Dad, I don't like how .....

[timer lady]

mom looks right now - it scares me. wm has been telling husband this every day this week now. "She looks like she's going to die or something".

He asked me yesterday if was I going to look better on the day after Christmas when we open gifts together. "I don't like how you look anymore". Foster mum pulled wm off the phone at that point.

My health situation has be discussed in therapy with both of the tweedles. The changes have been explained to them as best they can understand given their age & such. wm, doesn't see me on a real regular basis as does kt, however we talk on the phone. I expect that therapist will want more appts together to help wm get more acclimated to what is going on with me.

wm finally shared with husband that he doesn't want to see me this way anymore. He'd rather I don't visit. :crying:

I have to say, I'm not real excited over the changes in my body - my looks over the last 6 months. The prednisone has raised havoc with me, my weight. This syndrome has done a number on my ability to walk & talk - there is facial drooping, scarring from shingles, one eye that won't stay open, I have very little hair left & I'm moon faced, Heck, I hardly look at myself in the mirror anymore.

However, to refuse a visit because of the changes in my body didn't go over well with me. In fact, it put me in an awful mood - made me feel like a leper.

I didn't hear husband's response as I left the room in tears. I've spent the majority of the night painting - needed something therapeutic to do with myself. :painter:

I appreciate the ear this morning - just needed to get this out of my system.

 

[smallworld]

Linda, I'm so sorry. I can only imagine how deep wm's words cut. But it sounds to me as if he's speaking from a place of fear and love for you rather than intent to hurt you. I hope the team is able to help him come to terms with what has happened since you became ill. He seems like a very frightened little boy.

Hugs going out to your bruised mommy heart this morning.

 

[meowbunny]

I'm with SW. It is hard to see someone you care about physically deteriorate. It is even harder when you don't see it happen gradually. I'm sure wm is hit anew every time he sees you and it shocks him. That has to be hard on him and, of course, he's at an age where everything is ME anyway. Given his history, it is even more ME.

I'm sorry you are going through all of this -- the separate households, the illness -- all of it. You don't deserve it. Your children don't deserve it. I hope things get better soon.

You'll have to take pictures of your midnight artwork and post it. Would love to see some of your work.

 

[Hopeless]

Just sending you HUGS to all in your family as you deal with these changes. I am sure it is very hard on all of you. I do believe what the others have said, wm didn't mean the words to hurt you, he said it because he is very scared and frightened for you.

 

[Wiped Out]

Oh Linda,

None of this is fair. I'm sorry for wm's wounding words. I agree with the others about him saying it out of love and fear but I'm sure that doesn't help. Hopefully through therapy wm will come to a better understanding. Many gentle hugs and prayers for you my friend. :angel:

 

[mum2JK&TH]

I agree with SW as well but it doesn't make the mommy heart feel any better. Maybe he just wants to keep you the way you were before you got sick and he's not able to deal with it. It's like you said that kt has been there to see all the gradual changes, wm didn't get that so it must have been a big shock.
I hope he smartens up non-the-less.

(((HUGS)))

 

[jannie]

Hi Linda-
I'm so sorry you're feeling this way. I agree with what sw said...wm is just speaking out of fear..he's scared to see his mom this way. I know he's not meaning to hurt you--he's worried about your future. Sending hugs--

 

[nvts]

Love and fear, love and fear! Wm is confused about the difference in appearence.

It's kind of nice in a way. Here's a kid who's 13, in no way shape or form politically correct (try living in a house with 2 aspies - social graces? yeah right! difficult child 2 let's me know every once and awhile that he's "sorry you're fat, Mom!), doesn't see you on an everyday basis, most likely hears that you're feeling a little better, and then expects you to be the same old person you were before.

I don't know ANYTHING about Reactive Attachment Disorder (RAD), but isn't it an attachment disorder? Doesn't this kind of indicate that he's sort of getting through a wall if he's worried? I don't know, anyone who undertakes as much as you have and has endured as much as you have can't be anything less than beautiful, radient and pure.

You may not be happy with your appearance, but you're soul is stunning!!

Merry Christmas and a pure and healing New Year!!!

Beth

:xmasdec:

 

[skeeter]

Linda - I'm sorry.

When we (back in the late 70s) had to put my grandmother in a state run home (long story), my mom and my grandfather visited her at least 3 times a week. My aunt (mom's sister) would hardly visit at all. It wasn't for lack of love, it was because she really couldn't stand seeing my grandmother in that shape.

Some people can "handle" when others are sick, others can't. With all of wm's other problems, it doesn't surprise me that he's one that can't. Some people can manage to "pull" themselves above that and still visit, knowing that the person needs them. Others can't. I've seen it with cancer patients, too - people that have no problems visiting, others that just cannot.

Try (I know, easier to say than to live) to not take it personal. Or rather - take it as wm saying he's scared, and in order to not be scared, he doesn't want to see you as you are now.

