Frozen

Or at least I want to be.

I realize I'm trying to freeze time for myself. I'm helping my surviving children to move forward by supporting their endeavors at school and encouraging Teen the Elder as he applies to colleges and completes the testing the schools require (770 on his Literature and Math 2 SAT subjects tests, and 800 on his Physics SAT subjects test-it's my blog. I can brag if I want to). John has made progress with setting up his home office with my assistance. But me, I'm frozen, content to sit on the couch all day.

I think I figured out why I don't feel ready to go back to work. I mean besides the crying off and on all day long. Besides the lack of focus and lack of sleep. Besides the angry outbursts. I don't want to go anywhere or do anything. I go for walks. I take care of my family-plan meals for the week, shop, cook, do laundry. But none of that's my life really. 

You see if I go back to work then I'd be moving on with my life, and if I move on with my life then the space between me and Sam will grow. Right now I don't feel too different from the way I felt in the moments after Sam died. And if I stay on the couch and do nothing more mentally taxing than attempt for bazillionth time to beat level 147 on Candy Crush (curse you, Candy Crush!), then it's as if time hasn't passed.

But time is passing. 11 days after Sam's death we experienced our first Halloween without him. In November we observed John's birthday, Chanukah, and Thanksgiving despite the hole in our family. We've marked one month since he died, then two. We went on our first road trip without him, and ate out for the first time ("Table for 5, please...I mean 4."). In December we went to the movies as a family of 4, and talked about the last time we had been there with Sam. 

At the start of each month I've woken up thinking of Sam and how this is a month he will never see. This is a month in which we will be entirely without him.

2013 is coming to an end. Sam was here for 2013. We sipped sparkling apple cider at midnight New Foundland time, and hoped 2013 would bring the shrinking or at least stabilization of his tumor. We didn't get what we wanted. One could argue that 2013 has been the absolute, hands-down, worst year of my life. But I don't want it to end.

With the end of 2013 comes the start of a year Sam will never see; the continuation of a year of firsts we do not celebrate. 2014 propels me into a future without Sam. 2014 pulls me further away from him, but no closer to anything else I can see.

That's it. There will be no wise conclusion to this post. Don't expect a, "Happy New Year!" from me. I am frozen.

Sleep

People keep asking me if I am sleeping. I lie and tell them I am. Well, it's not really lying. I do sleep. Maybe not enough. 

Every night I lie in bed and read until I nod off. My book (or Sam's kindle, or iPad) will fall onto my chest, and startle me into the realization that I am no longer reading but I am, in fact, sleeping. So I set the book (or device) aside, and burrow down under the covers next to my husband, and wait. Pretty much every night without fail my brain springs back to life, and the broken record of Sam's last hours, minutes, and moments begins. 

I tell myself I don't have to do this. I tell myself it's ok not to think about Sam in order to sleep. It doesn't work.

I search for a memory of the day that's pleasant-like today's paddle board outing-and try to remember every detail, in order, in hopes of distracting myself to sleep. It doesn't work.

Emptying my mind does not help-that just leaves space for the memory of his labored breathing to take hold.

Filling my mind with thoughts of the glassy water of the bay and the seals like long-whiskered dogs in the water doesn't do the trick either. I can't stay focused long enough on any one thing to fall asleep. Within seconds the memory of his eyes opening for the first time in hours just before his last breath sneaks in.

Suddenly I am filled with guilt that in those last hours when his breathing was labored and no amount of morphine would smooth it out, why didn't I just pick him up and hold him? The evening before we had found the perfect position for his comfort, which was reclined against the arm of the couch, and it seemed that every time I moved him in the slightest-to give medicine or ease breathing-I just made things worse. Nothing worked. I guess that's my answer. I didn't pick him up because I was afraid I would make him uncomfortable. So I settled for sitting next to him and holding his hand and talking to him.

Nothing worked. And there is so much guilt associated with my inability to make his death peaceful.

Just as in the treatment of his cancer-Nothing worked. And even though it makes no sense, there is also so much guilt around our inability to save him.

So, to answer the question about sleeping honestly, "Not very well." Nothing works.

How to help the newly bereaved

The death of Superman Sam has had me thinking. Although my own Sam has only been gone 56 days, or maybe because he's only been gone 56 days, I feel like I can offer some advice to those that love and want to support the Sommer family.

I don't have advice on what to say. I haven't figured that out yet. I do know that it does not help to talk about G-d's plan, heaven, angels, being in a better place, etc. There is nothing you can say that will make them feel better. There is nothing you can say that will make them feel better. Just be with them. Hold hands. Tell them you love them. Say his name.

Here you go-thoughts on paper (or a screen. Whatever):

Do not ask, "Is there anything I can do?" "Is there anything you need?" The bereaved parent will likely answer, "No." Unless you can bring the dead back to life or build a time machine, these open-ended questions are not helpful.

Just offer to do something. Guess at what they might need and offer to do it. Don't say, "Can I...?" Or "When would be a good time for me to...?" A better approach would be to say, " I would like to...(insert helpful thing here). Is...(insert day/time here)a good time?" 

Here's a list of things every family might need at one time or another, depending on where they live or the time of year:

Laundry

Shovel snow 

Mow lawn

Clean bathroom

Feed and care for pets

Drive kids to activities

Buy groceries

Vacuum

Take out trash
Return library books

So you might say, "Phyllis, I would like to come over and do your laundry. Is tomorrow at 10am a good time?" Now she might say, "No thanks," because maybe her mom is there and handling that aspect of running the house. At this point I would suggest that you either offer to do something else right away or that you let her know that you'll check in with her in a few days to make the same offer. 

Here's another way to approach helping-When Sam was on hospice (almost 5 months), I had a few friends who with regularity would text me when they were out shopping. "Hi! I'm at Costco (Trader Joe's, Whole Foods, Albertson's). Do you need anything?" This is a great way to offer help. I would be reluctant to hand someone my whole list, but if we're out of toilet paper or bread or eggs, I can accept this small gesture.

Offer to visit when visitors might be thinning, like after Shiva. Don't say, "Call me when you're ready for a visit." You call or text and offer. And if they say no, call next week, and the week after, and the week after. And if you call and they don't answer, leave a message. I could not talk to people in the early days, but I did listen to messages. Texting is easier.

