Tuesday, February 28, 2012

Dance Freedom. Dance Saoirse.

I have been feeling better emotionally. I think it has a lot to do with the videos I have been making. I have been looking through a lot of videos and they make me smile, cry and laugh... My series of "she loved" has been making a difference in my life and helping me remember all the good things.. this is reminding me just how much I learned from Saoirse. Although I am feeling better, I have my moments. The videos are also stirring up some anger. I am angry she was taken from us. I am angry there isn't much being done in the Neuroblastoma world because of lack of funding and support. I am just angry.

I miss my daughter

Deep breath...

Saoirse always seemed to find ways to help her feel better and to just enjoy life. We learned early on that Saoirse loved to dance to music. She had a very distinctive dance. I remember watching her eyes when she danced.. they were full of joy, freedom, amazement and I could just tell that she felt good. She was free of what ever ailed her at the time. In the following clip, she had just endured almost a week of Chemotherapy, yet she didn't let it get her down. Saoirse would seek out to find her musical walker.. she loved that thing.. she played with it all of the time.. The video serves a couple of purposes.. We want to share her spirit with others. We want to spread awareness of Neuroblastoma and much needed assistance to protocols and studies.  If this video isn't working on your phones or iPads try watching it on youtube at this link: http://youtu.be/6LcNiBYz4SI

video

Monday, February 27, 2012

Facial expressions are priceless and amazing

Saoirse loved learning and loved being amazed at the simplest things. I really enjoyed introducing new things to her because she throughly enjoyed learning. In the following video we had just gotten home from the hospital. I think she was in for either low salt or low potassium. She was pretty cranky mostly because she was tired and needed to sleep through the night with out getting woken up. The other part of it is she just didn't really feel well. We were trying to give her a snack and I was thinking of ways to make her feel better and smile. Ill let the video speak for itself. She really loved being amused and loved showing off how amused she was..




video

Sunday, February 26, 2012

Refreshing to be outside.. Saoirse's Joy

She loved playing outside. She always became excited when she heard we were going outside to play. When she started walking, if Kezia or I asked her if she wanted to go outside to play, she would shake her head yes, then proceed to find her shoes. She was so funny. I remember one day we were outside and after she was finished swinging (she had to swing first. She would rarely play with anything else until she had fun swinging), she wanted to climb her slide house. She walked right over to it and started climbing the stairs all by herself... she truly enjoyed doing things on her own. You could see it in her eyes the amazement, satisfaction, joy and proudness she felt.
We had just returned home a couple of days prior. We felt it was important to get her outside playing and keeping her active during her chemo treatments.  Chemo can really stunt growth functions and puts a tremendous strain on your body.. Particularly a child's body. We wanted to help her stay strong and grow physically because this helps the body heal and assists in keeping the immune system strong as well as boosts self esteem. A positive emotional state is important and we tried hard to keep her growing physically, emotionally and mentally as normal as possible. I am still and always will be amazed at how strong she was during her Neuroblastoma Chemo treatments. Childhood cancer is just not fair. Adult cancers are just not fair. I will still worry for the next 4 years. Kezia won't be considered cured until she is in remission for 5 years.

Now, the video below is shorter and I am trying to find more video of her playing on her climbing toys.. After I stopped videoing this scene, she played on this for about an hour. She would climb the ladder and then stand on the top platform for a while. We would play picky boo for a while, then she would turn the wheel attached to it for a while pretending to drive a car. Then she wanted to slide, so she walked over to the slide and I would help her slide down. It was so much fun.. tiring but fun :). She would do this over and over, loving every minute of it.

Deep breath..


video

Friday, February 24, 2012

An idea I got from a group in the background of the Today Show today

I saw something on The Today Show this morning that I want to do. There were about 30 people who had small posters of pictures of children who are suffering from a disease. I didn't hear exactly what it was, but later after the Today Show has video available on the website I will edit this with the kind of disease it is. The talent didn't really speak clearly regarding the name of it.. or I just couldn't hear very well.. sorry.

