Sikcell: People living with Sickle Cell
We still Hope
Parents with Guilt; Treatment with Guilt; "Sicklers" with Guilt.....Is this the guilty disease???
As a parent of a child with Sickle Cell when we see them in so much pain you feel guilty, and wish you could find someway to take it away. Most of us never expected to have or ment to have a child with Sickle Cell. No Regrets! Our own families that should be there to support us sometimes makes us feel guilty; so we have to walk away. Most of the time this is were we find growth in our self and become strong caretakers.
Everyday life with Sickle Cell there is unspoken risk, risk of the unknown, but because it's unknown it's okay? Why when people talk about some forms of treatments especially Bone Marrow Transplant, we who know that there is a daily unspoken risk, make the known risk seem much more worst than the unknown. We most times make others feel guilty, for looking @ this approach. We show support to the unknown but none to the start of the known.
Some "Sicklers" at one point or another have felt guilty for not being able to do something, be somewhere or what ever the "guilt" may be. Most overcome this to be strong individuals.
At some point with this disease there is some form of guilt...
Why can't this "special" community of Sickle Cell, caretakers, patients and our surrounding community embrace each other from the beginning, and show there is no need to feel guilty. Autism is embraced, why not Sickle Cell?
Please share your thoughts and feelings, caretakers and patients and supporters.
God Bless and keep the faith.
Everyday life with Sickle Cell there is unspoken risk, risk of the unknown, but because it's unknown it's okay? Why when people talk about some forms of treatments especially Bone Marrow Transplant, we who know that there is a daily unspoken risk, make the known risk seem much more worst than the unknown. We most times make others feel guilty, for looking @ this approach. We show support to the unknown but none to the start of the known.
Some "Sicklers" at one point or another have felt guilty for not being able to do something, be somewhere or what ever the "guilt" may be. Most overcome this to be strong individuals.
At some point with this disease there is some form of guilt...
Why can't this "special" community of Sickle Cell, caretakers, patients and our surrounding community embrace each other from the beginning, and show there is no need to feel guilty. Autism is embraced, why not Sickle Cell?
Please share your thoughts and feelings, caretakers and patients and supporters.
God Bless and keep the faith.
Replies to This Discussion
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Permalink Reply by Jason Bioba Goldie on
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Guilt? I think guilt is what parents have to deal with and there is nothing wrong with feeling guilty about having a child with sickle cell. My parents feel this guilt. I think my dad even transfers blame on my mum just to free himself from the guilt she is so burdened about: God bless her. I think the responsibility lies on us patients to free them from guilt.
It took me a long time to understand that blaming my parents or the world or God for this gift 'sickle cell' was wrong and only added to my defeat in my fight for life. Once i was able to understand that sickle cell was a part of me and i a part of it, it becomes easy to take the responsibility of making my parents and siblings deal with their guilt.
I agree with you that we - patients, parents, caretakers and supporters alike - have failed because of the kind of messages we relay to the society about sickle cell disorders. The scientist and doctors are guiltier in the kind of information they spread about this disorder. They spread messages of hopelessness; i remember going through a lecture on a biochemistry software about genetic disorders and sickle cell happens to be the case study. Tears betrayed my brave eyes after reading their 'predictions of doom'. So sad because what i felt that day as a student and a patient was hopelessness but God strengthened me with a resolve that nobody can read my life and give me a verdict of death because of their scientific wisdom ( i am not saying science is wrong because i am a scientist myself). But why make the society feel horror about sickle cell. Other institutions like religious organizations,sadly, also tow on this wrong mind frame of the society they are part of. For example, i lost the hope to survive as a patient because of all the wrong scientific and societal ideologies about my status as a sickler. it made me withdrawn, lazy and destructive (hateful) because i thought i would not live above twenty. but when i discovered i wasn't dying and that all that was fed to me about sickle cell was a lie i turned and became progressive and even without the drugs and the doctors, i am 43 years old, a masters degree holder and by HIS grace i will live even older than those that are normal.