 

[LittleDudesMom]

Awww Linda,

I agree with what the others have said in regards to wm. No only does he not understand, but he also just doesn't get what has been going on. Kt, husband and you have lived and breathed it. Wm has just "heard" and seen you what, a couple times?

So add his suprise to his inability to "get it" and it's a perfect mix for selfish words and making it all about what makes him comfortable. It doesn't register with him that he is breaking your heart.

I am so sorry Linda. I know this hurt you so much. Many hugs to you this morning.

Love,
Sharon

 

[Janna]

I'm really sorry, Linda :flower: Maybe he needs more time to soak it all in, so to speak, and accept the situation for what it is.

Sending hugs to your hurting heart, my friend.

 

[gcvmom]

OUCH!!! That would hurt me, too :frown: Bad enough you have to deal with your illness and the pred side-effects without having to suffer his un-filtered comments about your appearance. I don't know a lot about your difficult child, or if he's capable of empathy, but maybe someone could gently explain the concept to him? And maybe someone can coach him for your next visit? Even if he doesn't have an empathetic bone in his body, faking it is a life skill he would do well to learn.

{{{{{Hugs}}}}} to you!

 

[Dara]

Linda, I am so sorry! All I can offer is hugs for you. I hope you are able to have a good holiday and that you feel well!
Again sending hugs and good thoughts your way!

 

[flutterbee]

Linda,

I know it hurts to hear those words, but I think it's a pretty normal thing, not a Reactive Attachment Disorder (RAD) thing, although I'm sure the Reactive Attachment Disorder (RAD) makes it harder for him to come to terms with - adds a whole new level of fear and insecurity.

I was in the hospital 3 times this year and we didn't let difficult child come visit because I knew she wouldn't be able to do with it. It would kick her anxiety into high gear and she would start with the cards (again) on how she hopes I never die. I did talk to her everyday, but we all agreed it was best if she didn't see me. That was hard for me as after coming so close to dying, all I wanted was to hold my kids. easy child visited me on my third hospital stay and with all the wires (heart monitor, blood pressure cuff, oxygen, iv) and the monitors beeping when my pulse dropped too low, etc, he was obviously distressed and he's a neurotypical 16 year old. He only visited for less than an hour and it was obvious that he couldn't wait to get out of there.

Heck, the first time I cut my hair short my kids were 4 and 8 and they both cried.

In the eyes of a child, the parent is supposed to be invincible and anything that shakes that perception rocks their world.

He's not rejecting you. He's afraid of what will happen to him if something happens to you.

But, I know it still hurts. Deeply.


(((((hugs)))))

 

[timer lady]

Thank you for the gentle reminder. I look at my 13 y/o son & have to remember that his chronological age & his emotional age are 2 very different matters. And given that, he is still a very confused scared young man.

There are just days, ladies. Days when a word spoken or a deed done is just one too many & the system cannot handle it. I believe Friday & Saturday were those days for me this holiday season.

Thanks for the hugs & encouragement. It's always appreciated & greatly needed of late.

 

[Ephchap]

Awww, Linda, I too am so sorry that his words hurt you. I can't imagine how that cut through your mommy heart. I was also thinking, as mentioned above, that it does show his emotions are breaking through the Reactive Attachment Disorder (RAD) wall - he's truly worried about you, and it hurts him to see you like this.

Sending mega hugs your way, and Christmas wishes to you and your family,
Deb

 

[rejectedmom]

Linda several years ago I had cancer on my face that caused me to have many hours of reconstructive surgery, I look very different as a result and still have very noticable scars. My family would say things they thought I should hear but it only hurt. Yes the family members are affected by what happens to us but we are the one it is happening to. At a time when a person is in need gentelness anything less can be devastating. While I agree that William probably didn't mean to hurt you, I understand that he did and why you feel and reacted the way you did.

You do not have to always "be the mom". You personally do not have to make William understand your illness. Let the caretakers do that. Tell them to inform William that he cannot say those kinds of things because it hurts you and that to continue now that he is aware of it's effect on you would be mean. If he continues to upset you then stop your visits. He is being taken care of you are not. The stress of the Tweedles has got to have factored into your health. You have given and done much for them and you continue to be dedicated to them. If you do not take care of you first then you will not be able to do for them.

-RM

 

[Star*]

Linda -

The reality of it for him is that somewhere in his mind - whether he realizes it consciously or not - he's already lost a birth Mother and now to see you as you currently are may make him feel like he's going to have to deal with loosing you - HIS REAL Mom.

Not seeing you doesn't mean he loves you any less. I think it's just a natural defense mechanism he's having to do to cope.

The fact that you can still sit and talk about how you are falling apart with such grace and humor speaks VOLUMES about what a lovely heart you have. If I were sight impaired, I would only have your behavior and words to go on - and that being said - I think you are beautiful.

