Family members of thalassemia patients

Hi Christine, Jade, manal, Sharmin, Zaini, Zahra and Manal

How true. Christine your story is exactly like all of us. reality was hard and exactly the same for all of us.

 However I feel mothers come to terms faster than fathers cos women are emotionally stronger. women are genetically stronger in terms of emotions than men , there have been studies and it has been prooved to be correct,.

Jade  -it is not that they are not taking it seriously, they are not acknowledging it cos if they do for them to perform in their daily lives becoms difficult. I used to ask my husband "why u never even bother to learn what is happening in new researches". I used to wonder, he  is so well read and is on the net reading about business, global economies and financial world, then why is that he cannot read about what is happening in new  developments on cures for thalassemia. My husband said that "if I read about these things I cannot function, i cannot sit in office I dont feel good about things".   I did not beleive him but after I read your posts I realise everyone is in the same boat like me.  In fact it took him more than 6 years to actually start looking at thalassemia in a positive light. S'pore conference did help and now yesterday he joined our forum as well. It is a pleasent surprise. Also dont forget they are so emotionally
dependent on us that they think, it is ok my wife will be doing the best thing for our child and is doing the right thing and she is no all in this subject.

One has to be patient.  Also time is the best healer, it will heal them as well.

Hello to all of you,
as you know m thala major..my age is 26.
My family supports me a lot, they know all the things going through with me..
Sometime i dont feel comfertable to share my feelings..
I Just want to say to all Mother Keep trying to motivate your Child..nd as they grow they will face many changes in life,so try to understand them and keep asking from them if they want to share something.
I know you all are great Mother, I don't need to suggest you anything, but being a thala major
i just trying to manage my life in good way..
I wish our little angel do well in life..
GOD BLESS YOU ALL

Non thal siblings of thalassemia patients are affected by their siblings disease.  I often wonder how it affects their development and self esteem. 

The siblings grow up around this disease, they sense their parents worry and sometimes their needs become secondary (despite parents best intentions).  A flu or a cold in a non thal child does not mean a drop in hg therefore parents may not have the same reaction when the non thal child is sick, compared with the reaction they have when the thal child is sick or injured.  So much time and energy is spent on observing the behavior, possible fatigue, blood tests, supplement and medication schedules, and appearance of the thalassemia child that parents simply can't spend on the non thal child. 

These children also spend time around hospitals, medications, doctors, concerns and worries.  All of this must also affect them in various ways - they must feel left out.  At times they may worry about their siblings and have various fears about the illness.  They may feel guilty, as their sibling is poked and prodded, while they themselves aren't. 

The may also miss the praise that their siblings receive.  Thal patients are often told that they are brave and wise.  The siblings are watching wondering if they also are brave, how could they possibly display bravery as their siblings do?  Also, when thal patients do well in life despite their thalassemia - again the parents and teachers are dually proud because not only has the thal patient succeeded, but they have done so despite their illness.  The nonthal sibling, regardless of how well they do cannot compete with this - afterall they may have done well but there was no 'disease' or 'obstacle' that they had to overcome in order to succeed. 

As families, I believe that it is important to incorporate the siblings' understanding of the disease, their growth and development as is pertains to their siblings thalassemia, and their importance regardless of their thalassemia status is very important.  These children need more attention than a child who does not have a sibling inflicted with thalassemia because they are watching everyone give a lot of attention to their thal sibling - therefore their perspective on attention and love is different from the average child - who does not witness this. 

I am interested to hear everyone else's views on this and ideas about how we can educate siblings of thalassemia patients

Sharmin

Some of this crosses my mind as my daughter grows up, dealing with her brother's thalassemia.  She has generally done well, and we involve her in everything as thalassemia is a family issue that we deal with together.  We like to acknowledge that it has an impact on her too.  There are times, like when she has an occasional poke or accident - and we tell her she is brave - but she very matter of factly replies - "no, my brother is brave because he doesn't cry when he gets his IV", or when she has a great accomplishment at school she will say "yes, but it is easy for me because I don't have thalassemia, but my brother can do this even though he misses so much school". 

I wonder if others have dealt with this as well.

Sharmin

As usual sharmin, you are touching  very deep issues. I really don't have a similar expierence as yours since thalassemia is not yet introduced in my family, none of my children has yet known anything about it since there wasn't significant situations (like transfusion for example) that forced us to talk about it.

But actually your post made me realize how much i sometimes become unfair to my daughter. Though i don't overprotect or spoil Ahamd (which is not the case for his father by the way ), but i am very strict in many situations but deep inside me i really don't bother that much when my daughter catches cold or i am not keen in giving her multivitamins as i believe that since she eats balanced diet, no neeed for a daily multivitamin. After your post i can see myself from the outside and i really hate it, I hope that my daughter can not feel the difference and i hope that it is never late to correct my way    I am dealing with my daughter as if there is a gurantee that she is always fine. My  subconscious keeps her away from my attention, now i am so afraid about her

Sorry for changing the idea of your post but thank you fro making me realize how much i should take care that she shouldn''t feel any difference

manal

manal

Manal my dear,

I am confident that you are being a very caring and supporting mother to both of your children:)  Looking at you children's pictures tells me that you have pampered and cared for both of them very well:) 

In your case, because you don't have transfusions etc. there is less opportunity for your daughter to feel left out.  It may be a good idea when you think the time is right to begin helping you daughter understand your son's condition (in very very small increments) so that she does not ever feel left out or think at some point that you are less concerned about her.  I know that you will continue to do a great job with both of your little angels. 

