Re-Boot or a Re-Group. ???

Its been a rough couple of days.. no, I take that back. Its been a rough year. And even more so the past couple of months. I find myself spending a lot of time just trying to make sense of what happened. It feels like I am trying to capture something. I just do not know what. I think I know. But I am not sure. I just miss my daughter so bad. I want to hug her. I want to just hold her and rock her to sleep. I want to play with her. I miss her laugh so bad. She had such a deep, real laugh. I know that when she laughed she felt better. I use to get her to laugh a lot. Her laugh was so awesome.

I just can't believe she is gone. yea I know, I know. her spirit is here.  but the reality is, she is gone. That is the reality. I can hold her in sprit. I can not hold her in body. Ever again. This is extremely hard to comprehend. Mentally I get "she will always be with you in spirit". Emotionally, I do not. I do not want to discourage people from writing. Please do not take it that way. I will "get it" eventually I am told. I love the comments I get, and even look forward to them. 

Deep breath. 

I am also trying to make sense of this "re-boot" our life. I think that is the wrong perspective. We need to just re-group. 

I just don't get it. I am trying. I really am. And although I do a pretty god job of turing negative into positive, it is hard to do this. very hard. 

More updates soon. 

Bottles

I saw a baby being bottle fed today. I was having a pretty good day until then. Sometimes that is all it takes to bring on a depth of a gut-wrenching pain that can not be described. All of the bad images flooded my mind. It was like being hit by a bus. And then having it back up over me again. Over and over. I didn't want to bring Kezia down and we were doing something super fun. Of course she noticed and I told her i was having a bad afternoon.. thinking about Saoirse. But then I thought of the very first time Saoirse held her own bottle. I was feeding her. It was great and I was so proud of her. :) It made me smile and I started enjoying what we were doing again.

Deep breath.

We are well. We are just doing what we think we need to do to reboot our lives of sort. Its hard. I am not sure what to do sometimes. But we seem to be doing the right thing for us. More later

Ashes, Ashes, We All Fall Down - and then Dance :)

Just a quick post. Today I feel sad because Kezia and I are doing things and we wish Saoirse was with us. She is definitely in spirit as well as in ashes. Kezia made some pendants with just a sprinkle of Saoirse's ashes. (I can't believe I just used a cooking reference regarding my daughters ashes). Anyway.. We are staying strong and just trying to make sense out of all of this. Kezia made a mention in one of her last blog posts.. www.newmomnewcancer.blogspot.com about feeling like the last 18 months didn't even happen. I agree.. its as if we are in some type of time continuum.  I walk around the house and the kitchen has very little in it anymore that says "a child lives here". Unless you know where to look. Its just a weird feeling that I can't really explain. Of course it was real. very real. 

I was listening to some music today, a street performer and I instantly thought of Saoirse and pictured her dancing. She had a very particular dance. She loved to dance. She would just start shaking her body, moving and grooving to the music. Moving it and kinda rocking back and fourth. Most of you have seen video of her doing this I am sure. If not, i will try to post some over the next week or so. If she really liked the beat, she would drop everything and start dancing. No matter what, she would just dance. I miss that. 

More later.. deep breath.

A change in behavior can bring great things.

I decided last Saturday that I was not going to pick up my computer over the weekend, and I didn't. My blood pressure was up, My heart was pounding so hard it was shaking my body. I couldn't sleep because of it. I was worried so I went to my cardiologist just to get checked out (all checked out fine.. doctors orders were to relax, get a massage and do relaxation exercise).

I was so focused on that ACS comment and all the off the wall comments from others that i allowed myself to get incredibly stressed out. I was so angry. I was so focuses on things I could not control. But anger wasn't going to help. It can help motivate, but only if no one gets hurt. We were teaching Saoirse to look at all sides of a situation and do research. We were not teaching Saoirse to stay stressed out. We incorporated a lot of relaxation exercises with her such as quiet time at night when we would just read books. I miss that. She always went for the big red Curious George book. It was one of her favorites. We sang a lot, and we danced a lot. We gave her soothing warm baths before bed to help her relax. It helped us too. It was important to us to keep her comfortable. We hugged her all the time. She loved hugging. She would hug you and she would say "awwww". I miss that. It was a challenge keeping her comfortable sometimes, but we succeeded.

