Hannah's ornament, 2011

After putting off for a couple of weeks, Daddy and I decided it was time to decorate our Christmas tree.  We had been telling Ethan and Abby we would do it “that night” all week long, but we always had an excuse to put it off.   At the time, I thought it was more of Daddy trying to postpone decorating the house and tree.

It is a small tree, only 4 ft tall.  The lights were already on, and in the place of a regular tree topper, someone had placed the little pink bling Santa hat that we had bought for Hannah the week before she passed.  One of the last pictures I have of her is her sleeping with the hat on, holding hands with a sleeping Abigail who had crawled into bed with her…just 5 days before she passed away (those of you on FB have probably seen that pic).   The hat looks perfect because it is so thin that the lights from the tree come through it and illuminate it.

Tonight it was time to decorate.  And I realized, it was not just Daddy that was avoiding this.

I put up our 2011 family ornament, which was a gift from a good friend.   We have had a family ornament every year since we got married, and the current year is always the first ornament we put up.   So I put that ornament on and then each of the kids grabbed their personal 2011 ornament.

I grabbed Hannah’s ornament.  I had ordered it a month ago when she was still with us.  It is a Mickey and Minnie with her name and year on it.  It didn’t have a hook, so I handed it to Daddy to try and find.  Then I had to step back.

It just hit me.  This overwhelming wave of depression and sadness.  I ended up just sitting on the couch the entire time while Ethan, Abby, and Daddy decorated the tree and put out all of the holiday decorations.  I think that may have been the time that I did dishes in between just to give me something to do to get my mind off it.

I wanted so much to have Hannah back with us.  I wanted so much to be able to sit on the couch and snuggle with her like I did last year when the kids and Daddy were putting ornaments on.  I had such an intense, intense, intense desire to just smell her and touch her skin again.

Even though Hannah only passed away less than 2 weeks ago, I had never felt such a chest-crushing sadness.   I have had my emotional breakdowns, but I never felt it this horribly intense.   Ethan and Abby were on the other side of the room playing a game, but I just sat there on the couch.   Daddy had his arm around me as I started to cry.  He understood why I was so upset.  I just couldn’t sit there anymore, listening to the kids fighting over whatever game they were playing and the TV on.

I ended up going into my room, crawled into bed, under the covers, and just started bawling.   Yep, me, the one who thinks I am so dang strong, crawled into bed at 7:30 pm just so I could get away from everything and just be sad.  Such a physically painful grief.  I think I must have eventually dozed off because when I woke up, it was almost 9 pm.  Even though I was still feeling sad, it wasn’t the same overwhelming depression.

I am just not looking forward to this holiday season.  Not at all.  If it wasn’t for Ethan and Abby, I would probably just run off somewhere and let this year’s holiday pass and come back in 2012.

So here I am.  Everyone is asleep.  “Just like old times” when I would stay up with Hannah for my night shift.  Gosh, that seemed like a whole different life.  What I would give to have my Hannah sleeping just 10 feet away from me again right now.

I miss her.  I miss her so damn much.

This was the tribute I gave to Hannah at her service.  Of course, it is easier to post it here than it was to deliver it.  I’m not sure how much those that were there heard because it was so hard to say through the waterfall of tears only a few feet away from her little casket.

Candle lit in honor of my Hannah from a friend who couldn't make her service.

Today is my first day alone since Hannah passed away 9 days ago.  Has it really already been 9 days?  I look at the calendar, and it says the 13th.  Has it really been that long since I have been able to hold my baby girl in my arms?

Daddy went back to work yesterday, and Ethan went back to school yesterday as well.  Abby was having a really rough day yesterday, so she stayed home with me and spent time with me and my friend who came to town.   She ended up spending the night here last night because she missed her flight, and I have to admit that I was grateful for more time with her because she let’s me just be real, no matter what I am feeling.

It was a good day yesterday.   My friend, Abby, and I went to visit Hannah at the cemetery to check on her, make sure she was safe, make sure her temporary marker was there.  Honestly, I just needed to be there with her.

It was very cold yesterday, and the rain was threatening to come down the entire day.  When we were at the cemetery and came up to visit Hannah’s, you know, I started talking to her, and the weirdest thing happened.   A gust of wind blew really hard, and these leaves from the tree near Hannah started showering all over me…just me.  Not Abby, not my friend, no where else.  Just on me.  It was as if Hannah was giving me a sign that she was there, excited to see me.  Then the wind was gone.   Until we got ready to leave.   As we were walking away, another gust of wind blew really hard, showering leaves from that tree all over the three of us.

Right now, I have candles burning in the living room with me.   We haven’t been able to use candles for many months because of Hannah’s oxygen.  But now I have a lavender candle and her Shiva (memorial) candle burning.   I have always loved candles, and now there is a bit of guilt because I feel so much better having them burning around me, but the only way for me to be able to do this means that Hannah had to leave me.

I hate Gaucher’s Disease.  I hate what it did to my family, what it took away from me.  Gaucher’s disease destroyed my little Hannah’s life.   I wish I could put it on a punching bag and punch the crap out of it.   I’m hardly a violent person, but I would make an exception in this case.   I hate that Gaucher’s is such a cruel and debilitating disease.  I hate that it showed absolutely no mercy even at the very end.

