A Smiling Earth and New Traditions

Having a rough Saoirse day. This time last year I was waiting for my daughter to be cremated. I feel for all of those parents in CT.

On the 13th, the anniversary of Saoirse's death, we decided to make some new traditions. We started with waking up crying. I didn't sleep very well and neither did Kezia. All of the moments of exactly one year prior were flooding my mind and I couldn't shake them.

We decided to go put the solar lights on the dedicated tree for Saoirse at Endicott Park. We walked with Fallon, its not too far from our house. It was a beautiful day, very sunny. Its felt as if the earth was smiling. We definitely felt Saoirse's presence with us. We walked back home and I put up lights on the house. I was actually excited about doing that. For the past year, I have been dreading the holidays. Just dreading them. I was against the tree and didn't want to put the lights on the house. However, the closer to the holidays it got, the more I allowed myself to feel for the holidays and get excited for the tree and the lights. It is extremely difficult. But I decided a log time ago that I am choosing to stand up and do positive things and make something good out of a sad tragedy. Kezia's family came over that night and we decorated our tree. So overall, it was a good day. It just sent a ping of emotions through me just to say that. Its just still so raw.

Deep breath

Here are a few pictures and a video

New York City and OCC

The last think I heard Saoirse say was "Elmo". So I decide that Saoirse's Elmo will travel with us everywhere we go. She also loved Curious George. It was easier to put Curious George's shirt on Elmo. Here are some shots from our recent visit to NYC

Dreams

My dreams have been potent. I am having terrible night mares. Most nights I just don't want to go to sleep for fear of my dreams. My dreams are about Saoirse. Sometimes they are of her dying and sometimes they are about her being gone and I am frantically trying to find her because she needs her medicine. Other times I am in a dark space and I am yelling "Saoirse". Other times there is a guy in a white coat (its a doctor, the doctor who I saw sticking needles in her chest when she was being intubated). He is holding her and walking away. I try to run after them but I just can't catch up. I can see Saoirse looking back at me crying. I had that dream the other night, waking up trying to catch my breath. 

I was talking with people earlier this week about dreams. Now, sometimes I have good and enduring dreams. I have only had 2 or 3 dreams that I can remember of Saoirse where I woke up feeling good. I believe she visits me in my dreams when that happens. I believe she visits me all the time around the house and yard. I sense she is here. 

All in all, I am staying motivated and grounded. I am assured by other parents who have lost a child to cancer - actually who has lost a child, that I am not crazy. 

I miss Saoirse. I just wish I could hold her one more time. 

Deep breath. 

Summer

Summer is proving difficult. Last summer, when we were not in Childrens Hospital Boston we were trying to find fun free things to take Saoirse to. We were mostly in the Hospital, which I may add the hospital and staff did a great job helping us out while we were in there. When saoirse could, we would take her down to the grass area outside the hospital. She loved it. When we were home, we were outside and out and about. If we even mentioned that we were going outside, Saoirse would run over to her shoes and pick them up and then go to the door. She was so funny. She loved being outside and playing. She was such an explorer. We wanted to expose her to as many experiences as we could. We found free art walks (which she loved), food festivals, concerts. She loved it all. She also loved playing with all of her friends. She loved them so much.

We are finding ourselves stuck.. ?? not sure if that is the right word. When ever we go somewhere, there are reminders of Saoirse. We find ourselves wishing that Saoirse was with us and we are often saying to each other "Saoirse would have loved this". Kezia has been having a difficult time too.

Its just not fair. She deserved to have a life. She seemed to make the best of her life, and in a way, she had a full life.

Sometimes Kezia and I will get up and not do a thing. Its just to hard. The closer it gets to December, the harder it gets and the more I want time to slow down or stop. But it never fails. The weeks are flying by. If it is 6am, its like the blink of an eye it is 6pm.

I have been avoiding watching videos of her. I feel guilty about that sometimes, but its just so difficult sometimes. I hear her voice every day. I see her face every day in my minds eye. When I just don't feel like doing anything, I picture her coming and grabbing my hand and saying "lets go". She motivates me and I hope that never goes away.

We went canoeing the other day. The last time we went, we took Saoirse. She loved it. She loved being on the water and was fascinated by the fact she was in a boat on the water. It was such a pleasure to see her experience life. It was difficult to go, because I kept thinking about her. I kept wishing she was with us. I forced myself to go though, because to be honest, she would have not approved if I didn't go. :)

I had to face that head on and it was wonderful. Sure, I missed her and had a lot of visions from when we went last year. I wished she was there. She was in spirit.

Again.. my daughter has enforced a valuable lesson - When you feel like giving up or not doing something, just go do it. It feels better and life is more full.

Saoirse was such a wonderful little person. And I miss her so much.

Ebb and Flow

All I have to say today is that I miss Saoirse. It comes in heavy waves sometimes. I have cried frequently over the past couple of days because I just can't get the day of her death out of my mind. That day comes in waves too. I miss he so much. Kezia is having a difficult time too. People who have lost their child to Neuroblastoma, or any other childhood cancer,  have told me this is normal. The ebb and flow of the emotions and thoughts. I just wish I could have held her and comforted her when she was dying. What did she see? Was she thinking about anything? Was she in any pain? No-one has these answers.

Yesterday I walked out into the back yard and noticed that her outdoor toys had grass all over them from when I cut the grass. For a split second I thought "I better hose those off so Saoirse can play on them". Then the brick wall hit me. These little moments, yet large hit me all of the time. They come so fast that it just hits me in the heart. This I am told is "normal" too.

Saoirse was so awesome.

Fathers Day

Its Fathers day weekend.

Deep Breath.

It took every bit of energy and positive self talk motivation to get myself out of bed for the past few days.

Today was worse. I just didn't want to get out of bed. I wanted to stay asleep.


I miss Saoirse so much.


Deep Breath.