"Liar! Liar! Pants on Fire!"

This is what Cole and Ally would be singing to me if they knew it's been over 2 months since my last post when I committed to keep up on this old blog. At least if they were singing the "Liar! Liar!" ditty, it would give me a brief reprieve from the "Batman smells" version of Jingle Bells that Cole sings literally all day long. I'm not joking. When he's not belting it at 85 decibels, he's humming it or playing it on his air guitar. Or my personal favorite, he makes up new versions that include Spiderman and Lizardman or Wolverine and Magneto. His Spiderman one from this weekend went like this:
"Jingle Bells,
Spiderman smells,
Lizardman got away!
The sewer just got stinkier
And Green Goblin played ballet!"

A budding Axel Rose. We're so proud.

I'm really not sure how to catch up so I'm going to just give a quick update and do my best to catch up throughout the week. I think the number one reason why I've avoided blogging is the pictures. I hate to post without pictures and I really hate not having any pictures of Keith to post. I have hardly taken any pictures in the last 3 months. It's not fair to Cole and Ally, I know. I've got to do better. It's just really painful to take pictures of "the kids" and not have Keith in them.
In an effort to right my wrong, I took some of Cole and Ally on Sunday after church and the reason I felt like I could post them is because if you look closely, by Cole's right arm, you can see a sweet, smiling picture-ornament of Keith hanging on our tree. (Thanks to his nursery leaders three years ago). So, he's still in the photo which makes me feel better about posting again. I didn't plan it that way at all which makes me even more convinced that I should keep writing. His presence is still here.

 And Cole insisted that if he smiled for a picture, that I needed to also take a picture of him singing "Jingle Bells, Batman smells..." So, as promised, here he is singing below. Ally's bewildered face and physical distance says it all.

 I took Cole and Ally to see Santa and two of his reindeer on Friday: Comet and Prancer. They were so excited to hand Santa their lists. Cole has an extra piece of paper in his hand where he drew a picture of Santa and Keith and himself. I wanted to keep it but Cole really wanted Santa to have it, so I guess I'll have to get him to draw me another one. Santa said he would put it on his fridge in the North Pole though, so I guess that's almost as cool as being on our fridge at home.

