Today you can find me in Manhattan 🙂
You can also find me at Hopeful Parents, encouraging you to vote earlier today. Hope you did and I hope it made you hopeful.
XO-
Me
Author: Hschichie
Hey! So here I am, bruised, battered, teary but smiling. Life has brought us a poop load of loss and this is how we get through it
50,000
Yesterday the Samsmom blog hit 50,000.
50,000 people in the last 3 three years have come to visit our blog. You have embraced our family, fell in love with Samantha, prayed with us when times were hard, mourned the loss of Lil’ Miss and now you continue with us on our eternal journey for healing.
Thank you.
In honor of 50,000, I give you our very first blog post. It’s an oldie, it’s been published a couple times, but I think it a goodie. You can find it here.
And to the next 50,000…thank you for being here with us.
XO-
Me
The journey of a thousand miles begins with one step. Lao Tzu
Today Miracles for Mito was accepted into the Colorado Non-profit Development Center.
We now have a 501c3 number.
We are now considered a non-profit.
We are now official.
I am the Director of a Non-profit!
Haha….look at me….Mrs. Director.
I sometimes think that we are not doing enough…that we are moving too slow. We need so much….a logo, a tagline, a brochure, a website, events……so much to do and not nearly enough time in the day.
But two months ago this little organization did not exist and now look! Honestly, this whole thing has fallen into our laps thanks to the wonderful people who surround us.
So I invite you to take the first step of 1,000 miles. Really….we’ll have some fun 🙂 Who knows where we will end up!
Whoa Girl
Caring for Samantha taught me many different things.
She taught me to look at the facts with a critical eye.
She taught me to ask questions and pay attention….and that no one sitting in the room is exempt from a question.
She taught me to focus and to check everything…..to be passionate and diligent about the work I did.
Because that work was about her.
Because it was indeed about arms and legs.
Being back in the business world, her teachings have paid off. I am focused, somewhat direct and I check everything.
Apparently I have become a little passionate about the work I do now….perhaps a little too passionate, perhaps a little overzealous.
I sat in a meeting today about a client I will have in January. Decisions were being made about the future of this client and I didn’t say a thing.
But I have to voice my opinion…decisions made here will affect me….
So I did…I spoke….. but the voice that came out wasn’t the business Heather of four years ago. It was Hospital Heather whose last meeting around a table involved four doctors, two specialists and the welfare of my child. Apparently this voice had been cooped up a little too long.
Whoa Girl….it is no longer about seizure control….it’s about marketing.
I was able to dial it back but I found myself searching for old Business Heather with perhaps a Hospital Heather flair. I can only wonder what my colleagues think…..
Wow….that Heather really, really cares about her clients!
Yeah, but maybe that second latte’ should be decaf.
3 Months
It’s October 25th. It’s been three months since Lil’ Miss left us.
Funny the things that hit you.
One month didn’t bother me…..two months didn’t bother me.
Three months is hard.
Maybe because life moves on at three months; it moves on with an unnatural normalcy. People go to work. People interact with each other. People live.
People live…..and Samantha has been gone for 90 days.
When we lost Jack, we were told we could try for a another baby after 90 days. I ticked off every single day until we reached 90. Every single day got a check mark…..
and the days crawled by. It seemed unfair how slow one day moved to another.
But now, since I don’t have to count down to something else, these 90 days have passed by so fast….how quickly life can move on.
The other day I found a poem I wrote a couple years ago; right around the time of Samantha’s diagnosis and the passing of hubby’s dad. I have been hesitant to post it because it’s a bit dark.
But what the heck, sometimes I can be a bit dark. It reminds me that I was grieving a long time ago…..
I howl at the lonely moon
Raw and unleashed, my cries pierce my fragile skin, pierce the bandage on my wounded heart. Hopeless, helpless, I am consumed.
I must be contained, silenced.
I swallow. Stuff myself into the tight, black, polished pump. I smooth my black dress and paint a smile on my white face.
I mist at the chorus of ‘I’m sorry’. I do not meet concerned eyes. I nod and drift through the crowd.
Tonight, alone, I will remove my black heels and unleash my sorrow.
Now I can only pick at the lilies.
Today I sat in a meeting. I was a bit down about our three month mark and I looked at all the other faces at the table.
How many of us hide something? Stuff our pain into our black heels? Pick at the lilies?
Sometimes…those days when I howl at that lonely moon….sometimes those days are good. In a world that is so very contained, she taught me that I am not.