Good Memories.

I am so deeply sad, hurt and stunned that it was so easy to just latch onto something in a negative way. it was to much .. I was allowing my frustrations to really get me. I felt like i was no longer grieving my daughter, but trying to find things to focus on where I could get angry, avoid my sadness and it really took its toll on my body and my mind. The reality is I am incredibly sad and lost.

I also thought I got away from the focus of my blog.. a grieving father .. in hopes of helping me process through writing, connecting with other grieving fathers and mothers, and spreading awareness of Neuroblastoma.

The moment I made the decision to leave my computer alone this past weekend I felt better. I found myself more relaxed and more in touch with my emotions. My entire body and mind felt better. Kezia has her own stress and grieving to go through and she doesn't need me stressing myself out needlessly. We are re-booting our lives and its not easy or quick. It is something that can not be forced. Every day we blame ourselves for something in the past; weather its about a treatment for Saoirse, "Maybe we should have done this differently", or "that instead".. "I wish we had stayed in New York". But we find that if we talk about it and start facing little things and dealing with it, it gets easier and grow a little bit. For instance, on Sunday we packed up all of the large toys in the living room. We put them in storage. It was sad and heartbreaking.. but it was also good because we got to think of all the good times these toys brought Saoirse. She loved all of her toys. It seemed she loved them equally. She was so fun to play with. I have some funny stories, which I will save for tomorrow, and the next day and the day after that. Actually I have a funny story about Kezia's sunglasses and Saoirse's toys.

All in all we are doing ok. I have my down days and up days. Most of the time my days are filled with ups and downs. I am more motivated to work on our business plan for the business. Today we went and met with a manufacturer so we can get a quote for the products to be made. Then I can finish the budget.

More on that later. Right now I need to go...

Letter

Just in case you want to see the letter I sent to the media..

We the Childhood Cancer Community have aligned together as a result of the ACS blog by Andrew Becker. These are our points...

1. Andrew Becker should be reprimand & send him back for a refresher course in PR and make him spend some time in children's hospitals for his blog post. I really do hate to see anyone lose their job, and this seems to have been the first time he's done something like this, that I am aware of.
2. They need to open a discussion with the Childhood Cancer Community about increasing funding for Childhood Cancers.
3. They not only open a discussion, they should build and execute a plan to increase funding for pediatric cancer. We just want equality. 
4. Ads for fundraising should reflect the way they allocate funds. If 5% funding is for pediatrics, then only 5% of ads should reflect children. To do anything else is offensive and using childhood cancer victims photos and stories deceptively to get funding. There are laws about deceptive advertising, maybe they should apply to non-profits as well.
5. They need to start a program to educate family and pediatric doctors on the signs and systems of childhood cancers. So many of our kids wait for a dx because our doctors are not properly educated.

I am willing to discuss this on national TV. I do not want to bash Andrew Becker. This needs to be made into a positive situation for everyone. It can be. Please help. While I am no longer calling for his resignation, I do think he needs to do some non media volunteer work at Sloan or another pediatric cancer ward. 

Michael. Father of Saoirse Fitzgerald.. passed away of Neuroblastoma on December 13th 2011. Partner of cancer survivor Kezia Fitzgerald, in remission for 5 months from Hodgkins lymphoma.

ACS - Stress - Back to Basics. Lets do this

Ok. I have allowed the situation with the ACS stress me out to the point I am physically ill. So I need to back off a bit and get back to raising awareness in an appropriate way to Neuroblastoma.

I just want to mention 1 thing. I am no longer calling for the resignation of Andrew Becker. I am calling for him to do volunteer work at his local children's pediatric cancer ward. He must have good qualities - I have to believe that. I am also someone who can make a difference. and will. I saw the entire situation kinda get out of control. We were all very and deeply hurt by what he wrote in his blog. But we can use that hurt to do something very good for childhood cancer. It brought a lot of attention to a lot of situations. How the ACS allocates its funds.. how little awareness there really is out there about childhood cancer... How many families truly need help that are battling childhood cancers. Lets all regroup and make this work.

We can all make this a win win situation.

