I’m not going to lie, folks, I have kind of closed us into a bubble, of sorts, upon returning to Panhandle. I was not only desperately disappointed and frustrated at how we were treated in Fort Worth, but I was also dealing with some relationship issues with my Cable Guy, feelings of complete loss and grief over my mom, and just all over depression.
I have struggled, since last week, with the feelings that Mom got me to Cooks and then left me. I know, I know.. she is right here with me, but I was so SURE that Cooks was where she was pointing me.. But once we got there I never once felt her presence, I never felt that tingle of a eureka moment, like I did in Dr. Hashams office.. she was not there… And it made me feel even more alone.
As the days have gone on though, I realize how much support I really do have… in all of you. I realize I am not alone, that I have created this island of loneliness and desolation in my own mind.. that all I have to do is reach out and there is always going to be someone there to listen, support, encourage and love me. Thank you all for that!
So, we are back to square one, so to say. I need to start with how I am processing all the info I did get while at Cooks, and what I have decided to take away from that whole experience.
YES, I am VERY HAPPY that Owen does NOT have a visible brain tumor, cancer, lesion or anything else going on in his brain. That could have been a devastating and deadly discovery! I am so thankful that he is not suffering from something deadly and terminal! I never thought he was, but it’s always a relief when you hear the words “We see nothing”. No matter how devastated I was by them not seeing a lesion on his Hypothalamus… I was, at the same time, so happy my son does NOT have a brain tumor.
I do not doubt that Owen is having some types of seizures. I have seen them several times upon our return. I do not doubt that there is really something wrong with my son. Do I still think it is a Hypothalamic Hamartoma? I am not sure. All I can do now is keep gathering my info, gather his records, rigorously film Owen’s daily activities , document, research and eventually this will lead to finding the right doctor with the answers.
I have made a small discovery that might lead to some relief in a few of his symptoms, but before discussing it here I need to take him back to Dr. Hasham and inform her of our trip to Cook’s and see if she is open to testing him for a few other things. I am considering getting a referral to the Pediatric Neurologist in Lubbock, he is the Doctor responsible for finding the Hypothalamic Hamartoma in the boy in Amarillo. I am also in the process of reaching out to this boy’s mother, maybe she has some advice. Here is the link to his story if any of you would like to see: http://www.connectamarillo.com/news/story.aspx?id=755706#.UwDmMmbna71
Owen and I did a LOT of talking on our trip, especially on our way home. I will be restricting his computer and Xbox time even more, we will have an activity jar of things for us to do together each day, I will spend even more time with him one on one, and he will start going walking with me. We have a goal of starting hiking together next fall. We want to be able to get to the mountains and backpack, together. So before we can hike in New Mexico… we need to be able to walk in Texas without getting tired on the first mile. I think the fresh air and goals will do us both some good as we keep trying to figure out what really is wrong with him.
He is pretty encouraged by what we have discussed and decided, he is willing to cooperate and participate…. so if anything came out of our trip that I can count as positive… it’s that, in a way, I seem to have gotten my son back, he is back to wanting to participate in life, he is not as depressed. He just seems happy that I cared enough to take him to Fort Worth and fight for him. I think that counts for something 🙂