Discussion Forums > Thalassemia Major

Dying inside....

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alnahrahmea:
Actually it is often hard for parents to accept that their children are suffering from an illness not every one else is familiar about.  Especially something that they consider life threatening like Thalassemia.

I remember 4 years ago when I was discovered with the Thal trait with my blood dropping to 5 gram, while I was at the same time suffering from a blood infection of Acinetobacter and a lung infection of Pneumonia, with all the IVs and tubes that are attached to my body my mom actually asked me: "If you die before or during your blood transfusion, are you ready?"  I know that is a very painful question for my mother has to ask me, but she asked anyway. In fact, during that time, we are even having financial troubles which made the doctor's prognosis worse to accept for my family.  I am an only daughter and I only have one brother, so we were very dear to my parents. I especially to my mom because we are also best of friends as a mother and daughter

My only weak answer to my mom is: "God is good mama and they say he is handsome so I am not scared, because I will be in a better place."  My mom left my room after I said that, and I knew she was crying at the lobby with my dad and uncles.

After 4 years, here I am, I'm with child, and my family has never been more supportive.  In fact I was so happy I survived, and  I was able to share to my students, my co-faculty, my superiors and even to complete strangers that I meet that I have Thalassemia.  I may be different and special, but I am still the same person like every human being created by God.

Sometimes my family would still feel the frustration knowing that I have Thal and my baby might inherit it, but still I know when my baby comes out that it is okay to talk about it and let people know.  The response may not always be positive, but acceptance is always the key in coping up.

God bless everyone!  :wink

lily:
Hi Christine,
I hope you're doing better emotionally, all of us parents of thal patients understand you completely, and all the ups and downs and different feelings you go thru are all normal, there is no greater pain in the world for a mother than to see your child suffer in pain. 

I want to share my experience with you regarding the med-a-port.  My son has had three in his 18yrs.  The first 2 were taken out due to staph infections, for which he was hospitalized both times to treat the infection.  The last one was around 7 yrs ago,  he had it for 2 mos.  went in for his anual, routine echocardiogram,  at which time they found a huge blood clot to his heart that had developed from the port, within hours they performed an emergency open heart surgery.  The surgeon informed me that if he hadn't had this routine test done, as big as this clot was it would've killed him within one week.   I'm sure many people have done very well with the ports and never have any problems, unfortunately that wasn't the case for us. 
I was just 21 when my son began receiving transfusions and when they would poke him 3, 4, 5 times to access his veins I would cry rite along with him, for me that was so hard to go thru.  But the way I see it is I rather cry with him during those painful pokes, than spend my life crying over him because of some stupid complication that can take his life.   So just something to think about.

I also want to comment on the comment about keeping our thal children a secret, my personal opinion, I think that is so wrong, we need to educate people not make our children feel like they're different than anyone else, life is hard enough dont make our children feel theyre not normal.  I raised my son in a town of 6,000 people, everyone knows everyone,  I had many frustruations because people didn't understand his illness so many times people thought he had cancer.  I know everyone deals with it diferently,  and I'm not judging anyone for how they deal with it, but for the parent that doesn't want any family members to know about it, don't you want that emotional support from them.  My son was raised very spoiled by my family because of it and I know it's not good to spoil your kids, but you know when a child goes thru as much as ours do, I don't see anything wrong with giving them as much pleasure as possible.  And let your family be there for you and your child.
Take care Christine and you will do just fine with your daughter, believe me you are stronger than you think.
Lily

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