Itsy Bitsy Teeny Baby Steps……
When Samantha died, we started a memorial fund.
And thanks to your generous contributions, we raised a significant amount of money.
And I thought…..what do we do with these generous contributions????
We could write a blanket check to Children’s….but we don’t know where it would go…
We could write a blanket check to the UMDF, for mitochondrial research but again….would anyone know who gave it? And why? Would anyone there care about our story with Samantha? Would anyone care about our story with Jack?
I needed more. You…..dear contributor…..deserve more.
So we have started a group for mitochondrial awareness in Colorado. I don’t ever want another family to ever feel as lost and hopeless as we did.
We have named our group Miracles for Mito. (Go and ‘like’ us on facebook!)
Today I met with the Colorado non-profit development center to establish ourselves as a legitimate non-profit with a real 501-c3 number.
We find out in the next two weeks if our application met the non-profit requirements and if we are accepted.
Keep your fingers crossed.
At times we are swimming upstream. At times the meaning behind what we are trying to accomplish seems insurmountable…..who knows what a mitochondrial disease is? Why should they know this? Why should it matter to them?
Every 30 minutes a child is born that will develop a mitochondrial disease before the age of ten….
That fact….if nothing else….should keep me in game. That fact and the fact that Lil’ Miss won’t let me stop taking these teeny, tiny, baby steps to make a difference…
….we just might make that difference.
Crossing fingers and toes….
PHHHHHFFFFFF
When Samantha first got sick I had to quit my job. I wandered around the house, yearning for a conference call, hoping for a meeting, a chance to don a business suit ….wondering who am I now????
Ironically, four years later, I still wonder the same thing.
The alarm went off at 6:30 this morning. I was on time, I was feeling good…feeling on schedule.
And then I attempted to get dressed.
The last time I worked a professional job was four years ago….after two pregnancies and maternity leave. I have now dug deep, deep into my closest to find hints of who that professional person used to be…..
Today I put on a pair of dress pants….not bad….
And then I tried to find a sweater. The first sweater didn’t fit right….it has never fit right…..I have no patience for things that do not fit right…..in the Goodwill bag. The second sweater had been dry cleaned five times and still has some sort of brown goo on the shoulder. The third had a hole right next my belly button.
3 sweaters, 3 additions to the Goodwill bag….one late me.
I finally got dressed and ran out of the house.
I returned once because I thought I left the coffee pot on.
I returned twice because I forgot our overdue library DVD’s.
Really late.
Really late and now being tailgated on the highway…..so tailgated I sped up to get into the other lane and out of said tailgaters way.
Pulled over by state patrol ……Mother f*&$#%!
Let go by state patrol due to my plea that I was only trying to get out the way….Thank you State Patrol Gods.
I pull into Starbucks to buy a Venti Latte’ to calm my nerves.
A Venti Latte’ to Calm My Nerves
Ironically, I sometimes miss the calm days at TCH……
I also now have a smart phone. It’s a Droid 2…..it sits next to my computer at work and every once in while talks to me if it gets bored……if it doesn’t feel like I’m paying enough attention it yells out….
DDDRRRROOOOIIIIIIDDDDD…..
My phone yells this in his computer Droid voice. I swear someday that phone is going to grow legs, crawl off the desk and take over the world. I won’t be able to stop him….
I’m frightened of my Smartphone.
I couldn’t figure out how to unlock Mr. Droid this morning. I had to call hubby.
Hubby laughed at my Droid fear and told me I could turn the voice off.
Yeah…right…..right after Mr. Droid grows those legs.
I’ve given Mr. Droid a name….Darryl….Darryl Droid. Now that doesn’t sound like a phone that wants world domination, does it?
I hope not…..when did the world get so complicated?
I miss tube feedings.
“Hope is the dream of a soul awake.”
The quote above is a French proverb…..isn’t it wonderful? To be awake…to have hope.
33 miners were rescued today from half a mile in the earth.
Half a mile is a long way…..a very, very long way.
Did you see them as they came up? They looked good; full of life, full of energy, full of hope. When the mine collapsed 70 days ago I thought how can a person live in those conditions for two months? Away from the light? In the middle of the earth?
Maybe because they knew the whole world was trying to save them, maybe because they had hope.
How very important is hope?
I went to a breakfast today for the Mental Health Center of Denver. My dad sits on the board as the treasurer and I was very proud to be there today. The MHCD believes that people can recover from mental illness given the right tools. They believe people with this illness can go on to live healthy, productive lives with healthy productive relationships.
