Posted by: Nancy Brown | October 18, 2006

I know it happens to everyone. I know EVERY baby does it….. But do they!!

You know THAT phrase. The one you cringe when someone says it. Makes you realize people don’t really get it. It is not just one phrase but several. But you get my drift.

For those that don’t know our history, Tyler was born 14 weeks early. Because of this early birth he had a grade three and four IVH with PVL or cystic changes in his brain. Basically it means that because his brain was bleeding he has brain damage. So far this hasn’t been an issue. But we have been slowly noticing some things that are not right.

One thing we were told when we left the NICU is that he would have no self soothing skills. So the whole crying it out thing just doesn’t work in our house. He would cry for hours if we did that. But lots of people said they have done the same thing BUT huge difference no brain damage.

Ty won’t sit by himself. No big deal. I know lots of kids are behind. But everyone that should be wanting to help won’t. We get early intervention that provides therapy in our home. They don’t feel that Tyler needs the same things that I do. This last week they have done retesting on Tyler. The retesting showed where is delays were yet we STILL didn’t get any new  services. Its like I have had to go to the bosses boss in order to get any help.

Ty has some strange seperation anxiety going on. The only problem is …. ITS NOT LIKE OTHER KIDS!!! That is of course unless they have crappy vision. His vison field is about an adults arm lenght away. So once I am out of that line of sight he screams and we start the no self soothing skills. 

I am not depressed. I am actually better than I have been in months. These are just what I want others to understand.  Please don’t tell me you understand if there is not something wrong with your children’s brain or with their eyes. Don’t say you get it when you haven’t walked a day with us. I don’t want you to walk a day in my shoes because I like my shoes. It just isn’t always the way it seems. Some days its hard other days its fine. I like my life.

So…… I know it happens to everyone. Not just the phrase but the realization that I am fine. That I will find SOMETHING and SOMEONE to help me, to understand me. I love Tyler and I have the most wonderful husband.  If you say the phrase at least clarify you don’t know exactly but you have an idea then tell me what you experience is but don’t condemn and don’t call me negative. You haven’t walked a day in my shoes. I haven’t walked in yours. Call a truce….. Don’t use he phrase.  

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Responses

  1. I applaud you. You must be such a very wonderful person with such a powerful soul. I don’t know know if could survive emtionally in the same situation, and so i give you my praise. I am a children’s photographer and my sister’s live in Provo the next time i come to visit them i would be happy to do a photo session with your family and include a CD of images free of charge. If you are interested you can send me your email and i will let you know the next time i am on my way. Good Luck in Life, and I hope you will always have the strength to be emotionally healthy.

  2. Nancy! I think you are doing GREAT!~


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