Dear Trevor

Dear Trevor,

It's that day again.  The day of your rebirth,  the day you saw the face of Jesus.  I celebrate this day with you, as the day that all your tears were wiped away, your body made perfect, with no more cancer attacking it.  I celebrate this day with you as the day when all the tubes, needles and medicine went away, and you got to sing and dance and play again.  I celebrate this day with you because I know that I will see you again some day, and when I do I will see the perfect you. 
Yet as much as I celebrate the Promise that Jesus has given us to see you again, there is still a fresh wound in my heart. One that never really heals, just occasionally scabs over a bit. Or else I cover it with a band-aid and pretend it's not there. You'd be 11 ½ years old now. (Do kids still count half birthdays at that age? I have no idea.) What would you be like? What type of Christmas gifts would you want? What hobbies would you be into? You always loved music, but what type would you like? I bet you'd be tall and handsome, but get annoyed at me if I pointed that out. Would you have a girl that you like? And/or girls that like you? I think you would. I wonder what kind of big brother you would be. Would you enjoy playing with Tynan or just tolerate his presence? Or would you be still be mad that we didn't give you a sister, since that's what you always wanted. Sorry, Little Man, but there's no Lou-Lou in this house.

I miss you each and every day, and I think the hole where you should be will always be there. I just can't get used to you being away from me.  I love you, and will never forget you.  Have fun playing with Jesus.



Love Mama

Trevor Story #10

Seven years ago at this time, Brian and I were sitting with some friends in family waiting room outside the PICU.  It was the first time in Trevor's whole illness that they told us we couldn't be in the room, or at least in the hallway.  I really have no concept of time during the process, but somewhere around 1:00am, they came in and told us we could go in for a minute.  To say goodbye.  Walking into the room, there was a mess like I'd never seen before.  Gloves, sheets, and various medical packaging were scattered around the floor.   There were doctors and nurses with disheveled hair and sweat all over them like they had just been to the gym, drinking water and eating granola bars while they tried to chart all the hastily written drug names/doses/amounts that were on the board, on gloves, and on the sheets that Trevor was laying on.  These people had just spent hours in a fight for my baby's life, even though they knew he would be gone within days.  As the doctor explained what all had happened, I remember looking at this kid who no longer really looked like my Trevor: tubes, wires, the thinning hair.   A shell.
They had us go back in the family room, where we waited another hour or so.  They told us he was stable for now.  For now.
We went into another room, talked some more.  We were told that the cancer had attacked his heart this time.  We knew that meant no more chemo.  Then we heard some numbers having to do with his blood count, and that he had 90% blasts.  We knew he was way past the point of return on this.  We asked how much longer it would be if we just kept the same level of care, and he told us days.  We asked how long it would be if we turned the machines off, he told us minutes.  Brian and I looked at each other and knew.  Knew that he had lost his fight.  It was only machines now.  They were doing things to him, and not for him.  It just needed to be all done.

As I sit and remember that scene, like almost every day of those 2 months of fighting, it seems like yesterday.  Yet it's  almost a dream.  Another lifetime ago.  I don't really cry.  There just are no more tears left.  It just is the way it is.

Thinking about the end of his life, also has me thinking about the beginning.  We got pregnant so fast that I didn't even realize what was going on.  We were in the middle of packing up our apartment in Bozeman, Mt to move here to Chandler after we had been temporarily living in Overland Park, KS for the previous 6 months.  (Could you track that?)  I was sick and not sleeping, and I was more then a little out of it.  It was also the time just  after 9/11 and that whole anthrax scare was going on, where people were paranoid to get their own mail.  So in my sleep deprived, stressed out, sick-pregnant state, the thought of being pregnant never even entered my mind.  Nope.  Instead, I was convinced that I probably  had anthrax or some other horrible disease and totally freaked out.  Brian found me around 3 in the morning, laying and crying on the bathroom floor.  Once I told him how I was feeling, the first thing he asked: "Well, are you pregnant?"  I stopped crying and looked at him, likely an incredibly dumb look on my face and said:  "Maybe?"  He told me that we'd get a test in the morning, and that we'd go to the hospital if it came back negative.  He was so convinced of it that we went and got the test and he dropped me off at home and went to work.  Told me to call him later.  Let's just say that test had about the brightest hot pink plus sign that I've ever seen.
A week later we moved to Arizona, where I prayed over the yellow pages as I looked for an OB and then had weeks and months of "morning/noon/night sickness".  If I wasn't getting sick, I felt like it.  The entire time.  Add to that the fact that Brian was out of work for 6 months of the pregnancy, it was really not a fun time.  Then Brian got a job, and I got put on bed-rest for high blood pressure.  After a few weeks of that, 10 days before the actual due date, the doctors were concerned that I would have a stroke, and induced me.  They  told us that inductions usually took some time, probably 12-24 hours from the time they started the IV.  Yeah, that didn't happen.  I'm never normal.  He was born 5 hours later with no time for an epidural and the doctor racing into the room after they had to call her back from dinner.
2 weeks after he was born, I ended up in the ER with horrible gallstones.  Surgery a few weeks later.    Crazy.  Just crazy. 
So there's the beginning of Trevor's little life.  Almost as crazy as the end of it.  And seriously, that's sort of the short version of what happened during those 9 months, because there's more.  So much more.   You can't say that we've had a boring life, that's for sure.  Thankfully, the in-between time was relatively normal.  I guess that was really the last time things were in anyway normal in our lives.

