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.