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did you feel guilty when your child was diagnosed?

Posted by on Jul. 16, 2009 at 9:51 PM
  • 16 Replies

this post is for any moms who has a child that has been diagnosed with something......

since the morning i found out i was pregnant, my biggest concern has been that something would be wrong with my child......i have been terrified that she would be born with some horrible disease, or would get something horrible later in life.

when she was born she had her umbillical cord wrapped around her neck twice and didnt breathe for the first ten minutes of her life.

six weeks after she was born i found out that during my pregnancy i actually had a placental abruption, and realized that i could have potentially lost her.

now she has been diagnosed with torticollis.....i realize that this isnt a horrible thing to be diagnosed with.  i guess it is somewhat common and infants  outgrow it.  and i also realize that there are so many other things out there that are  much more dificult for a child to be diagnosed with.

but no matter how serious the diagnosis is, i still feel so guilty and upset about it.  i feel so bad for my poor daughter and am so worried that she is in pain, and am also scared that she is going to have problems with development later in her life.  and i just feel like somehow i should be able to stop it.

so......has anyone else felt like this?

by on Jul. 16, 2009 at 9:51 PM
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Replies (1-10):
NattysMommy
by on Jul. 16, 2009 at 9:53 PM

My DD has many problems and I originally felt that they were my fault but I don't feel like that so much anymore...had lots of time to get over it. I used to cry about it... 

mickysmom5
by Member on Jul. 16, 2009 at 10:01 PM

Tonight as I was in my group...."Mom's Helping Mom's With Special Needs Children," it hit me what the younger Mom's may be going through.

Guilt: A Mother carries her child for 9 months (approx.). When that beautiful child comes into this world and the love pours even more into the mothers heart. She can't wait to see if it has all 10 fingers and toes. How much hair does this child have? Oh how beautiful that baby is!!!!! It's the most beautiful baby that has ever been born....And then, maybe while still in the delivery room, maybe a few days, a few months, even a couple of years later the doctors say....this child has a disability. The Mother's heart sinks. Oh she still loves that child. But to know that it isn't perfect causes a Mother to wonder, "What did I do wrong?" "Is God punishing me for something I did?" "How could I have let this happen?"  She may go back all through her pregnancy to check where she went wrong. "HOW could I have done this to my baby?" Then she watches her baby struggle to do what comes naturally to everyone else.

Hurt: She hurts so bad for this child. Her heart breaks every time that child struggles to learn. And still she wonders, "How could this have happened?" And she aches to take this disability away from her child. She wishes it was her instead.

Anger: Then she gets angry at God.  At the world. At herself. At her husband/boyfriend because there is nothing she can do to fix her child. And every time she sees her child struggle she gets even angrier.  And then others who don't understand stare and she gets angry because her child is treated like a freak.  How could God have let this happen? Doesn't God love everyone? How could he have put such a terrible thing on this baby that hasn't even had time to do anything wrong in its life?

Pain: Oh the pain in her heart. Sometimes it is so hard to bear. She feels so alone. She feels that she is the worst mother in the world because she has to make her special needs child fit into her world. The repetitious things are sometimes more than she thinks she can handle. The disappointment when that child gets so close to accomplishing something and then, it doesn't happen. Once again her heart breaks. She sits and watches her child and tears fill her eyes. To watch her child struggle to breathe, or that child has a seizure and she sits and watches its body jerk and then go limp. She has been pouring medicine into this child that is supposed to help them....but, its still not enough. She has to hook this child up to a machine to help it survive. It just doesn't make sense.

Over the years her heart has been broken so many times. Over the years her life has become nothing (or so it seems). Over the years, her life has been put on hold for this child. She sits and waits for that moment that someone else can be with her child so that she can have a break. Does she work or does she stay home? What if that child needs her? What if someone touches that child inappropriately and that child can't tell her? What if someones child bullies her child at school, or a teacher, or on the school bus? Which brings in Fear that the Mother goes through.

