Ok. I am sure there are not many people reading my blog anymore - thats ok because I haven't published my writing much. I do write, just don't publish much.
I need to publish this though. I saw how there is state police in another state selling t-shirts and raising money for the boston one fund. I get that the families need help. Seems there will be and is plenty of help.
What gets me is there were a lot of stars who showed up for special concerts to raise money, extra media coverage and people keep pouring money into the fund.
While I have understanding and sympathy for the families who lost family members and who were hurt with life altering injuries, I get frustrated because all of the pediatric cancers are getting whitewashed again. I watched my own child die a very violent death - I see her death every morning at 630 am.
What I wish - A fathers wish - is that some stars would come together and have a special concert for Neuroblasotma - a pediatric caner that kills a lot of kids each year. Not sponsored by any of the conventional cancer groups because contrary to popular belief they do little for Neuroblastoma or any pediatric cancer for that matter. We need someone to help us raise a lot of money to help kids with cancer. I challenge stars to actually do their own research and do this because its the right thing to do.
Right now Kezia is planning a dance a thon - More details to come soon. She is doing her part, working hard and doing all the work to organize a fundraiser. She could use some big stars to help raise attention and a lot of money for the trial (to be announced on her website this week) they will be funding.
fitzgeraldcancerfund.org
It is a 501 charity and we make NO PERSONAL MONEY from the foundation.
Its the not-for-profit scientist and pharmaceuticals who are working on cutting edge treatments - including NON TOXIC and LESS TOXIC treatments. The government forces you to make your child take Chemo - for Neuroblastoma that is more times than not very deadly.
As a parent - I am frustrated because I hear every day of families struggling, kids in pain and getting sicker and chemo keeps getting pumped into them. No way a child's body can keep up with the poison. The chemo kills the immune system and has no way or encouragement to come back.
Everyone has heard of Breast cancer, colon cancer, pancreatic cancer, lung cancer -
Have you heard of Neuroblasoma? If not, look it up. Pass the word along. Share and help with awareness. What is it going to take to start getting people to pay attention?
Do I need to dress myself in orange and walk across the US?
Come on people.
Showing posts with label Art. Show all posts
Showing posts with label Art. Show all posts
Sunday, May 19, 2013
A Fathers wish and frustration.
Labels:Cancer, wife, daughter, life
antiques,
Art,
Baby,
Elmo,
Fathers Day
Sunday, May 12, 2013
Mothers Day - Written by Kezia
A grieving mothers positive message on mothers day:
"
Happy Mothers Day :)
"
Mother's Day...
Mother's Day.....
It's a day set aside each year to show your appreciation to your mom and celebrate those who are mothers. I remember being a kid and going to crafts in the park, picking out a gift for my mum, and wrapping it up knowing she would love what I found for her. I'm pretty sure that for the most part they were all things she didn't need and just took up space, but she always kept them (the only one I remember her using was the pocket tissue holder that lingered in her purse until I was at least in high school). I think to her, it was the fact that we went out and chose it on our own that made her smile. My poor mother has gotten her fair share of strange, non-usefull gifts from me and my sister over the years, and unfortunately she is a packrat, so I'm pretty sure they are all still somewhere in her house.
For those of us who have lost our children, mother's day is usually a dreaded day as it approaches. It's a difficult concept to grasp - do we celebrate our motherhood, or do we reject the made up holiday and steer clear of the cards and restaurant carnations? I know people on both sides, and I can't fault either one. Emotions are nasty bitches sometimes, and no one should be told how to feel.
So far I haven't had any luck with mother's day. My first pregnant mother's day, I was due just 3 weeks later, and I was tired, cranky, uncomfortable, bloated and pissy. Pretty standard for 8 and a half months pregnant. My second mother's day was spent in children's hospital. Saoirse had been diagnosed just 3 days prior, and we were doing her first round of chemo. I spent the whole day with her, holding and cuddling her, playing with her and focusing on making her healthy again. It may not have been my ideal thought of what mother's day should be, but in reality, it was probably one of the best mother's days I'll have. I got to focus just on Saoirse - the little girl that made me a mum - and nothing was expected of me other than that. Last year, she was gone. I didn't feel like a mum. I felt like a failure. I had been unable to save her; unable to make her better; unable to give her the childhood she so deserved. Cancer had stolen my baby, stolen my motherhood, stolen my mother's day. I felt defeated.