I thought to myself.. "why don't parents, friends, supporters, grandparents and family members of children with Neuroblastoma go down there one day and do this"? "better yet, why not do this for like 2 days in a row to really get some attention to Neuroblastoma?" Financially 1 day is more feasible. This would bring a lot of attention to Neuroblastoma and childhood cancer in general.  I am a parent of a child who had Neuroblastoma and I should be doing this. New York is only 6 hours away from me and I am sure I could recruit people do do this with me. This is actually something I mentioned either in a past blog asked Kezia to post it on Facebook last month.. This is a great idea and I want to do it. It has also been suggested to find a few more local places to do this.. Great idea and I will search.. You are all awesome.

This is what we would need.

1. A cheap, or better yet Free place to stay for those who go from outside NYC
2. Photos printed 11x17 (or similar to that size)
3. Poster board
4. Parents, friends, supporters, family members, grandparents who want to attend. (we would have to get there super early to get prime spots) If someone can't attend due to finances, work, treatments, etc then we can find someone to hold the photo of the child.
5. A date set to do this
6. A set meeting place the morning (s) we do this
7. A mission. A spokesperson has to carry a sign mentioning a fund we will support (which has to be decided before we go)

Thoughts from people who read my blog?

Thursday, February 23, 2012

She loved her hair. She loved. She is loved.

I barely remember my 1st haircut. Only by looking at a picture of my Papaw cutting my hair in his barber shop when I was around 2 triggers the hot day in the depths of Mississippi we were there and of me drinking a warm coke out of the cooler. I may have cried.. just not sure about that. I have always dreamt of the day I would take my child for her/his 1st hair cut.

In a way that dream came true.  But it wasn't a dream. It was a nightmare.

Saoirse loved her hair. She loved our hair. She loved pulling our hair.. haha. She had thin, soft and long reddish / blond hair that was silky to the touch. When she started chemotherapy her hair started to fall out in clumps. At night it would fall out and tickle her to the point it was waking her up.. It was falling out during the day and getting into her eyes and bothering her. So we made a call to our friend Melanie who is a wonderful stylist at Shag Salon in Boston. She is awesome.

This is how I wished the conversation went:

"Hi Melanie, Saoirse is ready for her 1st hair cut, its getting kinda long and just a trim would be great and we would love for you to be the one who does this. Do you have an appointment this week so we can bring her down to your Salon? we will bring cookies :)".

Instead this is how the conversation went:

"Hi Melanie, we need to have Saoirse's head shaved because the Chemo is causing it to fall out, we would love for you to be the one who does this. We don't have time to bake cookies right now, sorry. Would you be available to come down to the hospital this week?"


Deep breath.

Saoirse actually didn't mind having her hair shaved. She seemed to like the way her head felt afterwards. Like thistles. Soft thistles. I shaved my head a week later and the first thing she did was feel my scalp to see if it felt like hers.. she smiled when it did. She eventually lost all of her hair until she had a smooth scalp. She loved seeing other people with no hair. I think it was a connection she could make. A feeling between little kids who are going through chemo that no one else could possibly understand. That is my belief. I saw their eyes and expressions when they all looked at each other.


Below is the short video of her 1st haircut.

video

Wednesday, February 22, 2012

She loved swinging

Saoirse loved to swing in her swing. From the very first time we put her in there and started her a swinging, she just smiled, laughed and wanted more. She laughed so hard, she could barely stand it. No matter how she felt, well.. let me re do that.. if she had just finished chemo we had to wait a few days before we put her in the swing. If I brought her outside, she instantly pointed to the swing because she wanted to swing. When she started walking, the swing was the first thing she wanted to walk to. I think swinging made her feel free. Normal and light. She loved the breeze as she went back and fourth. I always raised the swing high so she would swing high. I miss that smile. That laugh. Here, watch one of the first times she was in a swing.. it may actually be the first time she was in a swing..

video

Tuesday, February 21, 2012

She loves, She continues to live.