Here is the first picture we ever had of Trevor, and the last picture.   The start and the finish.

Trevor Story #9

I've been sitting here thinking about how others could get to "know" Trevor.  There are so many little things about him that just made him just a cool kid.  So many things running through my head, many of which are just little snippets of who is was.  So I guess here's a few.

He was about 20 months old when I was sitting on the floor of our apartment, really upset and crying about something.  He toddled over to me, patted my shoulder and said "Shhhh, Mama."

He called pine cones "cones", lemonade "neminade" and had a little lisp on some words like "yes" that made it sound sort of like "zesss" 

He was scared of the sound of a hairdryer, but loved the vacuum. 

He loved music.  
 
Speaking of  sounds, we once bought him an electric toothbrush.  It was Cars, which he loved, so I figured he'd love it.  I was very wrong.  He was terrified of it.  Terrified.  We have a video.  He didn't even want to touch it, and when we would try to turn it on, he would loose it.   We were the horrible parents that got out the video camera and turned it on and laughed because he was being so ridiculous.  

He had so much fun at his last Vacation Bible School that he cried when I told him it was over.

The last Saturday before he got sick, he went fishing for the first time with Brian and some friends and caught a little fish.  

Just after his third birthday, he looked up at an airplane and asked me how it got up there.

The last thing he really said was to object to the fact that we were turning off the cartoons he was watching.  I think it was Winnie the Pooh. 

He was afraid of dogs, and would sometimes have nightmares about them.  That's why we got Zoe, because she would be small and he could learn how to be around dogs.  He helped pick her out and helped pick her name as well.  He only got a few months with her, but he sure loved her and was really learning how not to be scared.  

Trevor Story #8

The pacifier.  Ugh, he had that thing forever.  At least at night he did.  I was bound and determined that he would never be that 3 year old that could talk but you couldn't understand him because he had a plug in his mouth.  And he wasn't.  He just slept with it until he was around 3 1/2!   Around 6 months I started only giving it to him with he was fussy needed it, instead of clipping it to his shirt during the day.  Around a year, I pretty much only gave it to  him when he was sick or hurt, and then at night/naps, although I did bring it with me when we went shopping and stuff.  Just in case.  After 18 months, he pretty much only got it for sleep.  By 2 I kept them in a bowl at the top of his closet and he only got it before bed when he asked for it.  Which was every night.  We stayed in that holding pattern for quite awhile.  I barely cared because for the most part, he would fall asleep and then it would fall out of his mouth but he would still stay asleep.  So maybe a half hour a day??    I would often tell him that he was getting pretty big, and  he wasn't going to need it forever.  He tell me that he still needed it.  Then one night, he didn't ask for it.  So we didn't give it to him.  It took him almost 4 hours to fall asleep, but he never did think to ask for it.  We just didn't say anything about it.  The next night, after PJ's/teeth/potty/prayers, he asked for it.  I looked at him and said, "You didn't need it last night, and you still fell asleep.  You don't need it tonight, or any other night."  He looked at me almost shocked, like he hadn't realized.  Then he was a little sad.  He looked down and said, "Just one little bit?"  Like he needed one last hit of it or something.  He did just fine and that was pretty much the end of the pacifiers.  There were a few times, however, that he would randomly find one that we hadn't gotten rid of and I would catch him hiding somewhere with it in his mouth.   One time, he was behind his door, covering his face with his hands to try to hide it from me.  :)  Little stinker.

Trevor Story #7

 Much better day today then yesterday.  In fact, I had a very good and productive day.  Felt very good. 