My emotions are so raw right now and I can use those for something good. Not bad. Today I cried a lot because I miss Saoirse so bad. I miss her smile. I see it in my minds eye. I miss her voice. I hear it in my minds eye. I miss her smell. I smell her in my minds eye. I miss her laugh. I hear her giggle in my minds eye.

Deep breath.

I cry when certain music comes on. I still feel like I am in a time warp. Sometimes I wake up and ask.. did it really happen?

I still wake up thinking I hear her in her room. I still make a point to pick things up off the floor so she doesn't eat it or step on it. (although she never really did that.. if Saoirse found something on the floor she was pretty good about bringing it to us. Thats what we taught her) I still make a point to be super quiet at night when I get up to pee in the middle of the night. I am not sure if that will ever go away.

After seeing some pictures of children going through treatments, I am feeling a great sense of motivation to get this business started. I wish I could put it online.. but just not prepared to do this yet. We do have an appointment with a manufacturer next tuesday. I need that quote so I can complete our business plan. I need help though. These are 2 products that will help every child and most adults. It is already a small demand and we need to get it out there. We will.

Once I made the decision to get back to my focus, which is raising awareness for Neuroblastoma.. I felt better.

I will write more later. I want to thank everyone who reads my blog. Your feedback means a lot to me and I read every comment. I wish I had time to respond to everyone. Ug.. we really need an assistant.

Headaches and stress

My stress has been insane lately and my blood pressure was up yesterday. So today will be a day of relaxation. At least I will try. I thought I got the bug Kezia had, but i didn't . I had a horrible headache yesterday and took a pain med with out any food. Bad Idea. I forgot the crackers i wanted to eat. Vomiting with dry heaves is horrible. And made my headache worse. I thought of Saoirse a lot during that. She through up a lot. She was so strong and brave. She was awesome.

anyway. I am glad that some media has picked up the story about the bald barbie. To bad they are not really highlighting the fact that the ACS is not really doing much for childhood cancer.

a photo series commercial representing childhood cancer..

So I saw an article just now, along with a photo series titled "Cancer the battle we didn't choose"

http://cnnphotos.blogs.cnn.com/2012/01/18/cancer-the-battle-we-didnt-choose/?hpt=hp_c3

Its a great series. I want to do this with Childhood Cancer. Again, seems CNN may have picked up on the story about Becker at the ACS and maybe ran a story on childhood cancer. They didn't. So I will.

I want to put together something very similar. Anyone willing to help with photos and a short story of your child disease and obstacles weather it be funding, you need money and help or chaos with trials?

I want to make something clear

While I agree that Becker should resign .. I will not back off of that. I also thing the article was completely insensitive and ignorant.  I do think that people that are angry can use this situation to bring more awareness to childhood cancer, which I believe it is already doing. There seems to be someone who things that my last post was wrong. I have a right to express my thoughts and opinions, and will continue to do so. It seems that someone thought I was threatening that guy.. which I clearly was not. I stand against something like that. But I do think Mr. Becker should visit some children's hospitals (no media) and try to figure out how childhood cancer can be eliminated. He apparently really upset a lot of people. What he wrote will had a profound effect on his organization, it can be a bad thing for them, or it can be a good thing. Their choice.

Right now we support

www.friendsofwill.com

it is exclusive to neuroblastoma. We are looking into a couple of more.

Grieving

I really let this get to me. I realized overnight that I allowed it to take me away from my grieving process and will just focus on that.

Angry and need to show people what Neuroblastoma does to children

By trade I am an art director in advertising. Although I haven't done it in years, I still have the creative touch. Well, I think this whole experience has tapped my creative juices. I need to get peoples attention to bring awareness to Neuroblastoma. Unfortunately childhood cancers get overshadowed by adult cancers. I will be working on my ad - video and print. It will be graphic and profound. It will get peoples attention. I have got to keep fighting and keep moving forward to bring more awareness to early detection, education for pediatricians and ER doctors on signs and symptoms (i.e., my post yesterday - what I didn't write about yesterday and needed to was that during those few weeks we were trying to find out what was wrong with her she saw multiple pediatricians and not one of them recognized the signs. Again, I will repeat myself here - The signs are classic and consistent. Period. I didn't need to go to medical school to know this. Maybe I should go to Med school. hum. interesting. .), and treatment for better quality of life and a CURE>  Anyway. I am going to relax today after running some errands. Kezia has a head cold and I am sure I am getting it. I will write more later. I feel better today. I am still having anxiety issues but I no longer have medicine to help with that. So now I am trying tea at night to help me relax. It is what it is.

