Tuesday, May 19, 2015

Global Trach Tube Awareness Week

It's Global Trach Tube Awareness Week again and I am honored to once again write something for it. Here is the link to their page;  https://www.facebook.com/GlobalTracheostomyTubeAwareness

And here's what I wrote:  

When I lost my son on November 17, 2014, the world stopped spinning. Suddenly there were no alarms, no Darth Vader sighs from machines, no 24/7 schedule of meds, no appointments to make or supplies to order, no good morning grins, no midnight cuddles, no reason to watch Sesame Street.

How do I start over in the wake of my personal tsunami?

Well, at first I didn't. First I had a mountain of "now" to consume. This whole grief thing is completely overwhelming and I had to let it overwhelm me for a bit. I let people help me, I let them cook for me and help me think. My brain stopped working for awhile. My best friend came over, made me tea, and helped me make a to do list.  Then when someone said "if there's anything I can do,,,," I could whip out the to do list and read it to them. 

They say it takes at least 3 months for the shock to wear off and real grief to start. I waited. After the funeral, my husband and I rented a Hippie Van and camped up and down the West Coast.. It was good to get away and not think. Coming home was pretty terrible, but I was ready to begin to deal with the catastrophic reality my world had become.

Step One: Sort through the debris

An unbelievable amount of stuff that had been precious became meaningless the moment he stopped breathing. So far I have mailed about 20 boxes and delivered about 10 carloads of medical supplies and personal things to people who can use them. I have also put out about 30 black trash bags of things no one wants. I'm probably close to 3/4 finished.

As I sort through the physical things that now have no meaning without him, I am also sorting through my mental and emotional self. The sea change hit my insides as well. We were a symbiotic team. I lost not only my son, but also my identity as his mom and my occupation as his advocate and his aide. Without him, so many things I was proud of are now irrelevant. I am disabled by grief. I feel like a stroke patient learning how to do absolutely everything again and not always sure it's worth the effort. I never know when something will remind me of him and I will feel another wave of grief overwhelm me and leave me gasping for breath.

Step Two: See what's left to rebuild my new life

As my house is evolving from ICU through mailroom into cozy ‚"empty nest" for my husband and me, I am discovering gems among the trash; things I had forgotten I owned and things I will keep forever in his memory. I am also rediscovering myself. I am so proud of the life we built together in spite of all the difficulties we faced. My role as his advocate may be over, but I will always know that I handle crisis beautifully. I learned to be so strong and powerful in defense of my son, now I need to be just as strong an advocate for myself. I learned wisdom and gratitude and patience and compassion from living with him. These are gifts I can take away from his funeral. He lived a beautiful life. It was my honor to be his mom. I will never stop loving him, or missing him, but I am learning to appreciate the person I am because he loved me.

Sunday, May 10, 2015

Mother's Day 2015

This week I realized that I still cling not only to Sam's memory, but to my sense of responsibility for his wellbeing. I suppose that makes sense because being responsible for him was close to 100% of my identity - or anyway 100% of my minutes - every day for year's and years. My NAME was Sam's Mom. 

But, in fact, clinging to that sense of responsibility is killing me because I no longer have any power to care for him. NONE AT ALL. 

And I have not released him to his new life. 

It was hard releasing Ben Forsberg. I can still touch him occasionally and I am so proud of him and I adore his wife and kids.  Still I had to let him go. I don't know how he is doing each day, I don't have a part in the big decisions of his life. He is my son, we love each other, but he's a grownup. 

I didn't have a lot of choice about releasing Ben. He would have left no matter what I did.  But I did have a lot of choice about how I let him go. I could have made it a lot harder for him. But I think a mom does what is best for her child and I really want what's best for him. And I don't think staying with me was best. He's better off where he is and I love him enough to know that. 

Wow.  Same story with Sam!  I didn't have a lot of choice about letting him go, I had a lot of choice about how I let him go, I made it as easy for him to leave me as I possibly could. He's better off where he is now, even though I have zero input in his "life" or whatever now. 

And I miss both my boys so much I can hardly breathe. 

"Do the hard thing that is best for your child" has always been my motto.  I haven't always lived up to it or been wise enough to know what course of action is best. Too often I have simply reacted and had to think and apologize later. 

This lonely Mother's Day I am thinking of Hannah in the Bible who graciously gave her precious little boy, Samuel, back to God. I'm trying to be gracious, but I just feel old.  

Wednesday, April 08, 2015

Future Planning

Today, Oscar Hammerstein says it all.  Confidence?

What will this day be like? I wonder.
What will my future be? I wonder.
It could be so exciting.
To be out in the world, to be free.
My heart should be wildly rejoicing.
Oh what's the matter with me?

I've always longed for adventure, 
to do the things I've never dared.
Now here I am facing adventure, 
Then, WHY am I so scared?

