My 18 year old son Byron Anthony Hare was diagnosed with Juvenile Huntington’s Disease on September 8, 2011, just two days ago and, the day before my daughters 13th birthday. I can’t say that there would ever be a good time to learn that your baby boy has a debilitating and fatal disease, but I have to admit, the timing really sucked. I’ve decided to write this blog. I don’t really know the reason, except that I felt a need to do it. Maybe it will help someone, someday, somehow.
I guess I should start with telling you a little about Byron. Byron was born on April 8, 1993 in Las Vegas, NV! He is amazing. LOL. I don’t know of many moms who would say their child wasn’t. But he really is! By the age of 18, Byron has read the Bible four times. He loves to read, but he especially loves to read the Bible. Gosh, I’m a minister and I haven’t even read it cover to cover four times. LOL. He loves his horse, Foxy, and he loves his Jack Russell Terrier, Arlis. He has a very unique and witty sense of humor! He always has. Byron is charming, smart (a bit of a smart alec too), and a loving man. He is very compassionate concerning both people and animals alike. He accepts anyone, willingly, at anytime into his life. He loves all people. He’s been that way since he was born. He was very popular in high school, everyone loved him. He graduated this year and I am so very proud of him. Even though he struggled, he stuck it out and DID IT!
Now that he has been diagnosed with JHD, my mind seems to be flooded with memories, tons of memories. I’m scared, sad, confused, anxious, worried and frankly, even a little angry. I’m sure all parents have this mixture of emotions when their child has been diagnosed with something as horrid and devastating as JHD. I am thankful however, that he wasn’t stripped away from me by something tragic, like a car accident or something. At least I get some more time with him. I get to share as many smiles as I can muster, as many ‘I Love Yous’ as I can fit in each hour and a goodnight kiss for every end of every day. But yes, I do know that this battle will only get harder with each day and not easier. I’d be lying if I said I wasn’t a little worried. But there are many things I am worried about right now and I think I just need to focus on the right thing at the right time. I am a very devout lover of Christ and I know that God will provide me the strength, wisdom, endurance and patience I will need, and as they are needed.
Byron had begun symptoms at about the age of 13. Many of them I just didn’t recognize. He had some small outbursts (behavioral outbursts) but nothing really bad. I just assumed it was normal for a young teen boy to lash out every once in a while. But I wasn’t exactly the ‘Joan Clever’ kinda mama so outbursts didn’t fly in my household. Looking back, I feel terribly bc I didn’t know that they were a symptom of a disease. Anyway, by 15 years old, he began shaking (tremors) in his hands while he was eating. Again, not something I panicked over because my father and my sister have tremors (they have not been tested for HD nor do they show typical signs other than tremors). He also began some slowing in his movement and he had ‘poker face’ which I just thought was his ‘look’. I didn’t understand why he didn’t show much emotion in his face, but I didn’t really question it either……I feel so stupid when I look back bc I just thought it was Byron. Looking back makes me angry, because I should have known. Anyway, when he was 17 I really began to get concerned because he seemed to be getting slower and more rigid in his movement. He couldn’t remember things and he was becoming more and more uncoordinated. But even to this day, he seems pretty normal, just slower….well, I guess he seems somewhat normal to me…I know he doesn’t seem normal to strangers bc I see them stare. But when I asked my friends, they agreed, it’s just Byron! So, maybe I was in denial and they were being nice…IDK. IT doesn’t matter now. All that matters now is that I make sure that he has the best time of his life from here on out.
Today, I am more cognizant of the symptoms and can easily see them and I am definitely more understanding now that I know there is a reason. I took him to my general practitioner back in August of 2010 to see if he thought there was any reason to delve deeper into ….well…..into anything. I wanted to see if a ‘Doctor’ though my son was a little ‘different’, so to speak. Well, when I took him in, I told him of some of the things that Byron was experiencing. Nothing major, I think I just told him that I noticed that he wasn’t as coordinated as he once was. I told him that Byron used to play football and rode his horse all the time and now he was more depressed and introverted. And I just thought I would get him ‘checked out’…he wanted a brain scan…..so he sent us to a neurologist. We saw the Neurologist in Waco, Tx in September and he sent us to a neurologist in Dallas which we couldn’t get into until July 25th of 2011. Yea, that ticked me off too! But anyway, so we go to this mobility specialist in Dallas and the doctor that we were scheduled to see wasn’t there due to an emergency and so we were seen by an intern….yes, AN INTERN! I was again a little angry….so they went through a series of tests, for like three hours! They made him walk (and said he had scissoring gate) and they had him touch his finger to his nose, their finger, his nose…etc, etc. Then they tested his balance, many times. Had him draw circles, squares, a series of lines, made him recite the ABC’s forward and backward. All of this scared the bajeezes out of me. At the conclusion of the visit, the Head Neurologists ordered some blood tests, a brain tomography, and another Brain MRI. Of course this was scheduled another month later. Which was August 25th, 2011. Through these, we ruled out Parkinsons Disease, Wilsons Disease and some other one…can’t remember. So then all that was left at this point was to give Athena Diagnostics the ‘OK’ to move forward with the Huntington ’s disease Test, which I was very scared of. They couldn’t move forward because I had to pay cash for the test since the insurance wouldn’t cover it. They began calling all of Byron’s testing, investigative and experimental….stupid insurance people….ANYTHING to get out of be responsible….
Anyway, I was hesitant to call and pay for the test….frankly I was just scared. I knew that paying for it and beginning the testing for it meant that I would get a result….whether I liked it or not. And to be honest, after researching Huntington’s Disease, I kinda knew. Or at least I knew that there was a very good possibility that he had this disease. So I called on Tuesday, August 30, 2011. They told me it would be 14 to 21 days for the results. But I knew better than that. So I waited til Tuesday September 6, 2011 and I called the lab. They told me that they should have the results in a few days. So, I waited until Thursday September 8, 2011 and I called the lab again and they said that they forwarded the results to my Neurologists office on Tuesday September 6, 2011. Well, that OBVIOUSLY got me all worked up bc our neurologist has had the results for two days and hasn’t CALLED ME? So…..I called the neurologists and of course, got a nurse, and I told her to tell me the results, but of course she wouldn’t and just told me that she would have the doctor call me to discuss the results. Well, again, mother’s intuition kicked in and I knew….Long story short, the doctor called an hour later and gave me the results and here we are.
Byron does have some dementia and has some difficulty understanding complicated things. So telling him really wasn’t that difficult. I just stayed outside and cried in my husband’s arms and once I was able to contain my emotions, I came into the house and told Byron that he had a disease and explained to him that some symptoms will get worse and that he will have good days and bad days. But I did not tell him that the disease was fatal. There is absolutely no reason, in my mind, as to why I would tell him that. You may disagree with that, but this is my son and I know what is best for him. He isn’t at a time in his life where he could truly process it and I won’t risk him becoming suicidal or even more depressed. He doesn’t even realize that he is different. Why on earth would I take his happiness away from him? I won’t! Just have to live day by day. Put God first and fears second.
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