I feel like I betrayed my daughter

I am sad today, I was yesterday too. I have been crying most of the day. I guess I am beating myself up for past decisions. I have 1 piece of advice I want to get across to everyone who reads this and it will be my #1 piece of advice for people when we speak with them.

If your child wakes up with mysterious black eyes for no apparent reason, If they start developing lumps on their heads and most importantly - if your child's eyes, either one of them, start to bulge out of their eye sockets... GET HIM or HER SCANNED !!!!!!!  DO NOT LISTEN TO OTHERS>>>> follow your gut feeling. DO NOT LET OTHER INFLUENCE YOU. Our child went through that emergency room 2 times plus the ER in beverly and no one recognized the symptoms. I am so angry.

I did not follow my gut feeling that first night we were in the emergency room when we were desperate to find out what is wrong with Saoirse. My daughters eye was bulging out of her eye socket! She was in pain! she had lumps popping up on her head every day and they kept growing. None of what the doctors were suggesting made sense. She has fallen a couple of weeks earlier and they used the excuse that she may be having a delayed reaction. BullShit. Bullshit. Bullshit. She seemed to feel better that night when the ER doc gave her ibuprofen. Her blood counts were off too.  She felt better because she was in pain and the medicine made her feel better. It was thrown in my face several times that night that i shouldn't do a scan because it could be bad for her. It was thrown in my face several times that night that if i insist on the scan that the insurance may not pay for it. I let someone else influence me with bullshit. absolute bullshit. I am so angry about that. so angry. I know it probably would not have made a difference in the outcome at that point, but she was in so much pain. I could have helped stop the pain if they had just done a scan.. I am not sure I will ever be able to let this go. I will never ever let other people influence me like that again. Ever.  I feel like I betrayed my daughter during that 1st week she started showing symptoms. Classic Neuroblastoma symptoms. There is a lot more to the story of the 3 1/2 weeks it took to figure out what was wrong with her. I will tell it, just not now. One step at a time.

I am just so angry. So angry. I have been crying for 2 days. It came out last night at dinner what was wrong. I cried in a restaurant. I was so angry. So upset. But it just came out, I had to let it out. I have to just cry. It will pass. I will make it through this.

Dispair, Helplessness and Giving up is No Option.

I remember back when Saoirse was diagnosed on May 5th of 2011. We had no money. I hadn't been able to work for the most part for the previous 3 weeks while we were fighting for Saoirse to be diagnosed. Yes fighting.. I will get into that later. She was all i could think about (her eyes were bulging out of her head and lumps kept popping up) Plus on top of that Kezia was sick and going through Chemo and I was worried about her too. I remember the next day, no the day after that I think, I went home to get some things for Kez and Saoirse. There was no gas in our car, or our other car for that matter. My CC had been declined earlier while trying to get some coffee and we only had like $5 in our checking account. The gas light had come on about half way home. We live about 25 miles from the hospital. I really didn't pay much attention to it, all i could think about during that drive was the info the multiple doctors had come in and talked to us about. I was in a panic and had a lot of fear. This cancer scared us. bad. I was completely stunned. I still am. I really didn't know how i was going to put gas in my car. I got all of the stuff together and got it in the car. How was I going to get back to my daughter and wife? I went into a small panic and felt a deep sense of despair and helplessness. My stomach was heavy. I just wanted to get back to my family. I was embarrassed to go next door, i would have though but they were not home. I thought about just risking it and taking the chance on going there and seeing if i make it. Then i remembered I have a gas can in my garage, but I knew it was low. It was. I think there must have been about half a gallon in there. Most of it spilled down the side of the car. No funnel. Go figure. Regardless I made it back. There are a lot of parents out there who were in and are in the same situation and worse. I know what it feels like.

