Sunday, September 9, 2012

Tough Week

Dawson started school on the 5th and is really enjoying it. We have a problem with the school not following Special Ed para laws, so I am working on changing that. A new special ed student was added at the last minute and they stuck him in Dawson's class, with his para. She is already being shared between 2 kids, which is the max allowed. Now she has 3, and he is lower functioning and she doesn't have time for Dawson. Not ok! I have emailed several people and they are all scurrying to fix the problem. I should hear some answers on Monday, they said. Other than that, he says he's having fun. His first day of school I drove him in, because my alarm didn't go off! I woke up at the exact time school starts, 7:40am. Not a great start to the school year, but I am so thankful that we were late, because otherwise I wouldn't have known what was going on in his classroom with his helper.

Thankfully that morning went pretty well, he can be a bit pokey in the morning. He was so excited for school, I could barely get him to hold still for a picture!
 Just a bit excited. :)

 This little boy is just killing me. While getting out Dawson's lunchbag, I found a green car, unopened. I'd gotten the bag at RMH and had hidden the car in there for Tyler, because his favorite one was green and it was looking worn and then I found that one. With everything though, I forgot to give it to him. So I gave it to Gabriel, who's favorite car is also that crappy looking green car. I wish I'd done a video of his response, he said the exact thing, in the exact tone that Tyler did when I gave him his last monster truck, which is also one of Gabriel's favorites. He said "a car!", and that voice, I mean, I have heard him say car before, and it's similar, but this was exact. Other than Tyler's arm-flapping, it was like re-living a scene or something. Then he proceeded to go play with his precious cars. Gabriel also figured out how to walk down curbs and other very small steps without needing support. He can walk up them too, something Tyler was never able to do because of his weak leg muscles. I was shocked when he did it at first, so many things I keep forgetting regular kids are able to do. Such a strong little guy. He impresses me everyday!
 Mama got a bit spoiled this week. There has been a growing list of stuff I need or want to get, and I got the go-ahead, so I had some fun shopping this weekend. A couple of pans have broken, since we've been using garage sale pots and pans that we got before our wedding 7 years ago! Nice to have new stuff, and lucky me, there was a nice sale at Target too!
 I also got boots! Will be nice for around the barn. Right now I have running shoes that I've been wearing, but the sand comes in since they vent air on the sides. So now I won't ruin my socks working with the kids and horses. I also got an invite to take the test to ride this winter! I'm excited. I knew a select few are able to come work with the horses during the winter and ride them so they stay obedient. I just wasn't expecting an invite, and I've been too shy and self-doubting to ask. After helping with some training last week, she asked. The 2nd week in October is Dawson's last week, and also the last week of the season for ASTRIDE. The kids will come back in the spring.
 I also love the Target dollar section! Colorful puzzle pieces are the Autism symbol, so I got the last 2 and also the hands, plus a metal trash bin, all for $2! His therapy/play room has needed some more organization lately, so these will be nice to have.
 Gabriel was so excited the other day to get that car, he wouldn't even give it up at bedtime! I changed his diaper and asked for the cars. He said "no", and lifted his body towards me, still cudding the cars. So I just put him to bed, and this is how he fell asleep. He has claimed Tyler's Cars pillow too.
 For me, this has been a tough week. Every happy thing has been met with something sad. Dawson gets off the bus and I wonder how Tyer would've done on his first bus ride this year. I went to Sears, looking for jeans for Dawson. I really didn't think jean shopping would be risky, but when I walked around the corner of the boy's section, there it was. Tyler's red, white and blue striped shirt that he often wore, on the shelf. Suddenly I could barely breathe, the tears flowed over instantly and it was all I could do to get 1 more clothing rack over, into the corner so I could hide, hoping nobody else would come along. About 10 minutes and ton of kleenex later, I finally made my way out of there, no doubt looking awful. People were looking at me funny, I was in too much pain to care. Some things don't hit me and I think they will. Other times I'm not expecting it.

