Merci!

So much to be thankful for with everything going on in the world today!  Somehow, all of our Pixie Peeps out there have found the time to send something special & fun to Tyler.  I am behind on Pixie thank you notes, (big surprise!) but if there were a way I could convey how amazingly thoughtful & sweet everyone is, you would be smiling so big your cheeks would hurt!

It's been just over a month with the feeding tube.  Very, loooong days, weeks, month.  There is no way to explain it to you, so I won't even attempt it.  While I'm complaining I might as well tell you how much I miss cooking.  But, I know it couldn't possibly compare to how much she misses eating, drinking and tasting!!!

But, on the days that there is a card, or a letter, a drawing, sticker, or other fun little Pixie prizes it's so fun to watch her!  It really brightens her day!  Each time there is something in the mail for her she is SO delighted, and she's surprised and thrilled.  In the age of instant everything, texts, internet etc., we forget about the simple pleasure that a note from a friend can bring!  She still can't believe that anyone would even send her notes, cards etc.  (I love that about her, she doesn't expect anything and appreciates everything!!!!)  The best way to explain it is this: imagine that to her the mail box is the present she's opening, or unwrapping.  The cards & letters (and packages) are the surprise gifts inside the box.  I think all kids are this way when they get mail, I know I still am!

So, since we're already here, and I'm already writing, and it's my blog, I'm going to take this opportunity to vent.  Who are we kidding I'm about to rant!  In the past month, we have been floored at how some people treat/look at Tyler with her tube.  I'm even more appalled at what people ask her and say to her.  The worst have been adults, NO KIDDING!!!!!

Last week, a substitute teacher took it upon herself to tell Tyler that her disease was due to a parasite in her liver, and that the medicines she was putting into her body were poisoning her and killing her.  What could a child say to say to that?  We tell our children to mind their manners and respect adults.  Don't talk back.  My daughter was powerless in this situation and just had to take it!  Furthermore, she was really embarrassed because it was said in front of her classmates and friends with whom she does not discuss the specifics of her disease, the battery of treatments, horrible medications or torturous symptoms.  They know she gets sick.  They know she's absent a lot.  That's about all she would like them to know.  She really doesn't even say much to her dearest friends.

So, this fabulous teacher, who is evidently doing the world a favor by teaching our children instead of using her extensive medical degrees to save everyone from parasites and poisons was able to diagnose Tyler within a few minutes of class, basically upon sight!  She's a freaking genius!  Those students were in the presence of greatness.  My sarcasm is dripping, I know.  I wish I was kidding.  Tyler's friends really are awesome.  They are so protective of her, and couldn't believe what they heard.  Tyler shrugged it off, and simply told them that she's used to it.  She's not, and it was the singularly most hurtful and offensive thing said to her thus far.  It has been addressed, though I should have handled it immediately.  I didn't because I was afraid my temper would get the best of me.  I decided to write a letter.  Write a letter!?!  I thought it would be effective.  Next time, immediate action, temper and all.

This afternoon, when I picked up Tyler, I had feelings I don't even have words for.  The emotion was entirely foreign, there were too many feelings at once.  Today the teacher was subbing again, and was evidently asked to apologize to Tyler.  So, she apologizes to Tyler, again in front of everyone.  Tyler said it was actually worse today because again she was stuck.  How to defend herself, speak her peace?  Tell this person to go away and leave her alone.  She had to stand there and politely accept the apology.  Still searching for the words to describe my reaction.  Actually, my reaction doesn't matter.  It's Tyler's reaction that matters, her feelings, and I can't undo this.  It happened.  I just want scream at this person and shake her.  Evidently Tyler wanted to hit her, but, she didn't.  ***Whew***

So, tomorrow, when we are at the Hospital in Seattle, I will be sure to tell her doctors that it's a parasite.  I'm sure they'll be relieved, and apologize for having missed it for the past four years.  Then they'll commend this brilliant person for finding a cure to Crohn's Disease!  I would love to be the first to commend her....

It's working! Mighty Pixie Project is a success!!!

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