how do you cope with it

Emily - posted on 04/01/2009 ( 8 moms have responded )

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im trying so hard to cope with this but struggling i no se may gain her sight by 9 months but its only maybe

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Amy - posted on 08/09/2010

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I am not a parent of a blind child I am legally blind myself. I did not walk till I was three no talk until I was three. I had to go to physical therapy to learn how to walk. I have very bad ballence and do not walk well in the snow. Afraid of falling on the ice, snow and freezing rain and all that stuff. But all you can do is take it one day at a time. I went to Overbrook School for the blind in Philadelphia. I told my story on here. Called Amy's storyI joind this group to give you all support love and comfort. No it is not easy for the parents nor the children who through this. But we all get through it. I have a wonderful husband and a wonderful son who is 8 and he wears glasses for reading far away. But a healthy boy. Ask any questions on here or email me. I will gladly take with you. I am very active in my church and do alot of volunteering at my sons school. I get frustrated now and then because I can not go somewhere because I do not have a ride and stuff like that. I am on limited income so I can not just hop on the bus and go wither so it gets difficult. But this is one of many inconviences I have to deal with. But I ake it one day at a time and do what I can. Welcome and have a great day. Love to all. God bless you all. Hang in there and I am here if you need to talk.

Vivian - posted on 01/08/2010

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my daoughter didnt do that till she was alomost 2 she didnt walk till she was 7 and now i really really wish she could hurry up and get potty trained... at ge 11.. the best piece of advice i can offer you is take it slow, push her to do her best and dont ever let anyone get you down about it... this clearly is your mission my mission and everone else onheres mission from god to take care of one of his special angels. he doesnt make special needs kids and give them to ppl who cant take care of them.. there is something special in store for mothers and fathers like us!! just hang in there and take it one day at a time most of all acceptance will help you cope!!! and so will i if you want..

Cecilia - posted on 11/20/2009

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My mom sent me this after i found out about ilias and it has helped me so much!! it still hurts sometimes to see my nephew who is the same age to run around and all the normal toddler stuff but this might help you all too!!



Mothers of special needs babies



Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.



This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?



Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.



"Armstrong, Beth, son, patron saint, Matthew. Forrest, Marjorie, daughter, patron saint, Cecilia.



"Rudledge, Carrie, twins, patron saint, give her Gerard. He's used to profanity."



Finally, he passes a name to an angel and smiles, "Give her a handicapped child."



The angel is curious. "Why this one, God? She's so happy."



"Exactly," says God. "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."



"But has she patience?" asks the angel.



"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it.



"I watched her today. She has that feeling of self and dependence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make it live in her world, and that's not going to be easy."



"But, Lord, I don't think she even believes in you."



God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness. "



The angel gasps, "Selfishness? Is that a virtue?"



God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.



"I will permit her to see clearly the things I see . . . ignorance,

cruelty, prejudice . . . and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side."



"And what about her patron saint?" asks the angel, pen poised midair.



God smiles. "A mirror will suffice."

Emily - posted on 04/30/2009

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Quoting Chandra:

You are probably wondering why this is happening....to you, to your precious baby girl. I wondered that. But you were given a baby that will bring so many joys to your life and of course heart break. My son is almost six and I still mourn for things. I never imagined my life would take this path. I wasn't prepared for this. I had no idea until he was born that he might be blind. All I know now is that this is a wonderfully, unplanned path. It will be hard, but you can do it. She is counting on you to be there for her. Just take one day at a time. The big picture is overwhelming and unknown. Try to enjoy all the little milestones, because as with any child, they grow so fast.
My son was born without eyes. They don't know what causes it and there is no chance he will see and that's o.k. Stay connected with others because it can feel so isolating. It does take time. But, enjoy what you have now and love what you have now.



thank you for your message my little girl has just started rolling over and is doing soo well its amasing and im so proud

Chandra - posted on 04/20/2009

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You are probably wondering why this is happening....to you, to your precious baby girl. I wondered that. But you were given a baby that will bring so many joys to your life and of course heart break. My son is almost six and I still mourn for things. I never imagined my life would take this path. I wasn't prepared for this. I had no idea until he was born that he might be blind. All I know now is that this is a wonderfully, unplanned path. It will be hard, but you can do it. She is counting on you to be there for her. Just take one day at a time. The big picture is overwhelming and unknown. Try to enjoy all the little milestones, because as with any child, they grow so fast.