Hugs
STar

 

[Marguerite]

Linda, this hurts. But hold on to the knowledge that wm was not trying to hurt you, he's just a scared little boy who wants his mother back the way he remembers. kt has lived through the changes (and you know how it has still upset her) but wm has not.

I was concerned that foster mother pulled him off the phone when he was asking if you were going to die. That is NOT how to handle a kid's anxiety. It would have left him with the fear that maybe his question was too close to the mark, as well as sending him a clear message that he is not permitted to discuss his fears, so as a result he will bury them. It is also teaching him that the way to cope with these fears is denial. And part of that denial is to not have to look at the physical reality (ie "please don't visit, because when I look at how your illness has ravaged you it makes me afraid for you.")

Yes, he does nee to go through this with his therapist, but some guidelines need to be put in place NOW for how to more appropriately handle his questions and his fears.

I remember easy child asking if I was going to die. She also found it hard to believe me when I said that although doctors couldn't stop the progress of the damage to my body, they could tell enough to know I was not in danger. I might be weak, ill and unable to do much, but still not in danger of dying.

Some well-meaning people can do a lot of damage. Someone at church, unknown to me, took easy child aside and together they prayed that I would be healed. I was very angry when I found out - to give a child that sort of hope has a flip-side - when I failed to be healed, she blames herself for not having enough faith, or 'not having prayed right'.

And a similar thing happened with difficult child 3 - a different person this time, took him aside and together they prayed that his autism would be healed. THAT sent him a message that his autism was something bad, something to be gotten rid of at all costs (when I had been teaching him that his autism was an important part of who he is and I love him as he is, with the special talents he has as well as the problems which we work on). And again, failure was taken personally.

We need to be honest with our kids. Even the more emotionally fragile difficult children need truth. Yes, it has to be given in a way they can handle, we shouldn't be too blunt. It is always possible to put a positive spin on something as well as telling the basics without the full gory details. But sometimes, if all there is left is gory details and they insist on knowing, we should do them the courtesy of being honest. In the long run it is the better option, because at least they will trust the people they love.

If you want to raise a child to be truthful, you must be truthful with that child. We can't hide the truth from a child and then chastise that child when she lies to us.

Linda, you've had a really tough year. Wm has uttered the reality and also said how he feels about that. He is being honest about his feelings. As you said yourself, it is nothing you don't already feel yourself. He needs to be praised for his honesty but at the same time shown that it is hurtful to make such requests, and at the same time will not help him in the long run. He has to learn to cope with life's changes.

When I was a little girl my favourite oldest sister went away overseas. This was back before people caught planes everywhere - plane travel was too expensive - so when you went overseas, especially from Australia, so far from anywhere else, it was for years. We didn't know when she would be back and she had been a second mother to me.

Four years later she returned. In the meantime she had got married (so I had to share her), had seen a great deal, had developed an accent that was a mixture of Canadian and English, had changed as a person. So had I - I was no longer six years old.
We went to the airport to meet them - because she had married an Englishman, she was no longer an Australian citizen and was having to emigrate back to the country where she had been born.
We waited in anticipation and when she and her new husband were walking across the tarmac with everyone else, I found it hard to accept that that figure was my sister; I kept looking past them for the person I remembered, hoping she was still waiting to get off the plane.
My sister had changed as a person too. Her marriage was not the best and she was brittle, temperamental and the patience I remembered had gone. Her husband made it clear to me that he didn't want an annoying little sister-in-law hanging around. And my sister let him say that to me.

Where was my sister? I wanted her back but I did know that this person too, was my sister and I had to just accept her as she was now, and accept the change.

Wm is being allowed to continue to live in a dream world where everything is fine. He needs to be allowed to see the reality, be made to embrace it, actually, if he is going to be able to grow later on as a person. To shelter him so much is doing him a disservice.

And I know it's not you sheltering him, but the system. Some sheltering and support is clearly needed, but he has to be allowed to learn, especially when he is asking questions. He needs the truth, he needs to learn to accept changes (especially those we can't prevent) and he REALLY needs to learn tact.

Letting all this slide, is not healthy for him. The child is not in isolation, here, he is part of a family which has endured a great deal and ALL of it needs to be considered in the bigger picture.

Sometimes I would like to get all the therapists, fosters, docs etc who only consider the child in isolation, into one big room and bang their heads together, to knock some sense into them.

Marg

 

[Hound dog]

Linda

I know his words hurt. But I think Star hit it on the nose. I believe wm loves you and is afraid of losing his real Mom. Not wanting to see you is a defense against your illness. If he doesn't see you he can pretend that you're not really very sick at all, nothing to worry about.

In an odd sort of way it speaks volumes for how much this child loves you and cherishes you. And I know that a severe illness in a parent can bring about the same type of reaction in a easy child child as well. Plus, he doesn't see you as often, so the changes in your are much more profound to him than others who see you every day or on a reg basis. Bound to hit him a bit harder than kt on that score.

((hugs))