I am going to try something new on my posts. I am going to highlight old post titled "she loves" and I am going to take each thing she loved and write a story about it. Each day a new story. I am doing this for a couple of different reasons. I need to really focus on good memories. The most prominent images I have right now are pretty traumatic of her last hour alive. I am finding that day and that moment and images hard to shake. I think it is keeping a part of me from moving forward. I also think its important to tell these stories to help bring awareness to Neuroblastoma as well as how it effects families, but most of all how it effects children. Most people just do not know because they look away and/or force themselves not to think about it. I believe this is one of the main reasons there is little awareness and funding for childhood cancer. Its difficult enough to see an adult fighting cancer (been there, my wife battled cancer at the same time as our daughter), but seeing a child fight cancer is almost unbearable.

I know I keep writing about this subject, but what else can it be? Is it because the general population of the world just doesn't care about children who are fighting cancer? No.. I don't think so. I think its more about emotions. A good way to avoid the emotions of seeing a child fighting cancer is to look away and think, "people are doing something about it, there are organizations who are helping". Well, this is correct. Unfortunately most of the large corporate "non-profit" organizations use children to advertise to get donations, however give very little to help childhood cancer. (we have done the research and know the reality and if you have read my blog for a while you know who they are). There are some great organizations that do raise money strictly for childhood cancer research and family assistance. They give all of the money to critical clinical trials, research and program funding and take extremely low salaries and in some cases no salaries.  Unfortunately the larger organizations overshadow this assistance by taking the money raised and giving most of it to adult cancer research or large paychecks. Yes it happens.

In my opinion, the only way this is going to change is to tap social media, conventional media, partnering with existing organizations and be persistent, consistent and to refuse to back down. We all have to stand up and just do it. Children and families can not wait any longer. I do this for Saoirse. I do this for my family. Most importantly I do this for all the children and families who have suffered, currently suffering and who will suffer from childhood cancers. I do this because there is no reason not to. There is no reason that we can not start a grass roots movement to bring an every day awareness to childhood cancer. (runs, walks, dance-a-thons, dads and moms getting together and walking across the US to go see Ellen :), art shows, media appearances, etc.. ) I have a ton of ideas. Most of which wonderful people are doing all over the country and world with their own organizations. This will bring more awareness, more funding and eventually bring a cure. Blowing this out of the water has to start somewhere. Why not here? We have a lot of great supporters and a lot of great people who are working hard to help. Thank you.

Now, tomorrow or maybe tonight I will start my stories of Saoirse of all the things she loved. I have plenty. :)

Please just take a moment and follow my blog as well as share it with others. Lets get it started. :)

www.myfamilyhascancerx2.blogspot.com

Monday, February 20, 2012

Waking up.

I slept in today. I feel exhausted lately and felt I needed to just sleep. Kezia got up early. When I woke up for just a split second as I lay there, I listened for Saoirse playing downstairs. Then it "hit me".

Deep breath.

So as I lay there this morning I just thought of the days when I would sleep in (this didn't happen often :)) and then wake up and hear her laughing, talking, playing and tormenting Fallon. :) I would just lay there and smile, listening to her. Listening to Kezia talking to Saoirse and Saoirse taking to Kezia in her own way,  or laughing. Listening to the thumps of her little feet running around the house. She loved running around the house. Then I would hear the gate at the bottom of the stairs rattle. That was my cue to get up. That was Saoirse looking for daddy. Of course I worried that the gate was open and she would come up the stairs alone.. (she loved climbing the stairs when she could). I was excited to get up. I couldn't wait to see her and go downstairs. I would  open my bedroom door and look downstairs and she would see me and start laughing and talking to me in her own way. Then she would start rattling the gate. My cue to come downstairs. I couldn't wait to get downstairs. I loved playing with her. She was so much fun. The closer I got to her down the stairs, the more excited she became. I can't tell you how good that feeling is to have your child so excited to see you.

Deep breath.. Good feelings and thoughts.

