Did you read JandK families post??

[compassion]

This is something that I have to get off of my chest. I have read most of the post on here, and no I did not go back from months and months ago, but I did read quite a few. Most of you that post things, have pretty normal children, they might be autistic, or slow learners or hyper, but for the most part they appear to be quite normal. If your child can get out of bed by himself, then congratulations, if they can get dressed on their own, then congratulations, if they can enjoy a big breakfast that you have made for them, then congratulations, if they can say to you, Thank you mommy or daddy, I love you, then congratulations, if they can brush their teeth and wash their hands, then congratulations, and if they can run up to you at the end of the day and give you a big hug, then congratulations. The other side of all of this is, having to get up all through the night to rotate your child so that they don't get bed sores, having to get up and physically pick them up out of bed and change them and feed them with a feeding tube, and then have to give them breathing treatments throughout the day, then have to give them lots of medication in that tube in the belly so that they can survive, then at the end of the day having to physically give them a bath and lift them out of the bath and change them and by the way, they wear a diaper and they don't talk, so THIS mother has never and will never hear I LOVE YOU MOMMY!!! And you want to tell US to get over it?? So if I feel that my son should have the front of the line pass so that he is not stagnate and does not developed a pneumonia and end up in the hospital for weeks on end, then maybe you are the ones that need to get over it. I thought this was a board for disabled people to go to to help out, and all we got from you was that we are not like you so you deleted our post. Sounds like discrimination to me, just because we do not have ADHD or aspergurs ( spelling), or autism, I only wish that we only had to face those problems every day instead of what we do have to face. Do people star at your child and call them cruel names because they have facial anomalies, do kids make fun of and not want to be around your child, even though they did nothing wrong. How dare you tell me to get over it, I got over it 16 years ago, perhaps you need to educate yourself in what disability actually means and then maybe you can get over it.

 

[Goofyluver]

I don't really understand what incident you are referring to...but wanted to offer a . My son, although he does not have the same disabilities described in your post, is also disabled. And, I thank God every day that I am blessed enough to have him walking and talking...even with everything he is dealing with. Many told us he would never do these things.

I see that something has upset you. All I can offer is my sympathy and say that I hope tomorrow is a better day.

 

[SueM in MN]

I don't really understand what incident you are referring to...but wanted to offer a . My son, although he does not have the same disabilities described in your post, is also disabled. And, I thank God every day that I am blessed enough to have him walking and talking...even with everything he is dealing with. Many told us he would never do these things.

I see that something has upset you. All I can offer is my sympathy and say that I hope tomorrow is a better day.

Very well said, Goofyluver
My daughter doesn't walk or talk and never will and I do have to get up during the night to turn her or sit with her when she has a seizure during the night. I know what it is like to lift her out of bed each morning, dress her, feed her, bathe her, lift her in and out of her wheelchair and at the end of the day, lift her back into bed to start a new cycle.
I know what it is like to be worried about what will happen if she has a seizure or a nosebleed during the night and I don't wake up.
I know what it is like to have a child in liver failure from medications that I agreed to give her to control her seizures. Thank God, she recovered from liver failure and didn't need a transplant, but that was the road we were on. And, I worry each day about whether any of the medications she is on is going to tip the balance between helping and harming her. I know what it's like to dread the passage of time because each day brings me one day closer to no longer being able to care for her. I know what it's like to worry about whether my older daughter will be able to bear the burden of her younger sister after I'm gone. I know what it's like to wonder "what if" and to cry for things my child will never do, but I thank God each day that I am blessed enough to have her, no matter what she is able or not able to do.

I know there are people who have a heavier load than I have, and others who have a lighter load.
I know what it's like to have a friend whose child could walk and talk, but the family was told to value each day because he was likely to not live past 12 years because his heart was a ticking time bomb in his chest. I know what it's like to sit in her living room, guarding her house from a break-in during his funeral, knowing that she found his dead body in the bedroom when he was 18 down the hall from where I sat during the funeral. And, I have the memory of my thoughts at that time about how heavy her burden was and whether I would have broken under it.

I know what it is like to sometimes envy someone's apparently lighter load, but the person carrying the load is the only one who feels how heavy it actually is and their load may be just as heavy to them as my load is to me. I would never be angry at someone just because their load seems to be lighter than mine; I can do nothing about anyone else's load, only my own and how I carry it.

To the original poster, it appears that your load is very heavy and you are to a breaking point. I am truely sorry to see anyone as upset and unhappy as you are. But, attacking other people for not being 'disabled enough' is not going to help. I hope you do find a better day and peace ahead.

And, just like your deleted thread you are referring to, this thread is closing.