View from the house….ahhhhh

We went away for a long weekend road trip to get together with some friends.  One of them had a lakehouse in Northern California, which I swear I could have lived on her deck forever.  It was absolutely beautiful.

It was such a nice weekend away.  The internet didn’t work that well, and it was actually refreshing not being “connected” all the time.  The kids had plenty of new and old friends to play with, and I enjoyed being able to just relax and chat outside of the stress of everything going on.   “Decompressing” was the best term I could use for that time.  And it just reaffirmed how awesome these friends are.

On the way to the lake house, we stopped in Reno to see some friends.  I was able to meet and spend time with Addi and Cassi for the first time in person, and OMG, I just couldn’t stop loving on them.   Being able to sit down with Chris Hempel, someone who I have talked to on the phone and emailed with more times than I could count ~ finally spending time face to face, and it was if that meeting in person was just a technicality.

On the way home from the lake house, we stopped in Virginia City, NV, and took a tractor tour of the city.  It was a lot of fun seeing the old ghost town and mining town, and the kids were fascinated!   We also stopped for dinner at the Mizpah Hotel in Tonopah ~ but we didn’t see any ghosts, kids were bummed!

When we blow out tires, we blow them out big apparently!

We should have known the weekend went too well because we were reminded about 35 miles outside of Vegas at 12:30 am in the desert.   Front tire blowout.    Daddy had to take everything out of the back of our minivan only to find out that our spare was actually under Ethan’s seat.   So picture will you, pitch black desert highway, a car or truck whizzing by every so often, and a minivan pulled over with its entire contents stuffed with suitcases, coolers, books (thanks Mindy!), etc.  Fortunately, AAA made it out there in about an hour and had us back on the road.

We got home at 3 am on Tuesday morning.   We are STILL recuperating 🙂

This trip came at the perfect time.  The stress from our upcoming event in SIX days and then the anxiety about Hannah’s birthday coming up … it was really getting to me.

I realize now that whatever happens at the event, if something goes wrong or gets chaotic, it will be what it is.  We are preparing like crazy and have SO many people spreading the word that I hope it is a success.  But I can’t stress about the turnout or how it will end up because the most important thing about the event is being able to then focus on what I really want to do – helping families.   So whatever we raise at the event will be more than we had before the event, and every dollar will go to doing what our passion is leading us to.

As for Hannah’s birthday, I am still very anxious about it.  It is almost as if I don’t want it to pass because I’m not ready for that milestone to hit.   All I know is that in the morning, Daddy, the kids and I are going to the cemetery and bringing her balloons.  I need some time for her before we head off to The District to prepare for the night’s event.

We had another loss in our Gaucher 2/3 community today.  An adorable little boy with beautiful brown hair and big eyes.  I would look at his pictures often because he shared so many mannerisms and looks that Hannah used to do.

I’ve been a part of this ‘community’ now for almost 4 years.  I have gotten to know quite a few families with kids affected by Gaucher’s 2/3, and I have seen so many of these children lose their battle because of Gaucher’s Disease.   I feel like the scale has tipped for me – I know more parents who have lost children to Gaucher’s than I know parents still fighting for their Gaucher kids.

It shouldn’t be that way.

Then again, we shouldn’t have to lose our children in the first place.

Hannah on Dadd’s lap enjoying the fireworks – July 4, 2011

July 4th is coming up…

To me, it marks one year since Hannah was able to enjoy her last holiday with us.   She was still smiling, still very interactive, and she was very intrigued with the fireworks in the sky.   Just a couple of months later, her health would deteriorate so horribly.

To me, it also marks seven months since she passed away.

The nights are still so very hard for me.  Yeah, I take something to help me fall asleep, and I usually am asleep by midnight or so.   But before then, I try to read, play games on her iPad, anything to try and keep my mind busy.

But then the moments come where my heart takes over my head…it is hard.  I look at her pictures constantly.  Watch her videos.