My son was born without eyes. They don't know what causes it and there is no chance he will see and that's o.k. Stay connected with others because it can feel so isolating. It does take time. But, enjoy what you have now and love what you have now.

Emily - posted on 04/05/2009

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Quoting Emily:



Quoting Katie:

When you say you are having a hard time coping...do you mean mentally,physically, emotionally? The reason why I ask is it depends on how it is effecting your daily life as to how you should get help coping.
First, everyone has a different way of coping so no one person can tell you how, you have to do whats right for you. My son Trey is 13 mo and he has ONH and we have taken him to Thailand for stem cell therapy. The only thing that holds me together is hope. There are other factors that help like staying busy with all his therapys, going to school, we are in the process of moving now, anything that is productive makes me feel good. Sometimes I think I might be in denial, sometimes I think I have to stay strong b/c my husband isn't, but most of the time I just tell myself it just doesn't matter. I love my son so much that I wouldn't care if he had every challenge in the world I think he is perfect and so what...so freaking what if he is blind, he is the light of my life.
I also think that therapy is helpful (not medication) but talking to a therapist or a preacher. Whatever you do...just do something, the longer you wait to get help the deeper your depression could set in. Just remeber your daughter is a perfect soul and a gift from God, consider yourself lucky for it is an honer to have been chosen to take care of one of God's special children.


im just hoping that she is stong willed and will be able to follow her dreams and i no im lucky to have her i lost a baby before her older sister so i no not to take this as a punishment shes my world i couldnt careless if  she was blind  or had any other illness shes still my baby and i wouldnt swap her for the world


 





 

Emily - posted on 04/05/2009

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Quoting Katie:

When you say you are having a hard time coping...do you mean mentally,physically, emotionally? The reason why I ask is it depends on how it is effecting your daily life as to how you should get help coping.
First, everyone has a different way of coping so no one person can tell you how, you have to do whats right for you. My son Trey is 13 mo and he has ONH and we have taken him to Thailand for stem cell therapy. The only thing that holds me together is hope. There are other factors that help like staying busy with all his therapys, going to school, we are in the process of moving now, anything that is productive makes me feel good. Sometimes I think I might be in denial, sometimes I think I have to stay strong b/c my husband isn't, but most of the time I just tell myself it just doesn't matter. I love my son so much that I wouldn't care if he had every challenge in the world I think he is perfect and so what...so freaking what if he is blind, he is the light of my life.
I also think that therapy is helpful (not medication) but talking to a therapist or a preacher. Whatever you do...just do something, the longer you wait to get help the deeper your depression could set in. Just remeber your daughter is a perfect soul and a gift from God, consider yourself lucky for it is an honer to have been chosen to take care of one of God's special children.


 

Katie - posted on 04/04/2009

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When you say you are having a hard time coping...do you mean mentally,physically, emotionally? The reason why I ask is it depends on how it is effecting your daily life as to how you should get help coping.

First, everyone has a different way of coping so no one person can tell you how, you have to do whats right for you. My son Trey is 13 mo and he has ONH and we have taken him to Thailand for stem cell therapy. The only thing that holds me together is hope. There are other factors that help like staying busy with all his therapys, going to school, we are in the process of moving now, anything that is productive makes me feel good. Sometimes I think I might be in denial, sometimes I think I have to stay strong b/c my husband isn't, but most of the time I just tell myself it just doesn't matter. I love my son so much that I wouldn't care if he had every challenge in the world I think he is perfect and so what...so freaking what if he is blind, he is the light of my life.

I also think that therapy is helpful (not medication) but talking to a therapist or a preacher. Whatever you do...just do something, the longer you wait to get help the deeper your depression could set in. Just remeber your daughter is a perfect soul and a gift from God, consider yourself lucky for it is an honer to have been chosen to take care of one of God's special children.

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