This is where we were one year ago — what I would give just to have a few more minutes with her.

But what I am thankful for is that I had three years with her. It was not enough, by any means, but it is more than some families get.

She is my heart, my teacher, my love.

I am having the hardest time trying to psych myself up for the upcoming holidays.

I used to love the holidays so much!  Decorating the house, putting out the decorations…we did it all from Halloween to Thanksgiving to Christmas and Hannukah.

The kids and Daddy did the Halloween decorations this year.  I wanted nothing to do with it.  I saw the stuff around the house but, I don’t know.  My heart just is not into it.

We went trick or treating with family, and the kids had fun.   We brought Hannah’s Minnie Mouse with us, and I held it while we walked.  I thought about Hannah at least a dozen times.   Missing her, wishing she was with us that night with her brother, sister, and cousins.  But most of all, I was constantly think about how she only had one year of really experiencing Halloween and she was too young to even enjoy it.   How she was robbed of those experiences.

And now we have Thanksgiving coming up.

Last Thanksgiving was spent with Hannah completely drugged and sedated because she was suffering so much.   Our family all hung out in the family room (which was where her bed was), and she was constantly being held in someone’s arms.  Mine, her nurse, her grandparents, her aunt and uncle…constantly being loved.

This year, she is gone.   It is really killing me.

The plan was to go out of town this Thanksgiving with family, and I was very excited to get away for this holiday.  Even though we’d be celebrating together, it would be “away.”

Then we found out today that plans had changed.  Because there was no snow where we were going, we had to cancel this trip (can’t go sledding on dirt!).

It hit me much harder than I thought it would.  I became quite down and I realized that I NEED to get out of town for Thanksgiving.  Just to get away and do something different like we had originally planned.

So my wonderful husband and I decided that we are going to take the kids up to Laughlin for Thanksgiving Eve night, hang out by the river, and then have breakfast in Laughlin before driving back home and spending Thanksgiving dinner with family.

It is hard to explain…this need to do something different during these holidays.    And I know that there is a sense of “not being fair” because traditions are traditions.   But I have this drive to create new traditions that recognize that things are different because Hannah is not here.

We still have 6 more weeks or so to go.  I wish I could just ignore the holidays, I really do.  But I can’t.  I will continue to put on my brave face for my friends, family, and kids.

And my heart will continue to break a little bit more each day because my love, my baby girl is gone.

Yesterday I went to visit Hannah at the cemetery.  I still go about once a week (unless there is heavy rain because it gets muddy).   I like to make sure her area is clean, her flower arrangements and holiday/seasonal decorations look good … you know, my sweet Hannah is always one of the prettiest decorated plots there.

This is the only new thing I get to do for Hannah now.   I enjoy picking out the decorations, the flowers… working on what would look best and still represent my sweet girl.  There are no other care decisions I get to make for Hannah anymore…except for this one.

As I rounded the corner into the cemetery which leads to the adult side, I saw only grass and headstones.  No color, none of the sporadic decorations I usually see.

Then as I got to the children’s area, I saw the same thing.  What was always a bright, colorful, and full of love and decorations for the children area was only grass, markers, and vases turned upside-down into themselves.   I felt my heart plummet to the ground.

Hannah’s area, which I had just decorated for Halloween a couple of weeks early, was completely empty.  Gone were the new flowers, new decor, even her old rod iron pinwheel that we kept for the past few months.

See, the thing is, it is partly my fault.  I read the signs they post saying that they were going to do a cleanup (which they do on occasion) and that things needed to be removed by October 15th.  But usually those signs follow the rules that anything that is located INSIDE the vase will be okay.

I just ASSUMED that the same rules applied that they have all year.  You know what happens when you assume …

I called the cemetery this morning.  I learned that this is a yearly cleanup and maintenance, and that nothing can be put back on the grounds until October 22nd.  Everything that was picked up was tossed in the garbage.  Hannah’s beautiful new decorations were unceremoniously tossed in the trash like everything else.

This bothers me more than it probably should.

The kids wanted to break out the Halloween decorations today.   It had always been a big thing when we lived in Texas, and the kids love to do up the front of the house.

I had absolutely no interest.

While going through the boxes in the garage, Abby found one of Hannah’s old costumes.  It was the ladybug costume she wore when she was about 15 months old.   Hannah and Abby were matching ladybugs that year — and Abby was so proud of that!

She brought the costume into the house to show me, prefacing it with “this is going to probably make you happy but also cry.”  Does my daughter know me or what?  Sure enough, seeing that tiny little costume just hit me in the heart.

I remember her wearing it.  I remember that year being disappointed because I only got one picture of her in the costume and she was with all the kids.  I can’t remember anything else about that Halloween with her.

Since she brought the costume in, I just haven’t been able to shake off this sadness.   I’ve been awake and teary-eyed all night since Robert went to sleep.  I can’t sleep.

Then I looked at my blog from last year.  Something I seem to do more lately now that we are getting closer to the date I am dreading so much…

October 14th … the hardest decision we have ever had to make in our lives.   The decision to stop fighting for my sweet daughter’s life, to accept that we were going to lose her sooner than later.

It was the day that my husband and I realized our baby girl was going to die, and that there was nothing left we could do to save her.

 

We are coming up to the one year mark…

I’ve always found myself doing the “this time last year with Hannah…” thing.  Trying to remember the good times, picturing her sweet little face.

One year ago, there were no smiles.  Even worse, there would be no more smiles.

It was the beginning of a month-long round of hospitalizations that would end up with us having to make the horrific decision to put Hannah into hospice care in mid October of last year.

This time last year, we were still naive and still had hope it was something fixable, something she just needed to get through.  Never in my mind did I think that her Gaucher’s disease destroyed her body so much to the point where she was in constant pain and discomfort from  brainstem dysfunction and the other related crap Gaucher’s disease causes.

What really gets me right now is that I cannot for the life of me remember her last true smile.  Had I known it would have been her last smile, I would have soaked it up.  It was sometime at this point last year…

I’m going through this major guilt phase, wondering if we had missed something that we could have “fixed” to buy us more quality time with her.   Could I have overlooked something simple, something that would have given us even just an extra day or two?

And on the flip side, did we cause her undue pain and suffering because we didn’t realize what was happening at this time last year?  She was so uncomfortable, and we looked at everything – trachiitis, pneumonia, reflux, constipation… all her regular enemies.

I wish I remembered her last smile.  Her last real smile.  The one where she was just Hannah, beautiful, big cheeks, melt-into-your-heart smiling girl.  The one where she made me feel so much love, unconditional love … raw, true love … just by looking into her eyes.

I feel like I should be able to remember that.  But I don’t.  I don’t.  What does that say about me?

From this point on, “this time last year” will bring no more happy memories.