Knowing Alone

You don’t know.
I’m glad you don’t know.
There are so many things I know that I didn’t know before.
I keep learning things that I don’t want to know.

It hurts to be alone with these things I’ve never wanted to know.

Still, nobody can know them except for me.

I know sadness. I know pain. I live grief. But I don’t know what to say to you about your sadness, pain and grief. I know that words never brought me comfort.  Not much has made sense in the AFTER. I’m not saying that there aren’t words out there that can bring someone suffering a loss some comfort and peace. But I don’t know what they are.

I just know what you don’t know.

You don’t know how the most innocuous statements can trigger me so unexpectedly.  Like when my son was in his honor choir concert and the announcer man was talking about the importance of music in schools and thanking all the parents for getting their kids to the extra practices on time because that is a “part of parenting”.  Fine statement, right?  But I started crying. Because getting my kids to practices doesn’t seem like “part of parenting” to me at all.    It seems more like being “part of cruise directing”.  Because parenting for me is not about the logistics of getting 4 different kids to different places at the same times.  I have so many wonderful people helping me with that part.  Parenting for me is living, in my mind, the worst possible case scenario for anything and everything that happens with my kids. The phone rings and before I can pick it up I’m already sitting at Harborview at the bedside of someone I love waiting for the doctor to call time of death.  Reliving. Parenting for me is listening to my youngest son cry “I want to be with you” when I’m walking out the door for the fourth evening that week and leaving him with a sitter because I either have to work or attend another one of my kids’ events that will run past his bedtime.  It’s wondering what sort of damage I’m adding to what’s already been done.

You don’t know the sadness that comes with the knowledge that my support group has grown too large.  There are too many of us.  There is a waitlist to get in.  You don’t know that as much as we all need that support group, every one of us is ready to give up our place so that nobody has to be on a fucking waitlist to get some help.

You don’t know that my mind races so quickly I can’t even keep up with the thoughts.  Or maybe it races so I don’t get stuck on any of the more horrific thoughts.  Like how every time my pre-teen son gets upset and slams the door to his room, I am petrified–beyond petrified–that he’s going to hurt himself–because of something I said or didn’t say and because it “runs in the family”.

You don’t know how it actually feels like a physical punch to my gut-it practically doubles me over in pain, every time I walk into the preschool and see an announcement for an upcoming “Daddy-Daughter Dance”.  I know that sign is posted there.  But it’s like a sneaky, scary monster hiding behind the door that jumps out at me.  I am startled by it,  every single time. You don’t know this because there’s no way you would.  What you see is my Kristen suit and a smile on my face as I greet my little guy who may or may not be happy to see me (depending on whatever matters to a 5-year-old at any given moment).

You don’t know how difficult it is to watch one of my kids do something really cool (like the honor choir) and know without a doubt that my husband would be so proud of him.  But how sad it is for my husband that he doesn’t get to be here.  Even more sad for my kids who don’t have their dad in the audience to support them.  I can be present at as many events as I can physically attend, but I can never make up for daddy’s absence at these events.

You don’t know how I can’t get good mental health counseling for my children.  Good counselors do not accept Medicaid.  Counselors will accept cash.  I will give them cash to help my children.  But then I sit through session after session wondering why I’m listening to this person who is not there.  Who doesn’t know.  At the end of the day, there is just me.  I am the only person on this earth that loves and cares for my kids the way I do.  At the end of the day, I am alone in this parenting.

You don’t know how my 6-year-old daughter’s counselor has been listing off the characteristics of a child with ADHD and I’m thinking–“Holy shit.  She’s talking about me.  I have ADHD”. Then in the next moment I’m sitting on my hands to keep from tearing my hair out because what does this ADHD stuff have to do with my child’s anger and grief? I am paying CASH for fucks sake.  PLEASE stop reading this book to my child about how all dogs have ADHD.  I’m about to scream.