This year I feel a little different. Of course, I still hate cancer for what it did to my family - for tearing my Saoirse away from me and leaving a hole in my heart and my life. But I am still a mum. I was a mum starting the day I knew Saoirse was growing inside me. I was stuck with the title, and there was nothing I could do to loose it. From that moment on, she always came first, and that hasn't changed at all today. She is my first thought in the morning, and my last at night. She is my focus each day, and she keeps me running.
And now there's a feisty little man awaiting his summer birthday. (Luckily, I'm not 8 1/2 months pregnant, only 6 1/2 so I'm not miserable (yet)). His acrobatics remind me that he's growing strong, and that he will soon take over my time and energy. He will be my living child; the one that others "see" as making me a mum; my outward/public sign of motherhood. And he will be all those things, but Saoirse will still be the one who made me a mother. For it was she that changed my life and transformed me from a woman to a mum - a lifetime commitment, a lifetime dedication, a lifetime joy. - Kezia Fitzgerald May 11 2013"
It's a day set aside each year to show your appreciation to your mom and celebrate those who are mothers. I remember being a kid and going to crafts in the park, picking out a gift for my mum, and wrapping it up knowing she would love what I found for her. I'm pretty sure that for the most part they were all things she didn't need and just took up space, but she always kept them (the only one I remember her using was the pocket tissue holder that lingered in her purse until I was at least in high school). I think to her, it was the fact that we went out and chose it on our own that made her smile. My poor mother has gotten her fair share of strange, non-usefull gifts from me and my sister over the years, and unfortunately she is a packrat, so I'm pretty sure they are all still somewhere in her house.
For those of us who have lost our children, mother's day is usually a dreaded day as it approaches. It's a difficult concept to grasp - do we celebrate our motherhood, or do we reject the made up holiday and steer clear of the cards and restaurant carnations? I know people on both sides, and I can't fault either one. Emotions are nasty bitches sometimes, and no one should be told how to feel.
So far I haven't had any luck with mother's day. My first pregnant mother's day, I was due just 3 weeks later, and I was tired, cranky, uncomfortable, bloated and pissy. Pretty standard for 8 and a half months pregnant. My second mother's day was spent in children's hospital. Saoirse had been diagnosed just 3 days prior, and we were doing her first round of chemo. I spent the whole day with her, holding and cuddling her, playing with her and focusing on making her healthy again. It may not have been my ideal thought of what mother's day should be, but in reality, it was probably one of the best mother's days I'll have. I got to focus just on Saoirse - the little girl that made me a mum - and nothing was expected of me other than that. Last year, she was gone. I didn't feel like a mum. I felt like a failure. I had been unable to save her; unable to make her better; unable to give her the childhood she so deserved. Cancer had stolen my baby, stolen my motherhood, stolen my mother's day. I felt defeated.
This year I feel a little different. Of course, I still hate cancer for what it did to my family - for tearing my Saoirse away from me and leaving a hole in my heart and my life. But I am still a mum. I was a mum starting the day I knew Saoirse was growing inside me. I was stuck with the title, and there was nothing I could do to loose it. From that moment on, she always came first, and that hasn't changed at all today. She is my first thought in the morning, and my last at night. She is my focus each day, and she keeps me running.
