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.

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.

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.

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

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.)

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.

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.

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.”

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.

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.

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.