What do I say now? I’m sitting here watching the cursor flash waiting for something to be typed.
I’m at a loss for words.
I’m in the living room right now. Sitting in the same place I have sat for dozens and dozens of nights, just 10 feet away from the bed that Hannah would sleep in while I would be doing my night nursing. The house is silent, dark while the kids and Daddy still sleep. My body doesn’t quite know what to do sleep wise yet.
The room is completely quiet. There is no trach humidifier going, no oxygen pumping. It just feels so surreal not having the TV or lights on in this room ~ They have been on nonstop for months. I miss the sounds of Hannah breathing while I sit here.
Just too quiet.
A lot of friends and family have asked me, “how are you holding up?” The honest response to that answer would really vary from one hour to the next. I’ve had moments of completely emotional breakdown, periods of numbness as if everything is okay. A lot of feelings of guilt, most after the periods of numbness. I am much better at remaining composed when I’m around Ethan and Abby and others than I am when I am by myself.
I’m not going to share much about the details of Hannah’s passing. Those hours are something that I need to keep safe in my heart and in the heart of those that were here that night. It was a very, very difficult and emotionally exhausting experience.
I am so thankful that I was the one holding her when she took her lasts breaths. Even though I had made comments during the weeks prior that I just wanted someone who cared about her to be holding her when it happened, it would have killed me if it was anyone else or if she was sleeping alone when it happened. I had to say that because we still had to live our lives because of our other two kids.
But during the last 4 days or so, I rarely left the house. I forced myself to run errands with Abby that Friday afternoon just get time to clear my head. But after we got back, I didn’t leave the house for anything. Ethan and Abby had their last games of the season on Saturday, and I just couldn’t leave. I didn’t want to be away from Hannah just in case.
But Hannah was cuddled tight in my arms when she finally let go, with my fingers running through her hair, caressing her fingers and face. It is where I needed her to be. I selfishly wanted to be the last person she felt when she let go.
I will forever be grateful for her giving me that one last gift.
When you are ready to work on the Little Miss Hannah Foundation, I’d love to stand behind you and help you raise money. Such a strong mama.
My heart aches for you. Your love for Hannah is such a testimony to her life.
She was right where she needed to be, and it is perfectly fine to hold those last hours close and private… And in your heart.
It is very good to “hear” your voice speaking of the sorrow and loss. Your words paint pictures in my heart and mind and bring me to tears. Be sure to let Abby and Ethan see some of your tears. Everyone will have a multitude of feelings to be shared. You are an awesome mom (and wife) amid the tears, smiles, anger, guilt, fears, hopes, etc. Your array of emotions can help validate the children’s. Holding you all in prayer again today.
Carolyn (in Las Vegas)
Please let the love and prayers surround you. I hope you can find some sleep. I cannot even imagine how exhausted every fiber, brain cell, and emotion in your body is. You will be told by many not to feel guilty. You did so much for Hannah in every way. Unfortunately there are some things that are out if our control. She no longer struggles. She is free to run and play and be the person she is without her body holding het back. And she will always be a part of all of you.
Carrie,
I can identify with the darkness, I have lost my son, Mario, to type 3 only 15 months ago. One thing I have learnt about the darkness though is that it is the gateway to finding acceptance of a very painful situation that I could not change and then in spite of the pain, I found peace.
My wish for you and your family is that like Hannah, you will find peace!
God bless you all.
Moreena Howlett-Mason
Jamaica West Indies
There are so many thinking of you and your family, and I hope that it helps you even in a small way. I truly feel you should give yourself a break in that you should have no regrets or guilt–you did everything a mother could do, thinking through every decision and giving all your love and devotion to Hannah and your family. It is unfair that your precious baby was taken from you, but it is right that she was in your arms when she passed. Sending lots of love your way.
Carrie,
I have been following your blog for a while now, but have never left a comment. I am at a total loss of words. I wish that there was a way for me to magically make the pain/loss/greif you are feeling go away. Miss Hannah was a special girl. The smiles in her pictures light up the room! Please know that there are many people thingking about and praying for you and your family!
I got here because of Phil Buckman’s post in Facebook. I don’t know you or any of your family, so yeah, it’s a total stranger that’s writing in here.
I don’t know how it happened or for how long you’ve been through all this. All I know is that any loss of one of our beloved ones hurts. It hurts to the soul, is an unexplainable feeling and I can barely guess how it’d be to loss your little baby.. It’s hard to say something that can really cheer you up, specially when it is about someone you don’t know at all. All I can say to you is that no matter how long it’ll take, you’re gonna overcome all this. You have two beautiful angels to go on and that is a strong enough reason to keep going. They need you more than ever now. If you feel you’re running out of the strength you need, pray. I dunno if you believe in Jesus or not. I can decide not to believe in force of gravity but that doesn’t mean if I jump out of a building I won’t crash to the ground just because I don’t believe in it.
So pray, just pray, even though you don’t believe, or even if you feel anger, just express all of your feelings, open your heart, tell him how you’re feeling and you’ll see how recharged you’ll be after that.
And thank life you still have a beautiful family to go on and to find that strength.
May God’s love be with you and your family in every moment.
From Chile,
Gerardo
Hi no matter what I say to u right now won’t really help. I don’t know u but I know what u have been through. My daughter has GM1 and that too is a rare genetic disease. She is 2 years old and doing good.
I am really sorry for your loss. I have never known ur daughter but my heart grieves for her. I feel your pain. I hope u can find the strength to keep going on.
Best wishes,
From Pakistan
Sana Sarfraz
So glad to know that Hannah was in her mothers arms when she passed away. We are thinking of you and all your family.
Karen, Justin & Dallas
I also have followed your blog but never commented. Firstly, my most sincere condolences to you and your beautiful family. Secondly, you are one of the strongest people I have ever “met”…..truly. Your little girl is now running freely in a body without pain or suffering. And you will meet again one day.
Carrie I am so sorry for your loss.You were blessed to be the last person to hold her and be with her at her last moments. She felt the love the touch and the safety of her mom when she decided it was time to let go. Keep the memories and make sure that this little fighter, this beautiful girl will never be forgotten. No words can ease your pain now! My heart is broken my prayers with you all. Stay strong for Abi and Ethan.
Carrie,
It is true that there is a void now that no words or no amount of love and condolence can fill. You gave her life and she gave you her last breath.
It will take a very long time for things to feel “normal” again, whatever normal is?
In any case, you are an amazing mom who did amazing things. The Little Miss Hannah Foundation will be a lasting tribute and I know all of us will help make it so. Her memories will last all of our lifetimes and beyond.
All of you are in my prayers every day.
Please know how OK it is to not be strong all the time anymore!
‘Say not in grief ‘she is no more’ but live in thankfulness that she was’
Hebrew proverb
I’m at loss for words. My heart is broken. I know you love your child with your all. And she loves you. She loved spending time with you. She loved you holding your hand and all the things you did. She loved all of you because you first loved her and love her selflessly. there is this bible verse that I read the other day that really spoke to me. “Precious in the sight of the Lord is the death of his saints. (Psalm 116:15 KJV)
May the Lord strengthen your frame & comfort you and your loved ones. May he grant you peace.
She is looking down on you wanting to see you smile just like you did when you would always smile at her.
all the love and hugs.
♥
There is no other love like the love of a mother for her child. As a mother myself I cannot imagine what you are going through, my heart breaks for you. What a blessing that you were holding her when she let go. God bless you and your family and know it is okay to just let it out, you do not have to be strong anymore.
Carrie and Robert, I am deeply sorry for your loss.
I remember both of you from UW.
Much love, much light, peace.