If you are far away and can't be there to help, donate to their St. Baldrick's campaign, or the MACC Fund. Send a card, especially after a few weeks when they stop coming. Use his name-"Sam had the best laugh." It will be appreciated. I promise.

You know Michael and Phyllis, and so I'm betting you know what they need. Trust your gut.

Small plans and lowered expectations

I've been sitting in this spot on the couch since 7am. It's almost 10:30am. It's Sunday, so if you're lucky enough to have a day off and have no plans, which occasionally happens to most of us, you could get away with this. This doing nothing.

Thing is, I did the same thing yesterday. Yesterday I folded half of the clothes in a laundry basket that's been sitting here since Friday night. I'm still in pjs. I haven't brushed my teeth. I do have plans. They're not big. I keep them small on purpose-being gentle with myself: Finish folding the laundry, get dressed (no shower), brush my teeth, read a book, go for a walk, do some yoga, bake granola bars (a pre-cancer Sunday ritual I'm trying to bring back), cook dinner (what's the point, without my Sam?).

I've become fairly comfortable with these small, daily goals. I feel downright accomplished when I complete the small tasks I set out for myself. It's a good day if everyone has food to eat, clothes to wear and teens get to school and get back home again.

On Friday I learned that the committee at my place of employment denied my request for another month of catastrophic leave. Back in July or August my advocates with HR and the school board felt there would be no problem with me sitting out this entire school year on catastrophic leave. Sam's terminal illness and death are a catastrophe. He is dead and I have lost my bearings and my remaining children and my husband are also spinning, helplessly. It seemed reasonable that I take this year to try and piece us back together in some semblance of family-this new, fractured unit of four. 

Officially my leave ended on Tuesday. So in the vision of this committee I should've gone to work this week. Right now, if I were working tomorrow, I would be in my classroom prepping for the week. Instead I am on the couch. According to the committee I am ready to take responsibility for the education of 30 young people. Per the committee I am ready to drop the teens at school, manage a classroom of 30 Sam's for 6 hours, work until 5 or 6 planning the next day, and come home to what? Last week one of the teens cried every day after school over the stress of grieving, keeping up, and catching up. Last week one of the teens left the house in a fit of grieving anger and I drove around the neighborhood looking for that one to offer comfort and a ride home. When I think about returning to work I mostly think of the cost to the teens and John. I haven't even begun to think about how I am yet. How will I be around children Sam's age? Will I be constantly distracted with thoughts like-"He should be here."? Will I be irritable? Cranky? Unfocused? I can't concentrate long enough to read a book or fold a load of laundry. What kind of teacher will I be?

I think I'd be a pretty crappy teacher if I went back to work right now. I think I wouldn't want my kid in my class. HR is on my side. So is the board. They want to offer me administrative leave. It's the best they can do. It means I have to prove my unfitness for work right now (prove that 56 days after Sam's death I am still grieving too hard to work?) It also means that the sub in my room will be paid out of my salary. These are rather large inconveniences that I (and my family) are prepared to accept if they allow me to stay home to continue this imperfect reassembling of my family.

And just in case anyone is still actually with me and reading, sweet Superman Sam died yesterday. He was 8. Here's a link to his mom's blog. http://supermansamuel.blogspot.com/2013/12/what-im-missing.html?m=1

Unfathomable

From John, because I have no words...

After May 29, 2013 I struggled with a question off-and-on, the answer to which I’m pretty sure I knew, and probably because I didn’t like the answer, I continued struggling with the question.  The question was:  What’s worse, having a child whom you know is going to die and having to deal with all the horror that itself presents; or, actually having him die?

At the time, the feeling of being “buried alive” while we struggled to make the most of each day we had with Sam seemed to be the most difficult.  How can you “enjoy” life with such a dark cloud hanging over your head?  But, of course, we did.  We had many absolutely wonderful times with Sam after we were told he was going to die.  But at the end of each day (and many times throughout the day) we had to inwardly confront the reality that our little boy was dying.  So each day was a struggle, a mental and emotional obstacle course that exhausted us and left us terribly conflicted and, well, just so sad. 

But then, on October 20, 2013, he died.  He actually died.  It is, even now, incredibly hard to fathom.  It still just doesn’t seem possible.  How could it possibly be that our incredibly sweet, oh-so-huggable and kissable, bright, shining, inquisitive and inspiring darling little baby boy—is dead? He isn’t coming back.  We will not see him sitting in his chair, or lying on the couch anymore; we won’t get to wake up next to him in the morning; we won’t get to kiss him goodnight and say “nighty, night; you have sweet dreams; I love you very much; and I’ll be seeing you in the morning”, as we did every night before he went to sleep.  Unfathomable. 

And right there is the answer to the question:  What’s worse, living with a child you know is going to die, or actually having him die?  It’s the dying part.  Believe me…it’s the dying part that is worse.  And now, 49 days later, it’s only now that I am finally beginning to remember the “old Sam”.  The vivacious Sam.  The healthy Sam. 

I had a dream the other night about Sam.  He and I were playing—what else—Cow!  It was awesome.  There we were just like old times in our imaginary wonderland.  In the dream Sam was healthy and happy and perfect, and was speaking like the Sam we all know, with inflection and character and imagination.  And then he laughed!  Oh, that laugh!  That visceral, infectious laugh.  His whole body would laugh.  His whole being would laugh.  It came right from his soul.  That smile and that laugh just seem to embody for me the whole totality of knowing Sam, in all his wonder. 

It was an incredible gift to have known Sam.  Even though he was my son (of course you would expect me to say good things) he was just so engaging and interesting and fun…I just adored him.  And though I can’t have him here with me, to play with and laugh with, and just be a father to, I finally have him back in my memories and in my dreams.  And as much as it hurts, I think it’s the first step towards some healing.  This wound will never go away—it’s just way too big and there will always be some scar tissue—but it’s getting a little easier to breathe and walk and talk again.  

It's kind of like a multi-car pile-up.

These milestones are so painful. And to have them piled up against each other, like cars on Highway 99 in Tule fog, is unbearable.

