Posted by: Nancy Brown | June 7, 2007

It doesn’t get worse?

I have met so many people who have kids with l needs. I have watched Mel and Crew and have watched the many many things he has accomplished. He is doing awesome. Lisa and Ethan and her chronicles and the ups and downs that she has had. Steff and Joe and their struggles. Wendy and the twins. I still have no idea which one that Ty will marry.. MAYBE BOTH!!  Then there were the “local” ones. The ones that I thought I could turn to. the ones I thought would understand the most. They did. .. Most of them.

In a blog of Micro preemie twins Eden and Holland her mom describes the term that we hear a lot when you have a brain injury. The term is “it can’t get much worse.”  She describes the “getting worse” as they get older. This is an amazing point. It puts a lot of my feelings into words.

While we don’t have CP we have some “issues” in other areas.  Though they are small and sometimes go unnoticed by the normal person in the store they become more apparent as the days and year goes on. 

We have a shunt. While it doesn’t impede our day to day activities the thought when he is “off” just a little or runs a high fever or spends the day throwing up is ” is it his shunt? Do I get a scan? or is this just normal kid stuff?” Something that becomes a constant worry.

We are not walking alone. As we start putting him with other kids his age the defeceit is more apparent. Because he is so tiny it doesn’t bother us to carry him. It is the look that he gives when the kids are running around in circles as he sits there and watches. What will happen in the future? What will it be like?  While I know he will do it, when is the next pressing question.

He doesn’t talk. We see the frustation when we don’t fully understand what he wants. I am getting pretty good at figuring out ” Tyler talk”  The frustration is still there. He does do some pretty cute things. He “tells” us he is hungry by smacking his lips.. Its super super cute but words would be nice!! ( Not to discount the mom and dad that he says and knows what it means)

The hardest for me is his vision. While I see him making leaps and bounds on the other stuff there is no “improvment” in the vision. No amount of therapy, or whatever will change what damage has been done. It will get worse as he gets older.  He has nystagmus, which usually doesn’t allow kids to drive. Will he have coke bottle glasses? What will people say? What will his future hold? His eye sight is BAD. As an example, I can’t see well AT ALL. My prescription is -2.75. Tylers is -9. Most people who are legally blind are about a -13.

The last few weeks have been a huge roller coaster of acceptance, figuring out where we stand and getting use to the ideas that present themselves each day. You do get to a point where you accept what happens. It is just getting there each step of the way.

I have gotten to a point in my life where several things have had to go. While some of those things have been easy to cut out others have been hard. The “harder” ones are getting easier as the days go on . I guess that means it is time to move on.

Those who read my blog or have come here because of other posts on other blogs you know what I am talking about. ( Those who don’t can skip it and it won’t matter) But I am tired of others thinking that I asked for this stuff to happen. For the mean and cruel things to be said is not something anyone calls for. By doing what you did and having others comment on them was cruel. So, you win. I am out.

I have gotten a few emails that have been so mean from the moderator of the Yahoo group I am in that I no longer have a support system there. I hope that those in the group that I have become friends with can continue to be my support system. As I go through the Journey here I know I will met moms who get it just the same with less of the cruelty involved.

I don’t know what the future will hold. It may not get worse but I am sure it will be different.

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Responses

  1. Nanc, Just know that you will have the support of your little sis. I have seen the fall backs that Ty has done but I have seen the improvements. He is a little miracle. I will do ANYTHING for my little bubba! I miss him so much! I am sorry that people can be so cruel and tell you that you ask for this to happen. I don’t see how you would WISH that bad stuff happens to yourself or your child. I love you guys. Just know that you will always have my support. You can call me at anytime and vent or show your excitement about Ty! I miss him, give him lots of hugs and kisses for Aunt Nicky! I am going to make time to come down, I promise!


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