I Hope

I hope you never have to hear the words “Your child has cancer”.

I hope you never have to hear “The prognosis is not good”.

I hope you never have to watch your child prepare to undergo
chemo, have a “port” surgically implanted in their chest, be connected to an IV pole, look at you with fear in their eyes and say, “Don’t worry Mom, it’s going to be okay.”

 

 

I hope you never have to hold your child while they vomit green bile.I hope you never have to feed them ice chips for lunch.

 

 I hope you never have to watch the “cure” you pray for slowly take
away your child’s identity, as they, lose their hair, become skeletal, develop severe acne, become barely able to walk or move, and look at you with hope in their eyes and say, “It’s going to be okay Mom.”

 

 I hope you never have to stay in the hospital for weeks at a time, where there is no privacy, sleeping on a slab, your face to the wall, where you cry in muffled silence.

 

 I hope you never have to see a mother, alone, huddled in a dark hospital corridor crying quietly, after just being told “there’s nothing more we can do”.

I hope you never have to watch a family wandering aimlessly, minutes after their child’s body has been removed.

I hope you never have to use every bit of energy you have left, with all of this going on around you to remain positive, and the feelings of guilt, sorrow, hope, and fear overwhelm you.

I hope you never have to see your child’s head bolted to a table while they receive radiation.

I hope you never know what it is like to take you child home,
(grateful but so afraid) in a wheelchair because the chemo has damaged their muscles, 35 pounds lighter, pale, bald, and scarred, And they look at you with faith in their eyes and say, “It’s going to be okay Mom.”

I hope you never have to face the few friends that have stuck by you and hear them say, “Thank God it’s all over” because you know it will never be over.

 Your life becomes a whirl of doctors, blood tests, and MRI’s, and you try to get your life back to normal while living in mind-numbing fear that any one of these tests could result in hearing the dreaded words “The cancer has returned”.

And your friends become even fewer.

I hope you never have to experience any of these things. Because only then will you understand.

Carol Baan
March 12, 2003

 

 

I would also like to add a few of my own.

 

I hope you never have to make the decision to end your child's life, while wondering if that miracle is around the corner.

 

 I hope you never have to watch your child struggle to wake up, as the Drs add more medicine to keep them down so they don't feel the intense pain.

 

I hope you never have to explain to a sibling that his best bud is not going to be with us anymore.

 

THANK YOU!!! To everyone who helped us out. Who stuck around. Who listened to us when we needed an ear. Who respected our decisions. Who do not judge our grieving process. Who brought us gifts. Who mailed us cards. Who took their time to stop by and help out. Who came to see us in the most difficult setting. Who flew across the country to meet us and take priceless pictures of our family. Who helped us move back home and bring our things in. Who brought me things at the hospital when I was unable to leave. Who took Dawson in when we couldn't keep him with us. Who left her family to live with us in the cities and help out.

 

Who came over when I called and said I can't be alone today. Who braved calling, even when there was nothing to be said. Who set up benefits and donated. Who got a Cars tatoo in his honor. Who named their baby after him. Who shares his pictures. Who still mentions his name and shares stories I haven't heard before. Who still sends cards. Who chats until late hours and keeps me distracted from the quiet house. Who still cleans my house when she comes over. Who watches my kids so I can do something theraputic for myself. Who gives me a hug with no words necessary. Who invited me in, called me, came to see me, without even knowing me.

 

I will forever remember all the wonderful people who have been involved in this process. YOU are a part of his story, one I will never forget. Tyler has brought a lot of people together. If not for him I wouldn't know half the friends I have today. Thank you for being there, and sticking with us.

My Amazing Boys

I often get comments that Dawson is the most polite kid in school, or wherever we are. He has for a long time, just copied things he's heard us say, so obviously we try to keep that positive and we are huge on praising the good things. It's so nice hearing some of the phrases catch on and get used a lot. Some are just funny too, he's a very literal child, so some things, past tense, plurels, etc just go over his head. He also doesn't understand phrases like that. He'd be looking above his head if I told him that. Or even simpler ones.

Random funny and cute things I've heard Dawson say lately:

"You're a sweet pie, mommy."

