Then and Now

I wanted to share this (with permission), it's from another mom who lost her son to cancer. It speaks for everyone who has lost a child. Here is her Caringbridge page if anyone wants to leave her supportive messages or read their story. http://www.caringbridge.org/visit/odieharris

"july 9 2011 (caringbridge post)
there are many like me...we who've watched our children fight for their lives, day to day, minute to minute. many of 'us' left behind in agony and shock, when our sweet ones can no longer fight, and their tired little bodies surcome to their disease. yet i still feel so alone.

many of 'our' children have fought and then in the end, found their peace...leaving many like me with broken hearts and empty arms, feeling like the spoils of an awful war that is now ended...stranded and lost in the middle of a quiet, dark, empty battlefield.

we are left with no choice but to attempt to rebuild some kind of life...but first we have to find the strength to breath in a world without them, then the courage to stand even though everything about us feels so broken. somehow we have to find our way out of this place of sorrow...but when we attempt to step out of the darkness...we have to do it with such empty arms... reminding us of what we have to step out of the dark without. moving any direction without them feels too much like leaving them behind...but really...'we' are the ones left behind.

when you're told your child has a life threatening desease...it consumes you. your child suffers the horrible symptoms and the physical pain, but you share their mental and emotional anguish and fears, to the point that you also are deseased. i still have cancer of the mind and soul...my boy is free of it...but i am not.

i have to believe that odie's torturous journey was for some purpose. i dont believe God makes these things happen but, surely He has a purpose for letting them happen...especially to our children. so i wonder if maybe the suffering of all the me's that are left behind, might also have some purpose. i will definitely never be what i was... and i have no idea how to stop being the mess that i am...can only hope to be more than this one day.

memorial day weekend 2010, odie...my beautiful 12 yr old son...my running buddy and best friend...my little room-mate...was told his body was at war with itself. instead of a pep talk about how he could beat this if he fought real hard...he was given the truth. the truth being, he could fight to hold it off, but...short of an all out miracle...his type of cancer wasnt something they knew how to beat.

so odie and his doctors went to battle. i stayed at his side...day after day...night after night...week after week...month after month...but all i could do was pray for his miracle, administer his 'ammunition', bandage his wounds and send him back into battle...in a war his body was loosing...we were loosing. we all prayed so hard for his miracle.

life this last year was so full of people, noise, and movement... but now its all gone quiet...the kind of quiet that makes an unbearable sound. life feels like its over...but i'm still here?... i've been left behind... and the things i've seen can never be unseen

now i have a painful disease...one with no cure...no treatment plan...one i have to live with for the rest of my days. God oh God please show me how to do that. help me step forward. give me the grace to honor Odie's little life with the rest of mine. please let there be a purpose.

when i would make mention of his brave spirit, odie would say something like "i'm not brave...just doing what i have to do." God help me to do 'what i have to do'. there is no path...just gonna have to look up and step out...with such empty arms.

maybe tomorrow"

Many parents I've talked to refer to times in their life as "before his death" and "after his death". It's so true, a totally different phase of life has started. One where the hospital, clinics and medical treatments are no longer a part of daily life. Instead we watch videos and have a shelf of medical supplies.

I used to give him sink baths, flush his lines, he required lots of care, but I didn't mind because he was still with us.

 Now all I have to do is dust his urn and rearrange his shelf now and then. I finally took down his little Christmas tree yesterday, put his picture in a frame and got out the little Willow Tree figure a friend got us. It's the wood one of the Angel holding the little boy.

Dawson has a trophy saying he's a special "Super Sibling". He'd much rather have his brother though.

 We took this book of prints the week before Tyler died. Green is Dawson, red is Tyler, purple is Gabriel.

 Now Gabriel's hand has caught up to Tyler's, who will never grow again. It's a hard concept to think about. We're passing him up, moving on. We don't want to, but we have no choice.

 Sibling feet

 It's amazing how babies grow in just 4 months.

 It's hard to see Gabriel playing with all Tyler's cars, his trike, wearing his clothes. Not sure if anyone has noticed, but Gabriel wears the same several shirts most of the time. I can't handle putting him in the rest of Tyler's clothes. So now I'm looking for 18 month t-shirts.

 I got a surprise in the mail yesterday! Turns out someone started this blanket, many people from some online groups got together and each made 1 square for us. It's a great reminder of all the different people who care for us. Dawson took this picture!

 Dawson immediately wanted to cuddle with mommy in it.

 Then Gabriel joined us. He has a cold and is feeling pretty miserable, so no smiles from him lately.

 I managed to tickle a tiny smile out. :)

 Dawson wanted a picture with Gabriel, but he was having none of that. I love how Dawson was still posing for the picture anyway.

