April 2007 Archives
It's Charlotte here......
I've sat in front of the computer many times, everyday infact, and go on to the access page for us to write our blogs and I begin to write and then find myself hitting the backspace key on my keyboard because I don't know what to write or I don't like what I've written. You were all such faithful readers for Jack's progress and now I find myself unable to write about us.
Tomorrow will be one month that Jack passed and there isn't a day that goes by that I don't cry, even if it's only for a few moments. Pictures are tough, I try to not look at too many in one sitting because I am shot for the rest of the day. I think of his touch that I will no longer feel and I am afraid I will forget it and Jack gave the best kisses. Roy and I used to compete over who would get more kisses and Jack used to always give Roy more, can you believe that, he would give me one or two pecks and give Roy about 10 or 12. We would laugh. I remember when Jack would have difficulty with walking up the stairs (before he stopped walking) or his legs would hurt from the edema and he would ask me to carry him up, I would tell him to put his head on my shoulder and hold on like he was hugging me and you know I was doing that to steal hugs!!!
We have been keeping ourselves busy with Christina with softball, twirling and gymnastics and she is getting used to having mommy and daddy around all the time. She asks a lot of questions and talks about her brother a lot. She is so smart and beautiful and likes to laugh about certain memories she holds in her heart. We go to the cemetary every day and the we're waiting on the sketches for the head stone. Someone had sent us condolence flowers in the shape of Buzz Lightyear, which is absolutely fantastic, and it is still standing at the head of Jack's plot as if Buzz is guarding him. I am so thankful that my uncle who passed many years ago left the cemetary plot to my mother and it is right here in Fairfield not even a mile from our house and all our boys are there. My brother, my nephew , my brother-in-law, my dad and now Jack is there, we have all our gaurdian angels together in one place.
We have some pictures we will eventually post, we're just not ready yet. The days are long and the nights are longer without our little boy, but we're ok. We have good and bad days and we're just trying, moving on and living to make a difference. I read about the other NEMO boys everyday to keep up with their progress and it makes me feel really good to hear how well they are doing. We have Jack's legacy to fulfill and there is so much information that we need to know about NEMO. Please remember to keep these families in your thoughts and prayers. If anyone is wondering what they can do for us, please consider becoming part of the National Bone Marrow Registry. There are so many children who need the chance to live and a transplant may be their only way.
http://www.marrow.org/
Thank you, again and again and again for always keeping us in your thoughts and prayers.
It is almost 2 weeeks ago that we laid to rest our baby, our angel, our hero, our friend, and our inspiration. Are we ready to talk yet? My answer would be it depends on the moment. The emotions change minute to minute, hour to hour. Don't quite know how to feel. Feel lost, feel relief from the pain and suffering, feel like I shouldn't feel either one of those feeelings. Anyway I'll/we'll get them under control and move forward.
For all those who were not able to attend Jack's funeral, it was a beautiful send off. Fire engines, police cars, police motorcycles, roads closed. It was an incredible display of love and emotion for the little man who touched this community and the lives of so many people in a way that is inexplainable.
On the day of Jack's funeral I read a eulogy that Charlotte and I wrote. I have had people ask for a copy of it so I figured I would post it for all to read. Just click on the following link Download file.
I would also like to say thank you to each and everyone of you, the support that everyone has shown, has us blown away.
Thanks Again Everybody
Here I go......Hi everyone, it's me, Charlotte. Its been a while since I last blogged for prayers and I can't thank everyone enough for always remembering in us.
Today is the first day that I am alone at home. Roy went back to work today and Christina went back to school on Monday, so here I am home with my mom. We have gotten so many emails and guestbook entries and eventually we will respond but I thought I'd start with a blog to let you know how thankful we are for all of you. You have all shown us increible amounts of support over the last 4 years and especially now. The last 2 days have been a little difficult and I'm sure I'll have a lot of those days. I have so much to do, our living area in my mom's house has been a dumping spot over the last couple of months with Jack being in and out of the hospital, I have med's that need to be thrown out, clothes to put away and toys to be boxed. Everywhere we turn, there is Jack and for the rest of our lives there will always be Jack.
As my very good friend said, "Jack has a legacy" which Roy and I are determined to continue to fulfill. Jack gave us all so much. The NEMO diagnosis and the knowledge alone will help more families with this condition and we will remain advocates and support systems to all of our NEMO families. We are a small group who live miles and miles apart but we have a closeness that makes us family. There is so much to do and we will do it. Since having Jack and going through his incredible journey, I have expressed that I have a calling in life and that calling is to help and give my knowledge and gain more knowledge to be able to support and help others. I know I have to go back to work, which I have wanted to do for a long time as long as Jack was better, and now he is better, no more pain, no more suffering, just peace. I'm actually tossing around schooling or something that can make me more beneficial to the cause. We'll see, right now our main focus is on Christina.
To all of our NEMO families,
Don't be afraid to call us, we are here for you. Any questions you need answered, we are here for you. Jack was cured from NEMO. Jack had a purpose and he endured and did more then any 1 adult may ever do in a lifetime. Jack was the strongest man we have ever known and he will give us the strenth to continue to help all of you, our NEMO families.
Thank you all again so much for everything.
God Bless
As most everyone has heard our beloved Jack was given his angels wings on Tuesday evening at 7:52pm. Jack passed from complications of pneumonia.
Yesterday, was the hardest and most difficult day of our lives. Charlotte, Christina and I laid Jack to rest. Jack fought a long and hard battle in his 4 1/2 years on this earth. He was the bravest, strongest man I knew. Jack was laid to rest with full firemen's honors. The show of support from family and friends was incrediblle. In his short time with us he touched the hearts of many. I have been receiving email and comments on this page from so many people far and wide. Jack had an effect worldwide. Dr. Jordan Orange spoke at Jack's funeral and vowed to continue to work for a cure with Jack's inspiration.
Here is the link to Jack's obituary that was posted in the Newark Star Ledger .You may also leave comments in the guestbook. You can also checkout Jack's Everlasting Memorial page . Just click on the movie banner. Please sign the guestbook and let us know you visited. We will follow up with another blog in the next day or so, the emotions are clouding my head.