Cole and Ally talk about Keith throughout every day. It's actually becoming more often instead of less, which surprises me. I know there will come a time when they won't talk about him as much and that will make us really sad, but for now, we are so grateful for the memories they have and especially that they have a desire and a safe place to share them. I try to record them every week in my journal but there were a few this weekend that I thought I would share.
Out of the blue on Saturday, Ally said, "Mom, you know what Keithy liked to do? He liked to scoot around." And then right after that she said, "Hey Mom, you know what Keithy didn't like? He didn't like stretching his feet." (I would have to stretch out his heel cords which was miserable for both of us.)
As Ally was eating her second candy cane of the day yesterday, she said, "Keithy LOVED candy canes!" with a big grin on her face. She also prays in every prayer to "please bless Keith" and "we're thankful we will be a family again" and sometimes she even prays "that Keith can come back soon". That gets me every time. 
My dad told me that after my brother died at the age of 1, (I was in first grade), that I would pray every night that he would come back. I guess children can't help but ask for what they really want, especially when the idea of "permanence" is not a concrete element for their developmental age.
Cole prays every day that he is "thankful for Keith and glad Keith will always be my brother." Cole always wants to hear stories about when he and Keith were little(r) and he is constantly taking things to the cemetery for Keith. His latest items have been a sword from the dollar store, a McDonald's toy, some bracelets he made and a green candy cane. A few weeks ago, Cole and Ally colored at least 20 coloring sheets to take to Keith's grave and they were all colored green since that was his favorite color. I had to put them in a plastic bag so the rain wouldn't completely ruin them, but up to the cemetery they went.
This weekend Cole wanted to sleep in Keith's bed so of course we let him. We split the bunk beds into separate rooms when Keith was referred to Hospice since we thought it would help both boys sleep better. So, we now have "Keith's room" and "Cole's room" which is a little strange since they always shared but for now, that's the way it's working around here. Cole's clothes are all still in Keith's room because that's the room they shared together. This way, Cole can create disaster zones in not just one bedroom, but two. It works out really well for the maid...I mean, me. I actually think it's been good. Not the maid part, the part of having Cole's clothes in Keith's room. Cole is in there several times a day so it hasn't become an "off-limits" space or anything like that. Aunt Chels has slept in there for several nights and when she's gone, I've been known to slip in there for a night or two. I keep trying to capture his scent. It's really fading which makes me so, so sad. I know it can't last forever, but I wish it would.
Cole had my iPad yesterday and I noticed that he googled his own name and had done an image search. When Brent and I asked him "why", he explained that he was searching for pictures of Keith and himself. Brent went through our blog with him to show him some pictures and we reassured him that he can look at pictures of the two of them anytime. (This was also a parental "note to self" moment that I need to supervise Cole more closely on the iPad. He can google his name? And do an image search? Good thing his name isn't Hugh or he might have discovered some pretty spicy images pop up).
Cole is always telling us about things that Keith liked or did or if we see a new movie, he will say, "Keith would have liked this show, Dad."
I'm grateful for where we are as a family as far as communication goes. I can sometimes see people bristle when we say Keith's name or talk about him so freely but for us, that's the best way to handle it and I'm glad we can feel like he's still such a part of us when we miss him so desperately.
I could say a lot more but I'm calling it a night. I've just got to get at least one post up so I can start to catch up! If I try to do too much, I'll never post again.
So, I'll just leave you with a small window into the skyscraper of Cole's imagination. Last night before bed, he was explaining to me that he, the blue Power Ranger, was pretending that our little Santa statue was a robot Santa, made with wires and electricity, but he didn't know he was a robot Santa. Instead of giving toys, he had been stealing the toys. Hence the bag of stolen toys slung on his back. So, Cole was there to investigate and to fight the robot Santa so he could save the real Santa. It sounded more complicated and cooler when he said it, but basically that was the jist of his scenario he was acting out. I got a few pics before he noticed me.

And Ally, such a little squeeze, trying to run around as fast as she can so she doesn't have to go to bed.

Also, I feel like I should explain Ally's shorter hair style these days. The day after Keith's funeral, I was not in a good place emotionally, obviously. So, when Ally got out of the tub and I couldn't get a comb through her locks, I literally grabbed the closest pair of scissors, got a brief and hesitant nod from my sister, and chopped a good 6 inches off her hair. It was supposed to be less, but she turned her head right when I snipped and then I had to even it out, or at least my version of evening it out. I was never very good at drawing straight lines, so it was pretty haggered for awhile until my Mom took her in to get it fixed. Ally didn't seem to miss it one bit but it was her dad that I feared. He loved her long and unruly mane but probably because he didn't have to force a comb through it or tackle Ally to the ground to attempt a pony tail every day. Thankfully, Brent took it easy on me and actually, dare I say, has grown to love it. I mean, who wouldn't love any hairstyle on that face? Also, I thought it would work better for Halloween since she was going to be Snow White. It was all part of the plan. I think.

