Thalassemia and emotions

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Offline nice friend

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Re: Thalassemia and emotions
« Reply #15 on: January 06, 2009, 12:40:38 PM »
read this story n you will find that you cant please everyone : soo let them saying wat-ever they want to say and ignore them other wise world will laugh on you like travelers laughed on the father and son in the end of this story ....
http://www.kidsgen.com/moral_stories/you_cannot_please_everyone.htm
Quote
One day a man was going to market with his son and his ass. they met a couple on the way.

"Why walk when you have an ass to ride?" called out the husband, "seat the boy on the ass."

"I would like that," said the boy, "help me up father."

And the father did that willingly.

Soon they met another couple. "How shameful of you!" cried the woman, "let your father ride, won't he be tired?"

So, the boy got down and the father rode the ass. Again they marched on.

"poor boy", said the next person they met, "why should the lazy father ride while his son is walking?"

So, the boy got onto the ass too. As they went on, they met some travellers.

"How cruel of them!" They are up to kill the poor ass." cried one of the travellers.

Hearing this, the father and the son got down. Now they decided to carry the ass on their shoulders. As they did so, the travellers broke into laughter.

The laughter frightened the ass. It broke free and galloped away.

Take Care
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

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Offline Zaini

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Re: Thalassemia and emotions
« Reply #16 on: January 06, 2009, 03:40:30 PM »
Umair,

Dear,it's not the problem of some one saying something,or people saying some thing,it's not people's comments or opinions which are bothering us,they do,but atleast my problem is patience,i loose my patience tooooooooo soon,i care about my kids,especially Little Z,i spent my hours searching,reading,finding new things for her,i keep track of her meds,i am spending a lot of money on her supplements,as you very well know medical care in Pakistan is very expensive,just because i want her to be healthy and happy,i'll never want her to think that there is something wrong with her,but when it comes to my patience,ARGH!!!! Everything goes down the drain,

Every day life stress definitely adds to it,you talked about ignoring what people say,my problem is,people who matter in my life doesn't say much ,if you know what i mean,if you are struggling with so many things at a time in life,you want people for whom you care,you love,and who hold much value in your life,to be appreciating,encouraging.Words don't cost any money.

I guess i have said enough,it's a bit embarrassing,but that's the way it is

Manal,

You always sound like a very composed person,it's hard to imagine you have any problems with patience,but i think we all have our stresses.

Zaini.
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Offline Dori

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Re: Thalassemia and emotions
« Reply #17 on: January 06, 2009, 04:59:53 PM »
Ja,Ziani:

I would like to hear more appreciating (or attention) words from other people. That is what all humans want. But I believe that people who need it, hear it not often enough. We can not fight this battle by ourselves.

xxx

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Offline Zaini

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Re: Thalassemia and emotions
« Reply #18 on: January 06, 2009, 06:44:38 PM »
Ja,Ziani:

I would like to hear more appreciating (or attention) words from other people. That is what all humans want. But I believe that people who need it, hear it not often enough. We can not fight this battle by ourselves.

xxx


My thoughts exactly.

Zaini.
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Offline Sharmin

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Re: Thalassemia and emotions
« Reply #19 on: January 06, 2009, 07:34:58 PM »
Dear friends,

sorry for the late reply, little A had a fever yesterday and he has been a little under the weather.  I will share a few thoughts for now.

I think that it has been helpful to know a number of mother's have battled the guilt of not being as patient as they would like to be with their children.  I think many of the mom's have assumed that all of the other mother's are patient and calm all of the time.  As you can see, this simply isn't the case. 

Keeping in mind that we have thal minor and a whole lot of stress in our lives, some of it caused by people in our lives who we cannot avoid - we need to come up with solutions that are healthy for us and best for our families. 

My first solution is taking time to plan our reactions to difficult situations so that we are in control of our actions.  I think that we all agree that we want to act in a way that is in line with our beliefs but sometime we lose site of what is important and we "lose it" in certain situations.  The result of this, our children suffer and we feel a lot of guilt.  Let's say that we lose our patience in certain situations, such as getting the kids ready for school in the morning.  Perhaps we can plan before hand what our expectations are of the kids when we get ready for school in the morning. 

Secondly, if we find ourselves losing our patience - rather than continuing on and beginning to scream and yell - we should take a moment to stop and force ourselves to behave in a more constructive way.  Making one mistake does not mean continuing to make more, just stop. 

Remember that children need discipline and thalassemia children need it more than other children because they will need discipline in order to keep themselves healthy.  Therefore we need to be firm rather than angry and frustrated with them.  We need to be patient toward them in order to instill patience in them.  We can do this by changing our mannerism into a firm one.  This can make all of the difference.  Take control in some situations - speak directly and firmly - don't accuse or try to induce guilt in the chilren - just be direct about your expectations.  Other times, where you can, give them choices and control and when they practice good habits cheer them on. 

The greatest frustration comes with trying to do too much in the day - we are always rushing ourselves and our children.  Therefore we are more busy trying to rush them through things rather than letting them live.  I wish I knew how to change this. 

I think that we need to know our goals - and then work toward them.  Remember, life can be tough let's take it easy on ourselves and our families.  Give yourself a time out.  Stop when you find things getting out of control - take charge of your own actions. 

When we allow things to bother us - negative chemicals and hormones are released in our bodies and the bad reaction continues and soon you can lose complete control and have a full tantrum.  Take control before these chemicals are released - calmness can counteract this negative effect.  Doing this is better for your health too:) 

I will write more once my little A is feeling better,  I am very eager to hear your ideas and responses to what I have said. 