Next week it will be five months.  Obviously, that's a tiny, tiny bit of time compared to the almost 33 years we had together.  I'm still deeply grieving.  I never really thought he would go so soon.  I hoped he would die first, but not until I was around 80!  

I'm NOT around 80.  By dying so much sooner than I ever expected (or wanted), he gave me a lot of time to do just about anything.  

I'm free.

I don't know what to do.

I have taken many time management seminars.  I know the drill.  Make a to do list and prioritize it.  The trouble is I don't have a central Mission Statement to focus and bring order to my priorities.  It was "Keep Sam alive and happy" apparently.  Now that job is accomplished, what is my mission?

I've got lots of "to dos" and lots of goals (to regain health, get a job I enjoy and pays for bills and trips...) but I need a Mission Statement to bring it all into focus.

Grief is a journey of transformation.  I am trying to be mindful and leave plenty of room for my new self to be born.  I am standing on the edge of the next great adventure.  It's hard to plan when you have no idea where you will be heading.

Stay tuned.

Sunday, April 05, 2015

Perfect Storm

"And so, girls, we come to the Twelfth Station.  In this picture we see Jesus dying on the cross.  Standing by him is his Mom. She is so sad but so proud because she knows her son never did anything wrong but he chose to go through this terrible day because he was such a brave man and so full of love for you and me and everyone."

As I explain, I feel so many emotions. I'm once again proud of my own brave son who never did anything wrong and suffered so much so he could stay with me. I feel not only my own deep sorrow because he is gone, but I feel a connection to Mary who must have felt so much like me but more - more pride, more pain, more horror. After all Jesus died a public and most horrific death. My darling boy died peacefully, surrounded by love. 

And I feel anger because he is gone and my life is so emptied that there is almost nothing left of my life. He was my occupation and obsession every moment.  The soldiers divided Jesus' few possessions among them. I'm stuck with a mountainous pile of medical supplies, toys and clothes that must be divided up and I am the one deciding who gets what. So much that was precious became junk in the instant of death. I know much of it is precious to someone else struggling to care for her child. If I could only find that mom! I am angry that I have to deal with this.

And I am angry because in the four months since he died, we have lost two beloved pets!  Why am I surrounded by death? It's not fair, why me? These are questions I thought I had left behind long ago. They are still and always unanswerable but I am asking them. Again. Sigh. I am angry with myself for needing to torture myself with these pointless questions again.

But my two friends, ages 5 and 7 are looking at me expectantly. I pull myself together and go on. "When we look at this picture, we feel sad because we know that Jesus chose to let this terrible thing happen because he loved us. And we are sorry for all the times we have made him sad. He loves us and wants us to be kind and loving and thoughtful. When we are not, he is sad and we must tell him we are sorry."

Movement to my right catches my attention and I turn to see an angry face. Old, bent almost in half and furious, a woman clutching her pink plastic rosary is glaring at me like a cartoon witch. Charley moves to speak to her. She gestures furiously and he nods politely and comes back to us.  "We need to be more quiet."  

Okay. We were trying to be quiet, but we can try harder. 

I continue in a lower voice.  "Next is Station 13.  When they were sure Jesus was dead, the Roman guards let Mary and the others take him down from the cross and get him ready for burial.  They washed his body and dressed him in clean clothes."

Suddenly I remember doing the same for Sam. He turned green so quickly once he stopped breathing. Was that because of the infection or does everyone turn green?  His body was cold on top, but when we turned him to get his clean clothes on, it was still very hot underneath. We put him in a sweatshirt that said "This is what AWESOME looks like" and tucked his favorite toy in his pocket. 

Did Mary stick something special in with Jesus before they rolled the stone closed?  I bet she did.  I wonder what it was?

The angry woman circles around glaring at us again and approaches from my left this time. She is simply furious. "We have finished with the Stations of the Cross!  I don't know where you were when we were doing it, but you are too late. People are trying to pray and you must leave!"

There are so many things wrong with this that I am momentarily stunned. It seems so ridiculous!  I wanted to say: 
We were there earlier and did the Stations with the congregation and the girls had a lot of questions. 
I asked Father if I could take the girls around again to explain it to them and he was delighted. He gave us a special blessing and prayer before he left. 
It's Good Friday, the church is open and people are encouraged to do their own private Stations of the Cross.  They have been announcing this all through Lent. 
It's a big church and we are talking quietly and there are at most five other people in the church and they are no where near us.  
We are already at Station 13, we won't be much longer. You need to sit down and pray for patience.
Jesus said "Let the children come, for the Kingdom of Heaven is made of such as these."

Instead, I pick one of the worst replies possible. I say "I am sorry you are feeling cranky."  That did not go over well, naturally.

