What you don’t know

you don’t know:

^^How bad it hurts to see the posts on social media showing how your children / child has grown. Because mine hasn’t and it makes me wonder about the whole “what if” thing. 

^^I notice when I see you in a public place trying to tell your friend  / significant other that *I* am the person you’ve been telling them about…but you’re trying not to show it as we say our hellos and exchange pleasantries. Lordy, just be honest. I’ll talk about it honestly and openly – just please don’t pretend that I don’t know that you’re talking about me.   

^^losing a child and/or experiencing a great loss is NOT contagious. Just because you are close with me, doesn’t make it more likely that you would go through what I have gone through. Please don’t be afraid to be close to me or be my friend. 

^^ I have my intensely sad moments, to be sure. But that doesn’t mean I’m incapable of love, joy and / or pleasure in life. I accept my past. I accept that it will always be a part of me, for good or for bad. 

^^I get it. I totally get why you would *choose* to NOT tell your child about their friend who happened to have died. Why put them through that? I would do the same thing. Please don’t pretend for “my sake.” If you’ve told your child another story, just tell me. I can go with it. Pretending only makes things worse. 

And finally, I don’t know what I would say to me either. What do you say to someone who has witnessed the death of their own child? I still don’t know. There is still a lot of shock that remains and sometimes I’m still not entirely sure of where I am when it comes to the line between crazy and sane. But I do know this: I can use all the friends and love I can get. Maybe you’ll never “get it” and maybe it’s something you can’t even fathom – neither could I before it actually happened. 

But if you can give me a hug and try – I can still be a good friend. 

Three Years

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The years, months, weeks, days, hours…just keep piling up and our old friend / foe Time can sneak up and get you sometimes. Lately, it’s felt as if I am finally coming out of shock and I look at the calendar in disbelief. Though I say that every year now, it becomes harshly more true with each passing year. The pain of losing, and coming to terms with life without, Noah is too much to bear all at once. So it comes in cycles and waves; a little at a time. I cling to loved ones in alternating phases of hiding myself away.

Three years ago today, we were struggling to get and keep Noah on life support. Memories of those days in the hospital PICU are blurry and though I try not to dwell on them for too long, it’s more difficult this time of year. It’s difficult and painful to reflect on that time, but I feel like it’s a way of honoring that final phase of his life, much like taking care of Mom during the final weeks of hospice care. Each touch, interaction, spoken and unspoken word is a final and desperate attempt to convey your love for them as they reach the final milestone.

handsI remember the sterile smell of Noah’s hospital room. His limp hand in mine. Opening his closed eyes so I could see and remember how green they were. Trying to ignore the thick, red tube going from his heart to the ECMO machine that did the work of his organs while they struggled to heal. Laying next to him in the bed and wrapping his arm around me. Taking mental pictures of every tiny nuance of his body: the freckle on his left hand that was similar to mine, the one on his ankle, the swirl of his belly button, ears, head, hair, sweet but swollen face…

I remember giving him a sponge bath, the way I had seen done for Mom in her final weeks. I even had someone bring in his “itchy stuff”: ointment for his eczema. “Maybe he’s itchy,” I thought, “and he can’t tell us.” I went through the whole bath / ointment ritual with him one last time, imagining his predictable responses while carrying on our usual bath-time dialogue. I didn’t care what the nurses or other visitors must have thought: is she crazy? has she totally lost it? I didn’t care what anyone thought. Noah was what mattered and, loud and clear, I heard him in my heart.

I had to be re-assuring and positive when I thought he could hear me nearby. Breakdowns were for the waiting room or outside when I wanted to be alone.

I remember spending the 4th of July in his bed with him watching the fireworks outside his hospital window. Having had the first confirmation of brain death, I knew he probably couldn’t hear me describing them to him, but I couldn’t let go of being his mom just yet. I needed to experience one last special, exciting, fun moment with him and try not to think about all that had happened and what the next few days would bring. I just wanted to tell him about the beautiful pops of orange, purple, blue and all of the shimmering colors as they splashed across the sky, so that he wouldn’t miss them…pretend that there might be something normal about what was happening if only for a few seconds in time.

