- Joined
- Jan 19, 2006
- Messages
- 3,589
Thanks all for the kind words fro my friend and her family. I have spent the past few days pulling pics I have of our times together and the kids as they were growing up to make albums for her kids to keep.
Dan finally gets home today only to leave Monday/Tuesday again for 2 more weeks and will get back in time for us to leave.
**Utah - thanks for helping him get in one home made meal and he was so glad to see you!!!! Next time I hope to be there too!
Mek - Love that song!!
Everyone else - I will personally respond on Monday.
If I can ask you all to keep Baylor in your thoughts. We spent the day shopping and getting him supplied with shorts, a few t-shirts, sunglasses and flip flops. Everything was going well and then we got to Hollister to get sandals and he started panicking about his leg being in the sun, unprotected.
This would be the first full year, he can wear a ton of sunscreen and not a compression garment, or protective layering. While we were at the store, he asked if he could wear one because his leg would feel weird in the sun. Then he started to say, he did not like the way his leg felt because he could not tell if it was getting to hot or if it did start to sunburn. That he did not feel it was a good idea to have it exposed. He kept restating the same fear in a slightly different twist over and over. (The nerve endings may never totally repair themselves and he may never have feeling in his leg. This is a new piece of accepting his burn for Baylor as the docs were hopeful after 2 years he may get some feeling back.)
I told him he could wear a sock or we could get some more of these white tubal protectors he has worn. I just let it go and then we got in the car and he brought it up again. He has not gotten any new compression garments to wear for almost a year and the truth is, I do not think what he has will fit him. They are made specifically for his leg measurements and he has grown a ton since last June and something custom like that needs to be adjusted every inch and re-ordered. They do not stretch like a "sock" and his heel would always be in one place, calf in one place, etc.
He suggested he could tape it like someone with a sprain. He suggested we could ace bandage it. It is hard to read him at times to know if he is worried about the "look" of his leg or if this is truly all about him panicking about sun exposure. It is true that too much sun could lead to permanent pigment damage that would make his grafted skin look darker all year long. It is also true that he feels exposed without a protective layer on it and he has been in jeans for the last 5 1/2 months. The pain of a sunburn there would be excruciating and he knows it from friends who have experienced it. He also is a kid that fears almost nothing and never is a worry wart. That is Carsyn's job.
Then last night he came upstairs with a blanket from his room and layed in my bed and watched TV with me. When I told him I was ready to get some sleep, he just turned off the remote and rolled over and slept with his 100 lb dog between us. Not exactly roomy and not normal for him at all. He usually is Mr. Independent and at that stage where even hugging me is a threat to his teenage masculinity. All night he had nightmares where he was shouting and twice he kicked me hard in the thigh as he was literally yelling in his sleep. I ended up on the couch.
After his burn he had night terrors for weeks and weeks. Kept dreaming he was on fire and through therapy and the great support of the docs and social workers, it just got better and better. I am just praying this is a quick phase for him but I will call the docs to get him in for a follow up on Monday. Maybe they can ease his mind about his leg and if they think it would not hurt to have a compression sock for back-up, we can order a new one.
Mentally for me, it is so hard to know how much to let him lead and how much to try and help him in ways I know he will not ask for help. Seeing a doc for a medical issue is okay for his bravado but seeing the social worker again because emotionally he is struggling, is not too cool for a 15 year old.
He wanted a pair of Oakley Sunglasses yesterday. This from a kid who charges me when he had Lemonade Stands as a kid and I paid for his supplies. Baylor does not part with his money easily and I have never spent $130 on a pair of sunglasses for myself ever. He had some money from me to get sunglasses but the rest was to come from him.
Then he said he thought it would be cool because people (aka kids) would be looking at his face.
The light bulb went off for me.
These sunglasses are this summers short Mohawk hair cut from last summer. The thing that will ease attention from his leg to his face. His security blanket.
His mask.
Anybody can get a pair of Target sunglasses. This makes him stand out. Something that will make a first impression and not his leg.
I know he is feeling naked about his leg being exposed because while the sock got noticed, it was a sock and not an actual piece of him. Now he risks people staring for the actual scarring. That brings it on a whole new level of personal.
You have no idea how much I wanted to go buy him 10 pairs of those stupid sunglasses. He walked out of the mall and into the sunlight and he was confident.
The truth is I want him to have that confidence in himself no matter what and always. Sunglasses or not.
The other part of that truth is he is 15 and your life at 15 is one totally different then the one at 39. He is figuring out ways to fit into the world around him and I am glad he is working through it versus running from it.
I will bust my hind end the next few weeks before we go to do an update a day on this TR so I will not be behind when we get back from Spring Break and we can start a new one!!!
Thanks again for your patience with me.
Dan finally gets home today only to leave Monday/Tuesday again for 2 more weeks and will get back in time for us to leave.
**Utah - thanks for helping him get in one home made meal and he was so glad to see you!!!! Next time I hope to be there too!