Keep moving

When I started this blog in 2008, it was simply a way to update out-of-town family and friends on the Burnett family happenings. When Keith was diagnosed with his brain tumor, I had a decision to make and I felt strongly that I should keep writing even though a part of me wanted to keep everything private. We knew family and friends would want to know how Keith was progressing through his treatments and how we were holding up as a family.
Now that Keith is gone, I've found myself at another crossroads and I've been vacillating all month. There's a significant part of me that wants to stop blogging. From my observation, it is common for families to stop updating blogs and caring bridge sites after their child has died. I completely understand why. It's just too hard to write certain things. (Those are the things I will probably try to avoid.) And people generally get uncomfortable hearing about death and grief because they don't know what to do or say and they feel awkward. (It's okay. We don't know what to do or say either, so you're in good company.)
As I've thought through it, I've determined that this blog is still the story of our family. Keith is still a part of our family even if he's not here with us now. Brent and I and Cole and Ally are here and somehow life continues. The sun comes up every morning and days continue to come and go. Lately I feel like I watch each day and cannot wrap my head around how the world keeps going around me when I feel like my life has fallen apart. My daily routine is completely different now. A month ago, my world revolved around Keith. I didn't like all the things we had to do together, but I got to spend all day and most of every night with that special boy. How is it that I got to spend so much time with such a remarkable soul? I feel so blessed for that time together and at the same time I feel so deflated at the loss of our companionship. My daily routine seems to have no purpose. It feels meaningless. I know that is not true, but it feels that way a lot. I keep telling myself that Cole and Ally need me to be present in their lives and to teach and nurture them daily. (At the very least, I've got to feed and clothe them!) Brent needs me too. I know that. But there is nothing. And I mean NOTHING that is more fulfilling than caring for a child like Keith. It was exhausting but rewarding. It was hard but so worth Keith's company and the feeling I got each day knowing that I was participating in something so crucial. Something that I knew nobody else could do because I was Keith's mom and that was my blessed role. A role I will cherish forever. I miss Keith so much it physically hurts. My chest feels hollow, like a huge hole has been drilled right through it and my stomach is a mass of churning knots. In addition to missing his physical presence, I've come to realize how much I miss who I was when he was here. I miss being so intensely focused on someone outside of myself--someone I love so much. I was better because of him. Keith was "my best four years," as Taylor Swift puts it in her new song about a 4 year old boy who died of cancer. Ironically, her song was released the day of Keith's funeral. You can check it out here if you haven't heard it. Every time I hear it, I need a super-sized box of tissue and 2 dozen ice cubes to reduce the swelling around my eyes.
Anyway, I've found the best thing for me is to keep moving. I just try to keep busy with Cole and Ally and do fun things outside the house and when we are home, I just try not to sit. It's hard because everywhere and everything triggers a million memories of Keith. I love that and I hate that. I love to have memories to cherish and I hate that it hurts so much. But we just keep going and doing as best we can. Cole is in two different preschools. One is a co-op with some friends of mine and another is Keith's preschool in the Early Intervention program. They were looking for some kids to be what they call "typical peers" and I thought it would be good for all of us to stay connected with the program. Ally and I spend time running errands or doing chores around the house. She's a great little helper. Cole and Ally are weathering decently. They still talk about Keith and we encourage it as much as we can. Anything to keep their memories of him alive. Cole really misses Keith. We can see it and he also verbalizes it sometimes. Our hearts ache for his loss that we know he will only miss more as he gets older.
Brent and I are holding up okay. I don't even know how to answer how we're doing. We aren't crying constantly but we feel a constant, nagging sadness that eats at our insides anytime we aren't sleeping. Tears still come unexpectedly. 
I'm so grateful for Brent and Cole and Ally. When we turned to leave Keith's graveside after they lowered him in the ground, I told Brent that if it weren't for him and Cole and Ally, I would climb right inside that hole next to Keith. And I meant it. I'm just so grateful for these three who give me a sense of tangible purpose to each day. I don't know if they'll ever know how much they save me.
It's also been a huge help to me to have my sister, Chelsea, here for a whole month, visiting from London. She keeps us moving and planning things every day. Cole and Ally love having her here, too.
We met Syd and Nick at the beach last week where the kids had a blast. I couldn't get Cole to leave the sand dunes. We jumped and ran and slid all afternoon.

Chelsea striking a serious pose. I couldn't resist this pic.

Snick, about to pull Evie's arms out of their sockets.

