I saw this news piece tonight about a teenager who passed away.  The mom of this girl (who has two other kids) made a comment that just hit me to my core…

“I’m just trying to find a new normal without having the missing piece of our 5-piece puzzle.”

That is EXACTLY how I feel.  I’m trying to figure out this new life when all I want is to get my missing piece back!

I read my friend Sarah’s blog tonight, and even though Hannah hasn’t been gone as long as Cooper has, I can relate to every…single…thing she feels.   I could have written almost every sentence of her post.

I’m still feeling very lost at times.

I tried to get my old job as a medical transcriptionist back (I still want to work from home for Ethan and Abby).  I did it for five years before I had to go on bedrest when I was pregnant with Hannah.  My old company offered to bring me back on…if I passed the test.  I tried…I just couldn’t seem to get the hang of it.  I spent 2 hours on three 2-1/2-minute dictations, and I just could not get it.  It was as if my mind couldn’t process it anymore.   I felt defeated because it was something I was so good at a few years ago.  But I guess I’m just too rusty.

Dropping my masters courses was a good thing.  I do feel like there is a big weight lifted off my shoulders right now, even if it is only for 60 days (or I have to drop out completely).  I was thrilled though that I got a 97% on my previous class though.

Putting together the Little Miss Hannah Foundation is so much more complicated than I ever imagined.  It is truly setting up a brand new corporation and business structure!   There is just SO much that needs to be done and in so many directions.  I really just want to get to the point where we can start getting involved with families, doing what I know in my heart  is Hannah’s legacy, but there is just all these other important projects that must be done before we even get to that.

You know, it is hard knowing that I need to figure out a new “normal” life for me when I am fighting so dang hard wishing Hannah was back with me.  I don’t want a new normal, and I may be childish, but I feel like throwing myself down on the ground and throwing a tantrum yelling “I don’t wanna do it!”

When I am alone in bed or on the couch, I try so hard to remember how it felt to cuddle with her.  Trying to remember where she put her arms and legs on me.  Trying to remember how her skin felt and how she smelled.  It is getting harder and harder to remember now.   Trying to remember her smile!

I find myself looking for pictures of her lying on me just so I can at least see how she was even if I can’t feel her anymore.

Just sucks.

 

Rough, rough 36 hours or so.

I went to do the teacher’s meeting, and it was nice to see some familiar faces there, especially Ethan and Abby’s old teachers.   But I just felt so uncomfortable and out of place there this time.   I felt my arm start to shake from nerves — seriously?  What the heck?!    I felt like I was rambling, I felt disjointed, but most of all I just felt so lost without Hannah there.  SHE is the reason people want to participate in things like this.   Without her there, even though they knew the situation, I felt like a bumbling idiot.   What is worse, I could even feel myself holding back and not wanting to break down when I started talking about her, which of course made me lose my train of thought and then again, the rambler appeared again.

What a mess.   Thank goodness the staff at the school are such good-hearted and sweet people and knew our situation and story.  If this had been a brand new school where I didn’t know anyone and trying to relay the importance of World Rare Disease Day…I likely would have failed.  Crash and burn, baby.

The started off an entire wave of chaos in my head.  After that meeting, I went to visit Hannah’s grave.  I just sat down next to her and just started tearfully apologizing to her.   She truly was my strength, and it is almost like when Hannah passed, my ability to strive and succeed went away with her a bit.

The one positive of that morning was we finally sent off our Little Miss Hannah Foundation incorporation papers to the state office.   Once we get that approval, we will officially be a nonprofit corp.   The next step will then be to work towards our 501c3 status.     But that thrill was short lived.

The kids were home from school that day for a teacher’s work day, and I just felt overwhelmed.  My masters schoolwork has been overwhelming me recently, and I had 3 discussion topics (like every week)  and two major papers due this week.   I got most of it done yesterday, but it was very begrudgingly done.   The most important paper, due tonight which is the last night of this course, I just couldn’t get it started yesterday.

Instead I took the kids to the park to play.   They had been so bored being cooped up, and I really had NO interest in going to the park.   Reluctantly I agreed to take them, so off we went.   They went off and played, and I just sat that on the picnic bench alone.  No interest in playing with them.  All I could think about was getting that reported started and finished.    Then I got mad at myself for taking them for granted when I SHOULD be spending time with them and COULD be.   I should have WANTED to play with them.  Instead, no less than 45 minutes after we got there, I decided we needed to go back home because I was tired of beating myself up about it.

Fast forward to today…

Daddy was off to work out of the house, and the kids were at school.   Woke up around 9 am, which is my norm since I usually don’t fall asleep until 2 or 3 am.  I was all by myself.   I don’t do well when I am all by myself apparently.

All I kept thinking was I HAVE to get this paper done today.  Then when I saw the requirements for the first week of my next class (which starts tomorrow), it was the same thing.  Three more weekly discussion questions and multiple individual and group assignments.

