Tuesday, September 24, 2013
Monday, September 23, 2013
Another painting, and loss
Last Thursday Lorie posted on facebook that it been a rough few days, Patrick had pneumonia and was struggling pretty hard. I had done in-home-caregiving for their family, for their two boys--Matthew and Patrick-- who have muscular dystrophy. The nurse had Pat on some heavy duty antibiotics, and he was holding on. My heart sank, because pnemonia had been what killed their older brother Brandon, and they knew that it would likely kill Pat if he ever got it. I had planned on taking a cherry pie over to their house for Brandon's and Matthew's joint birthday friday, since cherry pie was Brandon's favorite pie, and Matthew loved pie in general. I decided to not wait until friday, and quickly made the pie and took it up to their house. Patrick was in bed on an incline, and looked fairly normal, although pretty miserable. However, he was able to crack some jokes and talk to me, even though it has become really hard to understand him as his voice is now almost just mouthing words.
Muscular dystrophy is a disease that causes you to lose all control over all of your muscles. You still feel everything, you still have all of your faculties, you are just stuck in this body that won't work. He has ate out of feeding tubes for some time, out of fear of choking, and he had to have others help him itch his leg, or arm, or rub a sore spot on his elbow. In any case, I felt a little reassured after visiting that he was doing better than I had expected, but there was a mood in the house that made me feel like it wasn't going to be okay.
Friday evening at 6:30 Pat decided to leave earth and join his brother. It was a conscious choice, from what I'm told, and he was able to say goodbye to his family and Betsy, his favorite aide. Betsy had worked mainly with him, I had worked mainly with Matt. His family is handling things pretty well, because they know that they will see him again, and that he is happy and free. They also smiled that when he was leaving, he was concerned/sad about missing his shows and games that were coming out soon for fall... lol
I didn't know what to do, I wanted to bring them something, but felt that anything I could give would be inadequate. And then I remembered the painting Matthew had been bugging me to do for a long while. I sat down saturday evening and did the painting, and it turned out almost close to perfect. When I took it over late Saturday evening, I held it up for Matthew to see and his face lit up with the biggest grin. And his mother laughed. The idea of the painting is based on several jokes from Matthew teasing me about taking out a power pole one thanksgiving on the way to their home, and some jokes that evolved from that accident. I was painting while overcome with a lot of emotion, so it shows in the painting. I didn't realize until afterwards that the colors reflected exactly how I felt, the darkness of the sky to the brightness of the tree.
Today I got on facebook to find a private message from Matthew, telling me that he knew this was a random message, but that he LOVED the painting, and couldn't stop smiling every time he looked at it. Matthew is rarely serious, he rarely ever tells you how he feels, instead he is the comedian of the family. To have him be serious and say how much he appreciated the painting meant a lot, and I realized I really had been guided by the spirit to think of it as a gift at this time. I know that although he tries to come off as super strong and as if life moves on, he is really going to miss his brother. They had always shared a room, and now it is just him. He has another brother who isn't effected by the disease, who has a family of his own, but mostly Matt will be by himself at home, with his parents when they aren't working, and with his aide. Matt wants to get married, and to have a family, and he still holds out hope that they will find a cure before the disease takes him. He is definitely a fighter.
There is a bonding/love that comes through serving others. You grow to love each other on a level that is impossible through any other means. When I visited Thursday, Patrick kept having his dad come in and suction out his mouth. I'm sure he was slightly embarrased to have me do it. I saw, though, after a while that he needed it again, so I got the suction tube and helped him. I can't explain how serving these boys has changed my life. I know that we were meant to live in this area, and I was meant to know them. I've had people tell me they could never do this kind of job, that it would be too hard to see them die, to know that it was going to happen. For me, it would be a tragedy if they had died without me ever having the chance to know them. To have them pass away, and I never have heard their jokes, never have known their personality, never have even felt their passing... that would be a greater sadness than having to say goodbye.
Muscular dystrophy is a disease that causes you to lose all control over all of your muscles. You still feel everything, you still have all of your faculties, you are just stuck in this body that won't work. He has ate out of feeding tubes for some time, out of fear of choking, and he had to have others help him itch his leg, or arm, or rub a sore spot on his elbow. In any case, I felt a little reassured after visiting that he was doing better than I had expected, but there was a mood in the house that made me feel like it wasn't going to be okay.
Thursday, after I left, Pat decided he felt well enough to get in his chair. Matthew joked that he was their mommy's "Triceratelephant! triceratops mixed with an elephant."