I then went to Target for a gift for my mom, and also got my cookware set, then headed to the card section. Mistake #2. When already emotional, never walk into the card section!! But it's just a birthday card, a happy "yay you're still getting old and are so awesome" card for my mom, right? No. The first one I picked up was all mushy and said "thank you mom for preparing me for a bright future". Well crap, there goes the waterworks, and again there are people staring. Thankfully it was not as bad and got under control quickly. I'm getting better at it, deep breathing, shaking myself off, plastering that fake smile on my face, and wondering if anyone else can see past it. I thought maybe this would get better over time, but really, nothing has changed. Some days are fine, sometimes I can go a whole day without crying. Other days it seems the whole day just eats me up.

I saw this picture on Rockstar Ronan's blog ( and it's so fitting. Taylor Swift worked with Ronan's mom and they wrote this song about her son, who died from Neuroblastoma, the day before his 4th birthday. It's a very touching song and I can relate to it so much.

When I'm especially missing Tyler, it helps to put pictures of him on my facebook and my blog. It helps, especially when everyone has been so nice about it. I always worry that people will get tired of me posting pics, and going on and on about him on facebook, but I need to, and it's not about to end soon, so if anyone is annoyed, you know where the delete button is.

The first week of September is not only about school, but it is a harsh reminder of Tyler's transplant. The 6th was the day we moved into UofM hospital. Tyler was in a pretty good mood that day, and happily ate his lunch and enjoyed the awesome view of cars on the street below.
Gabriel and Tyler hanging out, 1 year today, Sept 9th. It was his surgery day, his 7th one. His hickman line had snapped. Again. I'm so glad we have pics of them together. I just wish he was here to play today, they are so alike and would make such good buddies, driving their cars all over.
 This was also the last week he was doing things like running around, or even walking and standing without pain.
 Playing trains
This was after his surgery that day. To think I used to look at him after surgery and think he looks so sad. Now seeing his clear skin and how good he looks, he even had a few hairs that had snuck back in his 1 month without chemo.
 I seriously want to look like this after surgery. This boy was amazing. He'd want to hop down off the table after getting a huge hallow needle shoved into his hip bones. Or run out of the surgery unit after being under anesthesia. He was mad that I wouldn't let him, it was too risky because he was so loopy. That strength was just amazing.
September is also Childhood Cancer Awareness Month! Too bad almost nobody knows it. All we see is the pink ribbons popping up in the stores for October. Their month is overshadowed by it, and nobody talks about it. There are so many false assumptions about childhood cancer. Here's some facts.

 - Kids get 10x the dose of adults because kid's cancer is much more agressive. There are also childhood cancers that adults do not get, they are only found in kids. Those cancers have a very poor survival rate because there are no "hand-me-downs" for it, and little research money.

 - Relay for Life - NOT very supportive to childhood cancer!! 80% of their donations goes to pay their CEOs and only 1 penny out of every dollar goes to the kids. They just like using us for our adorable advertising opportunities.

- Every Day, 47 kids are diagnosed with cancer, and 7 kids die. Every Single Day.

- It is the #1 disease killer of children.

If you want to donate, is the most trusted research organization for childhood cancer. They have all Tyler's records and they only focus on kids and research, not their CEOs. I don't trust many other places, as far as research donations go. Some smaller organizations just give to them anyway, so I'd rather just do it direct. CureSearch works directly with Children's Hospital, St. Judes and all the big places!

Tyler has become a popular little boy lately! He is on many awareness posters, some from the US and some in other countries! Here's a few of them. He's on this website and their poster.  
He's on the right side of this one.

Who knew I'd end up with a poster child. I'd really just rather have him back and watch him color on my walls, make huge messes, throw big tantrums and be a kid.

I think this one, it's so true.
Lets hope this coming week is a better one, though that is uncertain, being that I'm starting it out with an 8 year old's funeral. RIP Jane.  Seems like just yesterday it was me, attending my child's funeral, standing up there in front of 100 people, talking about his life. Completely numb to it all. I remember bits and pieces, but I hope nobody is counting on me remembering anything they said.


amanda miranda said...

He looks like he put up a good fight.. :) Cant wait till they find a cure!!

Anonymous said...

I just want you to know that I've been checking out this blog for a while (even though I do not comment) but I just want to leave something today to encourage you! Tyler is definitely an inspiration! Take care!