I know that I can’t re-live or change the past. It’s excruciatingly difficult to look forward when the goals and plans of the past have crumbled around you, taking some of the closest of your loved ones with them. What happened cannot be changed, as awful and unfair as that is. I have no choice but to do my best and try to go forward.

Most children strive towards their parents’ pride and approval: doing well in school, working hard, behaving and doing as they’re told. My goal is to hurry up and do what I’m meant to do in this life so I can finally be greeted by my son, running into my arms as he says, “Good job Mommy!” while my mother looks on with pride.

The little things. 

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It’s so strange…those little things that trip me up. So little, I never even considered it to be a challenge. But there I was. This is what I wrote about it.

Grief rises in my throat

Creating a hard lump in the back of my mouth

My tongue swells and I can’t align my jaws or my teeth 

Happy families surround me in the waiting room while calm instrumentals play gently familiar songs: 

Every Breath You Take

Don’t Stop Believin’

And I don’t know whether to hear the message in “I’ll be watching you…”

or crushed at the breaths no longer taken.

I dread my admittance to the exam room but not for the reasons most women dread it.

Eventually it will have to be said. When the doctor finally recognizes me and I have to tell the horror story all over again.

Yet another person I have to bare my broken heart to when he asks about the baby he delivered almost ten years ago.

Noah's birth

2014 in review

The WordPress.com stats helper monkeys prepared a 2014 annual report for this blog. Thank you for sharing in my journey, keeping Noah’s legacy alive and for all of your love and support.

xoxo
Sara

Here’s an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 2,800 times in 2014. If it were a cable car, it would take about 47 trips to carry that many people.

Click here to see the complete report.

Christmas Eve

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Today is Christmas Eve and I’ve had trouble sleeping lately. My brain just doesn’t seem to want to shut off and I know that, although this is the third Christmas without Noah and life has again achieved some level of normalcy, there will probably always be at least a tingle of some emotional pain around the holiday season.

So last night as I lay in bed trying to quiet my mind, a stubborn concept formed in my head and I could not sleep until I wrote it down. If you will excuse the cooking analogy, I would like to share it here.

We are like a flavorful herb: sage, thyme or a pinch of parsley in this stew of life. Complex flavors intermingling and complementing one another. Just because the actual ingredient may dissolve doesn’t mean that it ceases to exist. Just because you can’t pick out and recognize each herb once it’s been added to the stew doesn’t mean it isn’t there. It is the same for us.

Once we add our flavor to this physical manifestation here on earth, we become a part of the whole, larger organism that is life. This is why our souls incarnate. Because being a perfect spice, pure and unique in flavor but confined to the cupboard, does not allow any expression of potential. Life’s recipe calls us forth. Our flavor is needed, lest the soup be bland.

We do not cease to exist when we add our flavor. We create harmony with all other aspects of the recipe. We work together with other ingredients and our environment, flavoring our surroundings with ourselves, changing our world, our lives, the lives around us – even our very chemical composition – to create something rich and beautiful and forever different, had our flavor not been added.

We do not lose ourselves; that would be impossible. By adding our unique flavor, we work in harmony with others to bring about something beautiful, useful, nourishing. Something that may have been entirely different had we not been included in the recipe.

No one is ever really gone. If you keep your senses truly open, you will find that what you think you’ve lost is always and will always be – with you.

looking at two years

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The calendar is only one of a legion of things that feels like assault. Life goes on. Things change. People come and go in each others’ lives just as surely as the earth’s ancient cycles.

Yet, in many ways, I feel stuck in this strange altered life where I perpetually feel as if I’ve lost a limb. I know that I have to find a way to adapt but sometimes I still feel so angry at, and tortured by this loss that it’s all I can do to put one foot in front of the other. Most of my free time is spent in solitude because of the fear that outside my safe places I can’t control the risk that someone or something might send me into a tailspin.

At the same time, my triggers are so engrained in me that I don’t even think about them much anymore except to avoid them: swimming pools, the smell of chlorine, the boys section at department stores and the 6 block radius surrounding the Accident Site are the big ones. I often wonder when and if these aversions will ever be less intense. If I will ever be able to face another swimming pool or go anywhere near THAT particular swimming pool again. What I will do with all of Noah’s toys and belongings, still boxed and undisturbed in the garage.

