I've just been feeling down lately

Kathie · 08-06-2002, 04:51 PM

I thought it was because of the unusual heat but it's cooler today.

I guess it's just because I have so much pressure lately. Nathan is growing and getting so heavy that he's getting harder to care for, he has cerebral palsy in a wheelchair.

He needs complete care--he's incontinent but he can feed himself--I have to cut his food into small bits.

He also seems to have so many medical problems--psoriasis that just seems unmanageable-seizures that are under control for now. And so many kinds of braces and walkers and etc...

I have to wait and see if he still has seizures--so we are letting him slowly grow out of his medicine.

I'm going to try to talk the Dr. into keeping his dilantin in working range until after his 15 year growth spurt-but I don't know if she will agree.

I'm always getting hounded at school about his eyesight--I've taken him to dozens of Drs. Sometimes I say "What am I supposed to do??"" They always think we can "find" an answer for his eyesight. It appears that his central vision is damaged and he uses his perifrial vision.

And of course he hasn't been disciplined as well as the other two--so he is more than happy to throw the biggest fit you've ever seen if you can't find the toy he wants.

And my cat died--and I'm about to have my house reroofed--a lot of money to worry about--if I've made any bad choices I loose a lot.
I hope I picked the right contractor and he's really honest.

And school's been out a while--so I'm kinda housebound...

Hopefully I can stop complaining now--I know a lot of you are just as stressed as I am.

TennGirl · 08-06-2002, 06:10 PM

Kathie, I wish I had some advice for you, but I don't. I just wanted to let you know that I'm thinking about you! Hang in there (easier said than done, I know!), and don't forget to take care of YOURSELF.

Lendi · 08-06-2002, 09:53 PM

It sounds as though you could really use some time for yourself. Anyone able to give you some relief if only for a little? I know this isn't much help, but summer is coming to an end soon. Hang in there. In the mean time, hugs. Lendi

Kathie · 08-07-2002, 10:19 AM

Thank you girls for your thoughts. They are really appreciated.

Lendi- I do get some help. Nathan goes to ARC two days a week, and somehow they make it cheap for parents--$6.00 a day. They have good people who are patient and kind taking care of the children so there is less worry. That gives me shopping days and mowing days (if it rains-we're having a drought). But there still is the worry that the children may hurt each other. Some are hyper, one is autistic and you're not really sure what his mind is interpretting. One day he attacked my son on the bus and had to be escorted off the bus. I guess he just has bad days sometimes. It's hard to tell what is going on--it could be an annoying sound or blinding light or anything like that as these children often aren't able to express their needs.

And my hubby does his 50%. Really it is a joint effort for us.

It would be so much better if we got help from our parents but we don't really.

I think part of my problem is about 2 1/2 years ago I got surgury for Nathan. He was in a body cast from his arm pits to his toes for 8 weeks. Then we started intensive therapy so maybe he could learn to walk. I fought for more therapy at school and I took him after school. After all this time there is so little progress and I'm just exhausted and I feel like I failed even though I've done everything known to medicine for him. He can't even take one single step by himself. I'm trying to adjust to letting go of almost all my hopes and go with the flow. I just can't change this.

He really can't learn--he can't even add 2+2. He's been struggling to learn to read-which I'm glad about, but he is maybe at 2nd grade level. He is good at reading people's moods and saying sweet things.

My sons physical therapist has been trying to help me adjust to letting go until Nathan wants to really try. He's spoiled and he's used to being taken care of. He has to want to walk sooo bad that he will work tirlessly for it. But it does seem like he has worked tirelessly...it just apparently can't work for him.

I got him a state of the art power chair--it's front wheel drive--but all it causes is problems for Nathan because his caregivers are so uncomfortable with it. You have to turn the knob to the right to go left and vice versa. So Nathan has also had a lot of trouble learning it. And it looked so good in the catalog!

It's really hard.

Lendi · 08-07-2002, 11:52 PM

I'm glad you have some support, Kathie. Nathan sounds like a sweetie. I know that you are tired, but can also tell you love your family. You are a good person. I hope life will bring you some flowers soon. Hugs Lendi

taah · 08-08-2002, 05:38 AM

Kathie,

I just wanted to say that you are such a warm and caring mother,, you can tell so much from the words that you love your children. I want to let you know that you are an inspiration to us all. ((((((((HUGS))))))))) to you. I also think you deserve some pampering very soon... I hope you get it.... You are in my thoughts.... hang in there girl.. you are a strong woman....we are here for you when you need to talk...

TERRA