Friday evening at 6:30 Pat decided to leave earth and join his brother. It was a conscious choice, from what I'm told, and he was able to say goodbye to his family and Betsy, his favorite aide. Betsy had worked mainly with him, I had worked mainly with Matt. His family is handling things pretty well, because they know that they will see him again, and that he is happy and free. They also smiled that when he was leaving, he was concerned/sad about missing his shows and games that were coming out soon for fall... lol
I didn't know what to do, I wanted to bring them something, but felt that anything I could give would be inadequate. And then I remembered the painting Matthew had been bugging me to do for a long while. I sat down saturday evening and did the painting, and it turned out almost close to perfect. When I took it over late Saturday evening, I held it up for Matthew to see and his face lit up with the biggest grin. And his mother laughed. The idea of the painting is based on several jokes from Matthew teasing me about taking out a power pole one thanksgiving on the way to their home, and some jokes that evolved from that accident. I was painting while overcome with a lot of emotion, so it shows in the painting. I didn't realize until afterwards that the colors reflected exactly how I felt, the darkness of the sky to the brightness of the tree.
Today I got on facebook to find a private message from Matthew, telling me that he knew this was a random message, but that he LOVED the painting, and couldn't stop smiling every time he looked at it. Matthew is rarely serious, he rarely ever tells you how he feels, instead he is the comedian of the family. To have him be serious and say how much he appreciated the painting meant a lot, and I realized I really had been guided by the spirit to think of it as a gift at this time. I know that although he tries to come off as super strong and as if life moves on, he is really going to miss his brother. They had always shared a room, and now it is just him. He has another brother who isn't effected by the disease, who has a family of his own, but mostly Matt will be by himself at home, with his parents when they aren't working, and with his aide. Matt wants to get married, and to have a family, and he still holds out hope that they will find a cure before the disease takes him. He is definitely a fighter.
There is a bonding/love that comes through serving others. You grow to love each other on a level that is impossible through any other means. When I visited Thursday, Patrick kept having his dad come in and suction out his mouth. I'm sure he was slightly embarrased to have me do it. I saw, though, after a while that he needed it again, so I got the suction tube and helped him. I can't explain how serving these boys has changed my life. I know that we were meant to live in this area, and I was meant to know them. I've had people tell me they could never do this kind of job, that it would be too hard to see them die, to know that it was going to happen. For me, it would be a tragedy if they had died without me ever having the chance to know them. To have them pass away, and I never have heard their jokes, never have known their personality, never have even felt their passing... that would be a greater sadness than having to say goodbye.
Monday, September 16, 2013
Happy Day
This little girl is officially off of diapers! Now, I'll be honest, there will still be accidents, but she is doing really well. What I did was I got out the potty seat, and I had her run around naked. It is not fun to have a naked child running around, especially when people come to visit--they tend to get the impression that you are "those" people who let their kids run around naked. She only had 2 or 3 accidents on the floor (not fun) but for the most part she would go in the potty every time... until you put underwear on her.
I stuck with it, though. I didn't have the patience or time to dedicate to the technique where you seclude yourself in the house for a week and spend every moment all day long potty training. When we would go out I'd either put her in a diaper, or in a cloth training-pants thing.
Last week I decided I needed to do away with diapers completely, or she would train herself that it was okay to pee once the diaper came on. In order to get her to keep her underwear clean (cause we really can't have her run around naked forever) I do dry checks randomly throughout the day, and reward her for being dry. I'd been rewarding Violet most of the times she went potty (I didn't do it every time because I was weaning her off of the idea of getting rewarded) so I thought this idea was brilliant.
It is working. The night before last I put her in a training pants, and she didn't make it to morning dry. Last night I tried again, and made sure to have her go potty before bed. I even woke her up during the night and had her sit on the potty... she was NOT pleased with me, and I don't think that I'll do that again, it didn't work and just made her very unhappy. This morning I was certain I was going to find a drenched bed, but instead I discovered she was completely dry. Happy Day!! I praised her over and over again, and she got a treat. She even kept clean through church yesterday, and went potty in the church restroom. While I was typing this post she began to go poo in her underwear, so we aren't completely "there" yet, but we are progressing pretty well I think.
Last week I decided I needed to do away with diapers completely, or she would train herself that it was okay to pee once the diaper came on. In order to get her to keep her underwear clean (cause we really can't have her run around naked forever) I do dry checks randomly throughout the day, and reward her for being dry. I'd been rewarding Violet most of the times she went potty (I didn't do it every time because I was weaning her off of the idea of getting rewarded) so I thought this idea was brilliant.
It is working. The night before last I put her in a training pants, and she didn't make it to morning dry. Last night I tried again, and made sure to have her go potty before bed. I even woke her up during the night and had her sit on the potty... she was NOT pleased with me, and I don't think that I'll do that again, it didn't work and just made her very unhappy. This morning I was certain I was going to find a drenched bed, but instead I discovered she was completely dry. Happy Day!! I praised her over and over again, and she got a treat. She even kept clean through church yesterday, and went potty in the church restroom. While I was typing this post she began to go poo in her underwear, so we aren't completely "there" yet, but we are progressing pretty well I think.
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