But mainly, what I ponder lately is how I am to live this life now. How I want to live it. It always kind of bothers me when I talk about Noah with someone I’ve just met and they say something like “I don’t know how you go on.” Whoa man! That’s a tough one to which I’m never quite sure how to respond. What do I say to that? Do I offer up reasons, as if they were excuses, about why I DO “go on?” The truth is I don’t know how I go on either. But I do, like it or not; with lots of help from Denial, Distraction and Displacement. Living in 3D the only way I know how.

As the two-year mark approaches, I can say that in some ways my life has been better than last year:

  • I know how to do today and I try to be gentle with expectations of myself for tomorrow.
  • I don’t cry every day anymore but at night I still hold tight to the quilts made from Noah’s clothes.
  • I still prefer the safety of my home; though I do appreciate and love my friends and family for pulling me out from time to time whether I want to or not.
  • The shrine that was my living room has normalized somewhat, with some of my treasured relics now packed away.
  • I’m working on facing and dealing with my tendency to engage in or overdo things that aren’t really good for me.
  • I’m trying to practice being grateful: I don’t think of all the misery but of the beauty that still remains.  – Ann Frank

So. The truth is that I still feel broken. I can debunk the old saying now and say that time heals nothing. I still feel bewildered and overwhelmed. Progress and growth come slowly and only after a lot of difficult and exhaustive work. Every day is still a battle and almost every night is too. My brain has given me some pretty amazing dreams but the nightmares are agony. The battle is always there. But I’m trying to have “the serenity to accept the things I cannot change; the courage to change the things I can; and wisdom to know the difference.” I know I cannot change what happened, but accepting that Noah left this existence and in the way that he did…is still a daily struggle.

Weak Moments

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It’s funny how the mind works. In the early morning hours when the fog of sleep lifts ever so slightly and before the alarm reminds me of the tasks of the day…

Maybe it was Zoe’s short hair that set it off. Maybe it was the shooting at the Jewish Community Center where Noah went to preschool. Maybe it was just completely random. It’s hard to say.

This morning I was only half-awake as I was thinking. I thought of my children and how much I missed seeing Noah. It has been so long since I’ve seen Noah and I couldn’t, for the life of me, figure out why. Where was Noah? I have seen lots of Zoe lately, thank goodness, and always on schedule. But why hadn’t I seen Noah?

Jason must be keeping him, I thought. Why would he do that, though? Why would he share Zoe as planned but not Noah? As I thought harder to solve this mystery, I tried even harder to recall the last time I had seen them together and then something in my brain clicked on like a light switch.

Oh, I realized.

Noah is dead.

Dead. It’s such a harsh word that I have always made it a point of utmost importance to not let myself utter or even THINK that word. The self-protecting reflex on which I had grown so dependent was called upon once again. I tried so hard to collect myself and find an acceptable synonym. But it was too late.

Dead.

There it was. That word. That WORD describing my SON! It suffocated my heart.

With the cloud of sleep still weighing heavy on my body and mind, I could not seem to find a way to appropriately censor and filter my own thoughts, as I do when I am fully awake. Heartbroken and frustrated with myself, I tried to push it all from my head. A trip of conscience while the part of me that knows how to self-soothe was still sleeping. And the harsh truth of everyday language crept in on me like the sun creeping slowly from behind the curtains.

Luckily, I have other tools to fall back on. Tools like denial: making me able to force myself asleep (only sometimes) where I can pretend none of it happened. Just go back to sleep, I told myself. And somehow, my practiced intuition was able to forget the fact that almost two years later, there are still times that I believe Noah is alive. Out there somewhere but being kept from me; just out of reach.

When I realize the harsh truth, it’s as if I’m back in that hospital room again, saying goodbye to my only son as my heart, future, LIFE shatters right before my eyes.

My coping tools have grown strong, but these slip-ups still come. Even though, enduring and strong (strongER?), they live in me and haunt me for days. My head knows that my son is gone. My heart is still learning.

Cards

Somehow, and I have no idea how, some photos I had taken of the sympathy cards we received, made their way onto my iPhone camera roll. I honestly haven’t a clue how that happened.
So, I believe that perhaps these sentiments were meant to be shared. Maybe someone else who needs them will come across these words at just the right time. Even in the fog of pain and shock, these words and the love they describe brought comfort when it was most needed.

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