We lived in a little apartment when Trevor was born, and lived there until a few months before he turned 2 when we bought our first house.  He was excited about looking around the rooms in the new house and running around in the yard, but  I'm sure he didn't fully understand what was going on.  He watched as we packed up the boxes, and loaded them into the truck, and then unloaded things into the new place.  We had stayed in the new place for a couple nights, but had to go back to the apartment to finish cleaning and getting a few things.   When we got to the apartment complex, he started getting excited and he climbed up the stairs as fast as his little legs could take him.  He went running into the empty apartment and looked around with a smile on his face.  Until he saw that it was empty.  His little face just fell, and then he sat down and cried.  :(

Trevor Stories 5 & 6

So, as you noticed, I didn't post yesterday.  I basically spent  the day teetering somewhere between complete apathy and sadness & anger at myself.  Why anger and sadness?  Because I realized how difficult it's becoming for me to remember stories to share.  Even just 10.  My little boy was here with me for 4  1/2 years, and I needed to look at some albums and memory books to jog my mind.   So many days/weeks/months, just lost.  Pathetic.  I can no longer hear his voice in my head or remember what he smelled like.  It's harder to bring a picture to my mind that's not some real picture in an album from the time before the hospital.  Dumb hospital stuff.   Hospital stuff is crazily vivid, although it is more a slow motion haze of sights/smells/sounds and of mostly faceless people.  Even Trevor.  And monitors.  Stupid monitors.  So I spent much of the day trying to will myself to remember without cheating and looking at books or pictures.   A few things came back, but I hate that I have to try so hard.
Despite all of that, I was able to force myself to go to work this morning, but boy did I have to talk  myself into it.  All I wanted to do was crawl into bed and not get out until next week.  Even a month ago, I don't think I would have been able to go.  I guess that's the head-meds working.  I still don't feel like doing almost everything, but I'm more and more able to still do it.   Like today, it turned out to be good.  Staying busy.  Being around laughter.  Even laughing some myself. 

So here goes, Trevor stories #5 and #6. 

#5  Trevor was overall a pretty good kid, but of course he had his fair share of time-outs.  However, there were 2 times where I came into a room only to find out that he had put himself in time-out before I even found out what he'd done.  (There was also one time where I forgot him in time-out, so he sat there for about 25 minutes instead of the 5!   Felt so bad.)
The first time was not so funny or cute, except for the fact that he put himself in the corner after unsuccessfully trying to hide what he'd done.  I'd gotten out of the shower only to discover that my glasses were not where I had put them.  Went out into the living room to find Trevor sitting in time-out, and all he did was point at a pillow that was sitting on the floor.  Under the pillow was my glasses.  Completely mangled and broken.   I never did find out exactly what happened, although the looked like they'd been sat on.  All he said was, "They broke."
The second time was one of those moments where your kid looks so pathetic, that you have a hard time keeping a straight face.  Trevor loved grape juice, and pretty much always had a sippy cup of grape juice around.  One day he asked me to get him some more juice just as the phone was ringing.  I told him I would as soon as I got off the phone.  I don't remember who I was talking to, or how long I was on the phone, but it was obviously more then just a few minutes and I must have been either in my room or the office.  When I came out, he was sitting in the time-out spot with a worried look on his face.  I didn't say anything, but must have given him a strange look.  All he did was point over to the kitchen where I then saw a pile of towels and washcloths in the middle of a giant puddle of grape juice.  It was everywhere!  He had gotten impatient and tried to pour himself some, which didn't go over to well because he spilled the entire gallon of grape juice all over the floor.  I can only imagine the look I gave him, because when I looked back over at him, he looked down and said, "Sorry.  I missed."

#6   
Trevor got to be in 2 weddings, both for family.  He was just a few weeks shy of 2 when Brian's brother, Kevin got married.  He looked pretty cute in his little suit, and all he had to do was walk up the aisle to Brian, and then I was going to grab him and take him to go play because we didn't expect him to be able to stay still and quiet during the ceremony.  The thing we didn't plan on?  That he wouldn't be all the way up front when the bride started to enter and everyone stood, blocking his view of Brian.  He was only about 3 pews back from the front, but when he couldn't see his daddy, he froze, looked around at all the people and burst into tears.  Of course, everyone thought it was cute and Brian was able to come up and get him so I could take him to go play.  His poor little heart was pounding and he told me he'd lost daddy.
The other wedding that he was part of was for my sister, Stephanie.  It was just a few months before he got sick, so he was the "big boy" that was supposed to help the little flower girl go up the aisle.  He was proud of himself, and did very well.  At the reception afterwards, we tried to get him to dance with the flower girl, but there was no way he was going to!  All we got was him standing on the side, hold her hand. You can see that everyone was trying to get a picture of them, but nope, he was not going to do it. 