Fear: The fear of making a wrong decision for her child. What if that child needs an operation, so the doctor says. Are they right or God forbid, is it a money making gimic thing for them? Is the child ill and can't tell her....does it make matters worse by making them do the things that others say they have to do? Is she going to be in trouble by doing what she feels is best for the child, just to find out that it is against some mans law?  Is this or that going to cause this child to have a seizure and cause them to be hurt by doing this or that? Then there is the fear of that child growing older and how do you know if that child is having chest pains, or pain in the  appendix or anywhere else that you can't see? What are the signs? What do you watch for? I think fear is the worse of everything that a mother goes through for her child. We all fear the unknown to a certain extent. But, the fear of  what goes on with our special needs child is the worse.

Why won't people listen to her? She knows her child better than anyone else! Why won't the doctors, teachers, friends, family try to understand that this child is different? Why can't she get over the feeling of being so lonely? It feels like the world has gone on without her. Now friends don't come around. Or if friends come and bring their "Normal" child...she sits and wonders what her child would be like if only......but, that she will never know. And her heart breaks again. Yet, She still hangs onto that little bit of hope that one day this child will accomplish this task or that one. That day that her child finally says..."Mommy," that will become a day of rejoicing. Or it may not happen at all...and her heart breaks one more time.

Mothers of special needs children are special people that God has entrusted to take care of His special child. That is an honor! But, it seems that God forgets to take care of Mom. Which of course is not true. He is there for us....its just that with such a broken heart...it is hard to hear Him, feel Him, or even know if you can trust Him anymore. But, He is there holding the Mothers and giving them strength to carry on. A Mother may know this but, then she sees her child struggle again and once again...her heart breaks.

So what does a Mother of a special needs child do???? They go on with their life. The only difference is her priority has changed. It is no longer about herself but this precious child. Living with the Guilt, the hurt, the anger, the pain. And her heart breaks.

I say all this about a Mother. I know that Fathers go through some of this anxiety also. But they don't have that bond of carrying this child for nine months. They help (hopefully) with this child, but they are not the one who has to carry as much weight of decision making as the Mother does. So, Mom goes from day to day, with sleepless nights, just wondering, am I doing what is wrong or right. And her heart breaks.

This was written by Ruth one of the group owners.  I know this is how I felt when my child was dxed.  This was posted a few days ago.  I hope everyone can relate I can!

stormcris
by Christy on Jul. 16, 2009 at 11:27 PM

Everyday...sometime I get angry/sad/frustrated because for all my research and knowledge and what the doctors know and everything they are not making things better. I know why I am this way but I feel I must have failed, I didn't do this or I should have done that. It is all on me that stuff was missed and things progressed. It is all on me when anything happens. Such is how I am.

Raintree
by Ruby Member on Jul. 16, 2009 at 11:36 PM

My second son had vesicoureteral reflux and required a ureteral reimplantation to correct it. This was done at 16 months (and while in hospital recovering, he got rota-virus and had to stay and extra week. Yea!). Because of the kidney infection and fever he had at two months (when he was diagnosed)- he required (and is still requiring) extensive dental care. The fever ruined the enamel that was just forming on his teeth before they even descended. All together, he's had the 'big' surgery, and three dental surgeries where they've put him under in the hospital.

Anyway- he's survived! DON'T feel guilty. You did nothing wrong. Just be a good, supportive mother. That's all that is required.

Eat food. Not too much. Mostly plants. - Michael Pollan

And while you're at it, remember that when you purchase food, you're voting with your dollar. Local farms, diversity, sustainability- all these should be positively answered by your vote. 


angie2719
by Member on Jul. 16, 2009 at 11:38 PM


Quoting mickysmom5:

Tonight as I was in my group...."Mom's Helping Mom's With Special Needs Children," it hit me what the younger Mom's may be going through.

Guilt: A Mother carries her child for 9 months (approx.). When that beautiful child comes into this world and the love pours even more into the mothers heart. She can't wait to see if it has all 10 fingers and toes. How much hair does this child have? Oh how beautiful that baby is!!!!! It's the most beautiful baby that has ever been born....And then, maybe while still in the delivery room, maybe a few days, a few months, even a couple of years later the doctors say....this child has a disability. The Mother's heart sinks. Oh she still loves that child. But to know that it isn't perfect causes a Mother to wonder, "What did I do wrong?" "Is God punishing me for something I did?" "How could I have let this happen?"  She may go back all through her pregnancy to check where she went wrong. "HOW could I have done this to my baby?" Then she watches her baby struggle to do what comes naturally to everyone else.

