As the title of this post goes...can someone please just let me have it!! I need someone with this disease to tell me how bad you actually feel during a hellacious herx and then tell me how rotten I am for sending my son to school two days in a row with one. I am under threat from the almighty attendance police, and I KNEW he was not well enough to go again today--but I sent him. He's now home, barely able to walk and I am sobbing with guilt. How could I let myself get so intimidated? This is my son!! He looks so bad. SO--I need a good lashing about standing my ground and never doing this again when he can't make it. C'mon--I need it and I can take it.--laurie, (Mark's protector???)
Dear laurie,
You need to stop beating yourself up over this school business. You have been Mark's most steadfast champion in this fight of his life. Sometimes when people treat me as though I'm just fine I almost want to wish this on them for just one day. I know that's not very nice but if I can handle over 4 years they can handle one day. Unfortunately that's not how it works. Once you get it it's hard to get rid of, we all know that. Just a suggestion, have you ever thought about home schooling until Mark's ready for the full time thing. I really would hate to deprive him of his friends but hopefully he would be back in school on a full time basis before you know it. As I said just a suggestion. It might take the pressure off you and him for a while.
I just feel like someday he may opt to become a doctor for Lyme patients because of what he's been through. Then again I hope there's a cure before he's old enough for that. Hang in there, you're doing a great job!
betterdaysforme
Laurie, listen you are doing a really great job with a really difficult situation. There is no easy answer and no matter what choices you make you will have some trouble in it either way. You can't make this right for him and you can't make it work out. The situation really warrants a good long cry, so you are entitled. Remind yourself that, as his mom, it is not your job to make things right or even good for him, it is simply your job to guide him through this imperfect, disease ridden world with all the love that you can give him. You're doing that.
I don't know you, but you sound like a person who wants to take the burden on herself if things are bad and somehow make them good. Release yourself. You are doing all that a human being can do, and you are the best mom. You're great!
Mark is sick and he has a sucky school. That is not your fault.
Last Friday night I sat in a lump on the floor and cried my eyes out with all my might. Absolutely sobbed like an infant for a long, long time. My whole body was moving up and down and I had snots coming out of my nose. I didn't care. I'm disappointed about what lyme disease has done. I know you are too, it's okay.
Give Mark a hug from all of us. We love him and you too.
Thanks guys! I am beating myself up and I do want to make it all go away. I pray every day it was me instead of him. I am so sorry sleeper---I know how you feel because I feel that way exactly for my son. I am in such an emotional state right now-anger, frustration, guilt, sorrow, you name it. My head hurts SO bad. Crying will do that I guess. I am expecting a call as early as today from the superintendants office who I cried to his secretary for a half hour this afternoon. She was very sympathetic and said this needs to be taken care of by the superintendant. They were all in some principals meeting today so I am waiting. i do not want to home school--I would suck at it. Plus Mark loves school and is very social and most of the time is well enough for school. It's just these bad times I have to get thru with him and the attendance thing. I'm hoping that gets resolved tomorrow but even if it doesn't--i am not going to be scared to not send him. He just looks so bad and says he is not tired--just very weak. Does that make sense to you all? His joints hurt and he is having shocking pain as well. His eyes are red and very dry as is his throat. His face looks like you took a dark purple marker and drew on dark circles! I just want him to be ok and I am so scared he never will be. I'm scared the lyme is going to kill him. I'm scared the abx will kill him. I'm scared he will have kidney, liver, heart failure all the time. I don't share any of these fears with anyone. I'm miss positive and strong informer of Lyme to everyone I talk to, but inside I am terrified. I feel like he should be in the hospital getting all body systems checked to make sure and I'm mad that it cannot happen that way b/c no one here listens to us. I hate this disease. i have never hated anything this strong and I want to be able to clutch it and rip it apart and make it suffer a horrible, painful death. It's just so frustrating that I can't. Thanks for your support. PLEASE write how bad you all feel at your worst. I do not want to make you relive--but I NEED to hear it so I can know more how he feels. He can articulate as well as any 8 yr old--but he is only 8 and you guys could help me with that part. Thanks.
(((((((((((((Laurie))))))))) Lots of hugz going out to you. It's tough enough to be a Mom but to have a child with Lyme, there are no words for the thick skin and steadfastness in setting priorities necessary every day!
To me, the first priority is Mark's health. If, with all the co-ordinating you've been doing, you can get an explanation of the limitations of the disease AND expectant prognosis i.e. "unexpected periods of intense pain and exhaustion and lack of concentration" from the doc sent to them, and clarify with them exactly why the school believes there is a problem with his unexpected days off, hopefully, he can continue to keep his grades up and complete the work (if someone can bring it home for him) and there should not be a problem. (she says, hopefully!)
Being a Mom is the most challenging responsibility there is. Just keep taking deep breaths, write down your stressors and what you want to do about them (realistically, lol, no strangling of school members!) and perhaps consider half days of school for a bit when he's having bad days, but good enough to not stay home???
Just a few thoughts....and stop beating on yourself!
Last edited by outinthe_woods; 02-08-2005 at 02:13 PM.
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