 He's so cute! Good thing too. Just after that he decided to take the handheld shower head off and flood the bathroom. Again. So I mopped up the floor. Again. I was feeling that cold coming on and was not happy. So since we're working on emotions I decided to take the opportunity to discuss my feelings. He learned "mad", "angry" and "not happy". So at the end I asked him to make a happy face, then a sad face, then an angry face. He's good at happy and sad, but was doing all sorts of funny things with his face trying to figure out an angry face. He ended up doing an extreme sad face and then bugged his eyes out! I'd say that was pretty accurate. ;)

Hopefully we all get over this cold soon! We have places to go and people to see! I can't stand being cooped up, we're all going a bit crazy. 

Happy Birthday Dan!

Today was Dan's birthday. I never think of his age other than on his birthday. Most people are pretty surprised when they find out he's 11 years older than me. He turned 38 today! Looks pretty good still too, though I may be biased. It really is no fair that while he's that much older, I'm the one with gray hair and he has yet to get one. How does that work?!

We celebrated by inviting some friends and family over. My grandma, parents, brother, and his sister all came. We also had my friend's little boy here. She was invited and was even running a quick errand for me, but was having a tough day and wasn't feeling up to it. So when she stopped by to drop off the ice cream, I told her to leave her little guy here and sent her home to have a day to herself. She didn't complain! :) 

The 3 kids had fun playing. It really was a fairly easy day. He's been here several times now so just made himself right at home playing. Gabriel didn't have much of a nap today, so he was quite happy to get to bed tonight. He really loves his sleep!

Gabriel loved the cake, he hasn't had cake before, but sure had a good time with it. Good practice for his birthday at the end of the month!

 Noticing all the frosting on his hand

 Yum!

 Chocolate face!

 Dawson and my mom

Sleepy babies are so cute!

 Dawson showing off his garlic bread. He likes spaghetti suppers.

 Gabriel is loving spaghetti too!

This week will be an interesting one. No school all week, and being off schedule is always a challenge. Hopefully we can find some things to do around town and keep busy. I have some ideas, I'm just nervous about how busy the places will be with everyone out of school!

Kids we Love

This morning started out very slow. I finally got rid of the headache I'd had for 3 full days, but I took Excedrine before bed, which apparently was a very bad idea. I was awake most of the night! I was up for the day 2 hours earlier than usual, and so was Dawson. Therapy came at 9am so we snuggled for a while and I finally just decided to start a project while I waited. I also decided to invite a friend over. Fridays can get very long for us all. Dawson gets very frustrated with therapy sometimes because he has back to back sessions from 9am-3:30pm. So it's a full day for him.

I got a cupboard designated for Dawson's gluten-free foods and snacks that he can have. So now I don't have to tell him no for everything else he's pointing to because everything in his cupboard will be ok for him. My friend arrived and Gabriel was so happy. He gets bored during therapy because Dawson is in the playroom with the door closed. So having a friend to follow around really helped with that. They are new friends, I just met them at ECFE class and we've had lots of fun getting together. She's a single mom who's been through a lot and I admire how dedicated she is to her little boy and what a great job she's doing. Her little boy is adorable too, in some ways he reminds me of Tyler, the way he says certain words, or that mischievious look he sometimes has. He even lays on the floor while playing with his cars. Mostly typical 2 year old stuff, but so much of it reminds me of things Tyler would do and brings up memories. It can be a good thing though, it often makes me smile thinking of how cute it was when Tyler did those things. :)  Here's the adorable little guy.

They left early afternoon. The little guy needed a nap and Dawson was getting quite crabby about therapy. She left and then I got a call from a friend having a freak-out moment that only an experienced hospital mom could talk her off the ledge from. It means a lot to be thought of and I like to be able to help out somehow. Her sweet boy might be rejecting his new liver, and also has some infections, but they sent him home with meds which is a good sign! He could use some prayers, his name is Dallas and he has Cerebral Palsy. Here's a pic of him and Gabriel hanging out at the hospital in late October. He loved seeing the baby! Such a cutie.

These kids we do babysitting swap with. They watch our boys when we go skating and we give them breaks too. It's been tough this winter with illness, but we try to keep on track. Dawson loves going to their house. He always says "go see girls?". Tonight they came to our place for a few hours. They have 3 girls and a boy and another boy on the way. Ages are 1, 2, 3, 4 and due in 6 weeks. I'm pretty excited for the baby, and their mom is thoroughly exhausted at this point. I thought it was hard enough keeping up with 2 kids while pregnant. I'm glad I can give her some breaks now and then. They are (of course) pretty well behaved for me, since I'm not their mom. ;)

Here's Gabriel and her little guy having some crackers. They look so cute sitting together.

He's a good climber!

 Gabriel decided he needs to figure out how he did that! No luck though, he's a bit shorter and a few months younger. I love the look on his face and how he has those monkey toes on the chair leg trying to get up.

 Suppertime! It's so cute seeing them all sitting around the table. Dawson didn't want to at first, but he eventually did settle down and sit for a while.