It started with the one-month anniversary of Sam's death on November 20th, quickly followed by John's birthday on the 22nd. Then we had the weekend to breathe before we took our first roadtrip without Little Guy on Monday so the man-child could see Stanford. Two days later Thanksgiving piggy backed on Chanukah.

I had all day Tuesday and Wednesday to decorate for Chanukah, so naturally I got started around 3 o'clock on Wednesday afternoon, racing the sun to get things set up. When it came down to candle-lighting on that first night, the teens were on board with celebrating. If they want to observe Chanukah, then I will too, I decided. I enjoyed their enjoyment. I had purchased a couple of presents for them on a shopping trip a few weeks ago, so I'm not a total slacker. Watching them open presents, and light their menorahs (Abby has taken it upon herself to be the lighter of Sam's menorah) gives me pleasure.



I like the brevity of Chanukah. Yes, I know it's 8 nights, but I mean I like that each night the time dedicated to celebration can be kept quite short. All you need to do is light candles, say prayers, give gifts, and while the candles burn (they are thankfully almost as small as birthday candles, so it takes about 20 minutes)-do no work. We don't need a big family dinner every night surrounding the candle-lighting, and the whole day does not revolve around Chanukah. So right now, when all I can think of is, "Sam should be here." "Sam should be lighting his menorah." "What would Sam have asked for Chanukah this year?" At least the torture is short.

So what are the Holidays like for the bereaved? I can only tell you how it is for me. There's a lot (can I say shit-ton?) of anticipation. The days before John's birthday, Chanukah, and Thanksgiving have been almost sadder than the actual days. I cry a lot. It gets to the point where my head hurts. I think about what was, what should've been, what might've been, and what is. I feel better when I'm walking, but strangely enough yoga brings more tears. I don't feel like doing anything, but I distract myself with mundane household tasks to get a break from the grief. I spend far too much time on Facebook, Twitter, and email, promoting the cause-sharing events, asking for donations, inviting people to "like" a page in hopes more eyes will see it (increase awareness=raise money=research=FIND A CURE).

People are starting to ask, "What are your plans for going back to work?" What? This IS my work right now. I have to make sure Ben and Abby are OK. My straight A students are each failing one class, and getting C's and D's in others. They need me. They need me in the middle of the day still. I get texts that say, "Mommy, I can't find a place to get away from all the people." I will not be unavailable to them. The Cause is my work as well. All this Sharing, Inviting, and Tweeting needs to be backed up with organized events and fundraisers for people to Share, Invite, and Tweet about. I can no longer stand by and let my friends do all of the work. It's time to get cracking.

So I've got a couple of job-things to do right now. I'm going to share three things with you that you can help out with by Sharing, Tweeting, and Blogging about-and if you can afford to-donate. Here we go:

1. There's an online raffle for my Central Coast friends. If you aren't a local, you can still share and donate.You can get there through Facebook: https://www.facebook.com/events/596076500441784/  or http://www.alexslemonade.org/mypage/117006 . You buy raffle tickets by selecting "Donate," and noting "raffle" in the comments. Event ends December 18th. All money raised goes to Alex's Lemonade Stand Foundation. 




2. Through December 31st, my friend, Sheri Murphy, is selling bags and accessories through Mixed Bag Designs. Sheri will not make any money off of these sales, all proceeds are going to Alex's Lemonade Stand Foundation. 



3. Finally, and this is so exciting, Chris Beland will be contributing to a compilation CD being made by The Ronan Thompson Foundation to benefit childhood cancer research and support. The CD is called Rock for Ronan, and you can get in on this by donating now, here. And if you haven't already "Liked" Chris on Facebook, please take care of that.

That is all. Now get back to work. 

Firsts or Chance

I'm sure this is obvious to most of you, but aside from this period of our lives being unbearably sad at times, I am struck by the number of firsts we are racking up. Each one feels like an elephant on my chest. It seems like it's too soon that life goes on, but it has.

There was the first time eating out that I wrote about, which only happened a week after Sam died. Since then there have been many firsts that were expected and dreaded, and many I hadn't considered.

My car buddy

For example, I knew that my children would return to school and that John would return to work, but I didn't anticipate how the silence of the car after I dropped off the teens would feel. The teens and Sam always
shared their good-byes, and then Sam and I would chatter on the way to his school/my work, or later I would just chatter to Sam as we headed home because he was no longer in school/I was no longer working. I found myself just losing it-crying all the way home because he is no longer in the back seat.

Goober

After a few days of that, the dog did something strange. He's never been a go-for-a-ride kind of mutt. In fact, the first few times he rode in the car after we adopted him I had to pick him up and put him in. If you've ever met Chance, I know you're pretty impressed with me right now-he's a big boy. So Chance only went for car rides when he absolutely had to-to go to the vet, to get his nails trimmed. When we'd had him about a month we began to do some fun outings (dog park, beach, hiking trails) so that he would get the idea that the car didn't always mean torture was coming (in the form of the slick floors of the veterinary office or grooming salon, but that's another of his many quirks and so another post). But still, when I would leave the house he didn't stand and beg and look at me with those eyes and ask to go.

Around the 4th or so morning back to school, as the teens and I were leaving, Chance got up from his doggie bed to stand in the living room and watch us leave. He cocked his head to the side, and gave me the puppy-dog eyes (you know the look), and whined. So I said, "Oh, OK, boy. You want to go to school?" He left the living room rug so fast it curled up beneath his feet as he raced across it to the front door. He trotted down the sidewalk with us, leapt gracefully into the hatchback, and sat. I'm not alone anymore. Whoever sits in the back seat gets drooled on and snuffled (that's what I call it when a dog puts its wet nose on you) in the ear. The teens have someone (something?) to say good bye to. And I have a listener for my chatter all the way home. He's not Sam. I still wish it was Sam who is back there. Sam is irreplaceable. But Chance is comforting. I'll take what I can get.

Ok. So that turned into a post about Chance the Empathy Dog, instead of a post about firsts. That tells me that Chance has done his job well.

