently, I have breakfast foods on the brain.

Sunday afternoon, Hubs pulled into the garage and announced “Mother’s Day is Oooovvveeerrr!” 

And he leaned over and kissed me. 

And then he took me on a grueling 50 mile bike ride; where I forgot about Mother’s Day because all I could think of was my angry thigh muscles.

Thigh muscles are not nearly as articulate as Grief. 

Grief is all… “I am sad because it’s Mother’s Day. But how long and how deeply am I sad? And how do I express myself in a productive manner?”

And to that I say….I don’t know but you are a pain in the hiney.

Because, really I don’t. Grief is a sneaky Bastard.

But Thighs…..Thighs on a 50 mile ride just say “THIGHS TIRED! NO PEDAL!”

And to that I say. “You have to pedal , otherwise we won’t get home.”

And then the thighs say “BIKE CRAP!”

And then I say, “Yes, I agree but you only have two more hills.” 

And then the thighs curse. 

They will get back at me. 

By August they will be bigger than a double-wide and eat small villages as a snack.

But they keep Grief at bay…..and that is okay.

Sipping a beer that evening, I thoughtwe really do have so much to be fortunate for. But somedays I don’t want to be fortunate, or gracious, or nice.

And then my thighs said, ANNNGGGGGRRRYYY TTHIIIIGGHHSSSS.

Someday’s the good cannot be forced.  The Grief and the Thighs just have to be felt. 

.3%

It has been a busy evening.

I have unfriended two people on Facebook.

TWO! I am out of control.

I have somehow managed to acquire 503 friends. People who put up with my silliness, my rantings, my crazy thoughts, liberal, non-profit antics and blog posts.

And I thank you for that. I know I am not perfect nor am I always right….as much as I would like to think I am.  

I did the math (even though I was an English major) and to unfriend 2 people out of 503 leaves me with an ‘unfriend’ average of .3%.

I’m okay with .3%. Think about it. If you had a gathering and only .3% of your invitees were inappropriate, you would think that was a successful gathering!

And I do find my .3% a success.

We have quite a lot to process in our world today. Which leads to a lot of opinions and a lot of voices. 

I do think just because we have a voice, a keyboard and opposing thumbs, we should not always use them. 

One of tonight’s unfriending compared abortion to Newtown….that we are so outraged about Newtown but still have legalized abortion.

I did not lose a child in Newtown.

But I have lost two children who were very wanted, anticipated and loved.

I have never had an abortion….thank goodness.

But I thought how dare this person? How dare this person take a political agenda based on a tragedy? I thought how I would feel as a Newtown parent to read this comparison.

And so I unfriended. And that was okay.

And I thought, maybe

Just maybe…

We should save political agendas based on tragedies to those and only those who have gone through that tragedy. In return, I will never give you advice on how to parent your teenager.

To mind our manners before we post something.

We never know the absolute, mind-shattering impact until we walk a mile or perhaps run a marathon, in someone else’s shoes.

.3%…..only .3% but they are so very noisy.

Whatcha gonna do?

It has been a whopper of a week. Boston has rocked our world, wondering if there is ever a safe place.

And our Senators have rejected further background checks for gun ownership.
I am not against people owning guns. But I do think if I need a credit check for a credit card, a background check for a job and a drivers license for Sudafed, I should need a back ground check for a gun.

Have you ever shot a gun?  My liberal toting tushie has and I must say, that gun holds a lot of power.

And Boston….who has shown us that you do not need a gun to cause unfathomable damage.

So complex. So much emotion.

Everyday I get up and I go to work.
But I love my job. And I love what I do on the side. I work with non-profits, I manage a non-profit and it is times like this that I am reminded of the importance of good.

Doing is good is good. It is good for society but almost selfishly, it reminds us that the bad will not over ride what the good is doing. It cannot, we are better than that.

Along that theme, here is our 2013 Courage Classic Video- reminding us of the good we can do:

https://www.youtube.com/watch?v=OcDo6NY8ros

So whatcha gonna do? To feed your soul? To remind yourself that so many of us want to do good. And to spread the good, the hope and the love. We are so much better than what makes the news.

Whatcha gonna do?

First Comes Love, Then comes marriage…..

Have you seen Facebook today? It is exploding with this flag:


This is the Human Rights Campaign’s push for marriage equality as the Supreme Court hears arguments today.
It really is pretty cool, history is currently being made, one way or another.
In the last year, I have developed my own opinion of love and marriage and what constitutes as a family.
I met my husband 11 years ago and fell in love- for many reasons….I liked his smile, he was funny, he talked about difficult topics, he loved me, he skied pretty darn well…. and I thought he would be a great father.
I was giddy on our wedding day. I was marrying the man I loved, we were stable, we were going to start a family, everything I had dreamed about was coming true.
And we got pregnant with Jack
And we lost Jack
And we had Samantha
And we lost Samantha
And you know what happened in the midst of all of our tragedy? I really met my husband and really got to know him.
And I really fell in love with my husband.
In the midst of planning for a family I wanted and dreamed of- I found my family.
It is a tiny family. It’s just Hubs and me and memories of our sweet babies. Do I miss what could have been?My dream of a bigger family?
Everyday.
Do I cherish the relationship I found?
Everyday
Divorce rate for couples who have lost a child is 90%.
That’s higher than my average test score.
And yet we stay together, not for the children, not for God, not for financial comfort, not because it’s the right thing to do.
We are married because at the end of the day, we want to come home to each other. Because for all of our faults (we are so not perfect), we have found a harmony and love that works for us.
And perhaps marriage can be that simple and that easy and that hard.
As my Dad says ‘God makes ’em and they find each other’
May we all find each other, no matter who we may be and how our lives unfold……I honestly find it a miracle Hubs and I are as content as we are, given everything we have gone through. We are not the traditional family but we are our family.
Our own, private, intimate loving family. We should all have a right to that.