There is much to say but i stop, to say, we are the products of our thinking. Like i told my supervisor and got scolded for it: there is a cure both physical and spiritual. it depends on your thinking. l think God and live it. i would die because i have sickle cell disorder but like all mankind i will die in my appointed time.
Feeling sorry and guilty is not the solution. Act the solution because everybody suffers and everybody dies.
Jason Goldie
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Permalink Reply by NICHOLE on
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As a parent I dont feel guility because lessons are learned when we go throught things in life.Unlike others I have a great support system especially from my husband but the type of person he is I am really not surprised.I still dont understand why people make people with sickle cell feel guilty.My child will always live a normal life and fight for what she nows is right.I dont like when I hear people say that if they knew their childwould be born with sickle cellthey would have not had a child at all.People young and old wake up everyday with diseases that they didnt even know they could ever get and they fight to survive everyday! All we have to do is continue to stay educated and also dont believe everything that the doctors always tell us because they are human just like we are!
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Thank God for you. I know you will always be by her side (it's a long and beautiful road) and you will always be a pearl to her. Please teach her something more, something about the only friend who never disappoints - Jusus. What a friend we have in Him. I will close my eyes for you in prayer - this moment.
Stay Blessed: you and your household.
Marana tha
Jason Goldie
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Permalink Reply by Jhana Blackwood on
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Thank You, and bless you and your family
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Thank you all for opening up and sharing your feelings and beliefs. Jason your reply was awesome. Your strength comes across in your words and your sentences become alive. Because of having other close family members with Sickle Cell, who are also well education with their masters just like yourself, I knew that as far as my son goes this was not a "death sentence", when he was born. Although, I still had to go through the motions. I encourage him to be all he can be. (He want's to be a pilot and will start flight classes soon; he may have to use oxygen the whole time but that's okay he is still flying :-); he has traveled to more countries than I have; I am truly blessed my family has taken him all over the world). I have also met a young woman who grew up on disability not encouraged and that is where her life stopped, unfortunately this was, what she was taught. Not until she became older and realized it was not a death sentence, you can have a very fullfilling life, was she able to break that cycle. It came with the pain of her having to leave behind family that should be by her side, but she is a much happier person.
I use to work in the same office as my son's hematologist and I would constantly have to encourage new parents that babies were newly diagnosed with Sickle Cell, I never forget this one lady that could not believe I had a son that was 12 @ the time and living a normal life, all she was told was the worst case scenerios. We are blessed to be surrounded with encouraging people. I can go on for days, LOL that's how passionate, I am about Sickle Cell. I am a strong proud mother of a sickler, and he has made me who I am today.
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Great! My mum (and family also) believes in me so much that it has kept me going. She is not educated but she is my best doctor because she understands my emotions and we do experiment a lot, growing up. In Africa life expectancy use to be about twenty (20) but now they are lifting it to about (40) and not because of improved medical services like you have in the developed world but because of enlightenment and also because the society is beginning to see survivors. Enlightenment is the best drug for sickle cell anemia and God brought light to void and darkness.
Back to altitude and oxygen deprivation: i have noticed that the body somehow learns to adapt with stress induced problems if adjusted to (introduce) gradually. I think with time you may be surprised that your son will grow to cope with oxygen demand stress. I have seen my own body gradually cope with several stress induced crisis that usually knocks me down when I was younger, for example, muscular or vigorous exercise induced stress but now, somehow, I feel so free from pain (crisis) when I indulge in them although we should all respect our limits. For about thirteen (13) years I have not had a single dose of even the common analgesic drugs. I attribute where I am today to my faith in Christ. To say there are no frustrations and drawbacks as a sickle-r would mean me lying to you but living with a smile daily and believing 'all things are possible to them that love HIM' keeps me way above what I would have been if I was bitter, sorry and have allowed medical predictions to guide me through this God made ‘beautiful world’...
