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.