August 2014 – Sunshine, Angels and Rainbows

Waiting

Today we saw Darcy’s therapist for the first time in over a month. She has been doing so well, so we had agreed on spacing out her appointments a bit. There is a great deal of solace in the fact that we found ‘the one,’ this perfect woman who has spent so many hours with Darcy and I bonding over our shared loss. She has saved me in so many ways and truly helped me to become a more patient mother.

We often color, or play with legos, cars or a dollhouse. In the beginning, Darcy would play act with cars and create accidents, police, ambulances, everything that her little mind witnessed the day of the accident. Darcy wasn’t there when it happened, a reason for which I am eternally grateful. She came home to the aftermath, the helicopters, police tape and onlookers, she saw my car across the street and she knew that something really bad had happened.

We’ve worked hard with Darcy to help her identify her emotions instead of acting out and she has made incredible strides in opening up to her therapist and my husband and I. It’s hard to watch your child go through the loss of a sibling at any age, but at 5, death is still a foreign concept. She acts so mature sometimes, that I forget that she really still doesn’t understand.

Her therapist asked her today if she was scared that something would happen to me or Parker. Unsurprisingly, her answer was yes. She knows that I lost my mom to breast cancer and often asks me when I’m going to die, or if I’m going to get sick. She doesn’t get it and I’m mad that she has to.

Her therapist asked her tonight if she wonders if Parker and I will have more children. At first I was a little taken aback by this question because I really didn’t want to discuss my family plans with my 5 year old. What she said, shocked me. She wanted to know if I was going to have another little boy. She said we would call him Benny, Captain Crazy. She thought that we could make another Bennett. It broke my heart to explain to her that there was only 1 Benny. I told her that there was only 1 Darcy too, but she had just met a woman named Darcy on the walk, so naturally she corrected me. I tried to explain that every child is different, they look different and have different personalities. I reminded her of how different she and Benny were. I think she got it, but I don’t know. The fact that she thought that we could have ‘another Benny’ surprised me.

I love that she believes in magic and fairies and santa clause. I love her innocence. I wish we could all hold on to those beliefs as adults. At the same time, I wish she were older, it’s such a fine line to walk. I wish I could talk to her like an adult and know that she understands what I’m saying. I wish she were old enough to read this blog, I honestly cannot wait until she is. I want her to understand so badly. She’s my best friend, now I just have to wait for her to grow up.

I’ll be here future Darcy, waiting…

Benny’s Blanket

It was his prized possession. When he was tired he would run over to his crib and pull it through the bars. He would climb up on my lap in the rocking chair and snuggle that blanket to read a book and settle in for sleep with his bop (pacifier). I had to wash it. Believe me, I didn’t want to, but it was getting pretty gross. I’m sad. His smell has long since vanished, but now I know that I’ve washed away his touch. You never lose someone all at once, but rather in pieces. I knew this. Doesn’t make it any easier.

Dr. Seuss

Tomorrow Darcy starts 1st grade. I’m sad. I cannot believe that this is all happening so fast. How is it possible that time has actually passed? I’m watching her grow and the last time I saw Benny he was 17 months. How does that work? It doesn’t make sense to me. They should be growing up together.

I read Dr. Seuss to Darcy tonight and I found a lot of knowledge in those silly rhymes. Who knew?

‘I’m sorry to say so
but, sadly, it’s true
and Hang-ups
can happen to you.

You can get all hung up
in a prickle-ly perch.
And your gang will fly on.
You’ll be left in a Lurch.

You’ll come down from the Lurch
with an unpleasant bump.
And the chances are, then,
that you’ll be in a Slump.

And when you’re in a Slump,
you’re not in for much fun.
Un-slumping yourself
is not easily done.

You will come to a place where the streets are not marked.
Some windows are lighted. But mostly they’re darked.
A place you could sprain both your elbow and chin!
Do you dare to stay out? Do you dare to go in?
How much can you lose? How much can you win?

And IF you go in, should you turn left or right…
or right-and-three-quarters? Or, maybe, not quite?
Or go around back and sneak in from behind?
Simple it’s not, I’m afraid you will find,
for a mind-maker-upper to make up his mind.

You can get so confused
that you’ll start in to race
down long wiggled roads at a break-necking pace
and grind on for miles across weirdish wild space,
headed, I fear, toward a most useless place.
The Waiting Place…

…for people just waiting.
Waiting for a train to go
or a bus to come, or a plane to go
or the mail to come, or the rain to go
or the phone to ring, or the snow to snow
or waiting around for a Yes or a No
or waiting for their hair to grow.
Everyone is just waiting.

Waiting for the fish to bite
or waiting for wind to fly a kite
or waiting around for Friday night
or waiting, perhaps, for their Uncle Jake
or a pot to boil, or a Better Break
or a string of pearls, or a pair of pants
or a wig with curls, or Another Chance.
Everyone is just waiting.’

