Archives for December 2011

HannahMinnie, Hannah doll from Santa, and one of my favorite gifts, a canvas print of Abby and Hannah sleeping together, just 5 days before she passed away

We made it through the holidays.  I did better than I thought I would, honestly.

I ended up flaking on Christmas Eve activities with family because I just couldn’t bring myself to do it.  I felt this heavy load on my chest of sadness, and the thought of having to be “on” and “festive” while making gingerbread houses with all the kids just brought me to tears.  So Daddy took the kids without me, and it gave me a chance to let me have some time to myself.

But come Christmas day, I felt much better about things.  The night before, we put out all the Santa gifts, including the Hannah doll we had ordered which was the only thing in Hannah’s stocking.  Leave it to Abigail to point that out first thing even before her other gifts…”Mommy, Santa brought Hannah a doll!”    We had a great morning with Ethan and Abby, watching them open and play with their presents.

Then it was off to my in-laws house for more presents and Christmas Day dinner.  We stopped by the cemetery and visited with Hannah for awhile before going, and it was really comforting to see quite a few other families there visiting their kids as well.   It reassured Daddy and I that putting Hannah in the children’s section was definitely the right place for her, so festive with holiday spirit and so many visitors, unlike the rest of the cemetery.

Christmas Day was actually easier than I thought it would be, thank goodness.  Hannah was present in everyone’s minds, she was talked about often, and Santa even brought her a stocking filled with wonderful keepsakes for everyone, including this musical snowglobe angel for me, which I love (yep, Santa stops at my in-laws house for each of the grandkids too).   You could feel the love for Hannah throughout the day and evening, and that made such an impact on me.

Hannah and me, December 25, 2010

But there still was this tremendous void in my heart, and I could never really get into the holiday spirit.

That Christmas evening, after the kids and Daddy went to bed, I started taking down all the Christmas knick knacks and decorations in the house.   I had to get it done right then.  It was kind of felt like a reward of sorts, which probably doesn’t make sense…but I made it through Christmas for the kids and now Daddy and I need to get rid of all the stuff that reminds us of it.

By late morning on the 26th, everything related to Christmas (with the exception of gifts) was already packed away and back in the garage.   This is not the norm for us, we usually left all our decorations out, including the tree, until after New years.   But I just couldn’t wait that long this time.

I still am constantly feeling this yearning and intense need to be with her, to have her physically here with me.    I still look at that picture that was taken at Christmas last year, a candid picture of me and her outside while the kids were playing.  She was so happy then, always smiling.

Even though Daddy and I realize now that the signs were already there that the disease was really started to progress, we still had hope then.  Hope that she would beat this disease.   Hope that there would be something out there to slow it down.

I didn’t even think then that she wouldn’t be here with us the next year.   There is something pretty crippling and devastating to your soul when hope is crushed and replaced with grief.

But, we made it through our first holiday without her.   Admittedly, a lot of it was just going through the motions for the sake of the kids, but we made it through.

We decorated Hannah's grave for both Hanukkah and Christmas. When we came back to visit a couple of days later, we noticed a Minnie Mouse had appeared! We have no idea who brought it, but it warmed our heart tremendously.

I’m still having a terribly hard time getting into the holiday spirit.   I’m going through the motions, but I just am not feeling it.  I want to feel it, I really do.

This past week has actually been harder than the week before.  I think that it is now really sinking in more and more that Hannah is gone, and I can’t get her back no matter how much I want her.

And I do want her.  Horribly.  I find myself more mopey around the house, and being under the weather hasn’t helped much either.    I long constantly for her touch, her smile.  I feel so incredibly lost without having our cuddle time every day, many times a day.

I feel very cheated.  Cheated because my baby girl was taken away from me.   One of the most important things in my life was ruthlessly ripped away from me, and I am angry.  And sad.  And pissed.  And crushed.  And lost.

Hopelessly lost.    Hopelessly, hopelessly lost.

I’m going through the motions right now.  Still working on my masters degree in counseling (actually got an “A” in the class that just ended surprisingly), being mommy to Ethan and Abby who are home for the holidays (who are grieving at times, annoying each other constantly, and are dealing with a mom who just isn’t in the mood to do anything).   I’m glad I have Hannah’s foundation to start to work on, but even that doesn’t always fill the emptiness I feel.

I just have to make it through the holidays.  I told Daddy that if we could have afforded it, I would have probably whisked him and the kids away for that weekend and just ignore Christmas day.  But that wouldn’t be fair… fair to Ethan and Abby, fair to our family, just wouldn’t be fair.

Hannah should be here with us.   Bottom line.  She should be here.  But she isn’t.

How am I supposed to feel celebratory when I feel like my heart has shattered in a million pieces?   But I will put on as brave of a face as possible for Ethan and Abby.  Even though they have seen me have my mini breakdowns quite a few times, I will try and make their holiday a bit easier and not let them worry about me so much, at least for Christmas day.

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.