Monday, March 9, 2009

A Gathering Storm

Like Henry's illness, his death has been easier in some ways than I expected, and harder in others.

When Henry relapsed, I was surprised to find an overwhelming sense of relief. My anxiety level regarding if, when, how he would relapse had been so great, so constant, so unrelenting, that to not have to worry about the relapse anymore was liberating. I could just focus on him, on what was next to come, without wondering.

With his death, I found the same. It was less palpable than with the relapse, but there was still a sense of relief. I no longer had to worry if he would be uncomfortable. If it would traumatize the girls. If he would be scared. If it would take so long we would wish for the bitter end. If he would have to be hospitalized again. If I would regret his lack of IV access. If I would make a bad decision, or one that I would regret.

I also found that as a parent I had a huge sense of relief. I no longer was the parent of a child with cancer. I no longer had to walk the minefield of that life, scanning the horizon for infections, cancer, learning disabilities, emotional scarring. Next time a kid in my house pukes, that's all it will be: puke. Not cancer.

I felt this relief in the girls too, and we talked about it a lot. I made it clear that though it was nice to not have a sick brother anymore, it didn't mean that we didn't miss him, and it didn't mean that we wouldn't have all done it forever if we could. But no one misses cancer.

But just as the relief from physical pain fades as the memory of the pain fades, relief from cancer has all but disappeared.

I find that I have trouble identifying what I'm going through now, like there is so much going on in my mind that I can't pick out any individual agenda items. I've never walked this road of grief before, and it seems that it is so different for everyone that I don't know how to anticipate what is to come.

I feel a gathering storm, though, and sometimes I wonder if I'm prepared enough for it.


Michelle W. said...

You are so very strong and I admire that. I have prayed for you everyday. I wish there was something I could do to help you, but know that I am one of many who care and I am thinking of you and sending out my strength to you.

Indigo said...

Your in my thoughts dear friend. I imagine along with the relief is a bit of shock, everything is apart from what you had come to know in recent months. Stand strong against the coming storm, I'll be here to lend an ear, a virtual shoulder to help weather what is coming. Your family remains in my prayers on the smoke. (Hugs)Indigo

Anonymous said...

I don't have a doubt in my mind that you will do just fine, addressing it all head on!

You take care Dr. Smak!

Love, RRNC

Anonymous said...

Please know there are those out here who keep you in our thoughts and prayers.

Losing a child is like nothing else. I wish we could all wrap our collective arms around you and help.

Many continued blessing to your family.

Anonymous said...

There may be a storm, but the likelihood is just that there will be good days and bad days. You simply have to be vigilant -- both with yourself and with your husband and daughters -- in case the bad days turn into an actual depression before the good days are able to take hold.

Please remember (especially when you have bad days) that your family may grieve at a different pace. If your husband and daughters begin having more good days while you're still having more bad ones, that doesn't mean they loved Henry any less. Conversely, if some of them are still having more bad days by the time you're having more good days, there's no reason for you to feel guilty that you've managed to move on sooner.

I nursed my mother through a long final illness, then lost my father rather suddenly. I understand what you mean about relief; in some ways the loss of my father was harder than the loss of my mother because there was no such anesthetic when he died. During my mother's illness I decided that illness is nature's way of preparing us for death, both the patient and the survivors.

I wish I could give you a hug.

Laura in L.A. said...

Know that I am praying for you and your family, every day. I am so sorry for the loss of your little boy.

Love, Laura

PalMD said...

What you describe is very familiar, and I'm glad you have the courage and insight to state it. That sense of relief is very common, and is a small gift in a great tragedy.

...tom... said...


Sensing, knowing of a coming storm allows time to prepare. Plywood, water, batteries, food ... perhaps they all have similar mental/spiritual counterparts.

I do know, or at least suspect, that you and your family have a thousand hands outstretched to you and a thousand shoulders to lean on.

Use them, value them. Worry about tomorrow, next week, next month, next year when it comes.

Anyway . . ..


SOCKS said...

Dr. Smak -

It's good to hear from you again.

I like what you say because you are so human, so honest and share so well with your girls.

And, being where I am in these relationships, I agree. I was relieved at first but as each day passes I get more sad and miss him more.

I'm sure it's healthy and normal but it feels different than I expected.

So be it. I will ride the storm as Henry did. That's the least I can do.

Anonymous said...

Dr. Smak, I am not sure any one can be prepared for the death of their child-and the gathering storm it entails.
But I do know this, you are an incredibly strong individual, who is blessed with a supportive spouse and family, along with a huge contingency of friends. If we can help along the way, please let us know.

pisceshanna said...

I'm crying reading this. I can't even imagine going through the emotional insanity you must be feeling.

I admire your ability to even form concious thoughts at this point.