Oh, so well put. Every day is a hurdle, and when you think you’ve gotten through, there’s another one tomorrow, just waiting for you. There are so many important decisions that need to be made that you cannot wrap your head around. I’m terrified of making any at this point, am I in the right frame of mind? Your ‘people’ disappear and in the end it’s just you trying to ‘unslump’ yourself. I think the ‘Waiting Place’ is where I’m stuck. Waiting to make a decision, waiting to feel something, waiting for someone to tell me that this was all a nightmare. Just waiting.

I started reading this book to Darcy tonight because it’s positive and upbeat, talks about all of the great things that she will do. It also talks about the reality of life, how harsh and cruel it is, how much we can really lose. It’s amazing how different things look through my grief glasses.

Garden Update

Disability Insurance

My disability insurer had decided that I need to be evaluated by their own psychiatrist to continue my benefits. Had that been explained to me, then I would have been able to prepare myself mentally, but that was never said to me. Instead, I returned home from vacation with a required meeting set up for today with their therapist-in Boston.

I called right away to see if I could a) change the appointment time; b) change the appointment location. I was told by my case manager that I was required to provide 5 days notice. I told her that I was out of town and did not receive what they had sent in the mail. I also told her that I do not drive beyond 15-20 miles from my house. Her reply was that it is not their problem that I was on vacation for 3 weeks and that driving was not a requirement of my job, therefore I had to figure a way to get there or lose my benefits.

If you know me well, you can only imagine that I handled that kind of attitude with grace and kindness…uhuh. Suffice it to say, she was trying to see what she could do to change the appointment (‘oh, we’ve already paid the therapist’). When questioned about why they wouldn’t just seek the advice of my therapist that I’ve been seeing for 9 months I was told that it is their right to have their own folks ‘evaluate’ me. So Parker took off the morning to drive me to Boston to see ‘their’ therapist.

When we pulled into our spot on Beacon Street, a gold Chrysler 300M pulled into the spot right behind us. I think my stomach fell to the floor as I fled towards the building. I hadn’t encountered a car that looked like mine yet and the timing couldn’t be worse. Mine was consequently destroyed (as it should be).

So I walked into the therapists office a little in shock. I was already seriously worried about having to talk to a complete stranger about everything, but seeing the 300 really pushed me over the edge. I had not seen my therapist in 3 weeks because we had been on vacation and then she was. Last Saturday I had my first little panic attack since the accident. I was angry. Here I was paying into insurance and they were doing what was in their best interest, not my own. By the time I walked into that office I was a mess. An angry mess, but a mess.

Let me tell you about this ‘evaluation.’ Instead of calling my therapist and asking whatever had triggered this whole ‘evaluation’ in the first place, they will be using the following information to determine if I will continue to receive benefits – a 300+ true/false questionnaire with questions like, ‘do read mechanics magazine,’ or, ‘do you want to kill yourself or anyone else.’ Talk about getting to the point! Then I had to do what the therapist called a cognitive review or something of that nature and read sentences or draw pictures. He then asked 5 questions about depression (in which he was very leading) and reviewed a questionnaire that I had filled out. This is supposed to take the place of meeting with my therapist one on one for 9 months, double sessions, once a week? Are they serious??

He didn’t pry, but asked questions about the accident, which frankly, I don’t really talk about. Imagine telling a complete stranger in the span of 2 hours every minute detail about the worst 7 seconds of your life. It took me months to talk to my therapist about it. My favorite part of it all was when he asked me the 5 depression questions and told me that I scored high. Wow, big freaking shock there you ass! And then he went into the benefits of meds to which I shut him up. It’s just not for me.

I’m angry that my insurance company put me through this. I had a shit day. I had a shit weekend leading up to it. And now I have to wait a week to find the results. I felt forced to sit in that room and answer absurd questions from a stranger. I hope that none of them ever loses a child and have to go through what I did today. Screw you Mutual of Omaha.

Kisses

Darcy and I went to the library yesterday. When I walked in, there were tons of toddlers in the kids area, running around, making noise, and I couldn’t help but smile. We didn’t go there often with Benny, but had been in the fall right before the accident. It’s hard for me to be there.

There was a little man there, maybe 16-18 months. I was looking at him and smiled, then went to search the computer for books that Darcy wanted. I wasn’t really paying attention to what the kids were doing until one of the mother’s called out the name Bennett. I couldn’t believe it. I had never met another Bennett when the dude was alive, I couldn’t believe that there was one in the library. His mom asked him to put the bus away because they were leaving. Our Benny had a yellow bus, it was his favorite. It was the only toy I ever let him bring to Sandy’s and he would vroom it all over her house.

