Carol

[Guest guest]

Dear Carol,

Like the others, I can truly relate to what you and Josh are were feeling

last night. Mark and I have had that exact same conversation.

When Mark asked me this, I answered pretty much the same way you did. I

believe that Mark felt just like Josh did...that perhaps, I knew something

more then what I was telling him Children do not have the cognitive

abilities to understand the depth of these things like adults

do....understanding comes with life experience. Death is a sensitive,

uncomfortable issue for most people, but for children it is not only

frightening but also perplexing. Children look to us to " fix " things and to

have the answers and often times, certain things are out of our control.

Reassure him and let him know that he can always turn to you no matter what

to talk about anything and everything. Allowing him to talk about his fears

with you opens up communication and allows for reassurance. Sometimes we

will not have the answers, but at least we can comfort them.

I remember after Mark was diagnosed with the Cd5-Cd19 PID....Dr. Hostoffer

told us that he did not know what the life expectancy would be...as there

were no adults with this PID that had been identified...4 years later, there

still are no adults. After dealing with alot of emotions and my own fears

that this brought about, I let go of the idea that my child might not make

it to see adulthood and rather took on the attitude of letting him live his

life to the fullest under any circumstances....that was when I decided that

quality verses quantity would be the way we would live and that it was the

one thing that I could give to him. It has worked out very well and I have

not noticed that Mark is any sicker as a result. Good luck to both you and

Josh and consider yourselves hugged today )

Autumn (Mom to Mark Cd5-Cd19 PID)