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Brandon was diagnosed with Duchennes Muscular Dystrophy at the age of 6, August 2001-officially in September 2001. It has taken a beating on his body. He relies on a power chair for getting around. He has lost most movement to his arms and legs. He has a very hard time feeding himself, brushing his hair, and brushing his teeth. He relies on us to do almost everything due to his weak muscles. He is a fanatic over cooking. We tease him that he would make Chef Ramsey look like the Pillsbury doe boy! He would make the most amazing chef if only the disease would leave him alone. He still love to try and make stuff, although his arms just cant stir up the batter, cut things, or flip things anymore. He is a real good inspector though! He LOVES his video games, and has mastered going on line and playing games with others, some who share this disease. Since his dad is in the army, Brandon has lived in many different places. Once we got to Texas, we decided that we loved it. Brandon was happy, and has access to sidewalks and streets that he can easily access with his chair. He loves his school, and the people here LOVE BRANDON! He is like a celebrity at school! We decided that we wanted to make Texas our home for good. We built a completely wheelchair accessible home for Brandon (and us). Although its horrible being away from his mom, we are able to work together to make it a great experience for both of his families. Brandon continues to deteriorate at such a rapid speed. Just when we get used to one thing, something else happens. DMD is a horrible and cruel disease, and I can only pray that some day we will have a cure for it so that no one else will have to go through what we and many other families have.
Mar 22, 2013 11:47amSorry..I tried to post this last night but couldn't do it.
So last year on 3/20/12 we spent the day at home with Brandon at his bedside. His teacher had come as she normally did, and was a little upset I turned her away. His CNA had come to give him a bath. Brandon said "Please don't make me take a bath." and so we didn't, even though he really needed it from all the sweating he had been doing. He was starting to have trouble swallowing, but was able to drink ice water well. He was having fever then chills. He was beginning to decline to the point of no return. He just wanted to lay back and get comfortable, which we helped him do. As the day went on, he had some anxiety, then confusion, and some hallucinations. We medicated him with the meds hospice had given us, and just stayed by his bedside to reassure him he was not alone. We held his hand, talked with him, and comforted the best we could. he developed restlessness, and begin wanting to change positions every 5 to 10 minutes. We adjusted him, and turned the lights down in his room. We were both exhausted from being up the night before, but knew we could not leave him. We knew he could go at any time but still was praying for that moment when he would bounce back and be ok again. We agreed to take turns staying up with him until we had other family members here to help us. I decided to take the first night. I brought Chris to the room, and a recliner beside his bed. Brandon was still having some anxiety, and some mild hallucinations-one about prepping a team for HALO, another was weird but flowed out of his mouth so clear... He got his next dose of medicine, some ice water. At some point, I grabbed his favorite childhood book (Monster at the End of the Book) and a photo album/awards album. I read the book to him, and talked to him about all the pictures, all the adventures we went on, all the awards he won and how so proud we were of him. I held his hand, and just sat there. At some point, as i was hoovering over his head and kissing his forehead and telling him I loved him for the millionth time, he told me he loved me. I eventually laid Chris down next to him and snapped a picture...the last one I wold ever take. As daylight came, I noticed that his hands were now turning blue at the tips. I cannot tell you how much seeing that ripped my heart apart. I knew he wouldn't be with us much longer. I began crying at his bedside and praying that if God was going to take him, he would keep him in peace till then. Brandon had quit responding for the most part. He wasnt anxious, he was having no trouble breathing, he looked comfortable. I figured I would be exhausted, but for some reason, I was ok. I got everyone fed, grabbed some coffee, and then we sat and talked with the hospice nurse who had come by to check on him. They had finally arranged respite care for us/Brandon, after almost 2 years of service. She left, and we just sat in Brandon's room. He had been sweating so bad over the past couple days we decided to give him a mini-bath which he was comfortable. I ran to Walgreens to get some mouth moisturizer for him, then come home and washed his hair, and give him a mini-VERY MINI- bath. He didnt flinch. I cleaned out his mouth real good, cleaned his teeth the best I could with the little swabs, and then noticed how horribly dry his eyes looked. ( His eyes had remained slightly opened which was normal for him while he slept). We decided to put some drops in his eyes for comfort. Bill went to get the drops, I turned to pull the blanket from his hip up to his chest and then I saw it. In a split second, his color changed, his breathing went from deep breath to a movement of the tongue only. I screamed for Bill, who hobbled back into the room. We held to him, and it was over. We stayed in the room, crying, distraught for I dont know how long.
That was a year ago. I cant tell you how heavy it has laid on our hearts. We are told often that Brandon lived more in his short time than many do in a lifetime. I hope we were able to do that for him. Since he has been gone, I am not myself. I lost my "drive". I used to be a fighter, but no more. He brought out the creativity and inspired me to do more and push for more for him, and US. I dont know if my strength/drive for life will ever come back.
They call the anniversary of one passing an "angel-versary". It was/is hell, not just on the day, but EVERYDAY! Everywhere we go, we see things that remind us of him. We hear songs, see games he would have loved. We see people struggling with battles similar to his. We see things he would tell us about, eat meals he would have loved and cook recipes by his favorite chefs. We watch new episodes of his favorite shows and think about how he would have reacted to them.....all with a pain that overrides most of the happiness. We talk about the silly times, and happy times, and the adventures we had with him, and the deep emptiness we feel now is still present. They say it gets easier, and we are still waiting for that to happen.
We continue to ask folks to do random acts of kindness in his name. If you have ever been the recipient of one, you will understand why. Brandon was the recipient of many, and would get so giddy when we would do one. The first one I can remember was when Bill had deployed. We went to eat at a Japanese place, which he loved. Brandon laughed to whole time watching the chef acting silly as he prepared the food. After the meal, we waited for what seems like forever for our check to pay. After our "tablemates" had already gotten theirs and paid and left, the waiter come to us and explained that one of the "tablemates" was a veteran, and paid for our meal for us. We were all floored, but Brandon was blown away. He wanted to do something like that, and would do them on his own at times... I was so proud of him...
Missing him and moving on has not gotten easier yet. I still cry when I speak of him. I cry when I am reminded of something he would have loved but will never see. I cry when I see my "dmd sisters and brothers" share our fate, or come close to sharing our fate. I cry when I see the shamrocks, the firefighters collecting change with their boots, and the telethon every year. Every time a family joins our support group, I relive his passing over again. Every "Angel-versary" of my DMD sisters and brothers, every newly diagnosed child, every time I see a child/teen in a power chair, no matter what the reason, it brings me to tears. I try to keep myself so busy I dont have time to think. If I cannot think, I cannot cry. Enough for now...
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Thank you for reading about my beloved Brandon. His journey on earth has come to an end, and ours is so uncertain without him.
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