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.

Losing the War

Today we learned that despite the many battles that Keith has won over the last year and a half, our sweet little boy will ultimately lose his war with cancer. The news is crushing. We continue to believe in and hope for a miracle in his final hour, while simultaneously praying for the strength and understanding to accept the will of God, even if it’s not our own.

About a week and a half ago, Keith began having some problems with his right eye.  Darc and I noticed that the pupil was slightly dilated and unresponsive to light.  We also noticed that the range of motion in his eye appeared to be limited and that his eyelid was starting to droop a little.  We knew that all of these eye functions were controlled by the same cranial nerve and we were nervous about what it meant.  We hoped that it was related to his recent change in anti-seizure medicines, but after his Neurologist told us that a change in medicines was unlikely to have this effect, we called his Oncologist.  His Oncologist instructed us to take him to the ER, which we did, on Monday, August 13^th.   In the ER, they did a Quick Brain MRI, which is designed to show any emergency issues in the brain (hemorrhage, fluid buildup, aneurysm, etc.).  The Quick Brain MRI didn’t show any emergency issues and even though it’s not intended to show tissue or other detail of the brain, there were some things they were seeing on it that had them concerned.  They let us go home from the ER on Monday night, but scheduled an immediate, full MRI of the brain and spine on Wednesday, August 15^th.

We got the results back on Thursday, August 16^th.  Though we’re not trained in reading the Radiologist reports, we’ve read enough to know that this one was really bad.  The cancer was diffuse throughout his brain and spine.  The term they use to describe it is leptomeningeal carcinomatosis, which basically means that the cancer has formed a sheet over the coverings of his brain and spine.  It’s a significantly worse outcome than if he just had a single, recurrent solid tumor mass.  In addition to the diffuse covering, he now had significant masses that were compressing various points along his spinal cord.  We were devastated.

We were in frequent communication with his Oncologists at Doernbecher and they scheduled an appointment for us to come in on Wednesday, August 22.  His primary oncologist was out of town until then and they wanted a couple of days to come to a consensus on what, if any, treatment to consider for him.  We had plans to go to Yakima to see the Grandparents this week, so we left Friday and came up.

Up until this last weekend, besides his poor eye and the near-daily vomiting, Keith was otherwise doing really well.  He was still active, happy and playful, scooting around all over the house, playing “pigs and wolves” and talking about Scooby Doo. 

Things changed very quickly for him over the weekend.  Starting on Saturday, he became much less talkative and more lethargic.  He became physically limited, almost overnight, unable to scoot around on the floor or sit up unassisted.  Both of his eyes now have a pronounced droop.  Neurologically, he would stop talking altogether, at times, and was increasingly unresponsive and disconnected when he was awake.  He experienced more seizures.  We could not believe how quickly he was deteriorating before our eyes. Fortunately, despite his condition, he does not seem to be in any kind of physical pain, which we are very grateful for.

We met with his Oncologist, Dr. Nazemi, this morning at Doernbecher. After looking at his MRI scans in detail with her team and with the Neurosurgeon, she confirmed our fear that there is really nothing more to do for him at this point besides keep him comfortable and happy.  After reading the report last Thursday and seeing his rapid decline since then, we suspected that would be the case.  The cancer is widespread and aggressive.  Her team was very surprised by how quickly it had reached its current state, especially given the encouraging test results we received in July. 

Though impossible to predict, she suspected that Keith’s time on earth is limited to just a few more weeks.  We have never felt the kind of shock, disbelief, and crushing grief that we’ve experienced over the last week.  The thought of a life without him seems simply unbearable.

Up until now, we have been constantly reassuring Cole that his brother was going to get better.  Cole prays every day to “please bless Keith, that he can get better so that he can run and play with me again.”  After this report though, we sat down with Cole and tried to explain to him that Keith probably isn’t going to get better and that at some point he may fall asleep and not wake up and will then go to live with Jesus.  Cole is a very astute little kid and we didn’t want him confused about why Mom and Dad and others are so sad about Keith.  He didn’t ask a lot of questions right now, but we wanted him to know that we would answer anything he wanted to know at any time.  Thankfully, he has not seemed to internalize it yet and remains his happy and playful self.  He and Ally have been so therapeutic to us through all of this. 

Darc and I came back to Portland on Tuesday night in preparation for his appointment on Wednesday morning. We left Cole and Ally with the Grandparents.  Being back at our home, in a familiar environment, seemed to perk Keith up a little bit.  He was more talkative and much more himself and we relished in having his sweet personality all to ourselves for an evening at home, undistracted by anything else.  After his appointment this morning, we came back to Yakima and he’s continued to have a pretty good day, especially relative to Monday and Tuesday.  He’s been more talkative, alert, and awake today.  Even though he can’t move himself, he’s wanted Darc to carry him around and play “pigs and wolves” while Aunt Darel chases them.  It’s been wonderful to see him having a little fun. 

When he is awake and feels like talking, he has been so affectionate to Darc and me over the last week.  Movement for him is a struggle, but he’ll say, “Hey Dad…I want to give you a kiss.”  Then he’ll reach out and grab my face and pull me into him to give me the sweetest kiss on the cheek.  In his weak, but angelic voice, he’ll say, “Hey Mom…I love you” over and over again.  He seems to have a very special gift in knowing when you need him the most.  Even in his weakest state, he continues to uplift, inspire and reassure us and we will savor every remaining second we have left with him in this life.

Despite our sadness, we continue to feel the tangible love of a perfect God.  Our faith in Him is not dependent on outcomes.  Up until now, we have focused on having the faith necessary to see Keith healed from his disease.  But, we are learning that faith also means having the faith necessary to be accepting of a will that is so different from our own.