We've been taking Keith's stuffed chipmunk, Theodore, on all our outings so we can feel like he's with us. I know it's kind of strange but it helps. I hate a pic of all the Smart grandkids without him in it. It just doesn't feel right.

Although, after looking at these pics, I think someone other than Cole should be in charge of holding Theodore next time. He looks like he's going to fall.

Me, blowing off steam and pretending I can jump. Trust me. I can't.

Evie: squeezable as ever.

 Cole and Ally are pretty good to play together at home. Cole has been into shooting arrows like Hawkeye lately. I had been searching for the case to my glasses for over a week when I finally found it in the back of Cole's shirt. Of course he had been using it to hold his arrows for easy retrieval. Obviously, I should have thought of that.

So, anyway, that's how we've survived this past month. Keep moving through the fog of emotions and try to do our best to focus on what we need to do each day. One day at a time.

Also, I wanted to include these photos of Keith from his last few weeks and days. I just can't post without a picture of him. There are so many precious pictures of everyone soaking up time with him. The ones that especially get me are the ones of Brent. Brent loves that sweet boy and Keith loves his dad.

Keith feeding Evie Smarties candy.

Keith feeding Aunt Syd some Smarties.

Grandpa Smart reading stories.

Aunt Annie and cousins Jade and Cohen with Keith.

Uncle Shea snuggling with Keith.

Grandma and Grandpa B getting some time with Keith

Aunt Julie and cousin Caden having Popsicles with us.

Cole, Keith and Ally watching a show together. I desperately hope Cole retains some memories of these times. He was such a dedicated brother to Keith.

Ally was always really sweet to get Keith things that he needed. She always watched out for him.

Keith snuggling with his Dad.

Tribute

Photos in the last 3 posts are from Mary Thompson, a gifted family friend who has taken photos of Keith since he was a baby. She graciously did a photo shoot for us 2 weeks ago.

Keith Darrell Burnett, age 4 years and 10 months, passed away peacefully at home surrounded by his loving parents and grandparents on September 2, 2012.

Keith is survived by his parents, Brent and Darcee Burnett, his twin brother Cole, his sister Ally, grandparents, great-grandparents, and many aunts, uncles and cousins. Keith is preceded in death by two great-grandfathers, Douglas Burnett and Eldon Smart and his uncle Bay Smart. He is beloved by all who knew him and knew of him.

Keith was born in Boston, Massachusetts as the second of identical twin boys, on November 1, 2007 to parents who had very anxiously awaited his arrival. Keith and his brother Cole were an adventure even before birth as they exhibited characteristics of a high-risk pregnancy in Twin to Twin Transfusion Syndrome, causing growth restriction for Keith. This led to a premature, emergency c-section delivery. At only 3 pounds and 2 ounces, Keith was small. But the delivery nurse that handed him to his proud father said words that would almost prove prophetic when she said, “He’s small, but mighty.”

Keith proved many times just how mighty he was. Even in his first 3 weeks of life in the Neonatal Intensive Care Unit, he never needed oxygen like many premies of his gestational age. He always had a strong heart and lungs. Keith was able to come home from the NICU just in time for Thanksgiving and celebrate the happiest holiday on record.  When Keith was only 6 weeks old, his family made the cross-country move from Boston to the Portland area. They settled in Tigard in March of 2008 where Keith resided until his passing.

Keith was always an incredibly bright, pensive and thoughtful child. He had a remarkable memory and loved puzzles and books. He could focus for long periods of time on activities and often seemed deep in thought which made him seem wise beyond his years. Keith always put others’ needs before his own. He easily gave up toys to other children and was an abnormally selfless toddler and child. He’s always been our “sweet Keith”, even when he was diagnosed with a malignant brain tumor on February 1, 2011 at age 3 years and 3 months.