You don’t know how counselors that I pay CASH for come up with ever-loving complicated “systems” of reinforcement and consequences for my kids.  They don’t know how asking me to pull together and maintain this “system” is maybe the thing that will put me over the edge.  But I still try.  They tell me that I need to put together a “simple” collage book with my child-one that’s all about said child and daddy.  Put it in a plastic baggie and close it with duct tape so it can never get dirty or wet.  WHAT?  I don’t have time to check my kids’ homework, let alone spend time ALONE with one child (what are the other kids doing at this time?) to make a book that they can’t ever take out of the bag?  Maybe this is my newly, self-diagnosed ADHD kicking in-but I don’t understand the sense of that.

You don’t know how much my body shook as I held my mother-in-law last weekend because she is going in for major surgery and I know she is terrified that she won’t come out.  You don’t know how I locked myself in her bathroom and cried because–oh my gosh.  Because of so many things.  My kids cannot suffer another loss.  I cannot lose her.  I have grown to love her and appreciate her.  We have a relationship. She is Jake’s mother.  Jake would’ve been by her side every step of the way, giving her courage and making her laugh.  I have no courage to offer.  I have fear.

You don’t know how much I hate myself for wanting to do things for myself.  I’m not just talking about a “nice bath” or a girls’ weekend getaway.  I am not going to pretend to be selfless or some kind of martyr.  I want things too-things that don’t have to do with the kids at all!  But I know kicking and screaming and flailing myself around on the floor doesn’t actually work.  I don’t know how to make it work and if I figured it out-would I just hate myself for actually doing that thing for myself?  In our modern American culture, people give you lip-service about how moms need to take care of themselves in order to take care of their kids–the whole airplane/oxygen mask thing.  But then society frowns upon moms who do just that.  Because how are we supposed to squeeze in “me” time between extra honor choir practices, birthday parties, “mandatory volunteer hours” (okay what the fuck is that even supposed to mean?), work, counseling, laundry, sports practices, math team, school projects that are supposed to be completed with “limited parental involvement”, all while making sure our kids are eating organic, well-balanced meals, brushing their teeth WELL, flossing (haha), showering WITH soap, changing (and/or wearing) underwear, and taking them on field trips to homeless shelters so they can truly understand how privileged they are?   I want more than that.  I hate how selfish that sounds.  But that’s my true confession.

You don’t know these things, because how would you?  Just like I don’t know you.  I don’t know what to say to loved ones who have lost (or are losing) their loved ones.  I don’t know what to say to strangers who are suffering loss.  I don’t know what’s under your suit-the things that hurt you and scare you.  But it’s so important that I realize that I don’t know and you don’t know.  The best looking, fanciest, perfectly creased, cleanest suit could be hiding fear, pain, grief, trauma, illness, anxiety, nightmares, sadness, panic, anger, guilt, regrets and more.  I wish I had known more about what was under the Jake suit before it was too late.

 

 

 

 

The Color-What Helped

I’ve spent a lot of time on this blog complaining away about things people did or said that although well-intentioned, were not helpful. A friend recently sent me an article on grief and I am so glad I read it. I was surprised to notice that the author was able to come up with some positive outcomes from her very tragic loss. Given my newest attitude about seeing the world through color, I’ve been thinking a lot about possible silver linings. Although that is still too hard right now, I have been able to think about things people did or said that were and continue to be so helpful.