Sending you comforting thoughts from Colorado.


ADB said...

You're experiencing grief. And it will take months, years to wear off to a background level. It will never leave you, but I hope that good memories of Henry, together with support from inside and outside the family will shorten your road.

Take time to grieve. Do not rush.

I lost my mother in May 2008. A different scenario, but the parallel is nonetheless clear.

Anonymous said...

Your insights and your way with words never cease to amaze me. I believe you're probably as prepared as anyone ever could be, and probably better than anyone else I've ever known.


red fish said...

Thank you for sharing. You have been in my thoughts and prayers.

rlbates said...

{{{hugs}}} to you, your girls, and your husband. A friend who lost her daughter way too young and is raising her grand-daughter told me (I asked how to help my sister whose husband just died) that I have to just listen to her. She says she "went crazy for a while", she was angry, she was sad, she was lost. Now she can remember her daughter with her grand-daughter, tell her stories, laugh about things, etc. It's okay to "feel" whatever it is. Just don't forget to breathe while "feeling" it all.

AngelMc said...

Oh Dr. Smak, I have checked your blog almost daily to hear from you and your family...wondering how you were doing....I so wish that there was something that I could do, something that I could say that would make your pain just a little less. Again, my heart goes out to you and your family.

Anonymous said...

We're out here, strangers but not strangers, those of us who wept for you when you posted that Henry was gone. Those of us that chuckled at the story about "nurse death/beth." Those of us who wanted to be your next door neighbors so we could pick up groceries for you, do a load of laundry, or just pour you a drink late at night and listen.

It's starnge this feeling I have that you are a friend who I just haven't met face to face. Whenever I hug a friend's child now I think how wonderful it is that she or he is healthy and has a future. I was visiting my nephews and nieces just before Henry passed on and this last trip to see them was mor poignant.

I'm not a believer in the supernatural so I won't say that I will pray for you but you and your husband and your daughters are on my mind and my heart goes out to you.


My deepest empathy to you and your family. I have followed your blog for sometime, but in the shadows.
It is normal and o.k to feel relief, and or numb.
I have walked the path of grief several times, and survived.
There is no right or wrong way, just yours and your families way.
His memories and love will always belong to you, they are yours.
Keep him alive in your heart and mind, its o,k to.
Time does heal, the memories of the great and wonderful things will never fade.
This is your journey, its unique and special to you however you travel it.
Kindest Regards Kirst.

Anonymous said...

PS...and Dr. Smak, what a great mom to talk to the girls about these feelings. They are so lucky to have you there to guide them.

Anonymous said...

Dear Dr. Smak--

I ache for what you are going through. I just lost my father--not at all the same thing, since he was elderly and ill and lived a full life--but I have also discovered a disconnect between what I expected to feel and and what I am now experiencing. I sense from your writing that you are a kind, compassionate, loving person and a lover of life, and I have to believe that will help you get through the difficult time ahead.

jt said...

Hi Dr Smak,
It's good to hear your "voice" again.

Anonymous said...

Praying for you.

Sybil said...

Thank you for sharing your feelings with us. It is so hard to have a child die. It is not something that any of us can just dosn't seem the right order of things at all. (My darling Goddaughter died in June of last year very suddenly and unexpectedly and it takes such a long time to get ones mind back into order)
The one thing I fould was and still is to an extent..that my powers of concentration seems to fail me and I seem to start and and stop things...
I pray that the coming days for you and all those will be ones of healing and progress.
Love Sybil in the UK

Karen said...

There is no shame in feeling relief from your long dread of his impending death. And I am sure you are right--a storm awaits you. God be with you and your family. You remain in my thoughts and prayers.

Margaret Polaneczky, MD (aka TBTAM) said...

Good to hear from you. Thinking of you and your family a lot.

Wabi said...

Delurking to say how terribly sorry I am for your loss.

From the outside, through your writing, it seems that you have managed to embrace the whole experience of your son's death ... not just the black dreadful parts that are undoubtedly there, but also the streaks of sunlight that occasionally broke through. And that is really something. You really are living it all the way. That takes so much guts. I admire you greatly.

Grief is different. Chronic. No obvious finish line to shoot for. But I have faith that even if you get lost along the way, you'll find value in the journey, and figure out a way to continue on.

Sending prayers to you and your family.

FrankandMary said...

I've wanted to leave a comment for a while, since Henry passed, but I don't/didn't in many ways feel a right to encroach on any of it.

I can understand the initial relief. To be prepared for the gathering storm? I don't think there is anything you can "do."
Life jumps the tracks..

pam said...

My heart goes out to you. I will keep you in my thoughts and prayers. Such a sad stage in your life. May your world be a little brighter every day for you and yours and may Henry R.I.P. forever. Love Pam xx