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Our children as supporters (Read 4087 times)
Margi
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Our children as supporters
Mar 9th, 2006 at 11:33am
 
This was sent to me by a sufferer, who wishes to remain anonymous, on the subject of clusterkids. I wholeheartedly agree with this - it sucks that they have to know about cluster at all. 


"That children write poetry
  On the hell we call clusters,
Goes to show what we knew
  That this world knows no justice.

They suffer themselves from this pain made in hell,
  Watching mummy, or daddy, wrestling the devil.
Suffer the little children whose minds are so young
  And so pure that they simply share in this evil.

No child should know this thing even exists,
  Allow them their innocence of fairies and pixies.
Protect them from this world 'til they're older and bolder,
  Let's not let them shoulder our pain and misery. "
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mrs mac
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Re: Our children as supporters
Reply #1 - Mar 9th, 2006 at 6:22pm
 
margi, got tears in my eyes reading this!!!

only this morning our eldest (Andrew) said to Andy, "don't worry Dad, you'll feel better in a couple of days"

this is from a 12 year old boy, who has had to witness his dad fighting the beast far too many times (no matter how hard Andy tries to hide away, they both know what is going on!!!)

mrs mac xxx
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Daddys_Devil
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Re: Our children as supporters
Reply #2 - Mar 9th, 2006 at 6:25pm
 
On the hell we call clusters,
life as we know it shows no mercy even to those who are young.

Goes to show what we knew
That this world knows no justice.
Who are you to say if it's okay to see the reality?

They suffer themselves from this pain made in hell,
Watching mummy, or daddy, wrestling the devil.
This pain that we are put us through shows us the way through life.

Suffer the little children whose minds are so young
And so pure that they simply share in this evil.
Isn't it ture that when the mind is young, its the best place to start?

No child should know this thing even exists,
If not in knowing then where is the truth?

Allow them their innocence of fairies and pixies.
Protect them from this world 'til they're older and bolder,
To sheild is to weaken the trust and if there is no trust then what?

Let's not let them shoulder our pain and misery. "
If not now then let them feel full force later on when their not ready,
leave them to rock unsteady under the weight and the pain?


I'm 14 and I believe that just because you don't understand something the way I do doesn't mean that the way I deal with it is wrong. I have migraines,I know pain, this is my way of dealing with it. My many poems posted here are both from veiwing and presonal demons. I live my life with this pain going through school, home issues, and many other things my class mates and friends could never dream of. They think I'm dark and depressed because I'm free to express my opion the way they won't. I don't care what others think of me or my writings because thats just me. 

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GI JOEY
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Re: Our children as supporters
Reply #3 - Mar 28th, 2006 at 8:52pm
 
Children don't have to live in fear! ...EVER!  but do have to accept that what their parent is going through, is beyond ordinary!  Accepting something doesn't have to mean that you give in to it! Children of Clusterheads, as supporters, can learn a little about "unconditional love' by means of making Life a little easier for their parent.

If a parent describes to their child with fear, then the child will accept fear!
If a parent describes to their child with Love, then love and acceptance will be the only items that the child will remain with!   GUESS WHAT HAPPENS NEXT ?

... SUPPORT!   HA!  IT'S THAT SIMPLE!
-GI JOEY
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"Where ever you go...there 'we' are!" &&-Joey Howell (GI JOEY) special boy to a SPECIAL MOM (Linda_Howell) &&&&
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Daddys_Devil
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Re: Our children as supporters
Reply #4 - Mar 31st, 2006 at 6:24pm
 
You have a good point but I have to ask. I just want to know your opion. what about the kids that aren't only supporters? What about those who suffer the brain busting pain themselves? Are they suppose to ignore these demonds? And even if they are supporters, then do you think it's right that even if a parent tells their child, the child should be kept away, unable to see what this hell looks like and how it affects their parents life? Put yourself in your shoes when you frist found out about your mom's clusters. Now imagen she never told you. How would that have affected your feelings about clusters? If you didn't know that your mom had clusters, and somebody told what they were, how would you reacted? I'm not arguing I just wanted to know.
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GI JOEY
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Re: Our children as supporters
Reply #5 - Apr 1st, 2006 at 11:47pm
 