I’ve been seeing his name everywhere since I’ve been home. Most recently in a book I read (couldn’t tell you what it was about because my focus is all screwed up again) the characters last name was Bennett and she had PTSD, how appropriate. Parker’s Aunt once told me she considers this ‘a kiss’ from our children. It’s a beautiful way to think about it.

While in Canada, I had a Benny dream, the first in a long time. He was older, maybe 4 or 5 and dressed in a tux or suit and I think he was going to be in someone’s wedding (bizarre). He looked at me, all handsome and grown up and told me that he loved me. It was a surreal experience, because even in my dream I realized just how significant this was. Some part of me knew that he was gone, this wasn’t one of those dreams where you wake up and think he’s still alive. I knew in my dream what a gift this was. Tara dreamed about him a few days later. Keep it coming bud. We’re used to being on our toes where you’re concerned.

Some Perspective

So, as I’ve said before, my heart wasn’t really in the walk this year. Believe me, I’m not proud to admit it, but it is what it is. All of a sudden losing my mom at the age of 49 didn’t seem like the greatest tragedy anymore.

Sure, I trained, but I think more to get me up and out of the house. It gave me something to focus on other than the tragedy that has become my life. Sure I raised the money (and then some) because we are blessed to have some amazing people in our lives. I couldn’t believe that after all of the support that we received following the accident, people still donated to my 3 Day walk.

So, if I’m being honest, I wasn’t really excited to walk. It felt weird to be there to try to raise money for cancer when someone can die in a car accident just as easily and there’s not a thing that you can do. I was very conflicted this year. How do I honor my mother and grieve my son simultaneously?

Opening Ceremonies hurt. I stood there amongst survivors and those who had lost their mothers just like me and I felt horrible. How can I grieve for a woman who lived 49 years (which now seems long to me, amazing what a little perspective can do), when my son didn’t even get 18 months? How can I even begin to wrap my head around it? I really wanted to leave. I was ready to admit defeat and walk away. It no longer felt like my battle. There was so much sadness and all that I could feel was everything that I had lost.

What kept me there was all of those donations, all of those people that I felt that I had made a promise to. So I walked. Day 1 was rough to say the least. I blame it on the fact that Tara is now 30 and this has caused both of our bodies to age. Truthfully, I think we both had a shit year and probably weren’t ready to deal with the walk not only physically, but mentally, but we forged on.

I didn’t expect Bennett to be there, I should know better by now. I had noticed as we were walking several different banners with sunflowers. I smiled and took it for the sign it was. As we were crossing the street, I went to look closer and stopped dead in my tracks as I noticed the dates on the banner-the day he was born and the day he died. Tara had to yell at me to hurry up and take the picture because the light had changed and I was still in the middle of the intersection gaping at what was in front of me.

Mind blown, once again, but it was yet another sign from the little guy that I was where I was supposed to be. We then passed by the Bennett Arboretum. Sign number 2. Our tent number, just happened to be B-88, there was that number again, this time preceded by the letter B. Never mind all of the coke cans that read ‘Mom’ or the fact that the only song that I heard at the last pit stop on Day 3 was ‘Carry on.’

We walked through crowds of people, all cheering us on. People were on the side of the road handing out tylenol, water, soda, jello shots (!), you name it. They came out in droves to support us walkers. I’ve walked Boston for 9 years and I have never seen anything like the community support that showed up in Michigan (sorry Boston!). The crew was phenomenal and so encouraging. It made those first 22 miles bearable.

When we made it camp that first night I felt relieved. I was beginning to remember the joy that comes out of being involved in an event like the 3 Day. We sat down to dinner and watched the different entertainment that was on the stage. Up walked a woman that was 32 and stage IV – perspective. She was diagnosed at the age of 29 with Metastatic Breast Cancer – perspective. She was emotional, she was scared, she was inspiring. The light bulb dinged and suddenly I remembered why. I remembered that I did this walk to heal from my mother’s death, but it has become so much more to me. I remembered that this wasn’t about me or my son, but something so much bigger (that was a hard pill to swallow, not sure how long it will last). I remembered why I walk, why this is so important to me. I had to look outside my own grief, which wasn’t easy once it’s become a part of your every day life.

Then I looked at my life. What if I had been diagnosed at 29? How would Darcy’s life be? Would there even be a Benny? For the first time in a longtime, I actually felt grateful – perspective. Now I’m not going to tell you that Days 2 & 3 were a breeze, but remembering why I was there, feeling it in my bones that I was 100%, absolutely where I needed to be made it easier to carry on.