Trevor Story #4

Trevor was a pickle monster.  I gave him one to suck on when he was around a year old, just as a joke, to see the funny face that he'd make, and was shocked to find out that he like it.  I don't think we really knew how much he loved them until he was 18 months old and we were at my parents place in Montana for Christmas.  We had finished Christmas dinner, and were sitting around in the living room, talking.  We realized that he wasn't in the room with us.  I called his name, and heard a giggle coming from the kitchen.  Walked in there, and he was sitting on the floor with a sandwich baggie of pickles, shoving them into his mouth.  He must have seen someone put them away, because he managed to get the fridge door open, open up the drawer, and pull out the baggie.  He had eaten almost the whole bag by the time we caught him. 
Another pickle story would be while hiking in Glacier park with Brian's parents.  We hiked in a little ways, and stopped to eat lunch.  We had fruit, sandwiches, chips and pickles with us.  Grandpa Doug reached down to grab a pickle out of the bag, only to find an empty bag.  Grandpa said, "I didn't get a pickle, where's my pickle."  To which Trevor replied with a full mouth and matter-of-fact tone, "In my mouth, Grandpa!"  Doug stood there with this shocked look on his face since all the pickles had disappeared in about a minute. 
After he had been tube fed for so many weeks, and the chemo had changed his tastes so much, we really had a hard time getting him to eat anything but he still wanted pickles. 

Trevor Story #3

Oh a much lighter note then yesterday, the famous Peanut Butter story.  Most people who I've known awhile have heard this story, but here it goes.  I believe Trevor was almost 4 at the time, and he was watching a show while, I was doing some laundry or something in the other room.  I came back into the room, glanced at the tv, and realized that I couldn't really see the screen.  There were colors and sounds, but it was all blurry.  I got closer and closer to the screen, only to realize that it was PEANUT BUTTER, smeared on the tv.  I turned around to see Trevor quietly walking into the kitchen with the big Costco sized peanut butter jar, he also had peanut butter smeared all over one hand/arm.  I asked him what in the world he thought he was doing.  He shrugged his shoulders and just said, "Finger paintin, Mama."  He said it with such a relaxed attitude, like finger painting with peanut butter is just a normal occurrence. 

Trevor Story #2

Even with how horrible being in the hospital was, there are a few good memories that just show what a sweet kid Trevor was.  He had only been in the hospital for 2 days when things started getting pretty bad.  Oxygen levels and breathing were going downhill because of the leukemic cells just attacking his lungs, and after one of his lungs started to collapse and fill with fluids, the doctors had to put him on a ventilator.  They told us they would sedate him first, and to say goodbye and leave the room so we didn't have to watch him being tubed.  We were pretty much in a state of shock, but I told him we'd be right back and that we loved him.  As I walked out of the room, between gasps of air he told us that he loved us too, with a big smile on his blue lips.  That was the last time we heard him talk or saw him awake for a month.  
 After that month was over, and he'd miraculously gotten quite a bit better he made 2 of the nurses cry.  Of course, the fact that they cried is not really the point, the point is that his sweet, sweet spirit was such a part of him, that even after all he'd through, he was still him.  After all that time on ventilators, chemo, port placement, bone taps, tubes, wires, pokes and prods, he was still Trevor.
One day while I was coming back to his room after getting lunch, the nurse at the desk told me that there were a couple of nurses in his room trying to get one of his lines flushed so they wouldn't have to re-do the iv, I hurried into there just as the 2 nurses were coming out, both a little teary.  One saw me, started crying more and threw her arms around me saying, "Your boy is so sweet!"  They had been unable to get the line flushed out, so they had to remove it and start new iv in another location.  One gal held his hand, while the other went to put in the line, and they asked him to try to stay as still as he could.  He flinched and whined for a second, started to pull his arm away but stopped himself.  After it was over, he had told the nurse he was sorry that he moved while she was jabbing a needle in his arm, and that he'd try better next time.  She said that had never happened to her, and it totally threw her off.  She said that made her feel worse then when the kids just cry. 
The 2 weeks he spent at home with us, we had to take him to the clinic just about every other day to get checked, and often stay for some blood or platelets or something like that.  During one of those times, Trevor was watching some cartoons, and I was reading or something, and a nurse came rushing into the room with an adult wheelchair and a big grin on her face.  She told me they had visitors down on the floor that she didn't want us to miss so I sat in the wheelchair with Trevor on my lap, and holding the iv stand.  She pushed us down the hall, into the elevator and down onto the kids HEMOC floor.  We got there just in time to see the Suns Gorilla and a bunch of the Suns players come walking in the door.  Trevor was excited about the gorilla mascot running and jumping around, and didn't care at all when Steve Nash came over to talk to us, and give Trevor some presents.  Trevor told him thank you, but never really looked at him at all.  Later, when Brian came to pick us up from the clinic, he got all excited to tell his daddy that he got to meet the funny gorilla guy, and that "some guy" had given him some presents. 