Then when someone helps, the deep sense of relief. The impact on families is profound. Deeply profound. Our lives stopped. Again. I admire all of those out there in the same or similar situation. I send you my love and positive energy. You are not alone.  Do not give up, keep fighting. There is help out there, there could be more, but there is help. There is 1 large way that we can help.

FIND A CURE FOR NEUROBLASTOMA

Tired yet can't sleep

This has been a long day. A very long day. I do have a lot to write about but I am just so tired. I am completely emotionally drained. Yet I can't sleep. I will write more tomorrow.

Anxiety and Sadness

Through out the day my anxiety keeps progressing. I have horrible anxiety sometimes.  I am full of emotions and sometimes I just take a walk outside and cry and get some fresh air. I do projects, I read ... yet I am so bored. I want to be hanging out and playing with Saoirse. I also have a difficult time getting that morning out of my mind. Sometimes when I wake up and start my day I feel I will have a good day.. then I don't. Sometimes it starts out bad, then turns ok. I just can't believe how profound, raw and deep my feelings are running. I went out and hummed Saoirse's lullaby to her. I do this every night.

I am just in a deep sadness and I wish I could hold her just one last time. I am just trying so hard to stomp forward one foot at a time. I will.

Time feels like a warp. back and fourth.

Saturday's are still very difficult for me. When Saoirse was feeling well we always found something fun and free to do. She loved it. Either we went to the park, which meant walking around in grass, swinging and just running around and playing. We always brought Fallon. Saoirse loved walking with Fallon. If Saoirse was riding in her stroller Fallon would walk right along side of her. Saoirse loved watching Fallon. Other times we would find a free festival to attend or just a destination like Newburyport or Salem. We thought it was important to expose her to music, arts and just being around people and being social. She loved outdoor festivals and concerts. she loved the music and dancing. Or sometimes we would just stay home and go play outside. she loved running around the yard. she loved it when we would push her around the yard in her tricycle or car. she would just smile and laugh turning on the wheel as if she was driving and pointing to the direction she wanted to go :)

Deep breath.

I miss her so much. I finally ate some oatmeal and peanut butter for breakfast the other day. It was her favorite. Which brings me to the story i wanted to tell about her. Every morning we would get up and she would demand her milk. :) then after the milk she would get down off our lap and play with her toys or Fallon while she watched PBS. Curious George or Cat in the Hat, or what ever else was fun to watch. She would play while I made her Oatmeal. I would ask her "do you want some oatmeal and peanut butter?" and she would shake her head up and down, her eyes would open real wide and she would say "yes". hehe. so I would go make it while she played. Of course she would follow me into the kitchen and play with her magnetic horses and santa on the fridge. She would eat while she played on some days and others she would just sit and eat. I didn't normally eat until she was finished. at least thats what I hoped would happen. hehe. So she would finish or be "all done" with the familiar Signing of "all done". (yes we taught her how to baby sign) I would go make my oatmeal and peanut butter. I would go sit down and start eating and she would instantly stop what she was doing and come over and ask for "more". I would give her a small bite and she would go play while eating it.. then she would come over and want more. So i give her another bite and say to her "this is daddy's, you ate already". she would shake her head up and down.. all while chomping on my oatmeal .. and she would laugh. then go play. I learned real quick to eat fast :)

I miss those moments. I really looked forward to it every morning. and it didn't really mater what we had for breakfast... eggs, grits, cream of wheat, what ever it was she wanted some of mine. hehe.

Deep breath.. cry feel etc..

I finally took the photos and videos off of my phone yesterday. I just had to move them to our external hard drive. I allowed myself to watch some videos and look at pictures. She is so awesome.

My life is still very surreal. The 13th to the 13th. time is doing weird things for me. when i look back at the past 4 or so weeks it all seems so blurred. dream like. i just still can't believe she is gone. I still feel weird when we leave the house. I still think "do we have everything?", "where is the diaper bag?". (I forgot the diaper bag once when we were going to Jimmy Fund - didn't discover this until we parked in Boston - that never happened again hehe)  When I get in the car i still automatically look for Saoirse in my rear view mirror. when we drive away i still have a very strong feeling that i am leaving something behind. Realities set in in between.

Deep breath..