"Oh thank you mommy, you're doing awesome sharing crackers!"

"You're a sweet boy, mommy." (I tell him I'm a girl)  "Oh. You're a sweet girl, mommy."

He rubs my face. "You're so sweet, mommy. You doing a good job."

"mmm, valilla crackers" (which is amusing since 3 weeks ago he couldn't say the L sound!)

"Dawson doing such a nice job. Dawson doing good, mommy?"

"Look mommy, I got my dress on!" (he got dressed, but he dropps the "ed" when he says past tense!)

"Say, You're awesome, Dawson" (I say it, he grins big)

I asked him if I can give him a hug. "Ok, but just a small hug"

"Look mommy (points to my armpit), that's rough! And this (points to my arm) is smooth!" (Gee thanks, buddy, I'll get on that)

As he's walking through walmart he starts pointing and saying the words to match "left, right, up down" (repeat many times) 

"Mommy, can we get toy?" I tell him no, I don't have the money for that now. "Can we go find a quarter, mommy?" (he thinks things cost a quarter. I wish!) 

"Gabriel, you need to say Please first!"

"Mommy, Dawson is silly!"  "Is Dawson silly?" (yep) "Yeah, Dawson IS silly!" (we're still working on the speaking in 3rd person thing)

"Thank you mommy, tummy feels better. You doing awesome!"

"Chew it up good, mommy!"

"See mommy, I being nice to Gabriel."

He also randomly comes up to me and gives me a hug and/or a pat on the head or back.

Every morning he says "moon went down, sun came up!"

Every night he says "the sun is down and the moon is up!"

He asked "stars make the rain mommy?" I told him it's the clouds, so now he sees clouds and says "clouds making rain?" He's so curious about how things work, especially the sky.

Tyler has moved to the front of the sibling list, and if he's naming the whole family, he often puts Tyler first in front of everyone.

When I tell him he gets to ride his horse today, he lights up and goes through all the info. Sonjay likes treats! I say woah to stop and walk on to go. Sonjay does such good listening! I give her treats! His teacher at ASTRIDE says he's doing wonderful and has made so much progress with his 4 sessions.

Gabriel always does this and I think it's so cute and funny! He sits at the end of his crib, legs through the slots, just looking at the door. Often he doesn't even fuss, or he'll fuss a bit, then I'll say I'm coming and he'll stop and just grin when I walk in. So adorable!

 Hi mom, I'm done with my nap!

 My view walking in the door. I guess he has to get as close to the door as possible. Which is amusing since the other 2 figured that standing and screaming would get them closer than sitting.

Gabriel has been saying lots!!

"NO!" or "NoNoNoNoNoNooooo"

"Help me!" (His toy was stuck)

"Woof!" (any animal may or may not make dog sounds)

Daddy, Dad, Mommy, Mom, Dawson, Gabriel, Katie, Buddy, Sarah. He's saying lots of names, and even remembers them! We pulled into Katie's driveway and he says "Katie! Woof!" She has 2 little dogs and he loves them. :)

More, a-done (all done), please, thank you, yum yum YUMMY, uh oh, me, oh no, yes, cracker, ice cream, chicken, cheese, this, that, yay, car, truck, train, dog.

It's getting to the point where he's trying to imitate much of what we say. I tell him what something is, and he really thinks about it and tries to say it. So neat! It's all happening so fast. Tyler had several words, but never this much. Makes me sad that I wasn't able to hear more things. With every milestone and achievement, there's also sadness because he's passing Tyler up. I dreaded this, but I was hoping to get another year before it happened.

Yesterday it was colder out, so I put pants and socks on Gabriel. I realized as I pulled out his socks, that they were too small. Next size up were Tyler's. They fit perfectly. Socks are one of those things I decided was manageable. Really, it's just socks, right? I guess we'll find out. Like most things, we just go with what feels ok. Even the littlest things are difficult.

Can I wake up yet? I really want to cuddle my sweet boy again.

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 (http://rockstarronan.com/) 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. http://www.youtube.com/watch?v=tvN7BOAQn9I

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

 Drawing

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, www.curesearch.com 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 www.brennansbuddies.org 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. http://www.caringbridge.org/visit/janefiemeyer  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.