Do you know what they do?
They give people hope.
They tell people they can recover.
Dad got up to the podium after breakfast as the treasurer and asked for donations. I cried through his whole speech……his speech was about giving to the gift of hope.
Even Dad got a little verklempt which made me cry even harder…..on the verge of ugly cry into my breakfast burrito…..I hid my head under a napkin.
Because like the miners, like the people who Dad represented today….I need hope.
I want hope.
Hope that life does go on.
Hope that I can see the light half a mile down.
Hope that I can believe in hope……
And I do……I have that hope for me (most of the time)
I have that hope for Hubby……
I have that hope for us….
What makes me sad is that I wanted that hope for Samantha…..I clung to that hope for her…..like a crazy spider monkey on the vine, I clung to that…..it’s hard to know what hope to cling to now.
Because now she is the soul, she is the dream, she is the light half mile down in the darkness…a tiny beacon for what we can do, what we should do, if we only embrace the hope.
My hope is that I will embrace the hope.
What I had to say isn’t as important
I had my blog post all figured out tonight.
Yesterday Caroline looked at her daddy right before our dinner prayer and said, “please ask God how Samantha is doing.” I asked her how she thought Sam was doing. Her answer – “oh, she is great, she is dancing and singing in heaven.” Max looked over and with a firm voice added “Samantha is talking now.” He can say her name perfectly now, I miss the way he used to say Antha.
It was an unexpected conversation, but not uncommon. She is never far from their thoughts, or mine.
I am glad the little bird came to the wedding, she must have arrived after taking a break from all the dancing.
Well, no matter what is going on in my life, this is far more important and far more touching, and far more wonderful and far more magical.
Thank you my very intelligent, my very thoughtful, small friends……
Love, love, love
Hubby and I went to a wedding today….it is October 10, 2010 and the wedding was at 10:00….10, 10, 10 at 10.
At ten this morning it was a little chilly, especially on the top of Flagstaff mountain in Boulder; but it was fabulous and the love in the air was palpable.
We pulled into the parking lot and was greeted by 5 year Izzy who jumped into my arms. She looked right at me…..Where is Samantha? She asked.
The way she asked it wasn’t where is Samantha today but where is she….if she’s not here with us, where could she be? She looked directly into my eyes. Izzy wanted answers.
“Oh Sweetie,” I said, “she’s in heaven, she’s up in the sky but she comes around. Maybe today we’ll find her in the clouds or in a bird or a flower.”
“I’ll look for her,” she said and then jumped out of my arms, content with my answer.
As we walked down to the amphitheater, I looked for a bird but the skies were empty.
The service was wonderful….simple, loving. Seneca and Greg got married a little older and you can feel how very happy to have found the other. They are giddy, looking at each like precious treasures they had the amazing fortune to stumble upon.
I adore weddings. I love that Hubby and I hold hands, squeeze each others fingers and remember to fall in love again.
During the ceremony, I found my little bird. Actually I heard her before I saw her…..her sweet little tweet through the trees. She finally flew down to a lower branch to watch the ceremony with us. I thanked her for coming.
It was the only bird I saw that day……maybe because I was looking for her.
At a tasty brunch afterwards, I had Izzy and her sister Nora on my lap. Nora went through the homemade cloth napkins the bride gave as wedding presents.
“This one is for you,” she said holding a blue flowered napkin. She then assigned Hubby a blue one with small polka dots.
“This is Samantha’s,” she said holding up a yellow flowered pattern. “And this is for your little boy.” She handed me a napkin with big blue polka dots. Our little family captured in homemade napkins by a seven year old…..I may never use those napkins. I would be too afraid to spoil them with a spot of grease or tomato sauce.
I love that to these girls, our kids are not gone…..just because we can’t see them, doesn’t mean they aren’t around.
These these little people ask openly about what’s going on. They celebrate where she could be…..I’m trying to take lessons in 5-year old thought.
It was an enchanting day.
AND it finally, finally rained and felt like a cool October morning. My change has come.
I would wish my friends the best of luck in their new marriage but they really don’t need it. The way they look at each other….they are solid……solid as the earth.
And a little bird blessed their wedding.
Welcome to Samsmom. I'm Heather and this is my journey as we navigate love, loss, rare disease, hope and resilency. Our family carries a POLG-1 genetic mutation that took my two children, Jack and Samantha and most recently, my brother Ryan. It's not an easy place to be, but here we are- with humor, love and grace, here we are. 