Mek - Love that song!!
Everyone else - I will personally respond on Monday.
If I can ask you all to keep Baylor in your thoughts. We spent the day shopping and getting him supplied with shorts, a few t-shirts, sunglasses and flip flops. Everything was going well and then we got to Hollister to get sandals and he started panicking about his leg being in the sun, unprotected.
This would be the first full year, he can wear a ton of sunscreen and not a compression garment, or protective layering. While we were at the store, he asked if he could wear one because his leg would feel weird in the sun. Then he started to say, he did not like the way his leg felt because he could not tell if it was getting to hot or if it did start to sunburn. That he did not feel it was a good idea to have it exposed. He kept restating the same fear in a slightly different twist over and over. (The nerve endings may never totally repair themselves and he may never have feeling in his leg. This is a new piece of accepting his burn for Baylor as the docs were hopeful after 2 years he may get some feeling back.)
I told him he could wear a sock or we could get some more of these white tubal protectors he has worn. I just let it go and then we got in the car and he brought it up again. He has not gotten any new compression garments to wear for almost a year and the truth is, I do not think what he has will fit him. They are made specifically for his leg measurements and he has grown a ton since last June and something custom like that needs to be adjusted every inch and re-ordered. They do not stretch like a "sock" and his heel would always be in one place, calf in one place, etc.
He suggested he could tape it like someone with a sprain. He suggested we could ace bandage it. It is hard to read him at times to know if he is worried about the "look" of his leg or if this is truly all about him panicking about sun exposure. It is true that too much sun could lead to permanent pigment damage that would make his grafted skin look darker all year long. It is also true that he feels exposed without a protective layer on it and he has been in jeans for the last 5 1/2 months. The pain of a sunburn there would be excruciating and he knows it from friends who have experienced it. He also is a kid that fears almost nothing and never is a worry wart. That is Carsyn's job.
Then last night he came upstairs with a blanket from his room and layed in my bed and watched TV with me. When I told him I was ready to get some sleep, he just turned off the remote and rolled over and slept with his 100 lb dog between us. Not exactly roomy and not normal for him at all. He usually is Mr. Independent and at that stage where even hugging me is a threat to his teenage masculinity. All night he had nightmares where he was shouting and twice he kicked me hard in the thigh as he was literally yelling in his sleep. I ended up on the couch.
After his burn he had night terrors for weeks and weeks. Kept dreaming he was on fire and through therapy and the great support of the docs and social workers, it just got better and better. I am just praying this is a quick phase for him but I will call the docs to get him in for a follow up on Monday. Maybe they can ease his mind about his leg and if they think it would not hurt to have a compression sock for back-up, we can order a new one.
Mentally for me, it is so hard to know how much to let him lead and how much to try and help him in ways I know he will not ask for help. Seeing a doc for a medical issue is okay for his bravado but seeing the social worker again because emotionally he is struggling, is not too cool for a 15 year old.
He wanted a pair of Oakley Sunglasses yesterday. This from a kid who charges me when he had Lemonade Stands as a kid and I paid for his supplies. Baylor does not part with his money easily and I have never spent $130 on a pair of sunglasses for myself ever. He had some money from me to get sunglasses but the rest was to come from him.
Then he said he thought it would be cool because people (aka kids) would be looking at his face.
The light bulb went off for me.
These sunglasses are this summers short Mohawk hair cut from last summer. The thing that will ease attention from his leg to his face. His security blanket.
His mask.
Anybody can get a pair of Target sunglasses. This makes him stand out. Something that will make a first impression and not his leg.
I know he is feeling naked about his leg being exposed because while the sock got noticed, it was a sock and not an actual piece of him. Now he risks people staring for the actual scarring. That brings it on a whole new level of personal.
You have no idea how much I wanted to go buy him 10 pairs of those stupid sunglasses. He walked out of the mall and into the sunlight and he was confident.
The truth is I want him to have that confidence in himself no matter what and always. Sunglasses or not.
The other part of that truth is he is 15 and your life at 15 is one totally different then the one at 39. He is figuring out ways to fit into the world around him and I am glad he is working through it versus running from it.
I will bust my hind end the next few weeks before we go to do an update a day on this TR so I will not be behind when we get back from Spring Break and we can start a new one!!!
Thanks again for your patience with me.
you!!
to you. Sending hugs and prayers to your family and friends as well.
They seemed to get along swimingly, which is a welcome change from my ex-husband who contstanly felt threatened by my DIS-friends. 
...then he'll have enough pairs to match with every outfit he has!! and he can walk loud and proud and not worry about his leg...bless his heart....
) around the kitchen table three times backwards.
. I lost my step mother, who was more of a mother to me, 1 1/2 years ago to a brain aneuryism, she was supposed to visit on a Saturday, went shopping instead and said she would stop off the next day, went to sleep and that was it. There are times I still can't believe it, my dd's are still devastated... 
And don't worry about that TR, just hearing from you is always a pleasure!