Children who suffer with CH themselves cannot ignore these demons as much as an adult couldn't.  The subject matter under this topic is concerned with children as supporters and whether or not they should be "sheilded" from what Mom or Dad is experiencing.  Your candid strength in your reply is highly plausible.  "I don't believe a child should be kept away or sheilded from a truth", and explaining to a child with Love will help a child to become a stronger individual/supporter.  I remember my first experience seeing my Mother during an attack.  I used the common sense and love that she taught me to ease her experience as much as I could!  A Child's strength is unbelievalbly fearless! ...Like yours!
Always the best,

GI JOEY
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"Where ever you go...there 'we' are!" &&-Joey Howell (GI JOEY) special boy to a SPECIAL MOM (Linda_Howell) &&&&
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Re: Our children as supporters
Reply #6 - Aug 5th, 2006 at 1:49am
 
Margi wrote on Mar 9th, 2006 at 11:33am:
This was sent to me by a sufferer, who wishes to remain anonymous, on the subject of clusterkids. I wholeheartedly agree with this - it sucks that they have to know about cluster at all.  


"That children write poetry
 On the hell we call clusters,
Goes to show what we knew
 That this world knows no justice.

They suffer themselves from this pain made in hell,
 Watching mummy, or daddy, wrestling the devil.
Suffer the little children whose minds are so young
 And so pure that they simply share in this evil.

No child should know this thing even exists,
 Allow them their innocence of fairies and pixies.
Protect them from this world 'til they're older and bolder,
 Let's not let them shoulder our pain and misery. "
beutiful...(i hate being daddy)
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Icey
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Re: Our children as supporters
Reply #7 - Sep 6th, 2006 at 1:19pm
 
Joey , I bet your mums so proud of you ! . I have an 11 yr old son and I wouldn't dream of keeping anything from him he knows about CH and why I use the meds and get upset and grumpy . When I'm having an attack he just asks do I need anything , water etc . Luckily he doesnt witness the night/early morning ones . It's not something I want him to have to see no way ! I do believe tho that you're stronger and calmer than us at times , Joey (( hugs )) from across the pond  Smiley
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Linda_Howell
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Re: Our children as supporters
Reply #8 - Sep 6th, 2006 at 2:01pm
 


   Icy,

I am Joeys 'Mum'  and, yes... I AM very proud of him.

Our supporters are indeed calmer and stronger than us at times and that is why letting them know just how much they are appreciated on an on-going basis is so important.

Thank you Icy.

Linda
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southwalessunshine
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Re: Our children as supporters
Reply #9 - Aug 17th, 2007 at 7:35pm
 
Wow!  This has been really humbling to read.  i wish you all luck and love in your struggles with CH.

I have 3 kids and when they know mum has gone upstairs as she has one of her heads, there  is a kind of time freeze and then they click into what they need to do.  my oldest girl is 14 and she gets the dinner on and sorts everyone out etc.  She can go from being a typical stroppy teen to super mum in seconds.  Even my 5 yr old has learned that he has to behave and listen to big sis when I have a head on. 
I'm lucky I have a great partner too but the way my kids deal with this never ceases to amaze me.  I feel guilty everyday that they have to live like this, although they never see me going through it as I lock myself in my room to hide it from them, they kinda know.  My kids and all you kids out there, we sufferers love how you're coping and supporting us.  Those kids out there who suffer with the pain too, I am so sorry that you have to deal with this and all i can personally do to help is offer my love and be here on this site incase someone reads a post and decides to talk to me about it.  Take care all of you x
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keep your face to the sunshine and you will never see the shadow.&&Alone we can do so little, together we can do so much.&&Walking with a friend in the dark is better than walking alone in the light.&&Helen keller
 
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Re: Our children as supporters
Reply #10 - Mar 27th, 2008 at 1:04pm
 
I agree whole-heartedly with you Joey.  I have two children, a 15 yr old girl and a 13yr old boy.  They both know I have CH's, and they have seen/heard me suffer them.  I had a kip 10 one a few days ago, and nothing helped with the pain.  I paced, screamed, hit my head on things, and even yelled at my cat because it got in the way of my pacing and I stepped on it's tail. 