Sharmin
« Last Edit: January 06, 2009, 08:33:23 PM by sharmin »
Sharmin

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Offline Sharmin

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Re: Thalassemia and emotions
« Reply #20 on: January 07, 2009, 02:13:32 AM »
Also, if I may add - moms are very hard on themselves.  Have you ever seen dads try to take over for a day or two?  The yelling would be at least twice as much  :wink
Sharmin

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Offline Manal

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Re: Thalassemia and emotions
« Reply #21 on: January 07, 2009, 03:11:46 AM »

Manal,

You always sound like a very composed person,it's hard to imagine you have any problems with patience,but i think we all have our stresses.

This is never the case Zaini :whyme :sadnope :sadnope, sorry that it didn't go with what you thought  :think



Sharmin,

Sorry to hear about little A, hope he is feeling better now, wish him a speedy recovery :getwell :getwell :getwell :getwell


Thanks for te valuale ideas, i will take sometime reading it again and again and definetly i will follow your advices. They always work Sharmin :happyyes :happyyes :happyyes

manal

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Offline Sharmin

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Re: Thalassemia and emotions
« Reply #22 on: January 07, 2009, 06:14:36 AM »
Thanks Manal,

He is a lot better today and he has a transfusion tomorrow:)  I hope all goes well. 

Sharmin
Sharmin

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Offline nice friend

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Re: Thalassemia and emotions
« Reply #23 on: January 07, 2009, 02:46:30 PM »
 :getwell :getwell :getwell :getwell :getwell
 :getwell GET WELL SOON LIL A :getwell
 :getwell :getwell :getwell :getwell :getwell


Umair
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

*

Offline Smurfette

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Re: Thalassemia and emotions
« Reply #24 on: January 08, 2009, 01:19:20 AM »
Sharmin:

What you said is absolutely true... I would like to see some of the fathers of thal major patients try and take on the role of mother even for a day...

I seriously doubt that they could do it!!!!!!

There are a few exceptions though like the gentleman whose son had the bone marrow... Sorry if I cant remember your name... But I take my had off to you... Your one of a kind  :hugfriend

Hope little A is better, I know what it feels like to be alittle under the weather when your due for a trans... I get like that too...

Take care all

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Offline Sharmin

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Re: Thalassemia and emotions
« Reply #25 on: January 08, 2009, 03:43:20 AM »
Thanks Smurfette  :hugfriend

It's tough when colds and low hg comes at the same time.  He is doing much better today and he had his tx too:) 
I was showing little A some of your posts and pictures - he thinks you are awesome :) 

Have a great day,

Sharmin


Sharmin

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Offline Zaini

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Re: Thalassemia and emotions
« Reply #26 on: January 08, 2009, 05:30:38 PM »
Sharmin,

I hope Little A is much much better now  :hugfriend

You are totally right ,and whenever i loose my temper and then when i feel guilty about it,i always try to convince myself that i won't happen again,whenever i'll feel like i am going to lose it,i'll take a deep breath,will drink some water and there are some verses to be read to control your temper,so i'll read them,but in the end i forget everything.I just need to be very very patient and calm and i am trying to find how?

Talking about dads,you are right that they won't take charge of kids,my husband never does desferal or keep track of meds or supplements my daughter is taking,he is sooooooo busy with his business,i don't want to blame him as i know economic conditions are hard enough,but eventually i do complain,and it just adds to my guilt.

Pretty messed up i am  :huh :huh.

Zaini.

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Re: Thalassemia and emotions
« Reply #27 on: January 08, 2009, 06:13:35 PM »
From the perspective of a father, I try best but yes the responsibility of medicines and take care of my daughter is mainly with my wife and she does a wonderful job, though I see the sentiments expressed here are the same for my wife.

Do I appreciate her verbally, may be not and I won't hide under "its a guy thing", its a mistake I learned today. Where do I start or can I do it? :huh
Regards.

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Offline Zaini

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Re: Thalassemia and emotions
« Reply #28 on: January 08, 2009, 06:20:21 PM »
Hi Canadian Family,

Yes you can definitely do it,just an appreciative and encouraging comment here and there will be fine,with sincerity ofcourse,which i am sure you have.It will give her a new boost of energy you'll see,i know it because i miss it :) .

Zaini.
^*^Xaini^*^

Re: Thalassemia and emotions
« Reply #29 on: January 13, 2009, 02:11:41 AM »
Thank you to everyone who wrote on this topic.  I am the mom of a thal major little 2 and 1/2 year old.  It breaks my heart to see what she has to go through, yet I am truly grateful for the care she is getting.  You see, we adopted her from China (a very poor province in China).  They did not know her condition and would have likely never been able to diagnose it.  They did take very good care of her - and it was obvious they cared for her.  Within 3 months of coming home she was diagnosed.  We were devastated.   

We treat her condition like it is completely normal.  She shows people where she gets her blood and she gives and takes blood from her stuffed animals.  We always let her know when we are going a few days ahead of time.

I must admit, I hate for her to have to go through all this.  In trying to keep things "normal" I wonder if we treat it too "matter-of-fact".  But, of course, for her it is matter-of-fact for life.  When I get tired I start to question myself.  My emotions depend upon the day and even during the day I can change a lot.

But no matter what - I think she needs to know that she is "normal".  We believe she is normal.  There are a multitude of health conditions and she just happens to have one that requires a bit more discipline. 

Do I make any sense at all?

 

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