Another 12th.. still not getting any easier. Today was filled with chores. ..

Chores like breathing, which today I found so difficult to do. I felt like I was living in jello.. every movement slow deliberate and so very hard to execute.

I woke up angry this morning. Not wanting to hear any more “I’m sorry’s” So my post on my personal page was similar to my parenting with my kids. Don’t tell me with your words, show me with your actions. In this case, don’t tell me you are sorry SHOW me… show me you are sorry by doing something about it. 

I woke up broken.. just completely depleted of any drive or desire to do anything. But the baby was crying so laying in bed all day wasn’t a option. ..At the same time I also felt this immense gratitude for these little lives I am still being entrusted with..

.. .and then I realized that needed to be my challenge for myself today too. Not to just tell them that .. but to SHOW them.. even on a day like today that felt almost impossible to stay upright, let alone demonstrate my unending love for them. I emailed Michelle and Renee the 2 people that really run Unravel and said simply “I’m out. For a few days I am out and you are in 100%. She’s all yours.” Because I knew that if I was going to be able to complete my challenge .. well then they would have to be the only 3 babies I was caring about right now.

We ate breakfast together. Gluten free banana bread. The last thing I baked with her. Both boys happily helped me make it on the 11th.

We light her watermelon candle and talked about why that particular candle.. about how she told me she thinks it smells like watermelon all the time in heaven. So that if sissy is right we can smell what she is smelling. And we decided to go to a museum that we have never been to.

A way for me to do something for them because of her. My forever 12th promise. 

It was good. They were good. I felt like I had a lead weight tied around me neck. That I was dragging and pulling.. when all I wanted to do was lay down and let the weight crush me.

I called the funeral parlor. Cemented the date we will bury our 6 year old. Forever 6.

I don’t think I have the strength

I don’t think I can really put her in the ground.

I don’t want to ..

I don’t want this to be real..

please. please. somebody make it not real.

When it was time to go Jonathan asked to go to the beach. I was tired.. done with the day. All I wanted to do was go home and put a movie on for them. But I found a beach nearby..I turned that no into a yes.. because I said I would. Because I promised myself that right after she died.. No into yes.. and see where it takes us.

Today it took us to a windy and sunny state beach.. Today it took us to huge smiles and 3 kids running and digging and playing together.

Thankful for that for them. Because my grief was slowly consuming me throughout the day. Growing in intensity and power.. Until now.. when its so strong its insatiable.. when it feels like its eating me alive.

I wished aloud to them that I had done this more with her. Impromptu visits to the beach. I wished I hadn’t taken her future for granted. I wish I had been a better mom. So I kissed Jonathan and thanked him for the idea. And I buried his feet in the sand.. to be sure I showed him instead of just telling him.

Driving home all 3 of my living slept. I was grateful for a respite from their eyes. It took us much longer to get home than it should have.. and then I had to pee. And it got worse. But I didn’t want to wake them all up to go to a restroom with me. I figured I would be ok. .. then we hit more traffic. I had to go the bathroom worse than I ever have in my life. I was incredibly uncomfortable..

and I thought of her.. and I talked to her.  About when she was slowly dying.. losing all control over her body. Really all I could say to her was I’m sorry .. over and over again..

When she was unable to pee. But always felt like she had to. When I saw how swollen she was in her little tummy. She was so skinny.. I could see every piece of her hip bone.. but then this hard rounded place where her tummy once was .. We tried to give her a catheter .. it was horrible.

Holding her so tightly. Hearing her scream when we hadn’t heard a sound from her mouth for days. So we stopped and I took a warm bath with her. It didn’t work. How exhausted she was. .  I had no idea then how awful the pain must have been. She didn’t complain though. She just woke suddenly all through the night with the immediate urge to pee without the ability to go. We tried again the next day. .. Again more of the same.  But she didn’t quit. She lived for 10 more days.  I am glad that I got to feel fraction of what she did. To have the slightest glimpse into one of the ways she suffered.

I want to die like she did. I want at some point to feel and experience everything her little body had to go through. What a wonderful gift incontinence was then. . How happy I was when her bed was soaked.. how grateful she must have been..

oh baby girl

i’m sorry i didn’t protect you

i am sorry you suffered.

oh jennifer.

i didn’t know what the right thing was

i’m so sorry honey.

Another month passing since I held her last..

Is that ok with you? Do you miss it as much as I do?

She is only 6.. does she still need her mommy? A 6 yr old little girl should feel her mommies touch. . I always grieve for the last time I touched her..

Does she grieve it too?

…until there is a cure..