That’s when it happened.  I think I had a minor panic attack.  (Never had one really before).  I just became so overwhelmed with everything all of a sudden that I just lost it.  I sat on the couch for almost two hours just in tears.     So many things rushing through my mind, and the physicality of all of it was just so uncomfortable.   I kept running the list of things stressing me out in my head…school work, needing to get a job to make an income, setting up our foundation, spending FUN quality time with Ethan and Abby, reconnecting with Daddy on a non-medical caretaker level, and most importantly, missing Hannah like crazy.

A friend of mine made this comment to me today:   “If you don’t have a few moments in your day when you can just be carefree, you will learn never break out of this misery.”

I don’t know how to do “carefree” anymore.   She was right.   I don’t have time in my days where I just spend quiet time doing something I want (playing on FB doesn’t count).   I want to read books again, books that aren’t medical in nature or trying to educate me on something.  I want to read thrilling, romantic, historical, just fun books again.  I have not done that in YEARS, probably since we brought Abby home.

I want to scrapbook again.  Digital scrapbooking is great, but I also want to break out the old scrapbooking supplies and do projects with Ethan and Abby.   I want to do crafts again.  I LOVED making crafts with the kids – painting, molds, coloring.   Ethan and Abby both are so artistic in their core, so this would be fun.

I want to WANT to be healthy.  I want to WANT to take care of myself better.   I want to WANT to cook for my family again.  I want to WANT it, but I just have no interest or energy to do it.   Makes no sense, you know?  It is just so low on my list of things to do right now, and I know that is wrong, but it is.

I’m so proud of working on the LMHF.  So proud.  It makes me feel really good working on this, knowing that I am creating a positive legacy for Hannah.

But tonight I just felt that something had to give…so I decided to take a leave of absence for a few months from my masters program.  I just can’t deal with all the work and time commitment right now.   I feel like a failure, and I will likely go back.   I just can’t deal with it right now.   It is just too much.

I need to learn how to have fun again, especially with Ethan and Abby.  I’m not a fun mom.  I have been a caretaking mom for so long, putting Hannah’s needs first, that I need to really change now.  They tried to entertain themselves quite often during the past few years, and when they asked me to participate, 9 out of 10 times I didn’t.   And now, it is home from school, homework, a bit of TV, dinner, showers, maybe some more TV, and then bed.

I need to be able to learn how to have those carefree moments again too.  To do fun things just for me.

I know that a lot of it has to do with grief, and lastly the grief has just been so overwhelming.  The more days that go by, the more I miss her.   What I have also found recently, is that I find myself missing things about her in so many different ways as time goes on.  Good memories, bad memories.

All I have of her are memories, and I NEED more than memories.  I need her.  I physically, heart-aching, need my Hannah back.

I am just so messed up now I guess.  I thought I was doing so much better, but then when I really sat down and looked at what I have been doing these past few months, I was just throwing myself at keeping busy and just passing time.

I don’t want to be like that anymore.  I just don’t know any different right now.

Yep, I’m a mess.

I was doing fine up until about 30 minutes ago.

I’ve been going nonstop for about a week or so talking to people about our Little Miss Hannah Foundation, focusing on my classwork for my master’s program, getting ready for World Rare Disease Day, and just going about life being a mom to Ethan and Abby.

Sleep is still an issue, but I know that I need to see a doctor about getting on something stronger than Lunesta because although it will keep me asleep, it still takes about 3 or 4 hours until I fall asleep.    I tried not taking Lunesta one night, and I couldn’t fall asleep until 4:30 am, even though I was exhausted at 1 am.  I just can’t seem to shut my mind off with everything going on.

Then tonight, after I finally got the kids to bed, a song came on the radio.  “I Won’t Let Go” by Rascall Flatts.   I just started bawling.

I listened to the words of the song.  The same song that touched me so deeply back earlier last year while we were still fighting for Hannah’s life.

The song transformed its meaning while I was listening to it.   Looking back at what I wrote in May, I had such a strong connection to that song, ” almost as if it is my promise to Hannah that I will always fight for her, even when she is tired of fighting.”

But Hannah can’t fight anymore.   She is gone.   The lyrics of the song, each one of them, are just so strong still.

“It’s like a storm
That cuts a path
It breaks your will
It feels like that
You think you’re lost
But you’re not lost
On your own
You’re not alone.

I will stand by you
I will help you through
When you’ve done all you can do
And you can’t cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I won’t let go”

Listening to the song tonight, it connected to me instead as someone who held her daughter so tightly in her arms while her body was starting to shut down, and she was leaving us to go to heaven.   It was as if the song was replaying those last minutes of her life, what I was feeling as I held her until her heart stopped beating.

“It hurts my heart
To see you cry
I know it’s dark
This part of life
Oh, it finds us all
But we’re too small
To stop the rain
Oh, but when it rains

Cause I will stand by you
I will help you through
When you’ve done all you can do
And you can’t cope
And I will dry your eyes
I will fight your fight
I will hold you tight
And I won’t let go.”

Hannah just couldn’t fight anymore.   Her body was so damaged by her disease, and the only thing left I could do for her was to hold her in my arms, to try and be the strength surrounding her body as she let go.   But I have to keep fighting for her.