Hurt: She hurts so bad for this child. Her heart breaks every time that child struggles to learn. And still she wonders, "How could this have happened?" And she aches to take this disability away from her child. She wishes it was her instead.

Anger: Then she gets angry at God.  At the world. At herself. At her husband/boyfriend because there is nothing she can do to fix her child. And every time she sees her child struggle she gets even angrier.  And then others who don't understand stare and she gets angry because her child is treated like a freak.  How could God have let this happen? Doesn't God love everyone? How could he have put such a terrible thing on this baby that hasn't even had time to do anything wrong in its life?

Pain: Oh the pain in her heart. Sometimes it is so hard to bear. She feels so alone. She feels that she is the worst mother in the world because she has to make her special needs child fit into her world. The repetitious things are sometimes more than she thinks she can handle. The disappointment when that child gets so close to accomplishing something and then, it doesn't happen. Once again her heart breaks. She sits and watches her child and tears fill her eyes. To watch her child struggle to breathe, or that child has a seizure and she sits and watches its body jerk and then go limp. She has been pouring medicine into this child that is supposed to help them....but, its still not enough. She has to hook this child up to a machine to help it survive. It just doesn't make sense.

Over the years her heart has been broken so many times. Over the years her life has become nothing (or so it seems). Over the years, her life has been put on hold for this child. She sits and waits for that moment that someone else can be with her child so that she can have a break. Does she work or does she stay home? What if that child needs her? What if someone touches that child inappropriately and that child can't tell her? What if someones child bullies her child at school, or a teacher, or on the school bus? Which brings in Fear that the Mother goes through.

Fear: The fear of making a wrong decision for her child. What if that child needs an operation, so the doctor says. Are they right or God forbid, is it a money making gimic thing for them? Is the child ill and can't tell her....does it make matters worse by making them do the things that others say they have to do? Is she going to be in trouble by doing what she feels is best for the child, just to find out that it is against some mans law?  Is this or that going to cause this child to have a seizure and cause them to be hurt by doing this or that? Then there is the fear of that child growing older and how do you know if that child is having chest pains, or pain in the  appendix or anywhere else that you can't see? What are the signs? What do you watch for? I think fear is the worse of everything that a mother goes through for her child. We all fear the unknown to a certain extent. But, the fear of  what goes on with our special needs child is the worse.

Why won't people listen to her? She knows her child better than anyone else! Why won't the doctors, teachers, friends, family try to understand that this child is different? Why can't she get over the feeling of being so lonely? It feels like the world has gone on without her. Now friends don't come around. Or if friends come and bring their "Normal" child...she sits and wonders what her child would be like if only......but, that she will never know. And her heart breaks again. Yet, She still hangs onto that little bit of hope that one day this child will accomplish this task or that one. That day that her child finally says..."Mommy," that will become a day of rejoicing. Or it may not happen at all...and her heart breaks one more time.

Mothers of special needs children are special people that God has entrusted to take care of His special child. That is an honor! But, it seems that God forgets to take care of Mom. Which of course is not true. He is there for us....its just that with such a broken heart...it is hard to hear Him, feel Him, or even know if you can trust Him anymore. But, He is there holding the Mothers and giving them strength to carry on. A Mother may know this but, then she sees her child struggle again and once again...her heart breaks.

So what does a Mother of a special needs child do???? They go on with their life. The only difference is her priority has changed. It is no longer about herself but this precious child. Living with the Guilt, the hurt, the anger, the pain. And her heart breaks.

I say all this about a Mother. I know that Fathers go through some of this anxiety also. But they don't have that bond of carrying this child for nine months. They help (hopefully) with this child, but they are not the one who has to carry as much weight of decision making as the Mother does. So, Mom goes from day to day, with sleepless nights, just wondering, am I doing what is wrong or right. And her heart breaks.

This was written by Ruth one of the group owners.  I know this is how I felt when my child was dxed.  This was posted a few days ago.  I hope everyone can relate I can!