And now there's a feisty little man awaiting his summer birthday. (Luckily, I'm not 8 1/2 months pregnant, only 6 1/2 so I'm not miserable (yet)). His acrobatics remind me that he's growing strong, and that he will soon take over my time and energy. He will be my living child; the one that others "see" as making me a mum; my outward/public sign of motherhood. And he will be all those things, but Saoirse will still be the one who made me a mother. For it was she that changed my life and transformed me from a woman to a mum - a lifetime commitment, a lifetime dedication, a lifetime joy. - Kezia Fitzgerald May 11 2013"
Happy Mothers Day :)
Monday, November 26, 2012
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
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
Labels:Cancer, wife, daughter, life
Art,
Boston,
CareAline,
Central Lines,
chemotherapy,
Chicago,
Children's Hospital Boston,
christmas spirit,
Curious George,
dads,
Elmo
Wednesday, November 7, 2012
Cancer is Pain. Period.
Its been difficult starting our business. We attended our first conference last weekend in Dallas and it was a huge success. We retrieved 90 leads from nurses and nurse managers all over the US. They all loved our products and want samples for trial. It was overwhelming. Our booth was constantly packed with people. Although it was overwhelming, it was fun and we enjoyed meeting everyone as well as the feedback we received regarding our products. The difficult part was knowing our products were developed while our daughter was sick. I wish I didn't have this product, I would trade it all to have Saoirse back. I would trade it all to have her not had been sick.
There is no comparable feeling than to watch your child suffer.
There is no comparable feeling than watching your child die.
Cancer in children is a horrible thing. Its evil. Its unforgiving. Its ridged. Its smart.
Cancer doesn't consider feelings or thoughts.
Cancer doesn't care about pain.
Cancer is Pain. Period.
Deep breath.
We are going to help others with our products. Kezia is going to help others with her foundation. Its a choice to do this. We can sit and fall into our sorrow or we can embrace it and keep our heads high. We didn't teach Saoirse to fall into her sorrow, we encouraged and built encouragement and love. That is us, it has to be.
Deep breath.
There is no comparable feeling than to watch your child suffer.
There is no comparable feeling than watching your child die.
Cancer in children is a horrible thing. Its evil. Its unforgiving. Its ridged. Its smart.
Cancer doesn't consider feelings or thoughts.
Cancer doesn't care about pain.
Cancer is Pain. Period.
Deep breath.
We are going to help others with our products. Kezia is going to help others with her foundation. Its a choice to do this. We can sit and fall into our sorrow or we can embrace it and keep our heads high. We didn't teach Saoirse to fall into her sorrow, we encouraged and built encouragement and love. That is us, it has to be.
Deep breath.
Labels:Cancer, wife, daughter, life
Art,
Baby,
Boston,
Childrens Hospitals,
Curious George,
Elmo,
Family,
Farms,
father,
Fitzgerald
Tuesday, November 6, 2012
I do not want the holidays to come
The past few weeks has been difficult. Usually I am excited about the holidays. I love decorating and getting the tree. This year not so much. Actually, I am not excited about it at all. I do not want the holidays to be here at all. Halloween was horrible. I really missed the excitement of what we would design for a costume for Saoirse. I know it was difficult on Kezia too. We just didn't seem very excited.
Deep Breath
I am not sure I want an xmas tree this year either. I guess I just feel overwhelmed that it has almost been a year. I miss holding her. I miss her learning and smiling and being excited about things she discovers. I miss her playing with Fallon. I feel her presence here in the house too. Its just so surreal.
There are some things that I can't/won't put away yet.
Folded clothes I put on my dresser about a week before she died as well as her sweater and toothbrush
Her changing table. Nothing has changed yet. her shoes are still there as if they are waiting for her feet.
Deep Breath
I am not sure I want an xmas tree this year either. I guess I just feel overwhelmed that it has almost been a year. I miss holding her. I miss her learning and smiling and being excited about things she discovers. I miss her playing with Fallon. I feel her presence here in the house too. Its just so surreal.
There are some things that I can't/won't put away yet.
Folded clothes I put on my dresser about a week before she died as well as her sweater and toothbrush
Folded clothes and one of her clothes hangers and a bag of snacks. I put these there on my bedroom radiator the day before we took her to the hospital last year
Her changing table. Nothing has changed yet. her shoes are still there as if they are waiting for her feet.