Gaucher’s disease never gave Hannah a break, no matter how hard she tried.  And she did…she tried so incredibly hard to fight against it.   And even during her constant fight, she always had a smile on her face up until the last few months when her body was just so tired of fighting that she couldn’t smile anymore.

I wish more than anything she was here so I could feel her, smell her, just be with her.   I miss her.  Gosh, do I miss her.

Gaucher’s disease destroyed her body.  It did.  There is no way to sugarcoat it.  But it failed in destroying her spirit.  Because in my heart I believe I felt her spirit in those gusts of wind when I visited her, and I feel her spirit in the flickering flames of the candles next to me.

Reality is…between memories, a few clothes and toys, and the flickering flames…that is all that I have left of my Hannah at this moment.

Mickey and Minnie being sent to Heaven to be with Hannah

Hannah is now laid to rest.

Her service yesterday was beautiful, heartbreaking, and just filled with overwhelming emotion.  Big bouquet of pink and yellow balloons with a big Minnie and Mickey Mouse were on either side of her as well as a bright and colorful huge bouquet of flowers.   The entire chapel was packed with family, friends, and even people we didn’t know.

Hannah was front and center under a beautiful quilt that was handmade for her with everything she loved the most – Minnie mouse, ladybugs, monkeys, music, giraffes… yet, it was still so hard to believe that she was in there.   The casket was just so little.  When we had our private family time at the beginning, it was all I could do not to scoop her up and take her out of there.  All that stood between me and her was just a few inches of wood, that was all.

The rabbi did a wonderful job, infusing a little bit of religion in with a lot of introspection about Hannah’s life journey.  The cantor, who was absolutely amazing, sang some of Hannah’s favorite songs including Hevenu Shalom Aleichem, Twinkle Twinkle Little Star, You Lift Me Up, and the last song I sang to Hannah before she passed, You Are My Sunshine.  Both my good friend and Hannah’s last nurse gave heartwarming emotional tributes.

Then I gave my tribute.  I was blubbering through the whole thing, but I was able to get through it thanks to having Abigail by my side at the podium.

At the end of that part of the service, they showed the video montage of Hannah that we had created.  Even though it was 7 minutes long, to me it wasn’t long enough.  I wanted to see more and more pictures of my baby girl’s beautiful smile.

It was then time to take the long walk from the chapel to Hannah’s final home in the Children’s Garden in the cemetery.   We all followed behind Hannah who was in a bright white hearse.  The pallbearers, who were made up of Hannah’s grandfathers, her uncle Keith, and three very special friends, helped bring Hannah to her area.

As Hannah was lying there in front of me, lifted up above the hole in ground where she would be laid to rest, I couldn’t help but look around this part of the cemetery.  All of these kids, these other fighters like her.   Some a day old, some a few years old.  All with stories likely similar to Hannah, a beautiful life taken away too soon.

Mickey and Minnie on their way to Hannah ~ in my heart, I believe these white streaks were Hannah's way of saying she was there waiting

Then it came time for the balloon release, which if I had to choose a favorite part (which sounds weird), this was it.  Ethan and Abigail cut the balloons (which were brought out from the chapel), each bouquet with 15 pink and yellow balloons with either a huge Minnie or a huge Mickey balloon.  It was Ethan and Abigail who let the balloons go into the sky and everyone in attendance watch them fly up to Hannah.

It was perfect…I kept picturing my little girl seeing all of these balloons, her favorite colors and characters, coming towards her with love, sent from her brother and sister.   There were streaks of white in the sky, and I knew this had to be a sign that Hannah was there just waiting for them.

Then the hardest part of the service.  They lowered Hannah into the ground, and as is in Jewish tradition, everyone who was there took a shovel of dirt and sprinkled Hannah’s basket.  It is a way for everyone who loved her to help prepare her final resting place for her.  Even our funeral directors, who were so touched by Hannah’s life and story, joined in.

And then it was over.

Everybody left, hopefully holding a piece of Hannah in their hearts forever.

In just thirteen hours, I will be in the same room as my little girl.

Tomorrow is Hannah’s funeral service.   Her “Celebration of Life” service.   All the preparations are ready, well most of them.  The video that was created is done, the photos and memory cards were turned in on Friday.   I have carefully chosen the speakers to give tribute to Hannah and the pallbearers who will walk with Hannah from the chapel to the graveside.

The last thing I need to do is to do MY tribute to Hannah.   I have sat down a number of times to do over the past few days, but I get no farther than the first line.  I know I have to do it.  I mean, I WANT to do it, I just have a hard time writing it down.  Part of me wants to just ‘wing it,’ but I also know that it is going to be such a rough day that I may not be able to get my thoughts out on what I really want to say.

Tonight I had some good friends over.  Just a few of us.  There was pizza, some wine, and sitting around the fire pit making smores.   It was a very relaxing and fun evening.  I was able to be completely myself – laughing hysterically at some points, crying at others.  We all knew that tomorrow is going to be a really rough day, so it was good to be able to allow myself the chance to just ‘be’ for a few hours without having to keep any of my emotions in check.

Thirteen hours until …