a bit about them...

hi,

i thought i will let you know about my family.  i am 37 years old, married to a wonderful man and we have two beautiful boys, 16 and 12.  our boys have thal major diagnosed from birth.  
they started blood transfusion at 6 months and 4 months old and started with desferal when they were 2 years old.  while growing up we have tried to teach them alot about islam and what islam says about sicknesses and deseases. islam teaches us that if we have a form of sickness it is not a punishment,  it is a way of gaining nearness to God..that God will reward us for every pain and discomfort experienced, every prick of the needle, and every tear we shed...i can see that with their belief in islam they have grown with this condition and as individual people fabulously.  
i feel as their parents we have been quite strict with them in the sense that we haven't spoilt them.  yes they have grown up with love and affection but just because they have this condition they have not got away with blue murder...they have grown up to be very calm, tolerent, patient level headed boys.
our older son is very active loves football, is a liverpool fan, likes motor cart racing, favourite nasheed artist (islamic songs) is native deen, and presently enjoys watching an old british favourite comedy series 'only fools and horses'.....the younger one likes football, he likes to play it though he hasn't got a favourite team..enjoys reading alot, is into sci-fi drama 'doctor who' completely geeky with it...knows all about it!  his favourite films are star wars and lord of the rings.  
both are doing well in their education with both of them being in top sets and also with madresah classes they have always passed in islamic studies.
generally their health is very good alhumdollilah, apart from build up of iron which i have previously posted about....i thank Allah He gave us them two...i love that they are a part of our lives and we are a part of theirs....
i feel the biggest thing for us as parents is to get the boys to be more aware and in control of the thal and to keep themselves well informed especially as they are getting older i would like them to take the thal into their own hands with us supporting them all the way.

emby                              

Hi Sis,
i dont know how can i help you but i think i can help you to raise a thal child's concerns , i think i can help you understanding a thal child's pysche/nature , i will try to help you at my level's best , when-ever i feel that i can help ...  you're raising them very finely , no compromise on studies and dealing like anyother normal child is wat make's a thal child grow up normal ... plz never compromise on their studies and treatments Escially on Chelation .. if you manage their Pre-Transfussion HB level around 10 and controle their S.Fe level near normal ranges ( below 1000 is a good range )  then you will discover that they are thals only for their Transfussion day and they will live like a normal person , a healthy and normal life ... soo if they resist or not u have to tell them that you're not gonna skip their chelation ... dont over protect them , let them go and do wat-ever they wana do , and tell them to play out door game and light exercises ..... tell them that chelation is sumthing that will decide the way they are gonna live the life., if they are good at controling Iron then they will live a healthy n normal life otherwise life's not so easy with thal and iron over load so tell them to be compliant with chelation .... i will write more INSHA-ALLAH (god's willingly) abt the details when-ever i got a few more points to share . i hope and wish them a good healthy and joyful normal life .. May ALLAH ALMIGHTY ( GOD ) Bless them with a healty life full of life n joys AAMEEN .....

Lots of Best Regards

Umair

Emby,

I am really glad you shared this with us,your boys are really adorable,and credit goes to you as a parent  ,what you said about Islam is right,i always try to make my daughter understand that,and i am the same with her, no spoiling just because she has thal,she is excellent in studies,and you'll be happy to know she is memorizing Holy Quran by heart ( Hifz-e-Quran).and obviously it is a tough task.
She loves running,have won medals in her school sports,you can see her pics in the gallery,loves cartoons,and she is the biggest chatter box  you can't stop her once she starts  .

Thanks for sharing with us this beautiful post,knowing about thal kids are doing good and taking thalassemia as normal as they can,is really uplifting. xoxoxo to your kids  .

Zaini.

@ Zaini
MASHA-ALLAH sis, its nice to hear that Lil-Z is doing Hifz-e-Qur'an its such a great thing to hear , m really feeling glad to hear this... May ALLAH (God) Bless her With succes in doing this and make it easy for her to keep this for the rest of her life AAMEEN .... Sis, You're doing a super great job May GOD bless you as well AAMEEN ....

Best Regards
Umair

Emby,

What a beautiful post, your boys are doing wonderful and you have done an amazing job raising them.  We have so much to learn from you as we raise our own children.  My son is almost 11 years old and he has thalassemia major.  My daughter is 7 and she is non thal. 

Keep up the great work!

Zaini,

I am so proud of lil Z   Way to go my little friend!

Sharmin

Thanks Umair and Sharmin 

Zaini.

hiya,

may God make things easy for all of you and your little gems.

aameen to that umair...thank you for your offer of help and your duas, your prayers,need lots of them, really appreciate it..

sister zaini,  how wonderful your daughter is doing hifz, Allah Willing, He will make it easy for her. she is beautiful (gallery pics) mashaAllah.  please make dua for my little one, he is doing hifz as well...i pray Allah keeps the Qur'an sealed in their hearts, fresh in their minds and moist on their lips, aameen.

sharmin you have a beautiful boy who is a credit to you. from some of your posts i think he is doing fabulously. i understand he is very sporty perhaps his little sister needs to run twice as fast just to keep up with him!

i feel as parents we play a little part, but it is God who has shaped them, and He has moulded them and He has given them their characteristics....we didn't choose what colour eyes, hair, boy or girl.....when someone says well done in that way i understand but i feel really thankful for what Allah has chosen for us, for me.

emby

 

   

May God bless all of our children
 
manal

Dear Emby,

My prayers are always with you and your family  .I'd love to meet your boys some day .

Zaini.

hi,

sorry i'm late...transfusion week + family wedding...

aameen, manal....

zaini....it'll be nice to meet with you too.

please take care.

emby

salaam maryoom,

thank you for the warm welcome.  hope you are keeping well and are in the best of health.
football is not just a mans game...my sister is so much into it too! me....i can't keep track....
the best game for me was the england match against germany in euro 1996......but then they lost in the penalty shootout!!....not been that bothered since.  who is your fave team?

as with our boys....we have had a few ''downs'' but loads more ''ups'' and with that we have alot to be thankful for.
i pray Allah makes it easy for all....ramadhaan mubarak to you!

luv
Emby