Kezia has food poisoning so i have been helping her and basically just doing research and watching tv. Yesterday was like a blaaaa. i didn't feel like writing. so i walked about the yard a bit, played with Fallon and finally around 10 pm last night I just broke down. I miss her so much. Kezia is feeling better today and even came downstairs. Today is just a relax day. I will probably do some things in the garage or yard. Not sure yet.

Dream, ashes, plastic bags, twist ties and frustration

Saoirse visited in one of my dreams last night. I didn't see her or hold her, but I heard her. I was walking onto our back porch and I could hear something inside the house. It was Saoirse talking and singing. It felt great to hear. I remember being excited to go inside to see her, and as I walked in my dream ended. I don't remember anything else.

I miss her so much.

Yesterday was a very surreal day.. actually it was surreal on top of surreal. Kezia and I opened Saoirse's ashes yesterday. It was like some kind of time warp time stop moment. There was my daughter, in a plastic bag with a twist tie keeping it together.
The ashes are gritty, sandy like. With little white hard pieces. The ashes are heavy and dense. it just seems so weird. For 18 months I made sure she was dressed correctly, comfortable. now she is in a plastic bag. I will find something.

deep breath.

Ok. i am done writing for now. I want to tell a story about Saoirse but I just can't right now. I am frustrated about some things and trying not to let them derail me from my grief. So one of the best ways I know how to not let that happen is to talk about my wonderful daughter. right now though I am just so emotionally overwhelmed i am going to take a break from writing and go clean the shower and give Fallon a bath.

serious business

I never got to my phone. I was scared to do it. i think i will work on moving all the video and photos tomorrow. thats a better plan. this has been a stressful day for me. Very emotional i guess. i had a great conversation with another dad who lost his son to Neuroblastoma. its been a few years for him so his prospective is what i was looking for. it helped. a lot actually. it always does. i just have felt so sad and lost today, well actually the past couple. its been 3 weeks and I can not believe it. we did manage to get some things done today. errands. bills. insurance paperwork. all done and satisfied. feels good. we do realize that things keep going and we have to keep up. I took Saoirse off our insurance yesterday. that was hard. it was something concrete.

deep breath.

my mom is doing better. she runs out of energy real fast because her heart isn't functioning up to par. i am worried about her. and my dad for that matter. she is having a defibrillator put in at the end of the month.
i am glad they got to come up and spend time with Saoirse before she passed. it was a good visit.

I did more work on refining my business plan today for the business we are starting. Its fun for me working it out and writing it. right now i am focusing on the marketing strategy. i can only go so far until i get the quote for the initial product launch, which we think we have an investor which will enable us to launch the company and draw in some more investors. but i need that quote first. working on it.  its a great product (s) that Kezia developed and i can't wait to tell everyone about them. Soon. i need to get back to work and it feels good developing this. it also feels good working on ideas for the foundation.

the 18 months of saoirse's life seems like years. its so weird that our life was so full.. busy and eventful. before Saoirse got sick it was busy taking her fun places, teaching her, watching her learn and grow and taking care of Kezia who had been sick already for 4 months. we kept pretty busy.

our life stopped abruptly. it was like poof. gone. it wasn't like when a you power down a boat fully that is going fast. it slows quickly and the back of the boat kinda sinks, the bow rises and eventually you float to a stop. this was like when you forget to untie the boat from the dock.

Saoirse taught me a lot of things. perseverance is one of the top on the list. She always found a way to make it through the tough times. she would always find something to smile at. she was so full of life. and she just kept moving forward as much as she could. No matter how much resistance i get, how difficult things can get starting the business, or dealing with some of the negative non supportive people in our lives.. i will keep moving forward. No more "what if's", no more "I wish i could do that". people choose not to take risks because of their own fears and negativity. mostly negativity because fear can be a great motivator. but there has to come a time when you have to embrace that fear and combat those negative tapes with positive reenforcement and you say "sure its scary, but i have to find a way to make it work and go for it". well, we have reached that point in our lives. 


I miss holding her. every night i go outside and hum to her. I vision myself holding her, rocking her and humming to her. my chest feels warm when i do this. it feels so good to imagine that. feeling her heart beat, feeling her breathing as i hold her. making sure she is comfortable and safe. warm. 


deep breath. 


more tomorrow. 

