Sunday, June 08, 2008

A response to a comment...

I just read a comment that was posted on my last posting and I am really taken back by it. I would love to know who it was so I could reply privately, because my intention here has never been to offend anyone, if I have then I apologize, but I have read and re-read my post and I don't see where I said anything wrong...

Just because your child has a label does not make you a bad mom.

I had not once said anywhere in my post that it would make me a bad mom if I had the dr fill out the from with the words permanently tube fed...

It is unfortunate that our society requires labels to provide help for them but denying your child help because you refuse a label what about that.

I agree that it is drastically unfotunate that our world requires labels, but I can understand why we need is so that services don't get taken advantage not applying for the funding, I was not denying any services to my child. It just meant that we would be required to cover the cost of those items...which we would obviously have NEVER denied...

I have 2 children with labels and they would not be making the progress they are today without the help we receive.

Actually my son is going through some well needed testing right now. For him it is the right thing, because he will get the much needed help that we have been waiting for. We have considered it a huge blessing because this is testing that we would not have been able to afford. He will be labelled after tomorrow and that is fine because it is needed.

Each child is special and unique and I don't think God views me differently because my child has a label.

Actually, I believe that I said that as well.."Our worker also asked about a certain other funding that we had applied for, and I told her basically the same thing. In order to get that funding I need a dr's note explaining that Faith is "disabled". I just don't want to go there. I think that labelling kids is wrong, everyone is different and just because of that it doesn't mean that we are not "able"..." I also never said once, in my post that God viewed me differently because of the decision that I made...or that God would view you differently because of your choice...

One doctor told me he likes the word "differently" instead of "disability" These kids are just as "able" they just do things differently or in a different time frame then other children.Just my two cents!

I agree with you as well, and your dr. I consider that my son "learns differently" and we are finding out the best way for him...If you look at what I copied from my post above, you would see that I said almost the same thing.

I was, in no way, saying that labelling is wrong.

With Faith, it is extremely different. If you have followed our ordeal, you would fully understand. We were told that she would not live, if she did she would have CP, be mentally retarded (dr's words) blind, deaf, and have seizures.

Right now, she is an absolutely normal baby. At her last appt she was in the "normal" range for a 6th month old. This is where I had a hard time getting the "label". I really feel that there are so many other kids and families out there who need funding and help, and if I take it for my "normal" child, that would be wrong, when we can have it covered elsewhere then the government. That way, funding is available to those who need it.

Faith is also already labelled. We have already received a significant amount of funding just because someone added letters...MFTD that stands for Medically Fragile/Technologically Dependant. Because of that we can pay people to come and look after her if necessary. That is way more then we will ever need, so I am thankful for that.

I don't want to confess over her that she is permanently tube fed. That would be her disability. I don't consider it an issue at all when she is, at this moment, taking over half her required milk orally and less than half through a machine. This is why I didn't want to say that about her.

This is also just how I feel, I see absolutely nothing wrong with anyone else and their decisions. This is something that I feel I have always person and on my "space" here. I cannot judge someone else for their parenting styles and choices, because I have not walked in their shoes. But the same comes back, no one has been in my shoes and they should not judge what I choose to do.

Faith has many serrvices already in place...we are booked solid with physio, occupational therapy, speech and language pathology, nursing, dieticians, regular dr visits, hearing testing every 2 months, vision testing every 3 months...

I in no way want to hold her back from anything that is available to her, but I don't want to take funding away, if it is not necessary, and find out that someone else is not getting what they my son, who was chosen to be one of the 3 in his school of 300 for this testing...

I am sorry if my post came off like that I was just excited to see God working that way in our lives and how everything fell into place for us, as we believed it would. And like I said in that last post, what you speak and how you speak really affects everyone around you and I just wanted to share what can happen.


  1. Interesting post. I have been faced with similar issues regarding funding and Dr letters for disability. I'm glad windows were open for you to get the funding without the labelling. After months of consideration I have taken the stance that for me the words "for now" or "at this time" follow these labels.
    I also which at the same time everyone would see kids/people with a disability at God sees them and not the shell/body they come in.