Blessed with another day. We had a good weekend. On Saturday we all went to watch Trey (my husband) play softball at Brooklyn Park in Waco. They had a swing set there. Byron, Megan and I all did a little swinging. It was a wonderful time. I recall many times when my kids have asked me to go somewhere to do something and I didn't take them because I was too busy, tired, or flat out lazy.It didn't cost a thing to go to this park and play. I never regretted those times that I didn't take them, more than I do right now. We really enjoyed swinging together, laughing and having fun. After we tired of the swinging, we sat down to watch and yell at the guys playing softball. Trey nose dived after a foul ball. Always cool to see your husband belly slide =)
Sunday we got ourselves a 10x10 shed for storage here next to 'Stella' (our RV) and that is certainly a blessing! But the funnest part was going to our storage building that we have rented for the last year after we lost our lease in Axtell. We went there to get a few things that we could keep closer to us in our new 10x10 storage shed. It was fun watching the kids tear through everything and see some of their memories in a box. There were also some aggravating parts because they were demolishing our storage building...lol -- But to see them open old boxes and see their stuff, opening them like they were Christmas presents. That was cool. I found my old pictures. I am so thankful for that. I have many pictures now that I want to scan and get into my computer. AND...I found my VHS tapes that my mom made for me that are titled 'My Life'. They have lots of video of the kiddos on them, so I am so excited to get those put on DVD! Now I just have to figure out where and how to do it! I can't wait to sit down and watch them again. I don't even know if you can buy a VHS player anymore LOL
We closed our weekend out with some pizza rolls for dinner and some good ole T.V. We didn't get any riding done this weekend, but I am sure the horses are enjoying the break.
Byron has an appointment with the specialist on September 29th. I will let you know what they say! Have a blessed week everyone. Remember: Romans 8:28
Monday, September 26, 2011
Sunday, September 18, 2011
Reality Sets in
I posted this last week and then deleted it. I'm not sure why except that I didnt want anyone thinking I was whining. But my husband said, 'Write it anyway!'....so I am reposting it.
Reality sets in
Well, today is a new day. Not an easier day. I don't think that it will ever get easier. We seem to be able to make our days as normal as possible, but the nights are hardest. Something about laying my head down to 'end' a day...to end a day that I can never have back and to be one day closer to...well...just another day gone. I find my nights very restless. So I found myself taking a over the counter sleeping pill last night. While I am grateful that I got some sleep, it sure made me groggy today.
I have a friend who is organizing a wonderful event. A benefit barrel race/stallion auction/what ever else she can make it. We've set up a Byron Anthony Support Page on Face Book and a place for others to offer Donations to assist with Byron's medical bills and needs. The prayers and support we've received from so many have been overwhelming. Thank you.
I can't say that I don't struggle with the 'Why' of it all, but I know that in Romans 8:28 that 'all things work together for the good for those who love God'. And while I know this, I still struggle. I think most of you know that I have my own ministry - Riding with Faith - and that I do the Church Services for all of the Elite Barrel Races and for many others. So, I think it's fair to say that you all know that I love and try to live for God. But there have been moments that I have questioned why God has allowed this to happen to my child, my family. I won't lie to you and tell you that I truly 'get it'. I have to tell you that I have asked God numerous times, WHY? I don't expect an answer. I'm not sure what it is that I do expect.....but I know that my God is a God of miracles and if anything or anyone can save my son from this disease, it's God. He is a God of miracles.
I still find myself a little lost at night when I began my prayers (or even throughout my many daily prayers) when I ask God for a miracle. But while I ask God for a miracle, there is a part of me that is scared that THIS is the path he has for my son. Many times I feel so selfish. I have to tell you a little story:
We were at church at the Old West Cowboy Church in Robinson, Tx a few weeks ago and the pastor asked for prayer for an elderly gentleman who had survived Pearl Harbor. The pastor said that he was not asking for prayer for God to save his life, but just to make the time that he has left, beautiful. While I understood this prayer, I was a little shocked. But the older man was ready. He was ready to meet Jesus and spend eternity with him. Well, during this statement, my son raises his hand (which always scares me because he normally has something silly or off the wall to say) so I grab his hand and say, "What are you doing?", "What do you need Byron?".....he looks at me and says, "We should all be jealous." I was puzzled, and I replied, "What do you mean?" and he said, "We should all be jealous because he gets to go to Jesus and we are stuck here."