Scarlett

We adopted him this past March. You would think that a family in the midst of dealing with their youngest child's cancer treatment would not want to take on one more responsibility. We wanted him because we missed having a dog. The Best Dog in the World, AKA Scarlett, died in June 2010, and it wasn't until about 2 years later that we were ready to take a chance on another dog. I knew our next dog would always be compared to her. She was beautiful, gentle, and smart. She was a tough act to follow. In the Spring of this year we decided that not only were we ready, but that we needed a dog. We needed a little levity, and something positive to pull our focus from our fears about Sam's future.

We keep a list

Chance is a pretty good mutt. He's handsome, he's gentle...that's all I've got. I can't call him smart. He's eaten too many non-food items to wear that label. He digs. He won't walk on wood/tile/linoleum floors. He nudges my forearm with his nose in order to solicit pats regardless of what I'm holding in my hand (nothing, a full and open water bottle, hot coffee). He barks incessantly at visitors and sniffs their crotches. When we walk he must turn and attempt to sniff every butt-human and canine-that passes. OK, not all the canines. He's frightened of many of them, and tries to hide behind me. You know that lady on the beach with her dog's leash wrapped around her legs several times because her enormous fraidy-cat of a dog is trying desperately to get away from the miniature poodle that is obviously trying to eat it alive? Yeah, that's me. But he makes us laugh. He vocalizes like Chewbacca (you can hear him on the Rocketship video), he prances like a miniature pony all by himself in the backyard, he snores, and when he cocks that gigantic head of his to the side, I feel like we could have a conversation.

A different kind of package

Back in the good old days when I would hear the UPS truck pull up in front of our house, I couldn't help but feel a small surge of excited hopefulness. Lately, though the packages have been related to Sam's death-sympathy gifts, flowers-so I'm less excited. Today I felt that old familiar feeling at the sound of the unwieldy truck outside our home. Not so much excited anymore, but still hopeful for a sign of compassion.

Boy was I wrong.

The package was merely an envelope. The envelope was addressed to John-"Work," I thought. I squinted at the return address in fine print: Los Osos Valley Mortuary.

Oh.

I pulled back the tab on the envelope a couple of inches and saw the familiar pattern of a county certificate. I didn't have to open the envelope the rest of the way. I have several county certificates in my possession-a marriage certificate, 3 birth certificates.

Sam's death certificate has arrived. It stays in the envelope. I don't need to see it. I don't need it.

Please go to the Sam's blog and show that family some love. Superman Sam's AML is back. It's not good. Another family is at the end of the road. I am so sad. http://supermansamuel.blogspot.com/2013/11/520-days-later.html

Heavy

The last few days have been so heavy. I should have seen it coming, what with Halloween and people participating in Celebrate Sammy today. 

So Halloween, when your only child of dressing up and trick-or-treating age is dead, is not fun. Yes, it was lovely to see all of the children, especially former students. And I was touched that so many friends who do not live in my neighborhood stopped by to make sure things weren't too quiet here. 

I anticipate that no matter how many costumed children ring the bell, no matter how cute they are, and how kind and sympathetic their parents are, it will never be enough to fill the void that Sammy left when he died far too young and our Halloweens came abruptly to a stop. I've always thought unkindly of those people whose lights were out on Halloween. Unless you have a religious edict that prevents you from celebrating, why would you not do it for the children? I'm afraid our house may be one of those dark houses next year. We may have to build a new Jeffers' Family Halloween tradition. I polled the Jeffers on what they might like to do next year, but no one had an answer. They were silent.

The days following Halloween were rough too. First there are the scores of Facebook postings of adorable, complete sibling groups in costume, and then there was the, necessary for our purposes, scouting through every photo from 2005 until almost 2 weeks ago for pictures of Sammy. 

My belly, bursting with Sammy, with Ben and Abby lovingly leaning. Newborn Sammy, so small for weeks he had only one outfit that fit him-a preemie outfit. Baby Sammy, chubby, gorgeous, kissable and moist. Toddler Sammy, tugging on Jigsy or Scarlett's fur (all gone now). Preschool Sammy, with that purposefully, squinty-eyed grin, or falling asleep in the strangest places and positions. School-aged Sammy, smiling, smiling, smiling. Sick Sammy. 

There were many happy memories in those photos. In fact, at times I laughed out loud and called John over to the computer, "Look at this one!" Every few minutes reality would interrupt to remind me that there would be no more photos, but I still had a job to do-find photos of Sam. Reality offered one closing sucker punch to the gut when the last folder was searched, the final photo was copied, and the concluding disc was burned. I was done. I finished looking at all the photos of Sam I will ever have. There will be no more.

I feel sad, exhausted, and distracted, and I've been crying so much not only have I stopped wearing make-up, but I've stopped wearing moisturizer too. It just gets in my eyes and stings. So not only do I look sad and tired, but I probably look a good bit older too thanks to the wrinkles not getting all plumped out with skin cream. When I want to feel better I read your messages, walk with friends who don't mind me talking about Sammy, and I read the writings of other mothers who have lost children. It helps me to feel less alone.In particular I am comforted by the writings of Angela Miller who you can find on Still Standing Magazine, and Facebook . She is coming out with a book soon, if she can raise the funds. Guess what? You can help. You can buy a book before it comes out to help in the publishing, or you can give a single dollar, or if you really want to be a hero, you can give even more. Please check out her book out on and Pubslush. Please and thank you.

The photos we have will be used in a slideshow at Sam's memorial. All who knew Sam, all who know his family, all who prayed and hoped and wished for better for Sam are welcome at his memorial. The focus will be on remembering a sweet and joyful boy who loved the color sky blue, all things camo, art, animals, and imagination. If you have sky blue, camo or gold clothing to wear, do so-it will help to keep the mood sweet and joyful, like he was.

Celebrate Sammy, Again

Sunday, November 10th at 3pm

Congregation Beth David

10180 Los Osos Valley Rd.

San Luis Obispo, CA 93401

(805)544-0760

This Friday you have an opportunity to make a difference. Help us raise money for research by eating BBQ at Best Lovin' BBQ in Arroyo Grande from 3 to 9. Follow this link for details. I still believe we can change the future. Do it for kids like my Sammy (our Sammy), and do it for kids like Sammy Sommer (who by the way is doing well. Check it out for yourself here.)