Individual.

I need to take all of the video and photos off of my phone today. My phone is full. I have been avoiding this for a couple of weeks. I have a hard time watching videos of Saoirse. but i feel i need to.

at night when I walk upstairs I still start off tippy toeing up because I don't want to disturb Saoirse. About half way up, sometimes a quarter way up reality sets in. It turns into a complete surreal situation. My life seems as if it is a complete surreal situation. I keep waiting for a dream to be over and I will wake up and hear Saoirse playing downstairs. But that is not going to happen. I will only hear her in my imagination and heart. I hear her voice every day. I see her smile every day. I see her "george" expression every day. I hear her laugh every day.

I am comforted when I talk with other dads who lost a child to this nasty disease Neuroblastoma. there is a bond like no other. and the only ones who know what this feels like are other dads like me. and even then it goes deeper because its just so individual. it helps though. its not the same as talking with my wife or other friends.

Kezia and I are dealing with this in our own individual ways and that is ok. we support each other very well.  We also respect each other knowing that we each have our own way of dealing and grieving. Kezia has a lot of support and spends a lot of time with her friends in the Mom's group. they are all so awesome.

i have a lot more to write about. I just feel that today I need to write. a lot. i miss her so much and want to hold her.

deep breath

Not sure about the title

The other day we were at Target to get some things. I saw an Elmo book that had hands. I immediately thought "Soairse would love that". And for just a split second i felt I could buy that book and bring it to her. I visioned her facial expression and laugh. then reality set in. then the deep sinking feeling came. all this with-in what seemed like less than a second. I loved finding fun and interactive books and toys for her. I loved her reaction. classic.


Today has been blaaaa. Lots of memories, thoughts, sadness, smiles and joy. It comes and goes. Its nice out today so i just basically walked around the back yard for a while. Just looking at Saoirse's toys out there. remembering how much she loved running around that back yard playing. she had so much fun. So even though i feel blaaa and having a rough day, i still managed to complete some things around the house. feels good.

Sometimes .. well all of the time .. i just can't imagine my life with out Saoirse. i know this is suppose to go away and things get better.. but this is how i feel right now. Monday's can be difficult because almost every monday for the past 8 months or so have been spent at the clinic. i am still in auto mode.


On a good note. Kezia had a taste for chowda last night so we went to a restaurant in Salem where they make homemade. It was quite nice dinner. we had a great conversation and great food. We have been brainstorming ideas for our fund as well as ideas for our company. we are excited because there are a lot of people on our Facebook page that will help make it viral when the time is right.. which will be soon. something big. Look out Neuroblastoma. anyway.. we were just finishing up when our waitress came up to our table and let us know that when we are all finished that we can just leave.. that our bill has been taken care of. we were surprised and a bit thrown. So if you read my blog.. thank you :)

I miss my daughter

I miss my daughter today. Badly. I am forcing myself to do things productive. I just feel so helpless and sad.

dreams and reality

I had an incredibly emotional dream last night. I was holding Saoirse and she was healthy and had some hair. I asked her if she wanted to put her head on daddy's shoulder and she did. it felt so good. I felt comforted. My dad was there and holding a new born baby. Kezia was there, I could here her talking and laughing in another part of the room. I just keep feeling her warm hug as she put her head on my shoulder. Then i saw Kezia and she smiled and then I saw the newborn again, my dad still holding. Then I started crying. then Kezia woke me up to remind me the furnace is being cleaned at 830. Reality set in quick. I felt good though. the dream was still very vivid in my mind. real like. still is actually. I think i am going to write a letter to her today.