I haven't been in her room since we returned. This morning was the morning. I felt drawn to her room after the good memories I had when I woke up. I went in and just started crying. Her shoes laid out on the floor next to her changing table. All of her stuffed animals in her crib. Packed bins of her clothes next to her closet. I sat in the rocking chair and just thought of all the moments I would rock her to sleep. Sometimes all night because she couldn't sleep. I started to hum the song I would hum to her every night. I still do actually. I know she feels it. She hears it. She senses it. I thought of when she was really small and just started to sleep in the crib. Then when she learned to stand up in the crib and I had to lower the mattress. As I sat there this morning I imagined me rocking her. I felt her sink into my chest. I felt the warmth of her breath. I felt the tiny patter of her heart against my chest. I smelt the smell of her baby breath and just her baby smell all together. I felt her fall asleep. I miss that. I miss her.

Deep breath. Deep breath Deep breath.

I miss my daughter.

Deep breath.

Sunday, February 19, 2012

Change in diet and lifestyle. Thank you Saoirse.. I love you..

Just a quick post. It is Sunday and I am going to get the materials to build a Cold Frame Hoop house so I can start lettuces, carrots and get my bedding plants started. While we may still have some snow and nights that have freezing temps, this won't effect the cold frame. We didn't have a hard freeze this winter (odd in Massachusetts and a good part of New England) so my garden soil is soft, not frozen. so i figure "why not?". .. I just need to find a tiller.. Not a lot for sale in the area on craigslist. We are switching over to a whole foods diet and organic. That stuff is expensive, but we are finding ways to make it affordable. One of the ways is to grow our own root veggies, lettuces, kale, peppers, etc.. I have complete control of it. Through the summer I will gather supplies to build a hot house so I can grow all year round. I have the land to do this and no restrictions.  This will also enable me to grow more variety through out the year such as peppers, tomatoes, spices, and a wide range of winter lettuces and root veggies. (you can also grow your own veggies in buckets with grow lamps in the house through out the winter. Just a quick search online will produce a lot of good information on how to do this if you don't have the garden space. The other way is to join a co-op (info listed below in Kezia's post) as well as buying from local organic farms.  One of our Facebook followers also sent us a site called http://www.organicvalley.coop/ that has a lot of good information on it, including coupons. Yes coupons for organic food. :)

What I am finding since we started buying organic is the money spent on organic seems to be balancing itself out because we only buy the essentials. No junk food. No dairy. No waist. Also, not buying meat at this time also helps save. This includes red meat, chicken and turkey. The meat that is sold in stores is so full of antibiotics and chemicals. Also, cows raised for mass production are fed grain and kept in bins with very little time in the pasture.. this goes for dairy and cows for beef. Cows are not meant to eat grain or stay cooped up in a barn stall with no room to move.  They are meant to eat hay and grass.. Yes, buying mass production beef or chicken is cheaper than buying grass fed beef  or free range chickens in stores but when you either eliminate eating beef & chicken, or cut down drastically the amount you eat, you actually end up spending less to eat farm raised grass fed beef and free range chicken. This also goes for turkey and pork.  (you can buy it at the local farm much cheaper or join a co-op where the prices are reasonable) I found a site that lists a lot of local farms http://www.eatwild.com/products/massachusetts.html

We are not doing this because we think animals are cute.. it really has nothing to do with it at all. The conventionally grown vegetables and fruits are sprayed with pesticides that have chemicals in them and most apples and fruits are painted to make them look prettier and more appetizing.  Cattle are given antibiotics and the grain they eat has chemicals in it. I can keep my garden organic with organic sprays and plants that discourage bugs. This is about the health benefits of a whole foods diet. Its not about a "fad" or jumping on a band wagon. Its about getting healthy and doing things to prevent cancer and doing things to prevent heart disease and to prevent as much as we can from putting genetically modified chemicals and products into our body. Once the 3 weeks of the initial diet is up, I will occasionally eat farm eggs and bacon.. But only occasionally.

We have been doing our research. A lot of it. Below is Kezia's post yesterday on her blog www.newmomnewcancer.blogspot.com

Please read it and share it with your friends and family.