My son asked if I needed anything, to which I replied "Just leave me alone" very grouchily. 

My daughter asked me why I was banging my head into the wall, and I told her because it hurts.  She just looked at me for a minute like I was crazy, and then asked if it helped.  I told her I don't know, I just don't know what else to do. 

The next morning I appoligized to both my children.  I told them how sorry I was that I was so grouchy.  They both looked at me and said that it was ok, that they knew it wasn't really me talking, it was the headache talking to them.

I don't see how to hide these headaches from those who live with you and love you unconditionally.  I mean they affect so many things about your life.  The CH's affect where you go, how long you will stay, and even pop up every now and then unexpectedly.  We can't shield our children from life, and we all know how unfair life is.  What we can do is to be there just for our children to tell them that even though we may be grouchy during an attack, that we love them for wanting to help us, and  that we are so happy to have their support.
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badboy.10k-ch34yrs
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Re: Our children as supporters
Reply #11 - May 15th, 2008 at 1:24am
 
My shining   SON.                                                                                                       Were where you when I was burned and broken?                                                                                                   While the days went by from my window watching?                                                                                                 And were where you when I was hurt and I was       helpless? Because the things you do and the things you say surround me. While you where hanging youself on someone elses words, die-ing to believe in what you heard. I was starring straight into the shinning SON.  Lost  before and  lost in time. While the seas of life and the seeds of change are planted. Outside the rain fell dark and slow. While I pondered on this dangerous but irristable past time. I took a heavinley ride throuh our silence. I knew the moment had arrived. The killing the past and coming back to life. I took a heavinley ride throuh our silence, I knew the waiting had began- and I headed straight into my shinning SON!                                                                                                                         I LOVE YOU SON!  Happy 16th birthday.
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George
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Re: Our children as supporters
Reply #12 - May 15th, 2008 at 1:34am
 
badboy.10k-ch34yrs wrote on May 15th, 2008 at 1:24am:
My shining   SON.                                                                                                       Were where you when I was burned and broken?                                                                                                   While the days went by from my window watching?                                                                                                 And were where you when I was hurt and I was       helpless? Because the things you do and the things you say surround me. While you where hanging youself on someone elses words, die-ing to believe in what you heard. I was starring straight into the shinning SON.  Lost  before and  lost in time. While the seas of life and the seeds of change are planted. Outside the rain fell dark and slow. While I pondered on this dangerous but irristable past time. I took a heavinley ride throuh our silence. I knew the moment had arrived. The killing the past and coming back to life. I took a heavinley ride throuh our silence, I knew the waiting had began- and I headed straight into my shinning SON!                                                                                                                         I LOVE YOU SON!  Happy 16th birthday.


It's a good thing, isn't it?  But difficult.

Happy 16th to your son...and welcome to CH.com.

Best wishes,

George
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Re: Our children as supporters
Reply #13 - May 18th, 2008 at 3:17pm
 
badboy.10k-ch34yrs wrote on May 15th, 2008 at 1:24am:
My shining   SON.                                                                                                       Were where you when I was burned and broken?                                                                                                   While the days went by from my window watching?                                                                                                 And were where you when I was hurt and I was       helpless? Because the things you do and the things you say surround me. While you where hanging youself on someone elses words, die-ing to believe in what you heard. I was starring straight into the shinning SON.  Lost  before and  lost in time. While the seas of life and the seeds of change are planted. Outside the rain fell dark and slow. While I pondered on this dangerous but irristable past time. I took a heavinley ride throuh our silence. I knew the moment had arrived. The killing the past and coming back to life. I took a heavinley ride throuh our silence, I knew the waiting had began- and I headed straight into my shinning SON!                                                                                                                         I LOVE YOU SON!  Happy 16th birthday.

I love that song Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register;  here it is with the music
I hope your son had a great birthday
PF wishes
b
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"Be who you are and say what you feel...Because those that matter....don't mind....And those that mind....don't matter." &&&&&&Man is what he believes.  Anton Chekhov &&&&Unless you believe, you will
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Re: Our children as supporters
Reply #14 - May 18th, 2008 at 11:50pm
 
no-one wrote on May 18th, 2008 at 3:17pm:
I love that song Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register   here it is with the music
I hope your son had a great birthday
PF wishes
b


Hey!! What can I say LOL.... Wink
Floyd has music for every occasion!!