Labels:Cancer, wife, daughter, life
Art,
Boston,
Childhood Cancer,
Children's Hospital Boston,
Curious George,
Elmo
Wednesday, October 17, 2012
quiet
When I walk into the house I still expect to hear her laugh.
When I walk into the living room I still expect to see her playing or tormenting Fallon.
Its so quiet in the house.
Deep Breaths.
When I walk into the living room I still expect to see her playing or tormenting Fallon.
Its so quiet in the house.
Deep Breaths.
Labels:Cancer, wife, daughter, life
Art,
Childhood Cancer,
Curious George,
dads,
daughters,
Elmo
Wednesday, August 8, 2012
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.
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.
Saturday, July 14, 2012
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.
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.
Tuesday, June 5, 2012
Fathers Day, Tradition, Foundation, Business and No we are not Crazy
I want to thank you for all your love, support and positive encouragement. You are all wonderful. Saoirse had a lovely birthday.
Its funny how my daughter is still teaching me about being a person. Saoirse had so much patience with people. (for the most part..) I wish it was 5 years from now so the pain is lower. This is how I feel sometimes. Its been a tough past few weeks. Fathers day is coming up and I am already having feelings about that. Last year on Fathers day Kezia and I took Saoirse to play Put Put (miniature golf to some :) ). Craig and Kristina, as well as Tabitha and Scott were there too. Saoirse was feeling pretty good that day and was having a good time riding on my back on the back pack. I knew she wanted to just get down and run around.. lol.. but she still enjoyed herself. She was very vocal that day.. just talking to everyone :) She loved being with people and people loved being with her.
I saw this early evening out as the beginning of a yearly tradition to play PutPut on Fathers day. I feel sad because I want her home so we can go play. I have thought about going and keeping the tradition in honor of Saoirse. My body tensed up when I had that thought so I am thinking I am open to it, but just not this year. That made me think of the Fitzgerald Cancer Fund's launch on June 18th. in NYC. This is the day after Fathers day this year. That won. This year fathers day is about Saoirse and Neuroblastoma. Now, I have very little, if any to do with the foundation. Kezia and the board run the show. I want to give a very big hug and shout out to Kezia and all of the board members.
Kezia and the entire board of directors of The Fitzgerald Cancer Fund, Inc (we found a free non profit lawyer service to help file the paperwork for non profit public charity - we have to attend a seminar on non profit start ups which we are really looking forward to attending) have been working tirelessly to organize the foundation and plan our official launch in NYC. I mean hours of nightly board meetings, days and days full of planning and designing and hours and hours of designing media. Planning a launch like this is not as simple as saying "think we will go to new york and launch the foundation" .. there are a lot of details and legal requirements that needed to be fulfilled such as photo releases. We thought at first that maybe we are putting to much into this. But no. We are not. This foundation is a commitment. Kezia and I committed to Saoirse and a lot of other parents that we will do what we can to help. This is a lifetime commitment. Board members are all committed. They are so wonderful.
The purpose of the launch at the Today Show Plaza (which I want to add that we are not invited guests on the show, we are just flooding the plaza) is to officially launch our foundation and bring a heightened and much needed awareness to Neuroblastoma, the deadliest and one of the hardest to treat and cure Child Cancer.
I have my own project. We still have to eat, pay a mortgage, car payment, heat, etc.. We are starting up a business and so we have a lot going on.. I write all day. We have a manufacturer now that we really like and we are in the final stages of samples before production. We are both pretty busy, and that feels good. Its not easy. I have to have a lot of patience with myself as well as with others. Some days I don't write. I just garden or clean. Sometimes we watch a movie. We have our bad days. Sometimes bad days-in-a-row. Thats ok though, so I am told. Sometimes I have to force myself to get up. So I do because we have to. I have no choice but to get up and work for my self, for my family and for my sanity. I got to talk with other parents who lost their child to Neuroblastoma a few weeks ago. I needed that because I just had to make sure I am not crazy. I am not. They are not. We watched our child die.
