Thursday, March 22, 2012

I haven't posted in a while. Truth is, I have not felt very motivated to write. My life is still very surreal. The past week has been a down moment for me. I have avoided the videos I am making of Saoirse as well as a video I need to put together for our products for our business. The feelings are very tense and I just miss Saoirse so bad. I have clearly been avoiding my feelings. Sometimes I feel that if I move forward, I am leaving her behind. I am also having strong sensations that she is somewhere out there. I still feel as If we are leaving her behind when we leave in the car. When I see something on the floor I still think as I am bending over to pick it up "better pick that up so Saoirse doesn't get it". I have not been sleeping well lately either. Weird dreams but can't describe them.  This all comes and goes.

I miss being a dad. Maybe I fear that if I move on that I will loose that "dad" feeling. I don't know. Today after Kezia went to dance class, I finished planting lettuce and then came in the house to wash my hands. While drying my hands I just stood in the kitchen and I felt the deep quiet. I just felt that I was all alone. It was so quiet I just started crying. I went upstairs to Saoirse's room and sat in the rocker and just cried. I cried hard and loud. It was building up. I have had many moments in the past few days where I just felt full. I knew I needed to cry and let it out. I saw her in her crib, on the changing table.. playing in her room. Then I noticed the little finger prints all over the windows. She loved playing in her room and looking out the window. I never want those windows washed.

We see a lot of people out walking with strollers. I see it in Kezia's eyes that she hurts when she sees this. I haven't been there enough for her. I can and will do better.

Here is a short video I put together of Saoirse reading. Kezia shot it one day as Saoirse was reading her a book and telling a wonderful story. She loved reading and being read to. You can tell that she is so passionate about the story she is reading. Her mind was so strong and imaginative.

Wednesday, March 14, 2012

Morning joy

Its been a few days since I posted. We have been focused on getting the business started and starting the fund. Researching and writing is the most time consuming. It will all be ready soon.
I have also had a rough past few days. I really miss Saoirse. I had a dream last night that I woke up to a crying baby. For a split second I thought "she is still alive, it was all a dream". Then the reality set in. This all happens pretty quick. I still have a hard time in the morning. I loved getting up and feeding her in the morning. She was so fun. Eating was the first and foremost thing on her mind in the morning.. thats all she wanted... her milk :) hehe.. I was able to capture one of the first times Saoirse fed herself out of a bottle. :)

Sunday, March 4, 2012

Remembering Saoirse's comforts

In between folding up cardboard and bundling it for recycle tomorrow, taking the garbage out, washing dishes, reading compost garden websites, andwriting the webpages for our new website (will be published soon). I am using today as a relaxing day.. sorta.. lol.

The past few days I have been off and on.. Last week we found out that Saoirse's autopsy is completed and  her oncology doctors want to meet with us to go over the report. This means we also have to go to the Jimmy Fund. This is going to be very emotional.. but we will be strong, cry and move forward. So I guess I have been a bit emotional and a bit wanting to avoid my feelings.. Today it dawned on me that Kezia and I have to face this and do our best to support each other. I am back on track now and will write more about this as the meeting gets closer.. This week

Deep breath..

When we took Saoirse to the Jimmy Fund for treatment or clinic we did the best we could to find fun things for her to do in between labs, during chemo treatments and / or transfusions.. It was pretty challenging sometimes and the Childlife Specialists and volunteers are wonderful in creating new projects for the kids.. Saoirse loved drawing, painting, playing with the toys, watching the fish and sliding on the slide over and over (when she felt well enough).. The 1 thing she had to do after checking in was to hug the large stuffed bear sitting on the boat in the play room. She loved that bear.. It made her feel real good..

New video coming soon of Saoirse reading a book.. :)

Friday, March 2, 2012

Her eyes told it all.

Short and sweet today.. Its been a rough past couple of days but we are keeping busy outlining and
re-orginizaing our fund, taking steps to incorporate it and then filling out the paperwork for our 501 (c)(3) status. We have asked 2 wonderful people to be board members which we will announce soon.. We are very excited about our adventures.

Another bit of good news is that we found another manufacturer for our products. Finding a sewing manufacturer is not an easy task in New England.. Ug.. We are also pretty much all converted over to Organic Foods. You can read more on Kezia's new blog

Anyway.. I miss my daughter deeply .. my pain is deep today. It gets better, then it gets worse. Normal I am told. I am moving forward though and we have some great new money raising campaigns coming up soon to raise money for clinical trials, research and a better quality of life for children, parents and caregivers of children with Neuroblastoma.. Our goal is a cure. .. More details soon..

For those who read my blog.. I want to thank you all for reading, commenting and sending your encouragement and love. You are all wonderful and it means a lot to me when I get feedback. This is a great healthy release for me and it really helps..

In closing.. I want to leave you with something to think about..

What do you think she was thinking about?  When I took this picture she was just staring out into space..

Thursday, March 1, 2012

Sleep when you can.

Just a short post today. Putting together the videos and working on some print / web ads for our website and Neuroblastoma awareness has had an emotional toll on me. It did help in ridding of some bad images and replacing them with great images of Saoirse. It felt good to see her in video and photos and felt good to have all the great memories flood my mind.  It also brought up a whole bunch of emotions for me. I miss her deeply. I rarely left her side and I have no regrets for that. I felt it was important for both of us to be in her life during her high dose chemo and treatment in general. I knew the prognosis and wanted to spend every moment I could with her.

Right now we are putting all of the information together for our new website as well as converting our Fund into a 501 non profit. Some other things we are doing is researching clinical trials for Less toxic and non toxic treatments for Neuroblastoma and Relapsed Neuroblastoma. In the Links section there are some sites of organizations we really like and they are doing some great work. We are also putting together a list of questions parents have the right to ask their doctor (s). There were definitely some gaps in her treatments, gaps in information we received and information we wish was offered to us when Saoirse was diagnosed as well as throughout her treatments. There is much more we are putting together, its just so time consuming especially when we are working on structuring our business. More to come on that soon. We just want to make sure we are spot on.

I miss my daughter.

I have got to do something to blow the lack of Childhood Cancer Awareness and Funding out of the water. Somethin is a brewin.. Stay tuned..

The following photo was taken in the Jimmy Fund in Boston, MA. Saoirse was in for a transfusion and she was so tired and didn't feel well. If I recall she didn't sleep much the night before.. She was so strong and courageous. I will be putting together another video in the series of "she loved" today or tomorrow. I want to share some playtime with Fallon.. One of the worlds most patient and tolerant Boxers.. She loved Fallon so much.