Hey b, nice to see you. Hope you're well.
When are you going to change your screen name to "some-one", or "number-one"?

BobW
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Re: Our children as supporters
Reply #15 - Jul 1st, 2010 at 12:39am
 
Hi!  I am new to this site.  I am not a sufferer myself but my boyfriend is.  I have known him for four years and we have been dating for one year.  When his CH's started again a few months after we began dating.  He told me that my daughter and I should not have to deal with his issue.  To make a long story short, I fought to convince him that the CH's did not matter to us.  I think what finally convinced him is that one night I was trying to explain to my daughter who is nine exactly what we were dealing with.  She sat there and listened to me quote all of the research I had found online and said nothing.  When I was done she told me that it didn't matter we loved him, not his headaches.  She told me that they were not important, it was the person that mattered. 
When I told him what she had said, he couldn't believe it.  Now he does.  If he has a Ch and she is around, she will make sure to turn off all the lights(sometimes this helps) and will sit on the couch with him while he uses the tank to make sure he is OK.  He even lets her sit with him and most of the time still won't let me.  He prefers I go in the other room during an attack.   
I guess the point of all this is that children sometimes have more wisdom than the adults in dealing with this.  If they are allowed to, they can be a source of comfort.  The best way I have found is to be open and honest with my child in what this disease is and does to those who suffer from it.  One of the best results from how my daughter deals with this is that it has made him not try to hide what he is dealing with.   From what I can gather, the headaches have been a major issue in past relationships.  Both myself and my daughter try really hard not to put pressure on him when plans change because of an attack.   I think this is key for any supporter to keep in mind - even a child!
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Re: Our children as supporters
Reply #16 - Jul 1st, 2010 at 6:27am
 
Shell wrote on Jul 1st, 2010 at 12:39am:
Quote:
Hi!  I am new to this site.  I am not a sufferer myself but my boyfriend is.  I have known him for four years and we have been dating for one year.  When his CH's started again a few months after we began dating.  He told me that my daughter and I should not have to deal with his issue.  To make a long story short, I fought to convince him that the CH's did not matter to us.  I think what finally convinced him is that one night I was trying to explain to my daughter who is nine exactly what we were dealing with.  She sat there and listened to me quote all of the research I had found online and said nothing.  When I was done she told me that it didn't matter we loved him, not his headaches.  She told me that they were not important, it was the person that mattered. 
When I told him what she had said, he couldn't believe it.  Now he does.  If he has a Ch and she is around, she will make sure to turn off all the lights(sometimes this helps) and will sit on the couch with him while he uses the tank to make sure he is OK.  He even lets her sit with him and most of the time still won't let me.  He prefers I go in the other room during an attack.   
I guess the point of all this is that children sometimes have more wisdom than the adults in dealing with this.  If they are allowed to, they can be a source of comfort.  The best way I have found is to be open and honest with my child in what this disease is and does to those who suffer from it.  One of the best results from how my daughter deals with this is that it has made him not try to hide what he is dealing with.   From what I can gather, the headaches have been a major issue in past relationships.  Both myself and my daughter try really hard not to put pressure on him when plans change because of an attack.   I think this is key for any supporter to keep in mind - even a child! 


Our Kids sure can be a great source of comfort whilst dealing with this crap. Every birthday my little man would wish that my headaches would dissapear while blowing out the candles on his cake. Thanks for sharing that little story Shell.


Lefty
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Re: Our children as supporters
Reply #17 - Jul 1st, 2010 at 9:47am
 
Great point Shell and well put. Even a job as insignificant as turning off the lights gives her SOMETHING she can do to help with the attack. Much better then feeling helpless and just trying to stay away from everything.