I'm pretty sure the UPS guy now thinks I'm crazy. We had a buzz at the door and I thought it was our therapist. So I took Gabriel and opened the door a bit, having him peek out the door and waving his hand. So when a bearded man came around the corner instead of our therapy lady, it was just an amusing moment. I couldn't remember what I'd ordered, but opened it to find the goodies from our Chocolate Party!

That is a lot of chocolate!

 All layed out so I could get the orders together into bags. Looks so yummy! I happily called everyone to let them know. It's always fun giving good news. 3 orders got picked up today already. People are pretty excited about their chocolate. :)

One of the friends who picked up her order also brought her daughter and she played with the kids for a while. Then she even cleaned up all the toys, which was a lot! The girls did a pretty good job cleaning up a lot of it too thankfully. I still need to work on that with Dawson.

Thursday we went to ECFE and Dawson wanted me to take the camera. I always get such cute pics there, the lighting is good and there's many things to hold them still for a bit!

 Gabriel looks so cute and older in jeans! I also wonder how much longer I'll be watching his butt crawl across the floor. He's getting so close to walking.

 Platform swing!

 What is this? I think I like it!

 I love this pic, he's so adorable! His blue eyes really show here. These pics are all clickable if you want a closer look.

 Dawson decided to join us. He wanted to "fly" like Gabriel, though he wouldn't lay down.

 Kneeling is much more fun!



Fun Week

This week has been a fun one. We played at the mall, went to MOMS and ECFE class, had some playdates with a new friend and her 2 year old and played outside in the snow. Today was a snow day, we got about 6 inches overnight, so I took Dawson outside while Gabriel napped. I got the snow off our cars and switched carseats back to the van. Dan had used it the other day. Then since Dawson was still climbing piles of snow I started getting the snow off everyone else's car at our apartment. It was good exercise! I was pretty tired by the time I was done and Dawson was happy and tired too. It's interesting that 2 days ago Dawson was riding his bike around outside and today he played in snow hills. Hopefully we'll go back to our mild winter soon.

We still went skating tuesday night. We were the only people who came! After a while a couple of the manager's friends showed up, but it was interesting having the place to ourselves. Dawson loved playing with the girls too. They got a new Toy Story video game and Dawson handed me the controller so I was playing it. Was so funny, I haven't played video games in a while and never an x-box, so I was trying to remember what button did what and I had 4 toddlers shouting directions at me! Dawson was just going along with whatever the girls were saying. It was so funny, I was almost laughing too hard to concentrate at times.

Last night I had a dream about a tornado. Ironic since overnight there was a bad tornado in IL! Of course my dream turned into bad guys attacking us and I was trying to charge and throw balls at them. I guess that video game stuck with me! Dreams get so much more weird once you add your kid's stuff to the mix. I often wake up with the theme song to a cartoon in my head too. The other day it was Veggie Tales, and I'd only watched it once!

Gabriel is getting so big! He turned 11 months yesterday and he is now able to walk by just holding onto 1 hand. We were playing with some toys and he said "A" and "O". The other day he said "bubble" and "ba" for ball. He's saying "mum" more too now. It's so weird hearing him say and repeat things. I know we aren't supposed to compare kids, but he's saying as much as Dawson did at 2 1/2! He claps, waves, gives high fives sometimes. He climbs stairs, eats pretty much anything, he babbles at other kids too.

I have had a horrible headache for the last 2 days. It's just gradually getting worse, so I'm already dreading tomorrow. Nothing seems to be helping. Hopefully the boys will let me nap a bit. I'm really hoping there is school, because usually Gabriel naps in the afternoon and I can nap too.

Gabriel always sleeps in the corner of his crib, usually with his butt in the air.

 Books that are going to the hospital for parent resources. I was going through some unpacked boxes and realized I had a lot of cancer books!

 Dawson decided this would be a good place to have a snack. I've been cleaning out things and had this in the hallway for a bit for Gabriel to play with. He barely fit into the seat.

 Gabriel was helping me decide what's for supper. He was mostly just excited to see the door open, since there's locks on all the doors now.

 Sharing a snack. Dawson is getting so much better at sharing! He usually has to be reminded, but it's a big improvement.

 Yummy crackers

 Dawson was trying to get out of the seat. I'm surprised he was able to stand up. I didn't see how he managed to do that but he walked around for a little bit before he accepted he wasn't getting it off and let me help.

 Dawson wanted to watch some videos of Tyler. He loves watching them and is always smiling and giggling.

 He loves his brother so much. It's sad that all he has left is pictures and videos.

 He gets so excited that he can't sit still, so he gets up and sits back down many times.

 So excited. Tyler's videos are very funny. This is one of his favorites, the one he was watching. http://www.youtube.com/watch?v=sCLc8OxYAtk&feature=related