Topic: how many parents here who have raised kids with lyme to adulthood?
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
just sorta looking for support i guess.
i KNOW i just have to live my life...and let them go...but everytime i tell newbie parents i raised them and they are doing well-i end up crying cuz i have so little interaction with them.
i remember how HARD it was to get them meds and everything else they needed.
now i am going down and i NEED...but they are gone. dont answer emails or calls or texts.
i probably should get to another shrink but no money cuz i spent so much for the weddings and trying to live near one. cuz thats what he said he wanted. but when i was there he had no time for me. couldnt even give him a b'day dinner...but he let his mother-in-law do it.
sigh. i must be crazy. poor me...poor me. so many have real problems.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
My daughter is 14 and 1/2. Time flies so fast. I don't want to imagine what it will be like when she leaves the nest
I just wish I wasn't sick and could do more with her while she is still here with me.
I have this tiny little "Motherhood" book I carry in my purse. 2 of the quotes in it are:
"A mother is not a person to lean on but a person to make leaning unnecessary?"
and
"Your children are your "babies" even if they have grayhair".
My favorite is: "I would like them to be the happy end of my story"
....Ok I'm crying now.
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
thank you. the first one is really good for me...i'll make a sign and put it up right nest to my "Be Gentle With Yourself" sign
my goal was to make them have a good work ethic and be independent and they all are. i know that should be enough.
i didnt take care of my mom when she was dying of lyme. cuz i was fighting it and raising them. by the time i found out my mom was suffering...it was too late for tx.
soooooo....they didnt see me take care of my mom...they saw me give her her privacy and independence which is what i thought she wanted...i guess thats what they think i want...but i ask for help...but they are too busy now. they really are. working on really important things...curing malaria...and more.
so its biigger for me than just them. its my mom too.
i know dr K says the emotional component is real important...i know i have to deal with it
thank you for that saying...it validates what i believed and did
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
sweet of you ap...thanks
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Nobody can break your heart like your kids can.
Mine aren't quite grown yet and have a few years left at home. But, they have made it quite clear that they can't wait to turn 18 so they can get away from us - me in particular.
Both are in total denial about their illness. They were tx before their sx got very bad, and are in remission now.
I insist they get enough sleep, take their supplements etc. You would think I was Attila the Hun by the way they behave.
Their Dad doesn't like to get into it with them, so I have to be the bad guy.
I guess I just have to be happy knowing I got the three of us through Lyme hell and out the other side. They sure don't get it.
Don't beat yourself up about the way you feel; it is a real problem. I - and I'm sure many others on lymenet - can feel your pain.
We're here when you need us.
Take care and God bless.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
thank you
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
Well I think if your children do not realize the sacrafices you made for them to get them well now, they will one day.
COngratulations to you ladies for doing such a wonderful job on raising healthy kids. Being a parent is sometimes difficult enough, but factor in lyme and it is a whole different kind of difficult. You have done an amazing job!
Posts: 747 | From Utah | Registered: Apr 2010
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posted
It is REALLY hard to raise children with Lyme and launch them into the world. It must be so hard to feel a lack of connection with them after taking such good care of them.
They may never realize the sacrifices you made - and that would be too bad - but you know you did what you had to do.
I'm so sorry that they are not here for you now when you need them.
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
when i read your epathetic (or is it empathic...you know...comments from ppl who really get how i feel)
when i read your comments just knowing someone gets it makes me well up and cry-but-i think it is a good healthy cathartic cry
i was a little embarrassed after i posted this...feeling wimpy and all and that i just should just get on with it...but maybe i have to face it and grieve it and then maybe it will be easier for me to let it go
thank you all who are taking time here. hopefully the comments will help more than me
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
It's really nice to have a place to go where people actually do get it.
I know of no other place like lymenet.
You guys are the best.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
I raised my 2 with my own Lyme, as a single parent - one has Asperger, the other has ADHD, and both have Lyme as well. There were days I got them on the school bus & lay on the sofa until they came home. I prayed to live long enough to see them grow up.