With all of our busyness, we still make a point to do stuff non business non foundation related such as art walks, a drive, gardening, a movie, or just a walk around Salem or Neurburyport. The best thing is all of that stuff is free :)
Deep Breath. This felt good. I needed to just sit and write in this blog.
** To all dads out there.. you are not crazy. We are not crazy. Take deep breaths often.
Its funny how my daughter is still teaching me about being a person. Saoirse had so much patience with people. (for the most part..) I wish it was 5 years from now so the pain is lower. This is how I feel sometimes. Its been a tough past few weeks. Fathers day is coming up and I am already having feelings about that. Last year on Fathers day Kezia and I took Saoirse to play Put Put (miniature golf to some :) ). Craig and Kristina, as well as Tabitha and Scott were there too. Saoirse was feeling pretty good that day and was having a good time riding on my back on the back pack. I knew she wanted to just get down and run around.. lol.. but she still enjoyed herself. She was very vocal that day.. just talking to everyone :) She loved being with people and people loved being with her.
I saw this early evening out as the beginning of a yearly tradition to play PutPut on Fathers day. I feel sad because I want her home so we can go play. I have thought about going and keeping the tradition in honor of Saoirse. My body tensed up when I had that thought so I am thinking I am open to it, but just not this year. That made me think of the Fitzgerald Cancer Fund's launch on June 18th. in NYC. This is the day after Fathers day this year. That won. This year fathers day is about Saoirse and Neuroblastoma. Now, I have very little, if any to do with the foundation. Kezia and the board run the show. I want to give a very big hug and shout out to Kezia and all of the board members.
Kezia and the entire board of directors of The Fitzgerald Cancer Fund, Inc (we found a free non profit lawyer service to help file the paperwork for non profit public charity - we have to attend a seminar on non profit start ups which we are really looking forward to attending) have been working tirelessly to organize the foundation and plan our official launch in NYC. I mean hours of nightly board meetings, days and days full of planning and designing and hours and hours of designing media. Planning a launch like this is not as simple as saying "think we will go to new york and launch the foundation" .. there are a lot of details and legal requirements that needed to be fulfilled such as photo releases. We thought at first that maybe we are putting to much into this. But no. We are not. This foundation is a commitment. Kezia and I committed to Saoirse and a lot of other parents that we will do what we can to help. This is a lifetime commitment. Board members are all committed. They are so wonderful.
The purpose of the launch at the Today Show Plaza (which I want to add that we are not invited guests on the show, we are just flooding the plaza) is to officially launch our foundation and bring a heightened and much needed awareness to Neuroblastoma, the deadliest and one of the hardest to treat and cure Child Cancer.
I have my own project. We still have to eat, pay a mortgage, car payment, heat, etc.. We are starting up a business and so we have a lot going on.. I write all day. We have a manufacturer now that we really like and we are in the final stages of samples before production. We are both pretty busy, and that feels good. Its not easy. I have to have a lot of patience with myself as well as with others. Some days I don't write. I just garden or clean. Sometimes we watch a movie. We have our bad days. Sometimes bad days-in-a-row. Thats ok though, so I am told. Sometimes I have to force myself to get up. So I do because we have to. I have no choice but to get up and work for my self, for my family and for my sanity. I got to talk with other parents who lost their child to Neuroblastoma a few weeks ago. I needed that because I just had to make sure I am not crazy. I am not. They are not. We watched our child die.
With all of our busyness, we still make a point to do stuff non business non foundation related such as art walks, a drive, gardening, a movie, or just a walk around Salem or Neurburyport. The best thing is all of that stuff is free :)
Deep Breath. This felt good. I needed to just sit and write in this blog.
** To all dads out there.. you are not crazy. We are not crazy. Take deep breaths often.
Labels:Cancer, wife, daughter, life
Art,
daughters,
Fathers Day
Thursday, May 31, 2012
Did the past year actually happen?
Did this past year actually happen?
As I sit in my office or in my chair in the living room, I ask myself "did the past year actually happen?", "did we really have a child with cancer?"