Hurdles

Let's say that grief is a road. It's pretty bumpy, windy, and kinda dark right now. There are also all these opportunities to pull off and take a side trip. Like I can choose to focus for a while on the Well-Being of the Teens, but eventually that path rejoins Grief Road. I can also distract myself with Raising Awareness, but only for so long. Then there's the lovely Organize the Garage So We Can Park a Car in It...I'm too lazy to even go there. In between side-trips I experience these awful, shocking moments when the enormity of his absence hits me. 

Halloween 2010

One of those moments was yesterday when I went out to the Hoarders-worthy space that is my garage to get Chance his evening scoop of dog food. I saw Chance's Halloween costume. It's a hot dog. Sam picked it out on our last outing to Target (the one that inspired this post). Chance is here, but Sam is not. Sam will not dress up for Halloween. He will not go trick or treating. That means I'm not going trick or treating. That also means I'm not dressing up. I should still be trick or treating with my youngest son. We had at least 4 more years. Now what the hell are we going to do for Halloween? Are we going to sit at home and pass out candy? That's so sad. I haven't stayed home on Halloween since 1996.  What if no one comes to our house because they're afraid to bother us? That would really suck. My friend, Erl, promised me she'd bring her kids. I hope my other Grover Beach friends will stop by for a treat.

Halloween 2012

There have been other moments. Today I was driving the 5 blocks from my parents house to my own when I had to pull over and stop. I had been momentarily stunned by the realization that I will never see Sam again. How is it possible I could forget that even for a second?  I will never again hold his soft little hand. There will be no more kisses (he gave the best kisses). No more hugs (also the best). I will never see those eyes or feel his smooth cheek against mine. Then I have to stop. I can only take so much.

Time for side trip!

How about those teens? They're really doing great in their own crappy ways. They went to school for half days yesterday and today. They've both done some homework. They went to band practice last night for 3 hours. Ben did disappear toward the end of practice and freaked everybody out. "Where's Ben?" "Ben's gone!" "Ben ran away!" One of Ben's friends and section mates brought his gear, which had been left on the field, to the car and told John no one knew where Ben had gone. Ben went to the bathroom, people. Next time he will tell someone where he is going. 

I feel like each of the tasks completed (or restarted or whatever) is another hurdle cleared. They might not be clearing the hurdles gracefully or cleanly (Ben definitely caught a toe on the band practice hurdle), but they're doing it. Today Ben went back to teaching Hebrew school. Today we also called hospice to get everybody back into counseling. We stopped briefly when Sam was really needing us and I couldn't endure leaving him. Now I feel a sense of urgency in getting us some help because I can see that with the added pressure of returning to school and making up three weeks of work, someone is going to crack.

Oh, and the teacher that thinks that either of my kids is going to make up three weeks of work, while maintaining at school for six hours a day, keeping up with the current work, and grieving for a little brother in just three weeks...yeah, you're wrong there. Yes, I know it's the rules. But we're going to rewrite those rules to meet the needs of the individual, m'k? K.

Finally, someone tells me that my blog is on a list of blogs to vote for to determine the Top 25 Family Blogs by Moms. What the what? I shared the voting link on Facebook because I've been reading this wonderful blog over at Mary Tyler Mom by Sheila Quirke, and I wanted my friends to vote for her. Well, my friends are kind of stubborn in an awesome sort of way, and they said, "No. We want to vote for you, Sabrina." So here's the deal. If you can find me here. Vote for me. Voting ends tomorrow at 4 PST (how is that possible?) though, so hurry on up. If you can't find me, and it's 3:55pm, vote for Sheila.

Party of Four

My thoughts are so jumbled, incomplete, I can't focus. 

I start to think about how much I miss him, and then I get distracted by images of the moments and hours after his death-his last breath or his little body on the gurney, under a quilt being wheeled away from the house. 

The teens are distraught and scared to go back to school. 

The dog is acting weird, he's suddenly so needy. 

Sometimes I feel numb and so guilty that I am functioning. Why am I not weeping and useless all day? I should feel worse. I don't feel badly enough for a mother that buried her son less than a week ago.

That 20 pounds I put on over the course of this last year is really bothering me, but I write this in between bites of red velvet cupcake and sips of red wine.

I can't believe he's gone, and yet I watched him die. How is this possible?

I can only remember sick Sammy. I see flashes of healthy Sammy, and then I realize I'm remembering photographs. When will my memories of healthy Sam return?

My back hurts more now than when I was taking care of Sam. I'm not lifting, transferring, adjusting, dressing, and supporting anymore so what the hell?

I'm suddenly in a different class of parent. I was needed. Sam had to be walked to and from school, he needed supervision, help with homework and bathing. He needed a lunch made for school. I cooked for him. John did his laundry. We read to him at bedtime. He would've gone trick or treating. Suddenly we're parents of teens. Sure, they need us but not in the same way that Sam did.

Today we went out to lunch. "How many?" asked the hostess. I was speechless. John hesitated, then responded, "Four."

A note to Sam from Dad

Sweet and gentle Sam—my “lil’ guy”:  

From the moment I first saw you I knew you were someone special.  I knew you would have an impact on me and the rest of the world that we would feel forever. 

From day one you were a beacon of sunshine and energy so powerful that I always felt safe around you, and I was comforted by the knowledge that the world would benefit from your presence and the gifts you would share.  I didn't know at the time what those gifts would be and I couldn't know at the time how you would share those gifts but the magic was there.  Everyone around you could feel it.

Sweet and gentle Sam—your time with us was far too short; but I want to thank you from the bottom of my heart for the time you did give us.  In your lifetime you taught me many things:  You taught me that a small, quiet voice could have an enormous impact on people; you taught me that being kind and gentle was far more powerful than a booming voice or a commanding presence; you taught me that a smile and an infectious laugh could make everything seem better;  you taught me what real courage is and showed me how to face obstacles far greater than any of us should ever have to endure; you taught me patience and how to slow down and take note of things that really matter in life; you taught me what dignity is and how to uphold it; and you taught me how to find Hope in the darkest of tunnels. 