Because of my son's transfusions, my daughter has needed to understand thalassemia from the beginning.  By making her a part of everything including hospital visits has helped her feel like she has an integral role in all of this. She helps the nurses find a good vein, she brings him a healthy snack from the cafeteria etc.  When my son takes his desferal off, sometime he bleeds just a little - my daughter's job is to bring him a tissue to wipe the blood.  It is so funny, she can be anywhere in the house but once she hears that her brother's desferal is coming off - she comes running with a tissue.  I think that this support and understanding between them will help them both.  I make sure that when we are not dealing with thalassemia, that we give a lot of attention to her issues. 

This summer however, when my son had the reaction to the IVIG - I had to stay in the hospital with him and she had to stay with grandma.  Usually she loves this, but at that time she stayed with grandma for a week feeling like she was not a part of the family.  She knew her brother was not eating - and she kept asking grandma "is my brother okay?  do you think he ate something now?" 

When she visited she would try to be comforting to him, but he had such a terrible headache that he would scream "take her away! make her be quiet" - I could see the tears in her eyes and the pain on her face during this ordeal.  All of this has made her compassionate but very sensitive too.  After this incident my son was quite grumpy, and I think some of that grumpiness affected her too.  The situation shook her confidence, and we are still seeing some clinginess and anxiety in her behavior.  Although she is very intelligent and brave, she does not give herself any credit saying that her brother does so much more - even though he has thalassemia. 

I am just wondering how some others noticed these things in their children.  I also think that it would be a great idea to share ways in which to involve and support our non thal children. 

It is easy to understand how thal affects your thal child's life - because they have thalassemia.  It is more difficult to understand how thalassemia affects your non thal child - because they don't have it.  (My daughter does not even have thal trait - yet thal affects her very deeply). 

Sharmin

Sharmin, May God bless your children and keep them always supporting each other now and forever, it is the best thing that satisfay parents knowing that when they leave this world, their children are supporting each other. This would never have happened by chance ,but a really caring parent like you is behind all this for sure.

I salute you my friend and your sweet daughter, how caring she is.

And thanks Sharmin for your advice that i will definetly folllow, take care

manal

Thank you Manal, your support and encouragement means so much  

I am trying my best with her - and for many years things went very well.  This has been a year of adjustment for her, as I have told you she has been bullied at school, little A has had a difficult year because of the antibodies and I sometimes feel like I haven't done enough for her.  She is a very sensitive little girl.

Perhaps this is why I feel that families of thalassemia patients sometimes have a low threshold at which they can be hurt.  We can get through so much with tons of courage, and sometimes someone's harsh words or cold attitude can break our hearts.

Sharmin

Yes you are right Sharmin,
And it hurts more when people do such things deliberately ,and most of the times moms are the ones who face more hurt and depression.

Zaini.

Yes you are right Sharmin,
And it hurts more when people do such things deliberately ,and most of the times moms are the ones who face more hurt and depression

.

Isn't if strange how we let these people affect us?  If only we could be as affected by the compliments and warm thoughts people send our way - as we do for each other on this site - we would be so much happier and more confident!  Our heads would be so inflated with pride that we wouldn't be able to get through our front doors!!   

The other day I was teaching my daughter to pretend that she is surrounded by a filter - and only circles with smiley faces can get through it (compliments and friendship) - but squares with grumpy faces (insults and rude remarks) cannot get through.  I also told her to make sure that she was only sending out round smilies and no grumpy squares because they hurt other people.  She came home from school happy to announce that she was covered with round smiley faces but one grumpy square snuck in - so we quickly removed it   Now I have to work on my own filter!  Too bad in the adult world there are a lot more shapes to hide from - like the grumpy octagons pretending to be round smilies    

Sharmin 

You are amazing Sharmin 

Zaini.

.

Isn't if strange how we let these people affect us?  If only we could be as affected by the compliments and warm thoughts people send our way - as we do for each other on this site - we would be so much happier and more confident!  Our heads would be so inflated with pride that we wouldn't be able to get through our front doors!!   

Sharmin 

I love the way you are teaching your children how to cope. It is another way to look at life. I applaud you.

  We would start carrying pin needles around to stop our heads from inflating or should I say my husband would

Cherieann,

Thank you for inflating again - I think I will need that pin now   

When parents are in the situation that I am in it is amazing what they can think up - we all want what is best for our children and we all find innovating ways to achieve this goal.  I am so glad that we are able to share our methods with one another - as parents.  It is also very valuable to get the opinions of adult patients because you know what has worked best for you. 

Thanks again,

Sharmin

  I would probably need it before you
You are right though, parents will always find a way to help their children.
My parents did their best by me through treating me no different to my sister but also picking me up and giving me  a push when I needed it.
I know it was never easy for my mum having to be in hospital with me and having a sick husband at home and my sister. There were times that my sister and dad needed my mum more.
I learnt empathy not sympathy.