July 2007 Archives
To my Jack and Opa
Jack, it's been 4 months since you've gone and we miss you so much. And Dad, it's been 19 months since you've gone. No day goes by without a thought of both of you. We try so hard to keep moving forward and it's so difficult, but we do it. I know that you are both "home" and safe and always with us. I'm so happy that you are together, I'm sure your making lots of trouble, what a team you both are. Not only are you two making trouble, but I bet Paulie, JP and Mark are egging you on. One day we will all be together again. We're doing our best to take care of Oma and she misses you guys so much. Sometimes it's hard to see her by herself, but we try to include her in everything we do and try to keep her from crying all the time. We are going to make you so proud of us. We will do whatever we can to make a difference and your legacies will live on forever.
I love and miss you!
Til we are together again,
Love you,
Mommy to my Jack
Charlotte to my Dad
This is my third entry in a week, WOW, it's been a long time since I've done this. Anyway, I called Roy this morning at work and he said, "go check the guestbook comments" and I said "who commented" he said, "just go check it". One of our typical conversations with questions answered by questions so I went over to our computer and read this most fantastic comment written by a stranger. I know you can all just go into the comments and read them your selves, but I felt the need to post this on an entry in the blog. I also wanted to let the woman know, who's name is Tracy, that we are so touched and want to Thank her for her kindness and always saying "Good Morning and Good Night" to our little Jack!! Tracy, I'm so glad he has touched your life without even knowing him. Jack may not be here with us, but he is living on in our lives as well as us continuing on with fulfilling his legacy.
Please read her comment below...
Hello, I know you don't now me but I work on Fairfield Road. Everyday I pass your sons grave. At first I didn't understand how Jack passed on. But I saw his picture on the tombstone and breifly saw his first name. Since my first time passing and seeing his name every morning I say "Good morning Jack" and every evening when I pass I say "Good Night Jack" I know I sound nuts, believe me I'm not. So today I passed by after having a conversation with my boss and he told me to write down his full name and google it. Well that's how I found your site. My deepest sympathy's to you and your family. He really was a strong little boy. Jack has an amazing story. It really took my breath away. I read it to my WHOLE office. There wasn't a dry eye in site. I just wanted you to know that your sons story touched a lot of people's lives today. His grave site is BEAUTIFUL. The pictures are just gorgeous of the funeral and especially of his life....And again I am sorry for your loss!!!
Thank You Tracy!!!!!
Well it's official! Congratulations Roy, We Love you!!!!
Today the announcement was made at Roy's work that he is officially the Manager of New Jersey Central Care (Operations) of SCI (Service Corporation International). This has been a long awaited for promotion and I am so proud of him for sticking it out and waiting for it to be given to him. Lots of Luck, Babe, you did it!!!!!!!!
My Dear Baby Jack:
Daddy did it! Stay over his shoulder and guide him through this journey!!
We love and miss you so much! There is not a day that goes by that your not in our thoughts and the memories will last a lifetime.
Love you Bug,
Mommy
All I can say is WOW! New Beginnings for many things!! Last Wednesday June 27, Roy, Christina and myself set out, by car, to St. Louis Missouri. It was truely a bitter-sweet feeling for us. This was going to be the first for many things. Our first trip anywhere without our Jack, our first Immune Deficiency Conference, the first EVER conference about NEMO Deficiency and most of all the first time meeting other NEMO families all in one place.
Incredible!!!! The first ever NEMO Deficiency symposium, included, The Hagelin Family, The Trevino Family and the Gutierrez Family. We set the stage for a beginning to a future of knowledge towards educating not only ourselves but to educate others for this immune deficiency that changed all our lives. We are so proud to be, as Andres Trevino wrote in Andy's Blog, "Pioneers"!!!!!! (please go to http://partnerpage.google.com/andy.org.mx to see first EVER pictures from the conference which reads "A Giant Leap for Mankind".)
We also had the pleasure of meeting Carol Ann Demerat, who's son David was born with the primary immune deficiency called SCIDS, you all know who is was, he was "The Boy in the Plastic Bubble". Carol Ann is truely an inspiration. David lived 12 years in a bubble that grew as he grew, he recieved a stem cell transplant, which unfortunately wasn't a success, and she never felt the touch of her son until right before he passed away and here she is 23 years later, giving talks about her life experience with David and educating people. She is where we want to be and we will be. Jack's life will be remembered just as David's is. Also, Carol Ann, having met us only for about 15 minutes the first day we got there, gave a speech Friday evening telling about David's story and preceeded it by dedicating it to Jack. We can't thank her enough for being so kind.
There are so many different types of Immune Deficiencies and still yet not enough information and education and research however, once diagnosed people affected can be treated with IVIG, which was Jack's saving grace after being diagnosed yet there are those who have difficulties with their insurance companies covering their means of living infection free. It is a shame how the systems work, but this organization helps make things happen. It helps with those needing assistance in finding doctors, medications and also people, Dr. Orange included, going down to Washington and lobbying to get these issues approved and covered. It was an amazing conference for the amount of knowledge the IDF is able to get out there to those in need.
Now, Dr. Orange........what can I say about him???? His NEMO symposium was great. As usual, I interuptted him with questions and probably drove him crazy, but just to be in one room with other NEMO families asking the questions we all have been wanting to ask and getting our answers and making a difference, was completely incredible. He is always ahead of the game and he began his talk with dedicating the first ever NEMO symposium with a picture of our Jack.
I so wish some of the other NEMO families would have been able to make the conference and I completely understand why some could not make it, but I am warning these families now, the next IDF Conference will be in 2 years in Disney World (Florida). Hopefully the boys having transplant by the end of this year will be out of the woods and we can be more then 3 famililes making the difference. I will keep all these families in my prayers for good, healthy, successful transplants to be able to board the "Pioneer Wagon". Please pray for all of us to be together.
Roy and I also had the pleasure of meeting Marcia Boyle who is the founder of the IDF and we sat with her for a few minutes and told her about Jack and she was very happy that we attended the conference and especially about NEMO. She didn't know about Jack and our expereiences and she has extended herself to us to be able to do whatever she can to help us get as much information as possible and be a part of making the difference. She said she was very estatic when Dr. Orange approached her to do a NEMO symposium and she wants us all to work together on continuing to do talks and getting NEMO out there and educating people. Jack's legacy begins, we want and will work on getting it out there.
The conference ended on Saturday and we said our good-byes to The Trevino's and the Gutierez families and told each other we would stay in touch much more then we have in the past. We are familiy, not tied by the bonds of blood, but tied by the bonds of NEMO and most of all, strength. We ended the conference at the St. Louis Zoo. The kids had a great time and we really enjoyed being together as a family. We miss you guys, already!!!!!! Hey, we just have more places in the United States to go visit and our door is always open here in New Jersey, stop in anytime your passing through!!!!!!!!
Here are some pictures we would love to share.
The First EVER picture of 3 NEMO families, all in one place, the St. Louis Zoo.
Christina with Sopia and Andy Trevino.
Christina with Isabel, Marriana and Simon Gutierrez.
Me and my new NEMO boy, Andy....he refused to talk to me, hug me or take a picture with me until the last possible minute that we were together. He was pulling my leg and teasing me and finally gave in as we said our good-bye's at the hotel.
And finally, the Orange and Hagelin Family (excluding me, someone's got to take the picture) hanging out right before we all left St. Louis. Thanks for everything Jordan and Katie. See you soon.