I miss her so much.  I am desperately trying to remember what she smelled like, how her skin felt…how it felt to have her hand holding mine.

The memories of those little things are getting harder and harder to remember, and it is killing me.   The pictures and the videos and the memories just aren’t enough sometimes.

I want her back.  I want her back so bad.

I keep having to remind myself…she is gone.  Gone.  There is no way to bring her back to me.

Abby and Hannah, holding hands — end of November, 2011

At night, when I think of her, I will find that I have tears in my eyes, not even realizing that I was that emotional.

Almost every night, I ask her to come into my dreams.  To let me see that she is okay.  To be able to spend some time with her, even if it is in a dream.  But it has yet to happen.

I hate that it is getting harder and harder to remember all those little things about her.   I wish I took so many more pictures and videos of her … of those little things.

Forget the videos and pictures.  I just want her back.

My handsome boy, now a middle school kid.

He was the student speaker for his class, and his speech was absolutely amazing ~ well, from what I heard at the beginning. He talked about his school memories, the fun times, and his friends. He shared about Hannah and how supportive the school was after she passed away, and I lost it.  He asked the principal the next day if he could bring it home because I wanted to read the entire speech.

From what I heard from friends and others there, Ethan had most of the families in the audience in tears. Even Mr. Solomon, his principal, told me after the ceremony that when he first read Ethan’s speech, it made him cry.

I’m so proud of him. I’m hoping to get the DVD that my father-in-law took of the ceremony so I can see the speech again for myself!

For a kid that rarely talks about his feelings about his little sister passing away, opening up like this to the entire school (willingly!) was a huge deal.

Portion of Ethan's handwritten speech where he talks about Hannah - I forgave him for getting her date of passing wrong (it was December 4th)

Five months old

It is coming up on six months since Hannah passed away.   June 4th looms on my calendar ~ even though the day is blank, I know what that date represents.

I found a few places online for grieving mothers, but only one really speaks to me.  It validates how I am feeling.  It sends out daily sayings such as:

There is nothing or no one that can replace our child! That is what makes child loss such a painful, difficult, life-long feeling of emptiness. You can replace “things”, but how in heaven’s name do people think it’s possible to replace a child? It cannot be done. The hole that is left is a permanent empty spot in the heart and somehow we are left with trying to live with the pain. It’s just plain hard to do!”

It’s so hard to believe — child loss is NOT supposed to happen to anyone! People complain about losing their jobs, or losing their investments, or having a bad day of fighting with their neighbors. These are all things that can be changed. But, child loss…..we can NEVER change that, and the emptiness, confusion, pain, and sorrow are for the remainder of our days on this earth. If only others understood the true meaning of “loss”.

I am not the kind of person who outwardly grieves 24/7.  I realized at our last parent bereavement group, that I am the type of person who doesn’t want to show the grief because I don’t want to make people feel uncomfortable.  Yeah, I know ~ not so healthy.   But sometimes it is just easier than having those awkward moments because people don’t know what to say or do.

Some weeks I am better than others.   Last week, I was a mess – between Mother’s Day, the Make-A-Wish speech, and the sea of Hannah shirts at the Ronald McDonald Run – wow, did I miss Hannah.  Words can’t even touch on how much how hard that was.

Having Hannah’s foundation has been a godsend to me though.  Being able to share her story, honor her memory, and just keep her spirit alive helps me so much.  I get to talk about Hannah to people who are wanting to hear about her ~ and that is a personal gift I get by doing this.

But on the flip side, I only get to talk about Hannah.  I don’t get to experience Hannah.  I don’t get to cuddle her, or rub my fingers through her hair, or caress her face.  I don’t get to sing “You are my sunshine” to her and see her face light up.  I don’t get to lay in bed next to her and hold her hand.

Damn, I miss her.

June 4th is in just 3 more days.  She will be gone for 6 months.  It feels like a horrible milestone.