You guys are SO awesome!!! The Mighty Pixie Project is working! The idea was to send a letter, or a card, something simple that didn't cost much, so that Tyler would feel love & support. Keeping her spirits up is paramount during this tough time.
Her friends came to visit before she went back to school, which was awesome because she was feeling uneasy about being out and about and what people would say. Spending time with them was the best medicine for her spirits! Feeling like a kid, excuse me, teenager is all she really wants.
So, last week was really difficult, and it was a challenge to try to keep her mind occupied and distracted from thoughts of food. I hadn't realized that it's pretty much inescapable, it's ev. ry. where! On tv, on the radio, you pass by a bazillion restaurants, stores, and mini marts every time you go some where. Ads. Billboards. Books. Magazines. You smell it. You see people eating it. People talk about it. There's a kitchen in the house. We haven't been eating or cooking in the house, in a show of solidarity, but the kitchen is still there. Pretty tough to avoid.
She was pretty much angry at the world last week. I tried to do little things to cheer her up, we went to the park with the dogs, we went to see The Village Musicians play, we went to the salon to get her hair washed, and to the Lancome counter for a mini-makeover. These are things that she would normally be thrilled about. She's always so appreciative. It broke my heart that she was still miserable (not that I blame her). Holding back the tears in my eyes, I told my Mom how worried I was about her, and that I just didn't know what to do.
Then, Friday, at the end of the day, something really amazingly cool happened. There was a knock at the door, it was the Fed Ex man. When I showed her the envelope, it piqued her interest. I explained to her that it was from my friend Ashley in FL. The best was the smile and joy on her face as she looked at the contents of the envelope. She looked at the pictures Ashley's kids had drawn and colored for her, and the notes they wrote. I KNEW IT! I knew that something as simple as a picture colored by a kiddo would brighten her day! Among the other treats in the envelope, there was also a funny picture of a grey kitty that looked like our kitty Becky. Cracked us up!
She was amazed that a family she hadn't even met would take the time to do something so thoughtful for her! Seriously, that's what I was hoping for, and it worked! I was so happy to see her smile, really smile!
When I made a list of ideas, I included things like a comic or funny a picture, or a picture your little one colored. The idea was not to solicit gifts, but things that didn't cost, other than time & postage. It's fun to get something in the mail, and she's surprised and thrilled every time she gets "Pixie Mail"!
She said the sweetest thing when the mail came Saturday. She got another card, and a lovely anonymous gift. When she opened the gift, she said; "Who would have known I was looking at this? I wanted one of these!" Then we spent the rest of day trying to figure out who it was from. (I figured it out : )
For the last four years, we have been in the "Crohn's Closet". It's so difficult to talk about, but now, with the feeding tube, we can't avoid it any more. So, we decided to try to make it a positive. With your help, it's working!
We cherish and appreciate your words of encouragement, both on -line and in the mail. Tomorrow will be two weeks with the tube. Two and a half months to go! So, if you think of it in the weeks to come, drop her a line! It's something small you can do that makes a HUGE difference!
XOXOXO from MighTy Pixie & her Mom
PS ~ I really think that this is such a great idea for kiddos when they are really sick, or going through something horrible. My hope is to use this as a model and one day I hope to expand this project to other families <3
Her friends came to visit before she went back to school, which was awesome because she was feeling uneasy about being out and about and what people would say. Spending time with them was the best medicine for her spirits! Feeling like a kid, excuse me, teenager is all she really wants.
So, last week was really difficult, and it was a challenge to try to keep her mind occupied and distracted from thoughts of food. I hadn't realized that it's pretty much inescapable, it's ev. ry. where! On tv, on the radio, you pass by a bazillion restaurants, stores, and mini marts every time you go some where. Ads. Billboards. Books. Magazines. You smell it. You see people eating it. People talk about it. There's a kitchen in the house. We haven't been eating or cooking in the house, in a show of solidarity, but the kitchen is still there. Pretty tough to avoid.
She was pretty much angry at the world last week. I tried to do little things to cheer her up, we went to the park with the dogs, we went to see The Village Musicians play, we went to the salon to get her hair washed, and to the Lancome counter for a mini-makeover. These are things that she would normally be thrilled about. She's always so appreciative. It broke my heart that she was still miserable (not that I blame her). Holding back the tears in my eyes, I told my Mom how worried I was about her, and that I just didn't know what to do.
Then, Friday, at the end of the day, something really amazingly cool happened. There was a knock at the door, it was the Fed Ex man. When I showed her the envelope, it piqued her interest. I explained to her that it was from my friend Ashley in FL. The best was the smile and joy on her face as she looked at the contents of the envelope. She looked at the pictures Ashley's kids had drawn and colored for her, and the notes they wrote. I KNEW IT! I knew that something as simple as a picture colored by a kiddo would brighten her day! Among the other treats in the envelope, there was also a funny picture of a grey kitty that looked like our kitty Becky. Cracked us up!
She was amazed that a family she hadn't even met would take the time to do something so thoughtful for her! Seriously, that's what I was hoping for, and it worked! I was so happy to see her smile, really smile!
When I made a list of ideas, I included things like a comic or funny a picture, or a picture your little one colored. The idea was not to solicit gifts, but things that didn't cost, other than time & postage. It's fun to get something in the mail, and she's surprised and thrilled every time she gets "Pixie Mail"!
She said the sweetest thing when the mail came Saturday. She got another card, and a lovely anonymous gift. When she opened the gift, she said; "Who would have known I was looking at this? I wanted one of these!" Then we spent the rest of day trying to figure out who it was from. (I figured it out : )
For the last four years, we have been in the "Crohn's Closet". It's so difficult to talk about, but now, with the feeding tube, we can't avoid it any more. So, we decided to try to make it a positive. With your help, it's working!
We cherish and appreciate your words of encouragement, both on -line and in the mail. Tomorrow will be two weeks with the tube. Two and a half months to go! So, if you think of it in the weeks to come, drop her a line! It's something small you can do that makes a HUGE difference!
XOXOXO from MighTy Pixie & her Mom
PS ~ I really think that this is such a great idea for kiddos when they are really sick, or going through something horrible. My hope is to use this as a model and one day I hope to expand this project to other families <3
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