That being said, the person you're supporting, have they logged on here yet? Just wanna make sure they has the most up to date tactics to keep the beast at bay. Bless your heart for sticking by him, we say it a lot around here our supporters are worth their weight in gold. Smiley

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Re: Our children as supporters
Reply #18 - Jul 2nd, 2010 at 3:20am
 
He has not logged onto this site as of yet.  I know he is aware of it because when he first entered a cycle when we began dating, I went online and did a bunch of research and then talked to him about it.  He knew of this site.  I think he was just tickled that I was willing to learn about this. 
I fessed up tonight about joining the site and he was surprised and shocked in a good way.  I told him all about the two posts I made and some other research I have done recently.
He offered to take me with him to his next appointment with his headache doc(he has a special one he sees here in the Phoenix AZ area for CH).   I told him - OF COURSE I'LL GO!!!!!   And I'll have a list of questions ready for the doc!
This is a huge step forward for him!!!
I mentioned tonight about how he won't allow me to sit with him while he uses the tank but will let my daughter.  We ahd a really good discussion about it!  I postulated that there might be feeling ashamed letting me help since his ex-wife and previous girlfriends may not have been very supportive so he may be viewing me in the same light.  This is a huge step forward since my biggest issue is that he won't allow me to help.   With being a mom, I have this urge to try and alleviate his suffering even if all I can do is be supportive by being there as a witness.
We are hoping that this latest cycle is peaking.  However, it has changed from th "norm".  He is experiencing nausea for the first time and the headaches are lasting longer and waking him up.
Since he also has sleep apnea and uses a CPAP, this is a double whammy for him.  About the only time he does not have a headache lately is on the weekends when I stay over .  Unfortunately, this still affects his sleep since I have a positional sleep apnea and I snore anytime my head is not positioned on my pillow correctly, which keeps him up.   You can guess why he has no headache then!  I have definitely noticed a pattern.  We are still working on this hypothesis and if he follows through on letting me go see the doc with him, I will definitely be asking the doctor! 
I think the biggest problem has been convincing him that I am here to stay despite the beast!  Progress is happening but it will take time!  After all so many have failed him in regards to dealing with the "beast'!
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Re: Our children as supporters
Reply #19 - Jul 2nd, 2010 at 9:50am
 
It might not be entirely the shame thing....when I'm getting hit I'm still a hider! Christy has been with me 30 years and she knows not to take it personal when I go hide in the garage, back room etc.

The open lines of communication are critical. I used to hide every aspect of my CH from Christy, kept her totally in the dark. I realize now what a crappy thing that was to do to her and how badly it must have scared her to be kept so out of the loop. Especially since she's the one that found this board for me! Wink

I'll say it again. you sound like a kick ass supporter. He's danged lucky to have you.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Re: Our children as supporters
Reply #20 - Jul 2nd, 2010 at 11:09am
 
Joe,

Thanks so much!  We try really hard to communicate.  Part of this is just who we are and partly because both of our ex's did not.  Both of us really appreciate having the open lines of communication. 
I do think that part of it is that he does feel ashamed.  When he had a cycle start up right after we began dating, he kept telling me that I shouldn't have to deal with it.  Part of it is just wanting to crawl into a hole and lick your wounds so to speak.  I know when I have gone through my own issues, I tend to want to isolate myself and not deal with anyone.  Especially since about the only thing you can do at that time is to try and survive the pain.   I can only imagine what you guys go through!
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CH version 14.0.1 member
since 2005 aka GingerS224


Posts: 1299
Wilkes-Barre, Pa (USA)
Gender: female
Re: Our children as supporters
Reply #21 - Jul 2nd, 2010 at 7:38pm
 
I have two children a daughter 26 and a son 21 as most of you know my son knows pretty well what I go through since he was diagnosed with Migraines at 2 years old.  He has been a blessing in more ways than one and has helped get me through some pretty nasty CH hits. 

My daughter on the other hand doesn't really know what even a migraine feels like and pretty much wants to stay the hell away from me when I have a CH hit.  Not sure if it's because she's been the cause of a few nasty CH hits (she has a tendency to 'forget' that the perfumes she likes gives the beast the fire needed to sere my brain at times) or because it just freaks her out. 

All we can do is love them and try to explain it to them, but sometimes they are just like all other Non-Ch sufferers/survivors and just plain don't get it.

Neither of my kids enjoy seeing me that way needless to say, but I just wanted to point out how two kids from the same family deal with the issue.
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