Trevor Story #1

Trevor was obsessed with Blue's Clues for almost 2 years.  OBSESSED.  He would grab anything that looked like a notebook and pretend to write clues down.  When we got him a "real" Handy Dandy Notebook, and a blow up Thinking Chair, I thought his head would explode.  He would pull that chair up in front of the tv and you really could not interrupt him during the show.  We didn't quite realize how Blue had taken over his life until we were driving around one Saturday, and Trevor started screaming A CLUE, A CLUE! and tried to undo his carseat.  We finally realized that he had seen a sign for a veterinary clinic that had a paw print on it. 
He also had a Blue's Clues shirt, that very quickly became his favorite shirt.  He wanted to wear it all day and all night.  I once put it in my hamper, then an hour later found him sitting in the hamper, trying unsuccessfully to put the shirt on.  He grinned and told me that he wasn't too dirty to wear.  I told him that not only was it too dirty to wear, but he had put it on upside down.  I then put it in the washing machine and had to endure "Clean yet?" every 3-5 minutes throughout the entire washer and dryer cycle. 
While there are other Blue's Clues stories, my favorite one was after my brother graduated high school, and Trevor heard us talking about how he would be going off to college soon.  Each time we talked about it, he would look sad and leave the room.  One afternoon, I asked Trevor if he wanted to color Alex a picture that he could hang in his dorm room.  When he asked what a dorm was, I told him that was where you live at college.  He burst into tears, crying uncontrollably for a long time and I couldn't understand a word he was saying.  Finally got him calmed and he told me, "I don't want Uncle Alex to go to college, I will miss him too much."  When I told him that we'd still see him a few times a year, and we could call him all we wanted, he told me "No!  Steve went to college, and we never saw him again!"  So if you remember your Blue's Clues history, Steve was the guy in the cartoon Blue's Clues world, and when he wanted off the show, they introduced his brother Joe to everyone and said he would take care of Blue while Steve was at college.  There was maybe 2 transition episodes, then Steve was gone and never seen or even talked about.  So, to a 3 year old, that meant you went to college and never came back.  He was very relieved when I explained that we would still see Alex sometimes, and we would call him often. 

Bah humbug

This time of year is usually hard as we get closer to the anniversary of Trevor's death, although it was getting a little better, so I thought.  I sometimes wonder if there's times that I am lying to myself.  Wanting to be ok, and show others that I'm ok, so I just pretend so well that I believe it myself.  This year, I'm telling the truth:  I pretty much hate Christmas time.   It is not the most wonderful time of the year, I don't want to have a holly, jolly Christmas, and I wish that stupid Elf on the Shelf would just die.   And seeing Christmas decorations pretty much is like a kick in the gut.  There.  I said it. 
Of course, admitting all that makes me feel guilty, because while I hate all the nonsense that the holiday has become, I feel like I'm missing out on the fun.  And as we've been reminding Tynan, Christmas is Jesus' birthday, so we should celebrate it.  To try to embrace it a bit, I've read through some Christmas devotionals, and listening to some Christmas music.  As for the other stuff, I'm really just going through the motions.  We decorated the outside of the house a bit, and Ty had a great time with it, so that's what matters.  He wants to put his and Trevors trees up inside the house, but I'm not quite ready for that.  Not yet.  I will see how long I can put him off.  To get to that point, I guess I need to get rid of a little bah humbug, and try to find some joy to the world.  
Part of the way I want to do that, is to share some stories about Trevor each day, for the next 10 days, in separate posts.  Some good, some not.  Some that many of you have heard, and hopefully some that you have not.   If anyone has any that they want to share, let me know.  We're coming up on 7 years without him, and some things have grown faint.  I need to remember him.