Wow this is so right on with everything i have thought, or felt over the past 3 years!!! I have felt guilty, sad, alone, scared and overwhelmed. My son was an emergency delivery and had many issues at birth. He was in the NICU for months and then diagnosed with a chromosomal abnormality know as short arm 18p deletion. I have struggled with the specialists, milestones, learning, trying to find equal time for my daughter, my SO, and me time. I have stayed home to take care of him and he is so precious to me, i never get a break....even grandma won't watch him for even an hr because he is autisitc as well and very difficult when he isn't home and with me. I bla,ed myself for so long thinking if i hadn't worked a 12 hr shift on my feet until the day he was born, if i hadn't pulled double shifts or overstressed myself would he be okay. Did i not eat the right things...ect? I love my son and know that he is precious and no matter what i am going to give him the best.

mickysmom5
by Member on Jul. 16, 2009 at 11:43 PM

Ruth wrote this for all the mothers that are going through it so they would not feel a lone.  What a wonderful mom and person

MattisMommy08
by Bronze Member on Jul. 16, 2009 at 11:43 PM

This hits home for me in two ways.  My daughter is going through MRIs and testing to figure out what is going on with her brain.  Nothing wrong with development - yet - but there seems to be something wrong with growth.
What do you do?  When two MRIs come back clear... but there is something wrong.  Do you just start going through a neurology text book and preform test after test until one comes back positive?  Do you sit and wait until more symptoms show up... and possibly be too late?
I had no idea I was pregnant with her until I was 6 weeks.  No clue.  I did all kinds of things you shouldn't do when your pregnant during those 6 weeks... lift heavy - I mean HEAVY stuff, drank, didn't eat right, among many other things I can simply not recall.  Did that screw up her brain development?  The doctors say no, but what dr in their right mind would tell the mother of a 1.5 year old with brain issues that she caused it??  I would lie, too.

Second, this applies also to mothers who have lost a child.  It is the hardest thing to lose your baby, but even harder when there is no known cause of death.  When you have a miscarriage, you cannot blame anyone else.   My little girl was in my belly, so nothing could have happened unless it was caused by me... or I guess nature or god, or whatever you want to believe.  It's just one of those situations that the lack of answers leads you only to one guilty conclusion...


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mickysmom5
by Member on Jul. 16, 2009 at 11:56 PM

My daughter had brain issues too. The cat scans  did not show anything.  We did a SMRI and it showed up. I researched and figured what was going on and forced the doctors to do the test I wanted.  The first was a cyst ittook 5 scans to find the problem. The second one was a tumor it took   3 scans .  Now I know, sometimes the person who reads it reads it wrong.  Take the scans and get a second or third opinion. Also go into some of the groups put in her symptoms maybe someone else has been through the same thing and can shed some light on what is going on .

Jamie1972
by on Jul. 17, 2009 at 3:31 PM

originally when my son chris was dx with epilepsy i thought i was the worst mom in the world. the docs figured it was caused by some kind of head trauma. well yeah its possible the kid fell down 2 different flights of stairs with in 6 months. he was around 1 when the first time he fell. so i figured must be my fault. i was paying attention. if i had brought him in the bathroom with me when i had to go he would never fell that first time. if i hadnt been in a convo with my mil and paid stricter attention then he would never had fallen a second time. but the docs were like yah it have been from head injury but keep in mind its also heredity. my mom has epilepsy. so she felt guilty too.thinking she gave it to him.and as a result of his epeilepsy it has left him developmentally delayed,learning disabilities,speech delayed,mildy retarded and with pdd-nos. so yah when i got all these dx i felt guilty,sad,mad and ashamed.but now he is going into the 5th grade this fall. no longer needs speech thearpy. and with the right teacher and program he will become a good student. he maybe 2 -3 years behind other kids his age but he has learn and grown so much. hes my special guy and i love him with all my heart. i dont see his disabilities i just see a boy who loves to learn and loves toplay and explore.

Pepperlynns
by on Jul. 17, 2009 at 3:41 PM

i honestly could never imagine what a mom goes thru when their child is diagonsed with something...i was sick to my stomach when my oldest had jaundice when she was born and had to spend a week under a bili blanket..im so blessed my babies are healthy






I'm a 30 yr old mom to 3 kids 9,7,5 yrs old..Wife to  the greatest man in the world of 11 yrs..SAHM..Not looking or giving advice on how to raise MY/YOUR kids..I'm a smoker,a toker,a social gulper..We live in Texas..Im spiritual,anti-gun,non-organic,swearing,President respecting woman..We make good money and buy American made products..

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