Sweet and gentle Sam—most of all you taught me about Love, what it really is and what it can do for people.  You taught me how deeply you can feel something utterly beautiful in another human being.  You taught me that because things can change in the blink of an eye you have to give each day all the Love you can to the people you care most about.

Sweet and gentle Sam—you were my very best friend, my playmate and my comedic confidant.  We laughed at each other’s jokes and shared countless hours of joy in an imaginary wonderland, where everything seemed perfect as long as we had each other.  I am so grateful we had that time together. You were my “lil’ guy” but you were a giant in the Love and Joy you brought to the world.  I promise that I will always remember the things you taught me.  And I will always, always Love You.

Love, 

Dadda

A private family service is being held for Sam tomorrow. Starting tomorrow evening we will be sitting Shiva at our house in Grover Beach. Contact Rabbi Linda at Congregation Beth David for more information (544-0760).  We will be planning a more public memorial service within the next month or so to afford Sam's loving community an opportunity to mourn and celebrate as well. We are so appreciative of your love and support.

8 years, 6 months, 2 weeks, 4 days, 6 hours, and 31 minutes...

is not enough time to live. It was not enough time to mother him. It will never be enough.

Samuel Alexander Jeffers exhaled his last exhale at 6:31 this morning at his home in Grover Beach.

Sam was diagnosed with brain cancer exactly 1 year and 1 month ago. 13 months later his fight is over, but ours has just begun. His journey in this life is complete-way too short, but complete. I have half a lifetime to comprehend and mother him as best I can from here.

Day 11 of watching and waiting

There isn't much to report. I sit with Sam and watch his chest, waiting for each breath. I scan his face searching for signs of distress, discomfort, pain. I touch his skin, feeling for clues-is he hot or cold? Does he need a blanket? Does he have a fever? I struggle to interpret his inaudible whispers and weak hand signals-Water? Pain? Hunger?

All I want is for him to want for nothing. To need nothing. To feel no pain. To have no fear. I'm such a failure.

I miss his eyes. I miss his little voice. Oh who am I kidding? We haven't heard his real voice for months, but I even miss his whispery voice. I miss his laugh.

Halloween is less than 2 weeks away and our jack o'lanterns have already gone moldy and been thrown away. It a good thing I decorated and carved early. At least I got that right.

***Did I write that I am a failure? What I meant to say was I have failed. That is truth. I have failed to meet his every need. To have him never know want or pain. I did fail. I am failing. I will continue to fail him. It is just a fact. Not a judgement of myself as a mother or a person. It just is. I have to accept that I cannot achieve this perfectly peaceful passage for him. It is impossible. It hurts. But it just is.

A message from Sam's dad.

Buried Alive

What we are going through right now feels like torture.  It is an agonizingly slow suffering, one that saps every ounce of energy and joy and hope out of you.  It feels like a nightmare that won’t end.  It’s suffocating—like being buried alive.  I can now fully understand some of the atrocity of war and famine and disease and the emotional and physical suffering brought on by it.  Previously, safe in my (western capitalist democratic) cocoon, I could only imagine the effects of such things; now I am living it.

Each new day brings with it both immense joy that Sam is still alive and tremendous anguish from watching him live life as he must now.  Each day, it seems, we are sentenced to watch our son die. 

Not very long ago I had resolved not to do this.  I had promised myself (and my family) that I would cherish each moment spent with Sam and had determined not to sit around and feel sorry for ourselves, but instead to live life and celebrate the precious moments we had with him.  

On paper that sounds so good.  In reality it is hardly practicable.  We can no longer do anything with Sam.  We can barely communicate with him.  We spend each moment waiting with bated breath for something to happen.  When he tries to speak we desperately struggle to hear what he is trying to say—we don’t want him to suffer or want for anything for even a moment.  We do whatever we can to comfort him—a sip of water, a spoonful of applesauce, a syringe of medicine—and then we settle back down to more watching and waiting.  

Buried alive again.

Here's what I want you to know...

I want you to know that Sam is alive.

I want you to know that we're "fine."

I want you to know that Sam sleeps peacefully, and comfortably for a few hours at a time, and then he stirs and makes simple, whispered requests for food, positioning changes, and trips to the bathroom that we struggle to understand.

I want you to know that if you had told me that he would go from eating sitting up in a chair unassisted, walking with help, and standing at the toilet to pee, to not even being able to hold his head up and peeing in a diaper in less than 24 hours I would have told you to go fuck yourself.

The hardest part is watching Sammy, my vibrant, active, smart, creative, compassionate, 8-year-old, be altered by this killer. 

The hardest part is not being able to honor his requests. "Can we get up and start our day?" "I need to go pee." "I just wish everything was normal." "I want to go home." This-lying on the couch all day, sleeping, taking sips of soup and tiny bites of McDonald's soft serve ice cream (McFlurry)-is our day, baby. It's okay to pee in the disposable pants (diaper), Sammy. I wish for that too, Little Guy. We are home, sweetheart.

The hardest part is knowing that this will not end with recovery. There will be no awakening beyond the half-open eyes we see now. There will be no physical therapy or occupational therapy or speech therapy or IEP or...

I also want you to know we are grateful for your help, and we are comforted to know that you are holding us all in your hearts. 

Please remember that there is still so much work to be done in the childhood cancer arena. While I am still mothering Sam I need you to continue that work for me. Raise awareness. Tell people childhood cancer is not rare (1 in 300 kids will be diagnosed. And if you think I'm being alarmist, Google, "childhood cancer blog," and start reading). Tell people childhood cancer research does not get enough funding from public or private sources. Tell people we need treatments specifically for kids that are effective for their cancers and less toxic. Refer them to Alex's Lemonade Stand Foundation for information and ways to help. Send them over to The Truth 365 for facts and an action plan. Tell them to check out St. Baldrick's.

Whatever you do, please check out an organization before you start donating, volunteering or referring other people to it. Check them out on Charity Navigator and figure out how much of the money they raise actually goes to childhood cancer research. 

Whatever you do, don't support the American Cancer Society as a means to supporting childhood cancer research. Please read their report and this article.

If we arm ourselves with anger, information, compassion, and vulnerability, I believe we can make a difference.

