Colorful Lights and an anniversary

How do I prepare myself for the 1 year anniversary of my daughters death?

First of all, I have to allow myself to look forward to christmas. Meaning - decorations.
Most of the past year I have maintained I will not decorate, turn on the colorful lights on the house or put up a tree. I thought it would just be to difficult. But after much consideration, talking with Kezia about it and reading others' posts from the past I think it would be a great idea to put up a tree. Saoirse would have loved it. Plus I strongly feel her presence in the house, so I think her spirit will be sad if we don't decorate. She loved the colorful lights. I also feel that by not decorating I will be avoiding feelings that I need to embrace.

I miss her so much. Thanksgiving was tough, it was the last major "first" holiday without her. She died right before christmas last year so christmas was the first major holiday without her. But last year, right about this time of year Saoirse started getting really sick. Life was a blur for me. My entire focus was Saoirse and getting her well and dealing with strong conflicting feelings that I knew in the depths of my soul that she was dying. I don't really remember christmas last year.

Kezia and I have been talking lately about what we are going to do for the anniversary. We just don't know. Maybe let off a couple of lanterns? Go to dinner somewhere? Go somewhere special and spread some of her ashes?

See, our feelings don't go away until the 13th every month. The 13th is everyday for us.

I talk to her every day, as if I am telling her a story about our life. It is a weird thing. Its like we are sitting on the porch or yard and I am telling her about our life. Hard to explain right now.

Deep breath

I just miss her so much and wish I could hold her one more time.

Deep breath

Update on Saoirse

Hi All.  Saoirse has been very sick with a swollen liver for the past few weeks. Confirmed by an MIBG test today the neuroblastoma has attacked her liver. She was immediately planned for and started radiation to her liver this afternoon. She did not have to be sedated for the radiation or planning :) She is so swollen and sore that it must hurt to move a lot.. she gets very uncomfortable when touched or moved. Sometimes she wants to lay on her back, she either sleeps or watches tv. Most of the time she wants to lay on her stomach and knees. more her chest. It seems to relieve pressure from her liver being so swollen. This causes her organs to be squished a bit.. We have her on some good pain medication. We are hoping the radiation starts working immediately.. this will bring her some relief. She is also on medications to help release the excess fluids peeing them out. Her radiation oncologist thinks it should start working pretty fast, based on her last response to radiation to her skull, which was good. this is so stressful.. I hate seeing her in such discomfort and she wants to play, talk and have fun. it hurts me to watch this, and on top of her discomfort from a swollen liver, she is now dealing with side effects to radiation to the liver. nausea, vomiting and all kinds of internal issues such as retaining excess fluids, lack of adrenal glands and low platelets. She stays tough. She stairs at my eyes .. her eyes are scared and confused. deeply. then she focus on what ever is on tv. we are always playing her favorite shows. 

I can't imagine our life without her.

A better day

This will be a quick update. Saoirse is feeling much better today. Saoirse kept throwing up and was having some tremendous pain so the doctors were concerned about possible swelling in her brain so they ordered  another CT scan. The results were that she did not, which is good. So some medicines were changed and one dropped and low and behold we have a new kid. Saoirse started feeling better, kept her food down this afternoon and evening and even walked on her own. What a relief. I will have a more detailed update tomorrow. Thank you all for reading and following.

Wishing I could take away the pain, frustration and sickness

As I watch our daughter try to play, want to eat and wish she could go outside and play. She is only 17 months old. I feel so frustrated and sad that I can't take her pain away. She is getting better and we are hoping that today she will not throw up. Throwing up makes her feel so bad. You can just see it in her eyes that she is so tired of it and that she feels so bad. Her eyes are very verbal.

This picture was taken several weeks ago during a 2 week hospital stay for surgery and chemo..

I have been working on putting photos together that show a progression. I am starting from her infant photos on. I know this seems boring right now, but sometimes it is just hard to write. :(