I NEED YOR HELP

• By Kate1
• Posted April 10, 2008 at 9:03 am

Hi, Tricia. I feel so badly about what you and your daughter are going through. GP and these other GI problems are so difficult to deal with, and I can't imagine how it must feel for an 11 year old! I'm glad that you are taking her to a counselor. Hopefully she will open up to the therapist over time (if not, there are others out there- it can take some time to find the right match). Is your daughter able to get out much these days? How limited is she by her symptoms? If she's able to, it might help if she can get out for some fun age-appropriate activities, either with friends or with family (even just to go to the movies). She may not be ready for it yet, but when she is, it might really help. And what about hobbies at home? Does she read, draw, paint, knit, or do crafts? Activities like this could really help if she's open to them and doesn't do them already. Keeping a journal may also help her express her anger and frustration.

I don't want to overwhelm you with ideas, but I do have a few more thoughts. If you'd like to get in touch, maybe we can talk more. Good luck. I wish the best for you and your daughter.

Kate

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• By Lee3
• Posted April 10, 2008 at 10:14 am

Tricia...I am so sorry you are both struggling through this. TPN, loss of food, loss of control of her body, fear is she going to die ( though often kids won't say it outloud) and helplessness in the face of an illness that takes so much... I wish you were closer by. I have started an Oley local support group where we live for those on TPN and tube feeds . It so helps to connect others. Last night we had a meeting with 7 kids present of whom 4 were either tube or TPN fed. Anyway I will ask my daughter to send off an email today if possible we are heading out of town to two doc appts but hopefully she can send a short note.
We have our moments too, which often end with both of us in tears, holding each other and me reminding her that although life is not fair, God did not promise fair, we are not alone and I love her dearly and am doing my best to help. Some of this I think just has to be gotten off the chest at times and sometimes the only way kids can find a way to do that safely is to blow up and say lots of nasty stuff to mom...Its a bit rough on us mothers..but in its own way also reflects our kids knowlege that mom is safest to share their anger, sorrow, fear..
Hang tough, hugs,
LeeAnne

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• By Peggypeg
• Posted April 11, 2008 at 6:09 am

Hi!
Firstly so sorry to hear of this situation.

All this horrible lack of control and lack of wanting to know and so on is a "normal" feeling! Firstly it is so important she knows this. She is not "handling it badly" or on any score incorrectly - it is part of the shock andief of what is happening to her and she is angry , frustrated, shocked , confused and possibly even in some degree of denial wanting to "bargain" with everybody ...if I do this then maybe just maybe all this pain and horrible situation will go away ....all at the same time. When we face such huge changes to our bodies we go through the same sort of feelings as when somebody dies. It is natural for her to feel as if God has deserted her and if you have a Faith and she has a Faith all we can do is pray for her and wait. She will need constant reassurance when she says these things that God does still love her and so once it is said maybe leave it and don't force the conversation further.

It is OK for her to say she doesn't ned the counselling too....just keep going and let her in her own way and her own time see that things will be OK but very very different and you (and we) will still be here for her when she wants and needs to learn and tal about the situation she is facing. Again a short burst of reassurance and leave well alone...don't labour the point as this will frustrateher even more.

If she is well enough try and do normal family life things ,same discipline same routines , go out , invite people around all the normal things and slowly include her as and when she is ready to she will see people accept her as she is- the same 11 year old who is precious and cared for and loved and will still have a life to lead with her tubes and lines and she will still be accepted and able to go to school and so on.

I really hope you can move on from this moment of darkness and the other "advice" re arts, crafts , interests hobbies etc is so important too. Some way of being able to "talk" about things in her own time and express the pain is so vital and will happen slowly at her pace not yours or ours.

With love - you know where I am if you want to chat.

Chris
www.mypeggypeg.blogspot.com

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• By stekcsf
• Posted April 11, 2008 at 10:15 am

thanks to all of you for your responces. i am taking it all in and trying to be stronger for her. i also think she thinks that i should make her better, if i loved her i'd make her better. just like i do her brother and sister. It's just sad to see her pain, emoitional pain.

thanks it helps
tricia

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• By ktmorong12
• Posted April 16, 2008 at 12:27 pm

As being a teenager when I first become ill, I went through the SAME emotional experience that you state your daughter is going through.
Hang in there, it WILL get better emotionally wise. I sturghled and I think most of it came from acceptance of the new life style adding on the pain. It also comes with maturity. As I became a little bit mor mature and knew more about my disease etc. I had no luck with counslers but something inside me changed and I know that sooner or later your daughter will come around...just be patient as you are and stay understanding because it will make her feel worse if she thinks you don't understand. It might be a while...a week or a year but things will change for the better.


It helped me to think of my future plans and to get motivated that I would get better and what I wanteed to do when I got better...although I'm not yet better.

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• By docandkate
• Posted April 17, 2008 at 6:44 pm

Heres a small suggestion, to get the other children involved too. If possible, have them secretly put up a bird feeding station outside your daughter's bedroom window. Include several types of food, appropriate to your location, and most of all water. They could put it up for her when she is away, and surprise! The crazy antics of the birds are distracting, and she may learn to enjoy the diversion. maybe grow a few tall sunflowers that will be visible too... It gets your mind elsewhere, and on the living. I wish you all well..Katherine

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• By stekcsf
• Posted April 18, 2008 at 9:07 am

WHAT A GREAT IDEA. frinds are always asking what can they do? that would be wonderful!

thanks tricia

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