March 3, 2008

The questions we have been getting is "what are we doing for the year anniversay" and "how do you want Jack remembered"........

I don't know how to explain how we feel.  I, Charlotte, have been feeling a lot of anxiety over the last couple of weeks for the realization that Jack has been gone almost a year.  I am shedding more tears and feeling quite a bit of heartache.  There is still so much of Jack around that Roy keeps asking when are we going to start putting things away which makes me break into more tears. I know there is no rush to putting things away, but I have learned the means of "avoidance" and that is not good either.

So, to answer those questions:

At this point we are planning a graveside service on the 27th filled with prayers and memories,

And, honestly everyone has been so wonderful with remembering Jack on a daily basis that I can't imagine doing anything more then you have all already done.  I would love to make March 27 and September 4 national blue and orange day in remembrance of Jack, but I don't think I have that kind of pull, HOWEVER, I know Jack does.  So as usual, I am suggesting that everyone wear Orange and Blue in remembrance of Jack on those two days and please send us pictures, we love to see that!

There are many people who I run into that say they think of Jack always, most people tell me they say hello to Jack everytime they pass the cemetary and some people say they think of him in their own special way.  I am so grateful to have so many people to care about us as well as I am still amazed at how Jack "infected" so many people with his charm and personality.

We miss him so.........

Just on another note, please continue to keep the NEMO families in your thoughts and prayers.  Over the last several months there have been many ups and downs for them.  Unfortunately there is still so much that needs to be learned about NEMO and the affects of Stem Cell/Bone Marrow and Cord Blood transplants for the cure.  Also, please keep our good friends Alyssa Riccardi and Mathew Brand, two of Jack friends who went through transplant at the same time in your prayers.  Alyssa is having fluid issues and is still waiting for a kidney transplant and Matthew's cancer came back.  My heart is breaking in so many ways for all the NEMO families and our very good friends with other medical issues.

If you would like to remember Jack through Donation you are welcome to donate to the "Found NEMO-Finding Cure Foundation"  (PO Box 366, Pine Brook, NJ 07058).  We are accepting donations that we will divide between the NFED (National Foundation for Ectodermal Dysplasias  www.nfed.org) and the IDF (Immune Deficiency Foundation  http://www.primaryimmune.org) or feel free to donate in Jack's memory directly to these organizations.  Also, another way to remember Jack is to become a Bone Marrow Donor (http://marrow.org/) or for the pregnant ladies you can electively agree to donate the cord blood from your baby.  Cord Blood, in my opinion, has given the NEMO boys a much better recovery.   You could save the life of a NEMO child as well as someone who has Cancer.