Archives for September 2012

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.

Anger – Anxiety – Abandonment.

My triple A’s.

I’ve been missing Hannah a lot this week.  Some of it is because the kids started back to school, and I keep going back to how so damn close we were getting Hannah into school.  Ethan and Abigail were so incredibly excited to have their little sister at the same school with them.  She was to start school the week after she first was admitted to the hospital back in September last year.

Instead, we brought her home three weeks later … knowing that her body was failing her … knowing that we couldn’t fight anymore for her … knowing that the deterioration of her brain from the Gaucher’s was causing her unbearable pain and irritability … knowing she was so unhappy and uncomfortable …

Knowing that she was going to die.

There is still a rawness that I feel when I think about her sometimes.  Not all the time, but sometimes.  The “sharp knife of a short life.”   It mostly happens when I am alone and find myself zoning off thinking about her.   It is just this overwhelming, crushing feeling in my chest.  I don’t even realize that I have tears on my face until they are rolling down my cheek.

My triple A’s.  I can’t say they are all brought on because of my grief.  Some are.  There are other forces at play here, other people and situations in my life.  That is where I am at now.

Angry, feeling abandoned, and sometimes not feeling like I have both feet firmly on the ground knowing what direction I am going.

Despite feeling this way, I’m very proud that I am doing this all my way.  My way with the complete love and support of my husband and kids.  I don’t care how other people think I should be handling my situation.  I don’t care how other people may not agree with the decisions I make for myself and my family right now.  There is some relief of stress when I came to the realization that the judgement of others on how I should grieve, “move on,” etc., should not and will not play any part in my grieving process.  I can’t change how other people think, and I don’t have the emotional energy to try to get them to understand what I am going through.

Doesn’t make those triple A’s go away though.

I came across this post written by a mom with a medically fragile child.  “Top Ten exciting things about having a kid with a rare disease.”

As I was reading her list, I started laughing and saying to myself “Yep!” to each one.  I could totally relate to each one as I have lived each one, multiple times in the past few years.

My heart sank.  I realize that is not my life anymore.  I don’t care of a medically fragile child anymore.  My two living children thankfully are healthy and seem to have the same issues as  other normal-developing children.

I got jealous.  JEALOUS!   Tears started, and I was getting angry at myself for being jealous.  Why the heck would I be jealous that today another mom is having these experiences?

Then it finally hit me.  I’m jealous because if I was having those experiences today that would mean Hannah would still be here.

I would go through hell and back if it meant that she was still here with me.