Friday, December 23, 2011

Day +100

I've been looking forward to this day since they told us Tyler needed a transplant. It is the special day where bone marrow transplant patients get to go home, 100 days after their transplant, after watching, waiting and living at Ronald McDonald House. I knew it would be right around Christmas and thought it would be the perfect gift, to bring our little boy home and have a big Christmas celebration.

Instead we got sent home early, something we didn't anticipate. I thought maybe we'd have to stay past 100 days, and that would be frustrating, but overall we'd manage, as long as he came home eventually. Instead the unthinkable happened. His body failed and he died. My child, the one who was more full of life than anyone I know, slowly slipped away. It's hard to think about. He fought all but 3 months of his life. He didn't get his cure, he didn't get to come back home like I told him he would. He came home in a little marble box instead. We don't get to hear his giggles or see his cute self running around, we have to watch video clips, which now seem like so few in comparrison to his life. I'm wishing I would've gotten videos of him saying certain words, so I can remember just how he said it. Thankfully we have lots of pictures.

I had asked the portrait studio if I could have a cd of Tyler's sessions. She already knew his story and  she said we could look them up. She found his 2 year session and put that on a cd. For some reason she couldn't find his 1 year session, so she did the cd and gave me that. Then she decided to look a different way and ended up finding his first one. She was only allowed to give us one cd, so she said if I bring one in, she'll give me the rest of the pics. I'm so excited to get them, his one year session was so adorable!

When I took Tyler in for his 2 year pictures, I had just found out he relapsed the day before and wanted to get the pictures done before we got admitted again. It was an emotional day, wondering if that would be his last birthday photoshoot. It was. We only got 7 decent pictures. He wasn't feeling very cooperative. He had a cast for his broken leg and he wasn't feeling too well.

This is the picture we got for his 2yr pictures
 He was really bouncing around, so he ended up not centered.
 I believe I was holding his arm on his left side for this one and he was trying to pull away from me. He was so wiggly!
 I think the darker background makes him look so different!

 Classic Tyler arms. He always waved his arms around when he was excited. The arm in the corner is Dawson. You can also see his walking cast boot a little.
 This one looks like he's flying to Heaven or something. I didn't like it when I first saw the picture, but I do now. The excited, joyful look on his face gives me comfort. I'm sure he probably ran through those gates with a big smile on his face, waving his arms around and giggling, like he always did when he went to new places.
I finally got a lot of things cleaned and organized, so I got to add many things to the pile that went to the Women's Shelter. Also, Gabriel decided that baby food is no longer cutting it, so the got the rest of what I had. Lots of clothes, bedding, blankets, toys, books, personal items, etc. They have a list online that I looked at for ideas. So much of this stuff had just been sitting around taking up space. Felt good getting it out of our place and giving it to people who could really use it.
 While Dawson was at school and I was cleaning the playroom, Gabriel was bored, so since I'd just emptied this bin, I made a little ball pit for him. He had so much fun! Here's a video of him enjoying it. http://www.youtube.com/watch?v=vRd5fw7HBqw&feature=youtube_gdata

 Meanwhile, I got our playroom cleaned, rearranged and organized. I'm hoping the puzzle mat will save the carpet from playdough, markers, paint and all that we do on the kid table.
 The room got well used this evening, since I babysat 4 kids, ages 4, 2, 2, 1. We are swapping babysitting for date nights, which is working out nice so far. Dawson was very excited to have them over. He kept saying "play with girls". We went to Walmart and he kept asking for them. Eventually "play with girls" ended up as "I want girls", in a rather loud voice, so that was entertaining. Ironically, he doesn't actually play with them, he just likes having them over. We are working on that social stuff, but for now it's all just parallel play, which is going much better. As you can see in the pic, he's standing right next to her and they are both playing with trains. He actually shared trains! Usually he wants them all or he throws a big tantrum. There were a few toy battles, usually involving Dawson, but thankfully they were very short lived. Thankfully I didn't have to use up all my fun ideas, but they did the Dance Cam, which is a toy that shows them on tv and they can dance around and watch themselves. Set up a big tunnel tent with chairs, which even the babies loved. We colored, played with trains and they played nice for quite a while. I even got to make banana bread.
I can't believe tomorrow is Christmas Eve! There is no snow on the ground and it's just weird. Hopefully we'll be able to enjoy Christmas. Often when we're at other people's houses it's a little easier to distract myself. We are going to my parent's house for Christmas Eve and to my Grandma's Christmas Day. Thankfully we only have about a 30-40 minute drive for each. I hope everyone has a great Christmas!

5 comments:

Unknown said...

I hope you have a very merry christmas! My thoughts and prayers are with you and your family. God bless!

db said...

Thinking of you this Christmas Eve morning. I truly hope that you can find peace and comfort with family and friends this Christmas season. I can't imagine the strength it took to donate Tyler's toys and other items. May you find lots of comfort in knowing others are grateful and enjoying all of your donations. You truly have a huge heart. Love Tyler's photos, he just has the biggest happy smile :)

Jennifer D said...

To think when you first said 100 days it seemed so long yet it doesn't seem like it was. My thoughts and prayers have been with you, Dan and the boys just hoping that you continue to find a pattern that works for you all. Thank you for being so open about what you are dealing with. Merry Christmas Steph!

Donna said...

I hope that you all have a wonderful Christmas, and that peace finds you all. I know your little Tyler will be with you, watching and smiling down. Hugs to you from Nebraska.

Lynne said...

I won't wish you a Merry Christmas, because I know it will be hard to be merry, but I can wish you a Joyful Christmas, which is more in keeping with the tone of the holiday anyway; joy for a life that was cut short but remains deep within us. I know that everything of Tyler's that was donated will find its way to someone who will benefit from his love of life and the energy he imbued in all he touched. The pictures are wonderful, and his smile will be with me always. Blessings of the season on your family.