Missing her

I have felt incredibly sad today. I really miss Saoirse. I feel like there has been a large chunk of my life ripped out of me. On an up note, we did manage to get some small projects and errands done today. That felt good. We made some good contacts in the field of providing a lower toxicity treatment to kids with neuroblastoma. More to come in the morning.

looking for a better day

I feel a bit better this morning. I had weird dreams. not like the night prior. those were bad dreams. well, dreams of the day she died. one of the reasons i has such a rough day yesterday. i cried a lot. i thought of her a lot. its ok. i also got a lot of stuff done yesterday around the house and put other projects in motion. kezia was worried about me, but i was just trying to keep busy and focused. she is awesome and i worry about her too. right now we are just trying to do things to keep from getting board. today will be a better day i hope. just taking it one bit at a time right now. more later.

last moments

I can't seem to stop thinking about Saoirse's last moments. The gasping for air, the weezing I could hear in her chest when she took breaths. She was on a Cpap machine that was assisting her breathing,  but she was doing most of it herself. She just wanted to sleep. She kept signing "sleep". it took a lot of energy for her to do this.  I am trying to catch the moment she died. did she feel pain. was she dreaming. did she feel rest. panic. ? lights? dark? I keep seeing her little body pump up and down on the bed while they were doing CPR. I wish i had not looked. there was nothing i could do to help. nothing. she just couldn't keep up anymore. she just couldn't do it. she was so tired. it kills me that I couldn't take the pain away. what was she thinking while she was in pain, struggling to breath, chest pains while i was standing there humming to her, telling her she is strong and i am sorry and telling her i love her. was she thinking "why isn't daddy making it better?". 

deep breath. 

her little body was so swollen. her feet, legs hips. when i asked her where it hurts, she pointed and grabbed at the lower right side of her body by her kidneys. she couldn't pee anymore. her pee was so saturated with salt and bi products from meds and liver breakdown from the radiation. she was so thirsty. her tears turned to salt instantly. i know she had way too much salt. i know this was a result of mis communication. her massive salt supplements should have been stopped days before. or managed better. i am blaming myself for not catching this sooner. i caught it the night before she died. her salt levels were hovering around 150ish. i am so angry. radiation doctors were telling us they believe the radiation was working. 

deep breath. i was in such agony because i could not make the pain go away. i am still in agony. 

feedback and writing

I just want people to know how much I appreciate what they write in response to my blog posts. It really helps me to read all of your feedback. When I write about feeling pressured or about grieving my way that is not meant or directed to anyone specific generally. sometimes it is. please keep the feedback going. ty

letter to my daughter

Wednesday Jan. 4 2011

Hi beautiful. I want you to know how much I love you and how much i miss you. I constantly feel you hugging me. I wish there was more i could have done to save you. 

daddy

Lost, Crying, Cleaning and Doing

I am so very sad today. My pain runs deep. I woke up crying at 8am this morning and stopped at .. well still haven't. I miss Saoirse so so much. I hear her talking, crying, laughing, eating and singing.
I need to go buy a ladder today
I need to go for a walk
I need to clean
I need to do something to help bring better quality of life and a cure for children with Neuroblastoma.
I need to just grieve my daughters death my way.. in my own time with out any pressure.  I talk to people I feel comfortable with. I write. I work. I am excited about planning and building our business. I am excited about having more children. I am excited about working on a few of my art projects. I am excited about spending time with Kezia. I am just so lost sometimes. so i keep busy. I allow myself to feel.

Kezia wrote in her blog today.. please read it.  www.newmomnewcancer.blogspot.com

memoires

I have been having a rough past few days. Kezia too. We are just so frustrated and angry. We are holding strong and doing small projects. I have a lot to write about and will do so later this afternoon or evening. This morning is reserved for paperwork and phone calls. fun. then the xmas tree needs to be takes down. this is so hard for me. i remember the evening we put it up. Saoirse had such a good night. for a couple of hours. its a great memory. Kezia is going out with her mom and sister so i am going to work on cleaning out the dining room and putting boxes in the basement and then go out to the garage and pull out the wood stove. I miss her so bad. its still like a dream, surreal. its been 3 weeks and i still have the feeling she is going to come walking around the corner. i still hear her playing in the kitchen with her music waker and fridge magnets. i miss feeding her her milk in the morning. watching george or elmo, sometimes dinosaur train or cat in the hat. then when she finished her milk she would get down on the floor and walk over and say hi to fallon. :) fallon really looked forward to this morning ritual. lol. then saoirse would go find some toys to play with, or try to remove all of the DVD's from the shelf. :) she was so funny. she would just talk talk talk. i taught her how to whistle, and apparently it only took 1 lesson. one day i noticed her walking around with her lips puckered and she was just walking around the house exploring and whistling. :) fun memories. more later.

deep breath