"I'M NOT CRANKY!" She loudly insists, glaring up at me with a twist of her neck that was probably painful. 

Now I am getting embarrassed. We are becoming a spectacle and this is pretty much exactly NOT what I wanted to teach the girls. I try to placate the angry woman, I try to feel pity, but she keeps interrupting me and talking louder and louder. 

Already emotional because of my own personal connection with the death of precious sons, I lose my temper and whisper through gritted teeth "I am TEACHING them to PRAY!" We are now two Harpies staring each other down across a battlefield littered with the scraps of my ruined Spiritual Exercise.

"Well you are teaching them WRONG!" She shouts over her shoulder as she retreats across the altar and out, slamming the door.

Aghast at my lack of self-control, I turn back to my youthful charges, whose eyes and mouths are gaping wide, and pull myself together. "So. Whenever we do something that makes Jesus sad, we should tell him. For example I had no business getting mad at that lady and so I need to tell him right now that I am sorry and ask him to forgive me."

Later, Charley summed up the experience: "It was a God Moment. The whole point of Lent is to be confronted with our sinfulness. You certainly were confronted by yours!"

I have no regrets about taking the girls through the Stations a second time. But I do feel very sorry for losing my temper and being disrespectful towards the angry woman. I made her carry the burden of all my anger, although she was most unwilling to do so.  She stormed out of the church bearing whatever her own pain is along with the extra burden of my anger. In that horrible moment, before the crucified Christ, she bore my sin. I'm sorry for this.  And I'm pretty sure Jesus forgives me, but she probably does not.  I'm sorry about that, too.

Thursday, April 02, 2015

Cozy Corner Breakfast

I'm entertaining a 7 year old this week.  It's a lot of fun but remarkably scare in moments of profound thinking.  We have made ketchup and yogurt and kombucha and colored the porch and gone "to Japan" (Mitsuwa shopping center) and go for walks every day and and and - but we haven't stopped to think much.

I'm very grateful for someone to keep me company this week.  Last Thursday my parrot died in my arms.  The cockatiel died last month at the vet's.  And of course, Sam left me on November 17, 2014.  On Friday morning after Charley went to work, the house was so silent and devoid of anyone who needed me.  It positively echoed with loneliness.

So I went out to breakfast.  Here's a poem I wrote while being amused by the family at the next table.  Apologies to anyone who already read this on Facebook:

Cheerful, tuneless singing snags my attention
Baby singer jerks back in mock alarm and shouts "OH NO" aghast
Then giggles with delight at his own perfect imitation.

The cycle repeats.

Parent watch. amused, resigned and helpless
As the soundtrack of their morning 
Is replayed on an endless loop.

Wednesday, March 25, 2015


I've been thinking about what we mean when we say "I'm praying for you". Is it like saying "How are you?" Is it, in fact, something we say by rote because it is polite and conveys a vague aura of general good will without costing much?

That would be bad. 

Chapter Three

When Sam was young, people regularly gave me a copy of "Welcome to Holland" - an essay by Emily Perl Kingsley on what it is like to give birth to a child with disabilities.  It is a wonderful essay and you can find it here:
Welcome to Holland

Someone also gave me a book written about the same time called "Hope for the Families" by Robert Perske and illustrated by Martha Perske.  30 years later, it's still in print and available at Amazon.com.  The illustrations are beautiful.  One of the very first things he says is "Accept the fact that the 'child of your dreams' never was and never would have been.  All parents must acknowledge this sooner or later.  Your problem: You must do it sooner."

Sam wasn't what I was expecting, but he was pretty terrific.  No one gets the child they were expecting, life just doesn't work like that.  These two thoughts helped me come to terms with the reality of being Sam's Mom and got me started on our wonderful 33 years together. 

Chapter One of my life is the 30 years before Sam was born. Chapter Two is the almost 33 years we spent together. Now, if my mother is anything to judge by, I may have a Chapter Three! She's 86 and beginning to consider slowing down.

My plan, once I got used to the idea of being Sam's Mom, was that he would die before me but close to the end of my life.  Then I wouldn't have to wait very long to join him in Heaven.

Once again, life has thrown me a curve ball.  

This is rather a shock.  I knew in my head that he was dying, but I really didn't believe it in my heart. In the last couple of years, I did try to look ahead and make a plan for surviving him, but I was too busy taking care of him to really think ahead much and it felt like giving up.  And, honestly, I can't imagine a better way to spend my days than being Sam's Mom.

Only suddenly, unexpectedly, here I am, Sam-less and healthy.  Four months and counting into my new life and I'm ready to look around and figure out what to do with my days until I see my boy again.

It's not what I was expecting, but it's got some rather intriguing possibilities.

No one gets the life they plan on.  Life just doesn't work like that.