Our “small but mighty” son endured 2 major tumor resection surgeries, 6 weeks of radiation and 11 months of chemotherapy. He also endured 4 other surgeries, 32 blood transfusions and underwent general anesthesia over 50 times. He spent 76 days in the hospital including his 4^th birthday and the following Christmas and New Year. He acquired tightness in his heel cords as a side-effect from chemo which prevented him from walking for his last 13 months and subsequently, his feet and lower legs were in casts or braces day and night. Keith was fed through an NG tube for the last 17 months. Nausea and vomiting were constant side-effects that affected him daily.

In the face of these insurmountable challenges, Keith endured with patience and grace. He remained selfless and sweet.

When the nurses gave him a sticker for bravery, he asked which sticker was for Cole and which one was for Ally. Eventually, the staff learned to just give him 3 from the beginning because he would pick out one for each of his siblings before he considered picking one out for himself. When someone brought him a toy or prize, the first question out of his mouth was, “What did Cole get?” He wanted to make sure Cole got something too.

He never threw tantrums or acted out or even asked “why” when we told him we had to go to the hospital. He was sad but not angry. As long as he had his blanket and a show to watch, he was content. He never asked why he was so sick or why he couldn’t walk or play like he once could.

Keith had an incredible gift to find joy and happiness doing what he could do, even as his abilities became more and more limited. He LOVED movies and loved to quote movie lines with his family and friends. His favorites were Disney shows, Scooby Doo episodes and Superhero shows. Keith loved to play superheroes, whether he was leaning up against the couch or scooting around with a weapon in hand or even if he was just slicing a sword through the air from his bed.  No matter what time of year, Keith was always thinking of superhero characters that he and the rest of the family could be for Halloween. This year he wanted to be Daredevil.

As much as Keith loved superheroes, his greatest hero was, and still is, his Dad. Keith asked several times each day where dad was or when he would be home. Even at his weakest, Keith perked up whenever Brent was in the room. Keith loves his Dad.

Keith asked everyone he met if they liked rocky road ice cream or Smarties candy. He would usually tell you he liked the green Smarties because green was his favorite color.

Keith spent the last year scooting around our house. He rarely asked to be carried because he wanted to get himself where he needed to go, even if it took him a lot longer to get there. He loved to play hide-and-seek or chase in any capacity, whether he was scooting, or being carried or eventually just in his bed, under his blanket.

Keith’s body was broken and limiting but his spirit is confident, capable and strong. “Keith the Mighty” continues his mission in the next life where he is on the Lord’s errand and continuing to do whatever is asked of him, with a willing heart and mind.

*****

I know the covenants (or promises) Brent and I made in the temple 11 years ago, allow our family the blessing of being together forever in the next life. I know this is only possible because of a loving Heavenly Father’s perfect plan for us and for His willingness to allow his Son, Jesus Christ, to atone for our sins and for all that is dark and wrong in this world.

I’m grateful for a Savior who was willing to suffer as He did for us.

I know in the end, everything will be made right. Everything will be made perfect.

I know our family is forever.

Funeral Service

Keith's funeral service will be held this Friday, September 7 at 11:00 A.M at
The Church of Jesus Christ of Latter Day Saints, 22284 SW Graham's Ferry Road, Tualatin, OR.
There will be a public viewing prior to the service from 9:30 to 10:45.

In lieu of flowers, we suggest donations to Curesearch.org. CureSearch for Children's Cancer is a national non-profit foundation whose mission is to fund and support children's cancer research and provide information and resources to all those affected by children's cancer.

Thank you to everyone who has reached out to us via email, text, regular mail, our blog and other means. We can't express how much we appreciate your love, support and prayers during this difficult time.

Keith Darrell Burnett

November 1st, 2007 - September 2nd, 2012

Our sweet little boy passed away quietly this morning around 2:30am.  He was surrounded in love by his parents and both grandparents.  He never experienced any pain.  He will be dearly missed.  We will post details of his funeral services when we arrange them.  Thank you so much to everyone who has been such a strength and support to us throughout this very difficult journey.