I look at this picture of Hannah, when she fell asleep on her own those first few hours at the hospice, without meds for the first time in weeks. Her body was just so exhausted at this point. Right now, I feel that same crushing feeling of defeat I felt that day.
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.
Hi Carrie.. Songs have a way of expressing our emotions and are so powerful. The song that does that for me is The Rose by Bette Midler. I played it over and over again to Bella when she was critically ill in hospital. All i can say is I hear you and send hugs
xxxx
Cath
Oh Carrie! You will carry the torch for Hannah and all the other children !
And… you are not alone, I will stand by you .
Much love.
Carrie, you’ll never forget her and you’ll always have Hannah in that space of your heart that is devoted to her.
Lunesta never worked well for me, Ambien did the trick. Within minutes I’d be out like a light. But it’s really hard to get off of without a plan. No cold turkey or the rebound insomnia will wear you out. I used to use Sonata and there was no problem getting off that either. I liked it better than Ambien because I didn’t feel hungover in the morning which Ambien can do. You have to weigh the side effects, but ask your doctor to try either of them.
I have to take my sleep meds at least an hour to 2 hours before I go to bed proper. I’m using Trazadone now and it works pretty well too.
Prayers for you to be able to get things in order for school and for the kids.