Remember Sam's song, Rocket Ship, by Chris Beland? Here's the video. 

So in hindsight, I think it was an update

Sam has most certainly deteriorated quickly. So quickly, in fact, it happened over the course of one day. At 1:30 on Monday we were enjoying looking at the animals at the Avila Valley Barn, and by 2:30 Sam was puking. And yes, he slept and puked all day Tuesday. He was restless all last night. 

Today Sam slept all day again. He had a seizure this morning at 7, followed by vomiting up his steroids and Keppra. We gave Ativan for seizures since its a tiny dose that's easy to absorb, a suppository for nausea and vomiting, and topical steroids for the swelling in his brain caused by the tumors. He seized again at 2 so we gave more Ativan, but his breathing was so labored (I thought he might die right then) that John decided to call 911 while I called the hospice nurse. By the time paramedics got here the seizure was over and his breathing was better, so we did not go to the ER.

The thought of losing Sam is unbearable. But the thought of losing Sam in a panicked, chaotic, scary situation is well, scary. Awful. Terrible. I don't want his last moments to be full of fear and struggle.

The hospice nurse has pieced together a puzzle for us: restlessness, vomiting, lowered heart rate, sleeping all day...this is end of life stuff. We likely have days with Sam. We'd like to keep him at home if we can control his seizures and the vomiting (which keeps the meds in him). I want him to die in his sleep, surrounded by family, comfortable. 

As to visitors-we don't want any. As to updates in the near future-don't expect them. If you want to help-there's a care calendar that we will be asking friends to open up so that you can bring meals (we'll provide a link later). Sorry if that sounds harsh, but...there is no but. 

It's either an update or a blip

Sam slept away most of Tuesday. What little food he ate he threw up. I don't know if this is the stomach flu or progression of the cancer. Only time will tell.

His sleepy day was followed by a restless and wakeful night. Is that because he slept the day away, or is the tumor confusing his days and nights? Only time will tell.

I don't know if I should be bracing myself for the end, or if he'll bounce back and we'll get a few more weeks. Just Monday night, John and I were talking about Sam celebrating Halloween. Now it's changing on me. 

I'm terrified of what's to come.

At least we got to see the llamas. Or maybe they were alpacas.

Monday, October 7, 2013

Sammy bounced back a little today. This morning he was just a little more bright and shiny. We even made an outing to the Avila Valley Barn to see the animals, and buy some produce and baked goods. There was even a heifer named Abby.  I think Sam had some fun, but unfortunately as soon as we got home he threw up. So I'm thinking that my experience two mornings ago with vertigo, nausea and vomiting was a simple stomach virus. And now Sammy's got it. Thankfully it was pretty mild for me, so hopefully it's the same for him.

Tuesday, October 8th, 2013

Sam awoke at 4AM asking if it was tme to get up and start our day. I gave him Benadryl hoping that would buy us another couple of hours of sleep, but it was not to be. He was up at 5AM, 5:45AM, 6AM, asking if NOW we could get up, and like a kid I begged for us just to remain in bed until my 6:10 alarm. Just 10 more minutes, please?

So we got out of bed at 6:10 and went about taking vitamins and anti-seizure meds, and drinking hot cocoa. At 7AM Sam asked to please go back to sleep, in his bed. I was relieved and concerned by his request, because you know I'm exhausted, but you also know what sleep means. When we got back to the bedroom and into bed, he threw up his hot cocoa (and possibly the anti-seizure meds?). Kinda goes with the feeling sleepy if this is indeed a stomach virus. We got cleaned up and went to sleep til 8:30. 

He stayed awake for all of half an hour and has been mostly sleeping since. It's now 11:45. I'm worried. Is this a virus, or is it the tumor? Should he have more anti-seizure to replace what he threw up? He hasn't had his steroids yet today. Do I risk giving him that? Steroids are known to cause upset tummies and we've already got that.

Noon

Sam is up. He's had some jello. He's asking if he can have some of his leftover Mc Flurry. And he's asking for a story. Sounds good to me. I just wish he could stay awake to enjoy these things.

As the world turns

Yeah, last night was a little better but not much. I guess I just have to accept that Benadryl works and use it. Poor little guy has his days and nights mixed up. 

I had an interesting experience that started with his 2nd wake-up at 4:30 (told you it was better). Every time I opened my eyes the room spun around me. It's really hard to convince a child to go back to sleep much less get up, go to the bathroom, and dose out Benadryl, walk back to the bedroom, sit the child up, hold him while he sits, and pour medicine into his mouth-all whilst the world spins around you. 

After about 20 minutes of, asking myself, "Is this really happening?" "I can do this, right?" I called for John. He took over with Sam, while I stumbled to the master bedroom. I felt a little nauseated, but I managed to sleep until 8. Sam, thanks to Benadryl, slept until 7. I woke up still spinning and nauseated, had some dry heaves, but by about noon I was good.

Is that what they call vertigo? Like I said, it was interesting. And really, I'm fine. I even went for a run tonight. Of course I pulled my calf. Again. At least I'm not spinning anymore.

As for Sam, he continues to decline. He needs so much help walking, I don't think he could do it alone. He's still awake most of the day, but he spends a lot of time in his chair or on the couch just kind of spacing out. He listens when we read to him and gets the jokes and laughs.

And world keeps turning, as evidenced by the arrival of October and the eldest child's birthday. Tonight we celebrated Ben's 17th a few days early. I can't imagine what he wished for.

Up all night. Well, up enough.

Sam had a rough night. No, don't worry, he wasn't miserable. He's not in pain. He just couldn't sleep.

Sam woke me at 1AM (about 3.5 hours hours earlier than normal) with his usual, "I have to pee." Funny how at night, in bed, his speech is so clear (relatively speaking), and easily audible. Then he was up again at 2:50. I said, "Really?" No, I did because less than 2 hours after peeing one shouldn't have to pee again. But you know I don't want a wet boy and a wet bed, that's not fair to any of us, so pee we went. And back to bed.

3:15: "I have to pee." No you don't. There's no way. You just went 25 minutes ago. "Well then, can we get up and start the day?" Baby, it's nighttime. It's dark outside. We need to rest. Something else is going on. "Why can't I sleep?" He said it just like that. Clear, succinct, audible. I'm telling you, at night, in bed, I don't have to ask him to say something 3 or 4 times. I don't have to guess. His speech is there.