"Vegan is NOT a four letter word

So, in an effort to change our lives for the good, and improve our health, we have been reading and researching about how our diets in this country affect our overall health. After lots of research, and too much time spent on the internet, we have decided to make some major changes in our home and our lives. 


Change #1:
NO MORE CHEMICALS! We got rid of all of our traditional household cleaners, pesticides, and personal products. We will be replacing them with all natural oil soaps, and cleaners made from basic ingredients like vinegar, salt, lemon, and backing soda. 


Change #2:
ALL ORGANIC! Pesticides have a very strong link with Neuroblastoma in particular. They can also carry compounds that can have a profound impact on overall health. Avoiding them (and GM products) as much as we can is our goal here. 


Change #3:
WHOLE FOOD/PLANT BASED EATING! For a very full description on this concept, and the science behind it, see the documentary "Forks Over Knives."(ps: it's now on Netflix!) We are trying to prevent cancer in particular, but the benefit of having healthier hearts, and better overall health makes this lifestyle worth the little bit of extra effort at the grocery store. 


Change #4: 
EAT LOCAL! This one will take a little time for us to adopt. We have signed up for a CSA this year through the Farm Direct Coop. We are very excited to get some amazing local, organic produce over the majority of the year. We will be growing our own garden too, and will be putting a lot of effort into gathering enough produce over the season to hopefully can and freeze for the winter months. I think the most difficult thing to track down will be local beans and nuts, but we will be looking into that over the coming months, and hopefully work something out. We are still loving our local, organic produce being delivered to us each week by The Fruit Guys, and it's so great to know we have that to rely on. 


Some major life changes, but all for the better. It will be tough at first, but so far we are determined to make important changes like this to help our family grow strong and healthy in the future! "

Saturday, February 18, 2012

Deep breath. I miss my daughter.

I have been thinking of Saoirse a lot. Actually its pretty much a constant thing. As I walk around our house I find myself really missing all the things that made Saoirse happy. I miss the toys spread out all over the house. She loved playing with her toys. I miss the tv playing her shows. She loved watching and dancing. I miss just watching her walk around the house, talking to herself and just enjoying life. I miss hearing her voice in the other room. I miss hearing her laugh. She had such a deep, cute fun laugh. I miss getting on the floor and crawling around with her. When she saw me get on all 4s, she immediately came over, laughing, smiling and then would proceed to try to jump on top of me.. Kezia would sometimes put Saoirse on my back and hold her while I pretended to be a horse and walk around the house. She loved that. I miss her hiding behind the recliner in the living room and peaking around the corner to see if I saw her. She loved playing hide and seek. I miss her playing with her musical walker. She knew how to make the music play she loved. Then she would just stand there and dance. I miss her dancing. I miss her playing with her horse magnets on the refrigerator. She loved those things. They are still as they were the last time she played with them. I miss her showing off her shoes. She loved her shoes. She was so proud of them. I miss holding her. I miss her trying to get the hat off of my head. I miss her picking at my nose. I miss her sticking her fingers in my mouth and feeling my teeth. I miss the look on her face when I asked her if she liked squash. I miss feeding her and I miss the sound her mouth made when she ate. I miss watching her try to feed herself with a spoon. She mastered this about a week before she passed. She was so proud of herself. I was so proud of her. I told her I loved her all the time. I still tell her I love her. All of the time.

Deep Breath

I miss watching her learn. She was so amazed at the smallest things.

I miss my daughter. Its a deep miss that really can not be explained.

Deep breath.

Friday, February 17, 2012

Deep breath

This has been an interesting day. We are home after a long reboot. Well.. I am not sure I am going to refer to it as a "reboot". I will write about this later. We came home. At first I did not want to go. I really didn't. As a matter of fact I wanted to go home strait away and periodically through out. I just felt like I didn't deserve to go anywhere. I didn't deserve to have any fun. While I tried my best to enjoy the things we did, it was very difficult. I did manage though. Only after Kezia expressed her feelings to me that she was concerned I wasn't having a good time. She pointed out that she was effected by knowing I wasn't having a good time. The reality was that I had shut down. The feelings of loosing my daughter were / are so unbearable, so unexplainable that it became overwhelming. I was neglecting my own self and neglecting to see how Kezia was. After that talk i made a point to have a good time.. it was off and on, but I did start to smell the fresh air, pay attention to my partner and to know that Saoirse would have really had a great time. I also really started to realize just how much we really needed that trip. More on that later.

