Posted by: Nancy Brown | July 29, 2007

The cruel world!

The last few weeks have been an emotional ride. Not really from one thing or the other but just in general. I have come to face some harsh realizations that may not be “positive”

A few months ago I received a comment about how my attitude was harming Tyler. This person also said that my blog was negative and that I should stop writing them. Well lets be frank and honest with the real world. Is it always peaches and cream? Not really. We all have bad days.

So here is my disclaimer… If it was you that wrote it ( and I know who it was since I have your isp address and it wasn’t that hard to figure out) then stop reading. If you don’t like the negative aspect of what we deal with then go somewhere else. If you think it is just me that has some other ideas of preemies that aren’t portrayed in the media go visit Preemie experiement. If you want to keep reading OK!! Then DO!!

The reason I title it the cruel world was because one realization that I came to was that the world that I have to raise my son is not a nice one.  I was doing my job and was talking to a kid we will call K. He was coming into the builiding that I was in and I asked him who he was ( as I had not seen him before) He told me who he was and that it wasn’t his first time there and I should use my eyes because I have four of them. ( I was wearing my glasses and K is at least 20 years old) I was flabergasted. I was so shocked an adult would say something so first grade.  That was when the realization hit…. This is what I will be sending Tyler out into.

I wear glasses. No big deal. More often than not you will see people with glasses or people who wear glasses to read. It isn’t uncommon. So what is the big deal. Who says something about it? This K person will be reproducing children ( heaven help us) and what will he be teaching his children if he acts like that?

When people find out I have a child that is almost 2 that weighs  just over 20 pounds and can’t walk I get looks. He looks younger than he is and yet the looks we get are hard. He can’t walk. Not a big deal you say….( He CAN walk but won’t walk. He can get there faster crawling.) Well tell that to the people who are whispering ( loud enough that we can hear) and give us those looks of ” oh you poor people”  We aren’t “sad” about him not walking. We are sad about the things that get said. We can deal with our own personal sadness and disappointment. It is the not understanding that comes with others.

The misinformation about a Preemie just floor me. Stacey at preemie experiment talks about some ( and gets the same reactions that I get.. STRANGE huh) It is a hard thing. It isn’t going to go away. One thing that bothers me is that I have had someone in my “family” circle say how my sister is so strong to go through what she does and that she has to work so much with her child ( he was born with a kidney defect.. go visit and read!!) But I am just someone who complains about having a kid with “issues”. With no recognition that what I deal with there is no fix.. no cure. This “person” doesn’t see that it isn’t Me that is holding him back. Of course this person would know that if she had compassion.. even a little and would ask questions. Try to see it from our point of view instead of that we are upset or complaing. Again… another reason that the world is cruel. Since this person doesn’t see where we are coming from I am afraid of what will be said, done and taught.

Tammy ( my sister who has a child with the kidney defect) was talking to her oldest about some of Tyler’s issues. Lexi didn’t understand why Tyler can’t see well or why he isn’t walking yet or why he has a shunt in his brain. In Tammy’s kind way she tried to explain that when Ty Ty was born he was born he was so tiny that his body made his head have a problem. That he bleed in his brain. That bleeding caused a hole in his brain. That is why the rest doesn’t work the right way. In her innocent way she said ” Why can’t he have a transplant like Kayden did?” Tammy was telling me this story and at that point I finally had a way to explain it to Tammy.. Yes her child will have life long issues. We do as well and we can’t “fix” anything. there is no transplant for a brain, eyes, and not work CSF. We have things in place to compensate or the non working parts… But there is no “cure”.

Tyler will not be growing up with me saying there is something “wrong” with him because there is NOTHING “wrong” with him. I don’t think there is something wrong with him. I think he needs to understand that he is different than some people and this is why you are different but that he is the most amazing and smartest little boy. What my wish in the world is.. is that the parents TEACH their kids that same thing. The five year old that doesn’t like that boy because he is different.. they heard that from their parents. Not from anyone else. Just like “k” at the begining of this.. He is teaching that there is something wrong. Same as the person in my “family” circle. If I am afraid of telling you something because I know you will be cruel and mean.. I will stay away. I will not subject my child to that cruelity. He is the love of our lives and the mean cruel world can be just that. And for now, we are just going to be looking at it from the window.