I have been having some bad days. I am again being flooded by images of saoirse the day she died. The sounds actually and the image of her getting cpr. I am haunted by all of the doctor talk. I am haunted by the machine that made the loud beeping noise.......
It had been getting better, but I have times where it really floods me. I know I am not crazy, its just difficult. It sucks all of the wind out of me. What was she thinking about? did she feel any pain? did she hear me tell her I love her from across the room? Did we make the right decisions?
Regret..
Not bringing her home so she could die at home.
Deep breath
I have been crying for a week actually. I feel such a deep sense of loss. Saoirse's birthday is tomorrow. We are having a Celebration Party for her on June 9th. Saoirse loved life and she loved parties. She loved being around her friends and playing. All of her friends are having birthday parties right now.. Thats the other thing.. we are invited to the parties and we go. Kezia's mom's group are wonderful and have stuck by our sides through and through. We love them all. We bring saoirse's Elmo doll with Curious Georges shirt on.. Saoirse's presence is always there.
Kezia is also launching the Fitzgerald Cancer Fund by flooding the plaza of the Today Show on June 18th with large poster sized pictures of NB kids. Helping to organize this has been tolling on the both of us.. Its overwhelming actually because there are so many factors in putting it together. We still need to have the posters printed and find a place that is not expensive. The other challenge has been getting people to come down and help hold posters because we have to get there early.. Like super early to ensure the prime location. It is a monday so its difficult i realize. But we will make it work.
I will write more later.. Also, I will write about our trip to Austin, TX later. This was significant for me because I got to speak with other parents - In particular other dads.
As I sit in my office or in my chair in the living room, I ask myself "did the past year actually happen?", "did we really have a child with cancer?"
I have been having some bad days. I am again being flooded by images of saoirse the day she died. The sounds actually and the image of her getting cpr. I am haunted by all of the doctor talk. I am haunted by the machine that made the loud beeping noise.......
It had been getting better, but I have times where it really floods me. I know I am not crazy, its just difficult. It sucks all of the wind out of me. What was she thinking about? did she feel any pain? did she hear me tell her I love her from across the room? Did we make the right decisions?
Regret..
Not bringing her home so she could die at home.
Deep breath
I have been crying for a week actually. I feel such a deep sense of loss. Saoirse's birthday is tomorrow. We are having a Celebration Party for her on June 9th. Saoirse loved life and she loved parties. She loved being around her friends and playing. All of her friends are having birthday parties right now.. Thats the other thing.. we are invited to the parties and we go. Kezia's mom's group are wonderful and have stuck by our sides through and through. We love them all. We bring saoirse's Elmo doll with Curious Georges shirt on.. Saoirse's presence is always there.
Kezia is also launching the Fitzgerald Cancer Fund by flooding the plaza of the Today Show on June 18th with large poster sized pictures of NB kids. Helping to organize this has been tolling on the both of us.. Its overwhelming actually because there are so many factors in putting it together. We still need to have the posters printed and find a place that is not expensive. The other challenge has been getting people to come down and help hold posters because we have to get there early.. Like super early to ensure the prime location. It is a monday so its difficult i realize. But we will make it work.
I will write more later.. Also, I will write about our trip to Austin, TX later. This was significant for me because I got to speak with other parents - In particular other dads.
Labels:Cancer, wife, daughter, life
Art,
Blog,
dads,
daughters,
education,
Elmo,
Farms,
food,
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Fruites,
Horses
Thursday, May 24, 2012
NYC Today Show Plaza
We are excited to launch our foundation by flooding the plaza of The Today Show on June 18th 2012 with pictures of Neuroblastoma kids to bring more awareness to the world. When I originally posted my idea a few months ago, someone emailed me and said the company they work for can do some of the large poster sized prints we need.. I can not find your email. If you read this please email us at fitzgeraldcancerfund@gmail.com For more information on what we are doing please visit the Facebook event page: http://www.facebook.com/events/221552697963446/
Or you can just visit our webpage fitzgeraldcancerfund.org
Thank you
Or you can just visit our webpage fitzgeraldcancerfund.org
Thank you
Thursday, May 17, 2012
NMTRC Symposium 2012
Currently at the NMTRC Symposium 2012.. wow, what a lot of information relating to Neuroblastoma. I will write more detail later, but there are some great things happening in the treatment of Neuroblastoma..
