She has been gone four months now. Today was a ROUGH day for me.   I have been in just a funk all day long. Even started crying at the restaurant at lunch … no clue where it came from, but it just started.

I keep hoping that the 4th of each month will get easier as time goes by, but today felt just as raw and painful as that first month.  Even more so because I miss her so… damn… much more now.

Hannah, you should be home with us.

You should be here so your brother can read books to you and so that your sister can sing to you.  You should be here so we can spend the night snuggling together and just gazing into each others eyes and smiling.  You should be here loving on your daddy who misses you just as much as I do.

You should be here with me…right now.  Not fair.  I’m pissed.  I’m sad.  I’m frustrated.  I’m heartbroken.

I just want you here with me.

I was cleaning up Abby’s room today, and I came across this letter she wrote to Hannah.

Apparently, she writes to Hannah quite often.  I can tell by her conversations with me and the other letters she has written that she is still incredibly heartbroken.  But like me, she puts up a brave face.

Last night, when she saw me tearing up after seeing a picture I found of me and Hannah a few weeks before she passed, she broke down too.  Tears were just pouring out of her, and she really, really misses her little sister.

I told her that it is okay that we cry.  Even if we cry next week, next year, or 10 years from now.

The hardest part of the conversation was when Abby said something that I feel so strongly as well but never mentioned to her… “I hate that I will never get to see Hannah again.”

Yeah, queue my tears…

Every one of us is taught that there are five stages of grief.  I know I was.

Denial to anger to depression to bargaining until you finally reach “the goal” of grief, which is acceptance.

Maybe it is because my situation is unique or maybe because I am just wired differently than the rest of the world… To me, this doesn’t fit me.

Don’t get me wrong, the five different stages are all ones that I have felt, so those themselves are all very valid.  But to call it a “stage” is so misleading.  It is as if grief is supposed to be this staircase that with each step or “stage” you finally reach the top of the stairs where you find “acceptance.”   It is almost as if once you pass a stage, you graduate from that feeling and move one step closer to the trophy of acceptance.   Once you reach acceptance, fireworks go off and bands start playing music, and then you get to continue your life with fun, freedom, and the weight of the world lifted off your shoulders and no more sadness in your heart!

Yeah, right.

To me, grief is more like that hand game we used to play when we were kids.  You and your friends all put your hands on top of the others, and then you constantly race to get your hands on top.  Of course, very quickly, someone else puts their hands on top of yours.  And it just goes on and on.

That’s how my grief feels.  Instead of hands piled on top of each other, it is these stages of grief.  Constantly shifting for the top position.  Lately, depression and anger have been winning out on that top spot, but it is a continuous emotional change.  For me, there is no ‘step’ to graduate from.   I can go from the “goal” of acceptance and having a good time with friends to being at depression just hours later.

“Time heals.”  That is another phrase that I hear oh-so-often when talking about the loss of a child.  Time does not heal.  That is a misnomer.  What “time” does is give us the space we need to readjust our lives after our loss into something that is more doable on a day-to-day basis.   “Time” gives us a chance to explore our feelings, to feel the various parts of grief, and to learn how to manage how to live with this grief.

“Time” does not heal.

You can’t package grief in a nice and pretty little formula.   There is no rhyme or reason to understanding grief.  There is no time frame that you can put on grief.  I know in society today that we like things to be easy and understood so that people around us can “understand” what we are going through.   But the grief from the death of your child, especially the child that you fought for so long and that passed away in your arms after a long fight, is not something that others will ever understand.

Grief is a jumbled, chaotic part of my life now.  It is not any easier today than it was last month.  In fact, it is actually getting harder the longer I live without my little girl.   As more time goes by, the more I yearn for that one more opportunity to just hold her in my arms and see her smile.

But as “time” continues, I’m relearning how to live my life without her.  Moving through life on this alternate path that I did not want to take but I am forced to take.    My kids, my husband, and I are all relearning how to live our lives together without her.

By recognizing grief isn’t in stages but is more like hands on top of each other constantly fighting for top position, it takes away a lot of the pressure to conform to what people think on how I should be grieving.   Some people who think I’m “doing so well” after losing Hannah don’t see the tears and depression when I am alone in my thoughts.

The really need to disband that fallacy of grief being in stages.   Grief, especially with losing a child after a long illness, does not come in stages.   We don’t graduate from one stage and go to the next.  It puts too much pressure on us to feel that we need to get through a stage in order to start healing our hearts.

I accept that grief will always be a part of my life.   I loved Hannah so much that I just have to accept that.

 

One of our biggest concerns during Hannah’s illness, especially during the last few months of her life, was how her disease and her loss of skills and interaction was affecting her older brother.    There were very few articles published anywhere on the internet, and the ones we found were mostly discussing sibling loss as a typical kind of family loss where someone dies unexpectedly.

But kids like Hannah who live with progressive and degenerative diseases don’t pass unexpectedly.  Ethan and Abigail watched as their sister learned skills such as playing with toys, crawling, cruising along the couch, and eating refried beans with her hands.  Her developmental delays due to her disease meant she reached these milestones much later than developmentally normal kids, but they celebrated each new milestone right along with us.

They also watched her loss those skills over the course of a year to the point where she could no longer even roll over or hold anything in her hand.  As the disease progressed, it was more difficult for them to be interactive with her.   She eventually needed a tracheostomy to breathe and a G-tube to be fed.   She went from being a child with “special needs” to being one that was “medically fragile,” requiring many ER visits and hospitalizations.

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