Many things have resolved this week, some of which I never thought would be resolved, for this I am very grateful, but I also realize some things are just a part of my life, my brain wiring, and from these I may never be totally at ease.
This week I was directed by a friend to a blog of a woman whose daughter has NLD. She writes so eloquently and I feel her pain for I have felt it too, as a dr she knows the reality of her daughters disability, but as a mother she aches every day for her inability to make things better. Reading her blog has made me realize I am not alone and also has made me realize how lucky I am that Keaton is very dis-similar to her daughter. It got me thinking that perhaps Keaton's disability, which I know is caused by his hydro, may not be the typical NLD, but one that has more to do with hydro issues vs genetic. As I dug deeper and researched it more, I found that many drs feel the same way.
Imagine my surprise when I complimented her on her blog and mentioned that Keaton hydro had contributed to his issues, and she responded that she too had a son born with hydro. When discussing it further we realized that our stories from pg thru birth are almost exactly alike, down to what drs told us and how amazing our ysbo are doing now. They even both have hyper sense of smell and very easy gag reflexes. At first, I was sad that even though they were so much alike her son( who is several years younger then Keaton) has no issues, yet Keaton does. But as we continued our conversation, I realize that perhaps they are very similar and that she only compares him to her daughter and that her son is more normal then different. It made me see Keaton has more normal than different and I was able to finally put his issues in perspective. Learning will be harder for him, but he does not have many of the trade marks or severity of other kids with NLD. I now believe in Keaton's issues being more about how he learns, oral and verbal learner, and that he can learn anything if presented right and repeated enough. This can be seen in how quickly and well he is learning to fly.
She was also able to give me medical information, such as the fact that kids with ventriculomegaly(a term I have never heard of and different than hydro because it is just enlarged ventricles, with no genetic or physical reason why, which is what Keaton has), tend to do very well. She also led me to sites that shows that nothing I could have done would have contributed to it. A guilt that has been haunting me ever since Keaton's second grade teacher suggested it.
This revelation allows me to look at things different. Such as this week when Keaton's soccer coach gave him the award for most versatile player and awarded him the player who put forth the most effort, I was proud of him and felt the coach had gotten him just right. But Keaton was disappointed. Why? because he would have rather gotten the friendship award, which would mean he attracted friends "like magnets". Usually I would worry that he was having trouble with friendships, but this experience with Kris and her blog allowed me to see it in a different light. Keaton does make friends, true he is harder to get along with then some kids, due to his black and white personality and loud voice, but he is also easier then others. At the same age, his brother, who is Mr. Social today, also had the same difficulties.
Then,when Keaton was hurt, emotionally and physically, by someone he thought was a friend this week, I was able to go to the parents and express how hurt Keaton felt, when usually I would have questioned his involvement. This showed me how wrong I had been towards him. And when the parent of the other child started to blame Keaton, I could, with certainly, know that the story Keaton gave me was the truth.
So, even though this has brought me some piece of mind, I still realize that it is all on my shoulders to make sure Keaton succeeds in the goals he wishes to. The weight of making sure this happens and that I don't over do things, nor under do things is sometimes overwhelming. What is too much or what is not enough? This will always haunt me as teachers look at me in annoyance when I ask for extra information to help him. or even from himself when he would rather be out playing soccer then reading "that" story one more time to give him better comprehension.
So even though I have resolved so much, I still ache over my inability to make it better for Keaton, just like Kris does.
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- Karen Rothfus
- Alta Loma, California, United States
- I am a wife of 28 years to Kevin, a pilot, a mother of 22 year old Kellan and 15 year old Keaton. I am caretaker to a zoo of animals including dogs, cats, chickens, fish, birds, turtles, etc. I am a gardener, a cook, a writer, a painter, a teacher, and I am truly blessed to be able to live life the way I wish too.