Thursday, May 10, 2012
No mother should have to deal with this
I think the best I can do is just be there for her. Not be overly hovering her, give space and lots of hugs.
Saoirse was diagnosed on Mothers day of 2011. So Kezia has a double pain. On top of that, Kezia was battling her own cancer and going through Chemo. I have been trying to place myself in her shoes to get her through this. I also have to make sure I am ok. I have been having dreams lately about Saoirse.. She is crying for me. I can't get to her. Then I wake up. For just a second, I think its just a dream and I listen for her in her room. Then it hits me.
Deep breath.
Saoirse was diagnosed on Mothers day of 2011. So Kezia has a double pain. On top of that, Kezia was battling her own cancer and going through Chemo. I have been trying to place myself in her shoes to get her through this. I also have to make sure I am ok. I have been having dreams lately about Saoirse.. She is crying for me. I can't get to her. Then I wake up. For just a second, I think its just a dream and I listen for her in her room. Then it hits me.
Deep breath.
Labels:Cancer, wife, daughter, life
Art,
Farms,
Flowers,
Mothers Day,
organic
Friday, April 13, 2012
Lets get our hair cut :)
Today marks 4 months. I just can not believe it. I think about the past 4 months and it all seems like a blur. The past year seems like a blur. The past few nights i have not been able to sleep. My mind is flooded with the last few days of Saoirse's life and especially the last few hours of her life. I wish I could have saved her. I wish there was another way to help with out using Chemo. I miss her so much. I wish I could hold her. I wish she could come out and help and play in the garden while I plant. I see her smile in my minds eye all day long. She was so happy and loved to laugh. I was thinking about her voice yesterday and how cute it was. I really miss hearing her talk and just run around humming and having fun.
Deep breath....
On another note: I have not cut my hair since last May.. It's almost been a year. I am having it cut soon. I will be participating in Kids Cancer Buzz Off on June 3rd and will be having my head shaved to raise money for Children's Hospital Boston. http://www.kidscancerbuzzoff.org/index.html
Before:
Deep breath....
On another note: I have not cut my hair since last May.. It's almost been a year. I am having it cut soon. I will be participating in Kids Cancer Buzz Off on June 3rd and will be having my head shaved to raise money for Children's Hospital Boston. http://www.kidscancerbuzzoff.org/index.html
Before:
The last day to sign up to join my team to have your head shaved with me at Gillette Stadium is the 13th (today). I created a team you can join if you want to go and shave it all off with me at Gillette stadium on June 3rd 2012. All you have to do is go to http://www.kidscancerbuzzoff.org/index.html and sign up and join "Team Saoirse". When you click the "register now" it will direct you to the Firstgiving site which is where you create your account and it is only $35 to join and come along. Please consider this, all of the money raised goes to Children's Hospital. This will be a fun day. If you are unable to make it, don't worry, you can still support me by visiting the link and make a donation. Even if it is only $5, it all adds up. here is the link: http://www.firstgiving.com/fundraiser/mikefitzgerald/kidscancerbuzz-off
Thank you so much and please share my blog with all of your friends. Childhood cancer needs desperate help.
Labels:Cancer, wife, daughter, life
Art,
Childhood Cancer,
Curious George,
education,
travel
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
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
Labels:Cancer, wife, daughter, life
Art,
Farms,
Fitzgerald,
Friends,
Vegetables,
Vegetarian
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.
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.
Labels:Cancer, wife, daughter, life
Art,
food,
Neuroblastoma
Tuesday, January 17, 2012
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.
Labels:Cancer, wife, daughter, life
Art,
Motivation,
Neuroblastoma
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