My hope is that as we go about teaching Tyler that people are different, he has an understanding of just how special he is. He is a miracle. He has given me something that I can only dream of ever fully understanding. He has taught me so many things and have brought me and Dallas such great joy. With that I have promised ( a long time ago) that we will be patient and try and help others understand what it has been like. If you are reading this… Teach them. Teach our children that there is nothing wrong with different. In order to teach… You have to understand.. there is nothing wrong with different. Teach them compassion. If you don’t have compassion…. FIND IT!!!

                                      

* Family circle is not referring to just relatives… several things have happend…Family is a term I coined for support.. or a suport group.. or someone who SHOULD give support.*

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Responses

  1. They can do anything they want to do! My Z will know that he can’t always do things the same way his sister can BUT he will be able to do them just in HIS way. Its up to me to make sure my children are aware of the world and make sure to see everyone as special. Good blog!

  2. Nancy~ I just want to give you a hug. I know that these things can be hard. I’m so sorry that you are continuing to have to go through it. Ty is doing wonderful and you are a great mommy to him. He has and is going to bless you so much more. I’m sorry for the mean things that these people have said and the sad reality that it might not stop. You can believe I’m teaching my children that different isn’t bad. MUCH LOVE! 🙂

  3. Nancy,

    There is absolutely nothing wrong with Tyler. He is an angel…anyone who knows him knows that. Everyone is different in their own way, and there is no such thing as bad different. You are a wonderful mother, and if you have a bad day, you are entitled to it…everyone is. Keep doing what you are doing, because you are raising a smart and sweet little guy.

    PS. Thanks for the food info…I will definitely check those things out.

  4. Nancy, There are a lot of mean people in this world but there is a lot of love too. We have it for our children and each other and it’s our job to help spread it to others. We may not always get the response we want or deserve, but if we continue to teach our children Love, then thats what matters. Hopefully they will even learn to love those mean people we are trying so hard to ignore. I love you and Tyler and Dallas and I am SO grateful for you. And I am so proud of Tyler and all the amazing things he does and what such wonderful parents you and Dallas are. Don’t let the negative people get to you. You know whats really important.

  5. Thanks for the comments. I was not looking for sympathy but understanding.. thanks for understanding….

  6. Unfortunately, I think we all understand in our own way. This is the world we live in. But we can keep trying to make it a better place. And you are doing a wonderful job. I love you.

  7. You’ll get understanding from me too!

    Nancy, I do NOT see you as being negative and I am sorry (but not surprised) at the way you are getting treated.

    Sending hugs your way.

    Stacy

  8. I for one can’t believe people would be so freaking rude to leave a comment like that to you on YOUR site for YOUR child, but then again, people are RUDE and IGNORANT..I too find myself so frustrated..Kellar gets stared at so much in public b/c of the helmet..This kid hollers out in Target last wk “what’s wrong with that babys head” I was furious..The mom just stared and I finally said ” there is NOTHING WRONG with him and walked off..Parents need to start teaching them manners and that it’s ok that others may be different or b/c we don’t all look the same…

  9. Nancy,
    I totally understand where you are coming from, your not negitive at all . Hurtful things where said and done and the person who did it never said there sorry to you which is sad .
    Ty is a little angel and he will do things at his own speed.
    Lots of hugs to you and Ty !

  10. Ahhh…don’t you just love all that wonderful support…that sucks the life out of you! lol!! When Gus was here, there was a lady who really made me feel horrible because I wasn’t feeding Gus solid foods…and she said that is why he was so small. Well, Gus only had a smidge of his small intestines which is where everything is absorbed. Sure, I could have feed him a bunch of food but it would have ran right through him and then we would have had bile burn on his bottom which is not comfortable. I think people just can’t wrap their minds around the fact that there are times that that there really truly is nothing that can be done to “cure” a child…

    ok..I’m babbling..not enough coffee yet! I just wanted to say “Right on, Sister!” You’re a great mom and I love that I’ve met you!!!


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