So much to talk about... but am praying right now for your son and you also.
Peace that passes all understanding be unto you and your household.
Marana tha.
Jason Goldie.
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Hi Jason, i'm nigerian,i was born wiv sickle cell, i'm 26 today(it's my bday)...sum1 introduced me to this drug- solamin (check it out on the internet) started using it in may n by july 9th or so, my genotype read AA...it's more God (had an encounter wiv him in a revival 2days b4, read a lotta of healing books/scriptures n i just wanted to be healed so badly, it was like when Jacob cornered God in d old testament) than d drug, ur faith in God is wat made me reply, and after that healing i was like ok it was d drug, but felt guilty about that, n read about d drug n d origin, n guess wat? d guy who got it is an architect by professsion, he says he got this call from God to work wiv herbs, n that's how he got d mixture, i'd say that was my miracle in d making...u know wat? God can n will heal you, if u just believe n really want it...wat i also discovered was u don't have to b a perfect xtian to have access to healing, read most of d healing stories in d bible n nothing was said about d lives they lived, wat they all had in common was FAITH...tap into that!, as i write u now, i'm free from sickle cell anaemia, truly freed by God, n guess wat? He dat d Son sets free is free INDEED!...i believe ur miracle is here just tell it to God as u want it...
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Tanx brother and Happy BDAY. i could be crazy sometimes about my ideologies: it hurts being a sickle-r but i told God i don't want to be AA (because i have a romance with it and i want to see the end - it's the story of my life: all what i am and all the challenges i have gone through as an SS i wouldn't credit to being an AA. it's me. i am unique and one of a kind made to see this world and live through it. ) all i want Him to do for me is to give me victory over SS and growing up as a young Christian i discovered something, each time i went to a crusade for healing i only got worse, that was before i made this prayer of overcoming it. My search for a cure is over... not saying i would not take drugs. Do not forget the thorn in Paul's flesh, God would not take it away but he told Paul that ... my grace is sufficient for you.
Honest i am happy for your miracle and tell others because God can surely do it for them also. i think the victory for a world that hurts is CHRIST. the whole world is hurting not just sickle-rs. there are different kinds of burdens... i dont want to be too long, i will stop here but i will tell you a story someday about different burdens and yours is the best for you...
Keep the Faith...Marana tha
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Permalink Reply by Angela Davis-Beckford on
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This is true we as parents of sicklers must teach our children not to limit themselfs but to live life and enbrace new things and trust in GOD, knowing that there is a plan already set in motion for them I cannot say it enough, just be there for them. The lord is currently working in my life; I had given up on finding someone who truely understood what I feel, besides my family; sometimes it is nice to meet someone who doesn't think that you are crazy but yet has experience some of the things that sicklers and parents go through. My faith was restore and I thank GOD,he allowed me to meet the most real and pleasant young lady while I was spending time with my daughter in the hospital, It felt so nice to talk freely and have someone understand.
Thanks for ear
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Knowing God through the sacrifice of His Son is (everything) life changing: let HIM work on your life. When you give birth to a sickle-r it's like your life comes to a troubled spot but you must learn to overcome it. Parents find it so difficult dealing with it 'the associated problems': frequent hospital visits and watching them writhe in agony from crisis. I remember once in the hospital (many years ago) my mum could not take the frustration and called me 'a devil'. Today we sit and laugh over it; she even claims she never remembered calling me such. What i am trying to say is that we (sickle-rs) drive our parents crazy, especially mothers who bear all the brunt.
Sacrifice is what I am trying to talk about. Please don’t give up on your daughter no matter what, we will all change these weak bodies some day for a better one: 2 Corinthians 5: 4-7.
Trust in the sacrifice of His Son.
God loves you. I am praying for you.
Marana tha
Jason Goldie.
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Thanks you so much, I needed to hear this
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