Kezia has a scan tomorrow. She has already had 3 clear scans and excellent blood work. I will feel better tomorrow after the scan is done, and I will definitely feel better when we meet with her oncologist and she tells us that Kezia has another clear scan. This isn't over for our family. Kezia is in remission. We have to wait 5 years to be considered cured. I can't wait for this all to be over. My stress and worry didn't end when Saoirse passed away.

We are simplifying our lives and going completely organic. We are finding ways to make it affordable and workable. This means buying less food.. especially junk food. This also means growing more of our own food such as veggies and fruits. I am currently looking for a materials list for a hot house so I can start planting strait away as well as grow lettuces, carrots, tomatoes and herbs through out the year.

The other thing we did was through away all cleaning products and soaps. There are organic alternatives out there as well. No more pesticides either..

This is enough for now. I am going to post this and then write another blog post.. This was yesterdays but I was so tired by 8pm that I just went to bed..

Tuesday, February 14, 2012

valentines day is for everyone

Dearest Saoirse,

I love you, I miss you and I am glad to be your father. You are such a wonderful soul and I have learned so much from you. I wish you a sweet valentines day and you will always be in my heart, my mind and my soul.

I love you

Daddy

Sunday, February 12, 2012

"that day"

Kezia said it very well last night. It's like Saoirse is following her around. I feel the same way. 

I feel like I am stuck on "that day". Actually I am pretty much stuck on that day. It's pretty much all I think about. I try to be happy and I try to have fun but it's difficult. I watched my daughter die. I heard her moan right before. I listened to her heart fight. I listened to the doctors perform CPR. I watched her little head bounce up and down as they performed CPR on her. I made the call to stop. I made the call. I made the call. I am stuck.

I made the call.
I miss my daughter

Deep breath

Thursday, February 9, 2012

Hit Me

Sitting at breakfast today I just kept seeing Saoirse sitting with us and enjoying her breakfast. She loved eating breakfast. Haha.. Saoirse loved eating period. But I tend to think that breakfast was her favorite. :)

One day I saw something that really touched my heart. She was in the hospital and was getting full skull radiation treatment for relapsed Neuroblastoma. She did not feel well at all. She had received a few christmas gifts from some friends in NYC. It was a barn filled with little horses. Well, one morning I was trying to get her to eat some breakfast.. little bites at a time. I lined the horses up in a row facing her. I went to mix her oatmeal and peanut butter and I turned around and she had taken her spoon and she was feeding each horse. It was sooooo cute. I just cried. I smiled and told her I loved her and said to her "feeding your horses breakfast?" and she responded by shaking her head up and down, raising her eyebrows up (Smiling eyes) and mumbled "Umhum"  and then made the sign  for "more". I miss her.

Sometimes during the day I have "hit me" moments. I was sitting eating my breakfast and I had a "hit me" moment. It suddenly "hit me" that she was not there eating with us. It "hit me" that she will never be again.

deep breath.

I miss my daughter.

Tuesday, February 7, 2012

The horses bring peace and calmness

The last few days I have allowed myself to try to have some fun and enjoy what we are doing. Its been difficult. Very difficult. Everything I do reminds me of Saoirse and I vision her with us. Saoirse loved horses. I think when she saw a horse she felt at some peace and the pain would go away even if just for a few minutes. Or seconds.

Deep breath.