It was a good weekend. It was a good reminder to me that there is life outside of my grief. Sometimes we’re just so blinded by it, that we can’t see. It was a glimpse. Now that I am home again and on the other side, it sucks. But I will hold onto everything that that 32 year old woman said to remind me why I walk. In this instance, I was not powerless or helpless. I could fight back, I could walk. I don’t know yet how to ‘fight back’ after what happened with Benny, I’m not sure if I ever will. I think that’s going to be one of my biggest obstacles, feeling powerless. At least for one weekend, I had a little perspective, a little breather from the endless grief. Thank you 3 Day. Thank you mom and Benny for keeping us moving.

Stupid Things People Say

I could write a book. Or perhaps two now. I suppose they don’t understand because they haven’t walked in my shoes. I suppose they can’t know because their child is still with them. I suppose I don’t care.

I’m not sure which is worse, the people that ask me if I’m ok, or the people that just ignore the fact that I had a son and pretend like all is well with the world. Probably the latter. At least the people that ask me if I’m ok (about the half the time) are actually expecting an honest answer. Not that there is one that I can give.

The ones that ‘pretend’ that nothing’s changed, well I’m tired of you. I’m tired of pasting a smile on my face so that you can go on feeling comfortable with the situation. It makes my skin crawl, it makes my pulse quicken and my head feel like it’s full of buzzing bees. How dare you sit there and smile and expect me to be ‘ok’ because you cannot handle the alternative!

I can’t stand the look of pity, pure, unadulterated sadness that some people give me. I cannot be around you. Please do not feel bad for me. I already feel bad enough.

I just ask for understanding. I just want to honor his memory. Please do not force me to pretend.

9 Months ‘AA’

I look at the date on the calendar and it reads 8/8. It’s been 9 months since the accident, the same amount of time that it took me to grow him inside of me. 9 long months of pain. 9 months to physically heal from the accident.

I’m exhausted, I’m sad, I’m hurt and I’m alone. How I hate it when Parker is not in bed next to me, reminding me that we’re in this together. Holding my hand when I need him to and kissing me to remind me that he’s here.

Last night was a doozy. We hit some pretty bad weather outside of Colorado and I was terrified. Parker did his best in his exhausted state to try to keep me calm, but I panicked. I held onto Darcy tightly and cried, so scared that I would lose Parker or her, that something would go wrong again. Parker kept saying it would be ok, Benny would take care of us. I have to wonder though, why wasn’t my mom taking care of Benny and me during the accident? Why were we forgotten?

We’ve been driving through the Denver area and I feel so exposed. There are no trees, no hills, no curves, just flat land and mountains. When it storms, you see the lightening touch down. So much open space.

I’m tired down to my bones. I ache to have something that I will never have again. I look at this new version of myself and I’m not happy with what I see. I’ve never felt so beaten down by life.

I want to return to the living, but I don’t know how. I cringe at meeting new people, to have to answer the question about how many children I have. I despise driving. The furthest I’ve driven myself was 40 minutes. I cannot handle much more than 20 minutes by myself in the car.

I am angry at people that cannot understand. I have met strangers that have been truly amazing, loving and kind, yet some of the people closest to us are disappointing. I don’t know how to handle this, I don’t know what to do with this anger. Is it misplaced, no doubt, but it still exists and I still hurt.

I’m tired of the purple elephant in the room. Yes my son died, but please don’t forget that he lived. That he was loved. Please don’t feel weird talking about him. I’m so tired of hearing ‘I don’t want to upset you.’ I’m sad all the time over losing Benny, if I cry that is my way of working through it. Please don’t make me feel bad about it.

Most of all, I miss my son.

Chasing The Sun

We are on the last leg of our 3 day journey West to our friend Ed’s wedding. I have taken in the plains, loads of windmills, corn and some of the most beautiful open spaces that I have ever witnessed.

We have had 2 of the longest days as we continually drive into different time zones. We cheer as we gain hours and sunlight on long stretches of open road. We are in affect going back in time, how I wish it were that simple.

Parker is doing all of the driving. Maybe ‘Old Sheryl’ would have dared to try to steer this monster rig, but there’s no way now. We are essentially on a huge bus, towing Sven, the mighty Volvo.

I was unsure how I would feel being in a vehicle for so long. It’s more like a house on wheels, Parker had said. It feels like a train, which is somewhat comforting. Then you realize that there are no tracks, just hard, unforgiving pavement. It’s been tough to say the least. While Darcy and I sat curled up reading, I imagined the worst several times. My mind conjured up these awful images of impending doom. The nightmares have been pretty graphic too. The amount of times that I have had to tell Parker that I’m nervous or uncomfortable is a little crazy. It’s like the trip has kicked my PTSD into high gear again. I just keep thinking that I can’t afford to lose Parker or Darcy now too.
But I’ve almost made it. I can just about taste the fresh air in my lungs from the Rocky Mountains.