My New Earth work is actually on It's a text messaging book club. In case you came here from the Oprah website and were wondering where it all is. I'll bring my New Earth Work over here because, I guess this is where it's meant to be. Welcome to Jippyjabber! PS I am auntjippy on the Oprah message boards.

Sunday, January 21, 2007

We are still floating down the river in Egypt....yeah, yeah, De Nile.......

So I told my sister that I might get ear plugs like the ones on Greys Anatomy. Because it's the sound of his pain that has me wanting to throw up my whole life. So she says, I don't know why you are going to do it. ....... so I think this is kind of funny but she's not laughing.... so I have to consider this for a moment. I told her Zach has a bald spot on his head. When his kidneys failed and his liver failed.... well the whole rabdomyalisis thing ......he lost a bunch of hair..... most of it has grown back but a small roudn spot is still missing. He has hair that covers it. I could take him in for a series of shots in the head, right in the bald spot to try and see if ......IF his hair will grow back........ So, I am not doing it. He might be mad at me one day and I might be mad at me one day.....but I am not doing it. It's different with WALKING .........

You have to understand. I worry about my son suffering. She worries about me suffering. From her pont of view she has to see us go through this. Also, we know someone who has a child with special needs and she just walked away. I can't judge. If I become so messed up that the best thing for Zach is for me to walk away..... then I hope I have the sanity to see it and the strength to do it. ( Bullshit, I'll never do it.)

What the fuck he's going to get worse with puberty anyway so take the medicine at the same time and gut it out and hopefully his leg will improve.

I have one more happy day because we start the medicine at night. I think I will take him to famous cupcakes


cinemagypsy said...

Good call on not having Zach go through the injections for the bald spot.

You know, if eventually you can't do it all, then you just can't. It is very different for a caregiver to hear Zach's suffering than it is for you, his mother. It is not a bad thing to consider getting a break from time to time so you can be 100%.
I can't imagine the suffering you are both going through.

Amy W said...

I would agree on the injections for the bald spot...

I don't know how you do it, my heart breaks just reading about your son.

Wish I could join you at the cupcake place...

Miriam said...

I wish I could make you cupcakes. I just bought a mix with little hearts you bake right in. Sooooo full of bad chemicals= yummy. Bring on the funfetti frosting!

I am only asking this sort of kind of rhetorically because it's totally none of my beeswax, but since you've been sharing this with us... do you do respite care with him ever? Is there a good one where you live? My aunt (not to trot out the I-know-this-person story, but...) has a good situation for my cousin Brad, and it works well for both of them. He's in his twenties now, and has been staying at Respite occassionally for years. He loves it, and she needs it.

I get lumps on my head. They're totally benign, but lumpy. A guy I know has one gray clump, has since he was 10. Heads are funny anyway- bald spots add character.

Jennifer said...

I am glad everyone agrees about not getting the shots.....

I'd have to say that managing the help that I have and arranging for breaks is going to be esential this time around. I used to have to do this to get work but now I have to do it for sanity adn stamina. I am kind of in a nesting phase, organising and getting ready.

Cinema - G this is why I don't want to home school and why I like to go out for his therapy, I want to be mom and home to be home.

Amy - wouldn't it be fun to meet for coffee and cupcakes... Your girls would love Sprinkles!

Miriam ....AKA lumpy head.... lol sorry we are big on nic names around here.... ( don't worry most of them don't stick) I am going to find that mix with teh hearts in them.....Zach and cousin often do something like that on "cousin day"
I appriciate your comment about respite and Brad's answer this I might have to get into politics. I do have respite ( which is techically hours paid for my relieve) through the regional center ( it can be used in different ways, a facility , home health care nurse, my own person) but Zach is a level 4 and that makes things complicated.

There is no flexibility in the rules that govern my situation. But I do greatly appriciate the help that I do have.

I am willing to prepare for the worst and then find it easy as pie....... it happens sometimes.....LOL

Thank you for your compassion..... It's borrowed strength and I put it to good use. Thank you, sincerely.