I remember about 2 weeks before she was diagnosed. We took her to the Big Apple Circus in Boston. She clearly did not feel well. She slept most of the time. She had some juice and that helped her. I didn't want to take her. But I also wanted her to experience the circus. I just kept her on my chest and covered her ears during the loud times. But when the horses came on. They were white, and had long beautiful mains. They were smaller. The music playing was beautiful. She woke up and watched intently. She moved her arms and hands around as if she was conducting them. It was a great moment that night for her. It was a great moment that night for me because she enjoyed herself. I felt that she felt at peace and happy for just about 5 minutes. We have it on video and I will try to find it and post it.

I miss her. The "miss" is deep. painful. Overwhelming.

We happened upon a white horse the other day with a beautiful long white main. We got some good snaps of her and we are going to print and frame her and hang it in Saoirse's room. I think her spirit will love that.

Deep breath.

I miss my daughter.

Friday, February 3, 2012

Dada


2-2-12

Today has been challenging. Kezia and I have decided to take care of ourselves and just do things to “get away”. I cant help but feel guilty. I feel like I shouldn’t be having a good time. Or having fun. I should be crying 24/7. I know that is unrealistic though. I have a wide range of feelings. I miss her so bad. There was an 8 month old baby at the restaurant tonight.  Her mom was feeding her and while she was feeding her she was saying “dada”, “where is dada”. I just broke down. I could not stop the tears or feelings. I will never forget the first time I heard Saoirse say “dada”. It grabbed my heard and has not let go. The sound of her voice. The tonality. The definitive “dada”. You are my dad she was saying. I see you, I recognize you and I call you dada. I have waited all my life to hear my child say “dada”. I finally got to hear it. Now I only hear it in my memory.
I remember one time when Saoirse was in the hospital. Kezia was in the room with her and I had stepped out to go to the kitchen to get some milk for Saoirse. All I heard was “dada”, dada. Dada. Saoirse was screaming “dada”. I thought something was wrong. Or she just missed me.  I was called back into the room – I hadn’t made it to the kitchen yet. I had forgotten my cell phone and when I walked back into the room Saoirse was holding up my cell phone and calling  “dada”. She was concerned I forgot my phone. Can you believe that? I walked over and took my phone and kissed her and said and signed “thank you”. I told her I loved her and then went back and got the milk.

She was so smart and attentive.
I just cant believe she is gone.

Deep breath.

I have thousands of stories about her and how aware she was. I will tell them all. I have to.

Tonight as we sit by the fire I forced myself to look at pictures of her and watch some videos of her. I needed to. For my own sanity. Since she passed, I have barely been able to get the bad images of her dying our of my mind. Out of my vision. Its powerful and will probably never go away. I needed to see some great videos of her playing and laughing. It really helped. She makes me smile and always will.

My mother has not been well. She has been wearing a vest that acts as an external deliberator. Her heart is pretty weak. This past Tuesday she had surgery to install a deliberator. I worry about her. She has beat cancer a few times already and even beat congestive heart failure 5 years ago. The doctor told her she has a broken heart from Saoirse passing. This is a very real thing. Of course her diet did not help her. But the death of a grandchild has to weigh heavy on a heart. It did on mine. We will be going to Chicago soon.

Wednesday, February 1, 2012

A piece of me died when she died.

Today was a better day for me. Kezia is hopefully getting over her head cold. I feel bad for her. I hate being sick too. She has more blood work and a body scan in a few weeks. I can't wait. See, this is not over for me. Kezia is just newly in remission. I am stressed about that too. Saoirse's came back. Will Kezia's? I hope not. I don't think so actually. Its kinda rare for that cancer to come back. I worry. Thats all.

Deep breath.

As I walked around today and drove around today I just wished Saoirse was with us. She would have loved it where we were. I did have a piece of her with me though.  I kept picturing her walking and demanding to do her own thing. Hehe.. She loved exploring. She has brought a new meaning of life to me. Although there was a part of me that died when she died. I also think there has to be something that was borne in me at the same time. I am not entirely sure what that is yet. I will eventually though. I am sure.

Deep breath.

I am keeping this short for now. I will write more later. I am probably going to put the computer (internet) down for a few days and focus on my stress and reducing it. Who knows, maybe I will be in a movie. :)... I will explain this later. It will all make sense.