• I will fight her fight for the rest of my life.
• I will hold her tight in my heart for the rest of my life (even though I wish I could have her truly back in my arms.
• I won’t let go…ever.

I miss her so much.

I went to the parents bereavement support group tonight, and one of the topics that was brought up for discussion is outside people saying things like “it is time to move on now” or “you need to move on.”  As if the death of a child is just something you “do,” like changing jobs or moving to a new state.

You just don’t say “Okay, that is over now so I will start fresh” when you lose your baby.

I HATE those phrases, with a passion.

I have even heard it in my own situation with Hannah.   As if Hannah was just a “phase” in my life, and now it is time to “move on.”   Perhaps it wasn’t meant to be mean sounding, but hearing something like this stings my heart.

From a parent’s bereavement website:
Don’t let anyone tell you how to feel, and don’t tell yourself how to feel either. Your grief is your own, and no one else can tell you when it’s time to “move on” or “get over it.” Let yourself feel whatever you feel without embarrassment or judgment. It’s okay to be angry, to yell at the heavens, to cry or not to cry. It’s also okay to laugh, to find moments of joy, and to let go when you’re ready.

I guess I’m in my “anger” phase right at this moment.   I’m angry that Hannah is gone.  I’m angry that I don’t have Hannah right next to me, cuddling in my arms.  I’m angry that some people think I should just “get over it” and “move on” as if it is so easy to just turn off my feelings and close “that” chapter of my life.  I’m angry about things that I can’t even post about but I know I am justified to be angry about.

Even though I feel I am handling things pretty well since Hannah passed away just two months ago, I know I am still grieving.  I am still feeling lost in what my role is supposed to be now that I am not doing my favorite job in the world, being Hannah’s primary caretaker and lovey.    Sometimes I feel like I am not grieving enough for her, and I feel guilty for that.   It is all confusing, but I know that in time I will work it out.

But don’t tell someone who is grieving the loss of their baby that it is “time to move on” and “get over it.”

For me, I will never “get over it.”  I will learn to adjust to my life without my daughter, and I will learn how to be able to have fun with Ethan and Abby at activities I know Hannah would have liked.   I will learn how to cope with the birthdays and holidays I won’t be able to celebrate with Hannah, and I will learn how to cope with the anniversary of her death.

But I will never “move on” from my life when Hannah was alive.   Even with all its complications because of her medical condition, my life with my three children was truly a WONDERFUL life.

I will just learn how to move through life differently but I will always, ALWAYS, carry Hannah with me in my heart.  She will always influence the actions I take in my life.   I know that I will think about her every single day of my life, and if I miss a day or two, I know that will be okay.    I know that it will not be smooth sailing and there will be rocky periods, but I also know that in time the waves will become less rocky and I will be able to enjoy the water again and learn how to maneuver when the waves come.

I can also admit that I’m still in really rocky waters right now.   I’m so thankful for Hannah’s foundation to be able to focus some of my grief towards something positive, something that will keep Hannah alive in people’s hearts even if she can’t be here with me, cuddling my heart.

But if there is anything that I can enlighten the world with it is just let people grieve on their own time frame when they lost a child.  Never, ever mention that it is “time to move on” or “get over it.”    Just don’t.   Unless you walk in our shoes, you have no clue whatsoever.   Really, no clue.

I’m just thankful that the overwhelming majority of people in my life understand this.  But as always, it is just those few bad apples that leave a sour taste in your mouth that makes your stomach sick and your heart ache.

Yep, I would classify this as the “anger” stage that I am feeling right now.

I have spent a lot of time during the past few weeks on the new Little Miss Hannah Foundation website.   Talk about a labor of love!

The hardest part for me was writing Hannah’s story.

I want everyone who wants to learn about the LMHF to learn about who Hannah was, why she was so special, and how she was able to steal my heart completely.

It was so hard for me to “summarize” Hannah’s life into one page.   It was emotionally difficult enough having to write it all down in the first place, but then I had to edit and cut out parts of her story that were so important to our family, to me.

Her life was so much more than just the one page that I was limited to.   She is worth so much more than one page.  But reality is, if someone wants to learn about Hannah, they aren’t going to want to read an entire book.   (Insert my friends saying, “Hey you should write another book!”).

I like talking about Hannah.  I like hearing her name being said.   Rephrase that, I LOVE hearing her name being said.   It is one of the only connection that I have left to remind me that Hannah is not being forgotten.

Read Hannah’s Story.

We went to a superbowl party at a friend’s house today.  It was great to get out and socialize again, and Ethan and Abby had such a good time with the other kids.

They had a betting pool for the game with 100 squares.   After everyone chose their squares, there were only 7 left that were blank.   They decided those squares would be given to Hannah, specifically for our Little Miss Hannah Foundation.   There was a winner after each quarter.

Hannah won not only the third quarter pool but she won for the final score as well!   What are the odds?   Only 7 squares out of 100, and she won two for two of them!!

Because of her, we are going to be ordering LMHF business cards sooner than later.   One step closer, baby girl!

Maybe Hannah was up there messing around with Tom Brady and the Patriots in those last minutes because she knew she was currently winning the pool?     There has to be some explanation, right?