At the time, I was slightly frustrated. I was amazed that he would want to interrupt and say such a thing. Of course I wouldn't allow him to interrupt the preacher to speak his opinion. But I look back on that now and think to myself....."He really understands that there is peace with Jesus." Of all the things that Byron is so 'slow' about, he really gets that. It makes me cry today. He posted something similar on his face book one time that caused a little of an 'up roar'....but it makes me wonder....maybe he feels something deep down inside. Maybe he knows that he will meet Jesus sooner than many of us. He is so amazing....I'm sorry, I have to stop here for now.....
I have returned to add this. I know that some folks are left wondering, but Children diagnosed with HD will gradually lose the ability perform routine tasks, or care for themselves. The average life expectancy is 10 yrs from onset. Byron began more obvious symptoms at age 13. About five years ago. But intitial symptoms were 'ticks'. Like blinking, sniffing, shrigging of the shoulders and clearing of his throat.
I have a friend who is organizing a wonderful event. A benefit barrel race/stallion auction/what ever else she can make it. We've set up a Byron Anthony Support Page on Face Book and a place for others to offer Donations to assist with Byron's medical bills and needs. The prayers and support we've received from so many have been overwhelming. Thank you.
I can't say that I don't struggle with the 'Why' of it all, but I know that in Romans 8:28 that 'all things work together for the good for those who love God'. And while I know this, I still struggle. I think most of you know that I have my own ministry - Riding with Faith - and that I do the Church Services for all of the Elite Barrel Races and for many others. So, I think it's fair to say that you all know that I love and try to live for God. But there have been moments that I have questioned why God has allowed this to happen to my child, my family. I won't lie to you and tell you that I truly 'get it'. I have to tell you that I have asked God numerous times, WHY? I don't expect an answer. I'm not sure what it is that I do expect.....but I know that my God is a God of miracles and if anything or anyone can save my son from this disease, it's God. He is a God of miracles.
I still find myself a little lost at night when I began my prayers (or even throughout my many daily prayers) when I ask God for a miracle. But while I ask God for a miracle, there is a part of me that is scared that THIS is the path he has for my son. Many times I feel so selfish. I have to tell you a little story:
We were at church at the Old West Cowboy Church in Robinson, Tx a few weeks ago and the pastor asked for prayer for an elderly gentleman who had survived Pearl Harbor. The pastor said that he was not asking for prayer for God to save his life, but just to make the time that he has left, beautiful. While I understood this prayer, I was a little shocked. But the older man was ready. He was ready to meet Jesus and spend eternity with him. Well, during this statement, my son raises his hand (which always scares me because he normally has something silly or off the wall to say) so I grab his hand and say, "What are you doing?", "What do you need Byron?".....he looks at me and says, "We should all be jealous." I was puzzled, and I replied, "What do you mean?" and he said, "We should all be jealous because he gets to go to Jesus and we are stuck here."
At the time, I was slightly frustrated. I was amazed that he would want to interrupt and say such a thing. Of course I wouldn't allow him to interrupt the preacher to speak his opinion. But I look back on that now and think to myself....."He really understands that there is peace with Jesus." Of all the things that Byron is so 'slow' about, he really gets that. It makes me cry today. He posted something similar on his face book one time that caused a little of an 'up roar'....but it makes me wonder....maybe he feels something deep down inside. Maybe he knows that he will meet Jesus sooner than many of us. He is so amazing....I'm sorry, I have to stop here for now.....
I have returned to add this. I know that some folks are left wondering, but Children diagnosed with HD will gradually lose the ability perform routine tasks, or care for themselves. The average life expectancy is 10 yrs from onset. Byron began more obvious symptoms at age 13. About five years ago. But intitial symptoms were 'ticks'. Like blinking, sniffing, shrigging of the shoulders and clearing of his throat.
Saturday, September 10, 2011
Byron and Huntington's Disease
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.
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