So we went through the checklist-

• You just peed. You need to go again?
• Too warm? Too cold?
• PJs uncomfortable?
• Pain anywhere (waiting with bated breath)?

• No.
• No.
• No.
• No (sigh of relief).

There's nothing I can fix to make it right. There's nothing I can fix to make it right.

Finally, it dawns on me-Benedryl. If it's the steroids keeping him up or the tumor, Benedryl might be the answer. So I gave him Benedryl. Still he tossed and turned. He stretched out diagonally across the full-sized bed we share.

And then I passed out.

He awoke me at 6:45. "Can we get up now?" Did you sleep baby? "No." I sure hope he's wrong, and he slept. There's no way to know, but he sure was tired today, more-so than usual.

Sam sleeping in Inverness. June 2012.

Sam sleeping in Grover Beach. August 2013.

Dear Target Mom,

Or Walmart Mom, or Trader Joe's Mom, or Mom that passed us on the bike path...

I see that look. I see your sappy smile with no eye contact and the quick look away. I know what you're thinking. And you're wrong. You're thinking for a brief moment about how grateful you are that you aren't me. You're thinking how fortunate you are that your child was born "normal," with no special needs. Maybe for the next hour you'll have more patience with your stuck-in-the-shopping-cart, screaming 2-year-old. Good. 

Tree-climber

Appreciate that healthy baby, Momma. Thank your lucky stars, for now. Cause I've got news for you: My kid wasn't born this way either. He was a healthy 6 pound 6 ouncer. He met all of the developmental milestones on time or ahead of time. He read above grade level. He was a whiz at math. He won writing awards. He drew with such fine detail and imagination. He spoke with ease and eloquence to adults. He jumped and ran and climbed trees and dug in the sand on the beach.

Hiker

Chef

And then he got cancer. Cancer took my healthy baby away, and it can take yours too. The only known risk factor for childhood cancer is being a child. 

Sincerely,

Me

P. S.  My house was decorated for Halloween on October 3rd. Costumes (even the Dog's) are ready, candy is purchased and being eaten. Now. Not wasting any more time.

Too close to home

Sam continues to remain relatively stable. He needs our help to walk, and any other sort of getting around (into and out of chairs, bed, the car). He still talks a little, but very quietly and we do a lot of guessing and asking yes and no questions. I feel like in the last few days he's not laughing as much, but he is still awake most of the day and sleeping pretty well at night.

Since we've made it to October I need to get busy ASAP on Halloween decorations. Sam doesn't have a favorite holiday, but like most kids his age, he loves Halloween-the dressing up, the candy, the being out after dark, the candy...Now usually I am what like to refer to as a slacker mom. I'm the one that forgets it's my turn to bring snack for soccer and so I go out during the first half of the game to buy it. I'm the one who forgets that it's picture day, so my kid's wearing his usual for the photograph. And I'm the one that puts up Halloween decorations on October 31st between the end of school and trick or treat time. In fact, one year I forgot to take pictures of the kids in their costumes, so on November 1st I had them dress up again, lit the jack o'lanterns, and snapped a photo. I can't be slacker mom this year. There just isn't time.

Halloween 2012-one month, six days into treatment

There's no easy way to break this news:

Jigsy 2012, in all his glory

Today we lost Sir Jigs. Yes, Jigsy Kitty, AKA The Sexist Male Cat ever, is gone. And it's all thanks to cancer. Yep, stupid, fucking cancer killed my cat.

On Saturday evening I noticed he had a little bump on his lower eyelid, and John said he hadn't been eating as much as usual and had been coughing for a couple of days. Now Jigsy's always been a rather hefty dude, weighing 12 pounds when we really buckled down and restricted his food. Now that that I think about it, a couple of months ago I thought, "Wow, we're doing really great with this weight control thing for Jigsy. He's looking svelte." Maybe that was the start of it.  It doesn't really matter.

He went to Pismo Beach Vet Clinic on Monday morning, they did an x-ray and found lumpy kidneys and a mass on his lung. Had we caught this earlier it wouldn't have changed the outcome. He had lymphoma, and it looks like the first sign of it was a mass in (or on) his lung, which makes the prognosis even worse. I brought him home Tuesday afternoon, not realizing how bad things really were. Poor kitty just couldn't breathe. I kept him home last night and it was torturous to watch his labored, rapid, wheezing breath. He didn't move except to get away from us-in the closet, under the bed. This morning he ended up in his favorite morning spot-on Sam's bed, in what should've been, except for the foggy day, a patch of sunlight. He didn't even have energy to get up and use his litter box. He didn't eat or drink.

I knew what needed to be done. John knew. Even Abby didn't want to watch him suffer anymore. Ben said, "You're not going to kill my cat." We talked about prognosis. We talked about suffering. We talked about how if Jigs was a human we would put a diaper on him and pump him full of morphine until it eased his breathing, which would put him to sleep, and he would sleep until he died. Too close to home. We talked about euthanasia.

Ben and I brought him back to the vet this morning. I wanted Ben to talk to Dr. Joel, and I wanted Jigsy in an oxygen chamber while Ben came to terms with what was best for Jigsy. I wanted Jigsy to be comfortable while Ben wrestled with this impossible decision-not that it was really up to Ben. He's not a grown-up. I wouldn't do that to him, but I wanted Ben to be ready.


After a few hours at home and more talk of the life span of pets and our responsibilities to them, Ben said he was ready. I called the vet and made an appointment for 7 this evening. Less than an hour later Dr. Joel called to say Jigsy was in terrible distress, breathing as one does when one is dying. He asked for my permission to euthanize Jigsy right away. John was picking up Abby at school and I was home with Ben and Sam. I couldn't leave. Even if I had rushed to the clinic, Jigsy would have waited 10 minutes for relief. I wouldn't do that to him. I let him go. Ben and Abby were upset, but they understood and have forgiven me. John knew it was the right thing to do. Sam had been told that Jigsy was sick, and I delivered the worst news as gently as I could. I'm not sure he understands.