My son is 23 and lives with his dad, which is okay because his dad can support him; he is in college & works part time. He gets ornery, has fatigue, aches & pains. I don't see him much at all.
My daughter lives with me, will finish community college this spring & go on to state college in the fall, she helps when asked, is kind but she also does not feel well: ornery, headaches, nausea, vertigo, fatigue.
We live from bill to bill. I worry about my future and theirs. I worry about my health and theirs. I had hoped the Lyme Wars would be over by now, that my kids would be "healed" and healthy. I am currently relapsing as I have lost the doc who treated us all.
I am so upset & angry that my children are still suffering, as am I. How different our lives & our relationship would have been without the Lyme affecting us all. But what can we do - it is what it is.
Posts: 424 | From Connecticut, USA | Registered: Nov 2003
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posted
but yes, when I ask them to help me out, I often get snarled at: that could be their own Lyme issues, however unpleasant it may seem" grrr (
Posts: 424 | From Connecticut, USA | Registered: Nov 2003
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
OK I am touched. Having never made it to motherhood, I'm not sure I have much to offer - save for this ...
Your kids can't know how you feel unless you tell them. And it seems perhaps a little more like "self denial" (to me) than "selflessness" when you hide your feelings from them.
Ladies, this is the 21st Century. Time to self assert. If you fear that you will make them "feel guilty" to share that are are lonely, or feel neglected by them, IMHO, that would be a dose of "healthy" guilt.
I'm sure you did not raise them up to be selfish, by your acts, or by your example.
My mother? When she was well, she would have read us the riot act. I can only pray for the day when she might regain enough of her former wit, to deliver some "just desserts" to a couple of arrogant and deserving siblings ... who have moved her far from everyone she knows, at the most vulnerable time in her life.
And this, from the daughter with whom she most butted heads, determined to prove her own independence. Once I had gained it, I started to realize, just how much she had done, or had tried to do, for us all.
So please - take care of yourselves. If you need help, or just companionship, you should be honest with them and ask for it. Your kids may surprise you. But it's for certain that suffering in silence, will not change a thing.
I will pray that you receive the blessings for which your mother's hearts yearn. ... and for the day to come soon, when none of us are forced to cower and beg, for the health care we need.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
auntylynn-not sure if you are talking to me. not even sure what i wrote above. i may have said somethng to make you think i didnt let them know.
the main reason i am writing this now is i finally did ask for help.
i have hinted int he past hoping they would help.
once after major surgery they didnt get the hint until a social worker called and one came but he was so unhappy caring for me i sent him home.
this time i directly asked for help saying if they didnt help it would hurt them cuz the finances are getting messed up.
same thing. they ignored. i brought it up again and they ignored. they will call me and ask how i am...but then they ignor what i saya nd tell me what is going n in their life
anyway-just wanted to explain that-i finally am being direct but not getting results
i believe it is cuz it was so traumatic to grow up their whole life3 seeing me go thru what i went thru and then not get better...they just cannot face the fact that thaye may end up like me. i dont blame them. they should enjoy themself=ves while they can. i hope there is a cure for them b4 the bugs come back in force.
they are living very clean lives...and that im sure is helpful. they eat good and exercise.
ESG-i am upset and angry too..but try to look at it as this is my life. so far im not dealing with cancer or hiv or huntingtons or any of the other things that are worse. if you actually take time to think it is easy to find someone worse off than you. at least i can.
but i am very glad you all are here to have that "i get it" connection
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
OK Ipkayak - I did NOT understand that you had told them you need help. Now, I really don't know what to say. Your kids had/have Lyme too I guess?
What support are you getting from the community? It sounds as if you may be eligible for some help with housekeeping, or "meals on wheels."
My grandmother actually enjoyed having a girl come into her home to clean, shop, or deliver a daily lunch as she became almost a part of her "family."
My Mom too, had an home health aid to check on her drugs, or run her to doctors appointments. After a few months, Mom told me she was "a good friend," and that they would sometimes go shopping together, or just take walks.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
ESG - Since you lost your treating physician, have you posted a query on these boards to find another one in your area?
Posts: 1432 | From New Jersey | Registered: Jan 2012
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