A bit more rested

[Guest guest]

Now that I have had a nap and Max's pain seems to be under control, I am

beginning to focus on my feelings of the past few days. In particular, I am

concerned about statements Max made last night. They were upsetting to me,

as a parent, but an excellent opportunity to really talk to Max about RSS.

Max handled the surgery VERY well. He wanted this more than anything in the

world because he wanted to be rid of the gauze, tape and worry that leaking

brought every minute of every day. He was a real trooper. Even when he was

in recovery and did not feel well, he knew that the procedure was over and

he was on the way to being whole again. (My words, not his, but I think

that is what he was telling me.) But last night when he was screaming in

pain, he said some things I have really wanted to hear from him - not

because I WANT him to be upset about having RSS, but because I cannot

believe that he can go through what he has gone through and not ever be

angry about or questioning of why he has RSS.

And did he have a lot to say about it all. He said he is tired of being

small; he doesn't want to have to see doctors and have things done to him

all the time; he wanted to know why he has to have RSS; he doesn't want to

be different from the other kids; why does he have to have all these things

done to him when other kids don't; he worried that he may get cancer from

the meds he is taking - or die early from having RSS; oh, the list went on

and on and on. Now, I know he was in pain and just rambling; however, I

also know that these questions had to come from somewhere in his head and I

was really " glad " that they came out. The only problem was that he was

saying things that I feel for him each and every day. We cried together and

talked together and I think it brought us that much closer. I don't ever

want him to be afraid to tell me his feelings. On the other hand, when he

does tell me his feelings, I don't want him to think that I am next to God

and can answer everything and make it all better all the time. (I grew up

with that feeling about my parents and it has been a rude awakening for me

as an adult to realize that this is not true.) I answered him honestly and

shared my sometimes feelings of anger and inadequacy, too. Wow! Who would

have thought I would be having this kind of conversation with my 11 year

old?

I think that a little bit of Pandora's box has been opened for me again. I

go through this occasionally with my feelings and try to deal with them in a

healthy way. I don't have the exact words for them, yet, but I think that

people like Cheryl and Kathleen in particular can understand where I am with

this. When things are moving at a steady rate and I know what I am dealing

with and there is a routine, then I can face them in a healthy way. But

when things go astray and my child has to deal with yet another procedure,

intervention or issue, then all sorts of " stuff " goes on in my mind. There

are anger, guilt, helplessness, fear (terror?), and many more feelings to

face and put into perspective. I have to enter my one step/breath at a time

mode. I have to rely on all of you to help me through this. (That is

difficult for me to do - I am used to being the supportive one - not the one

being supported.) I have to learn to grieve all over again. The only thing

I can say is that each time lasts a little less time than the one before.

That is good.

So you see, everyone, my child may be older than many of yours, but the

feelings never really go away. I just have to let them come out, regroup,

and pick myself up and move on. I don't know if I am helping you by sharing

this, but I hope so. Knowledge is power. If I can share and give you a

glimpse into the future, then maybe you all will have an easier time,

knowing what to expect. On the other hand, just because you have younger

children, it does not mean you are not a support to me. Knowing that you

understand how I feel is priceless. Thank you.

Jodi