My parents, brother, his wife, and family from across the country.  There is no way to explain how they’ve all sacrificed to help me when I needed it most.  Help came in the form of taking care of my very basic needs, like picking my kids up from school so I wouldn’t have to see anybody to bathing my kids because the very thought of it overwhelmed me (and still does sometimes).  My parents cancelled a dream trip to Ireland so they wouldn’t leave me (the company never gave them their money back despite the fact that they had travel insurance but that’s a rant for another day). My brother left his restaurant in the care of his wife and staff who took over for him (the goodness of people extends so many degrees of separation) so that he could take care of me.  My aunts, uncle, and four cousins traveled from NJ to take care of me.  They were careful to spread out their visits because they all knew that I would have a ton of support initially–so they visited in spurts over the next few months.  One aunt was there at the very beginning of the AFTER to navigate me through my days.  Days when I couldn’t think, hold a conversation, remember small things, or even return to my home.  She was there for me step by step.  Reminding me of what I needed to get done, who I had to call, where I could stop and use a restroom (because I kind of lived out my car initially during the days while my boys were at school–not ready to go to my home yet).  My cousins separated their visits in the couple of months that followed–taking my kids to birthday parties (because I still couldn’t bring myself to do things like that), organizing my home (especially certain rooms), cooking for my kids, making sure my kids got homework done, etc.  They both literally said “I am here for you.  Tell me what to do”.  When I still couldn’t think at that point, they just took over.  I needed that.  I’m not saying this would work for everyone–but I really needed my loved ones to come in and just take over.  My uncle, aunt and other cousins came together around Christmas time.  I couldn’t even think about Christmas.  They put up my tree and decorated it while I sat in another room and sobbed.  I don’t even know if they know what a big deal that was.  It was everything at the time.

Jake’s friends.  They took over all the things that needed to get done in the immediate AFTER.  They wrote his obituary, planned the service, and set up/cleaned up after the service (because I was just a hysterical mess–there was no way I could have folded a chair).  They even paid for all of it–which was a huge deal.  In the AFTER, money and finances became a really big concern, so any help in that area was needed.  More about that in a minute.  Despite their own grief, Jake’s friends checked in on me, sent me packages, helped me figure out things that needed to get done that I never would have thought about, made sure I had Jake’s outgoing voicemail message saved to my computer so the kids and I could still hear his voice, patiently took many, many phone calls from my kids, and one of his friends even gave me a car!

My friends.  This subject could be a book all on its own.  I’m not even sure where to start or how to organize my thoughts about my friends.  While I remained at the hospital with Jake during those four days and nights when time stood still, there were several exceptional people who made sure I was never alone.  Friends who didn’t ever ask me if they should come (because I would have said no).  They just came and stayed.  They didn’t care that I wasn’t very good company.  They just stayed with me.  One friend spoke with nurses and doctors and asked all the right questions and wrote down detailed information for me because I was unable to think about anything.  Other friends brought me toiletries and changes of clothes (desperately needed and probably not so subtle hints) and spoke with whomever necessary to find me a place to shower.  Another friend went out to my parent’s house to help my mother manage my four crazy children who had no idea where either of their parents were.  Her husband took the school supply lists and went out and got all the things my boys needed to start school in a few days.  She even ran a half marathon in Jake’s honor that weekend.  Another friend did all the work with the organ transplant people in getting Jake’s handprints made so we would have those forever.  That was not an easy task–and very messy.  I really didn’t want to have anything to do with it–but my friend knew that I would appreciate and need those handprints  later.  So, she did all the dirty work.  My friends talked with hospital staff and helped me climb into bed with Jake to sleep with him one last time–something I would have never even thought to ask.  Friends who previously didn’t know each other, exchanged contact information with each other and with my parents, in order to coordinate the “care and handling of Kristen”.  They made sure I was never alone in that hospital that became my whole entire world.

Once I was back at my parents’ house and my children had been told, friends came from all over the place.  They brought kid friendly food, they brought their own kids in order to play with and distract mine, they brought me my favorite coffee, but most of all, they came and sat with me.  I couldn’t hold a conversation.  But they came anyway.  Unbeknownst to me, they worked to pull together an online sign-up sheet to bring my family meals for the next couple of months. People contacted this group of friends to find out what I needed (because I had no idea what I needed and people sensed that). A friend had her husband make Costco trips for me for months and then deliver to my house. One friend had someone from her church come to my house several times and clean my house for free!  Once I returned home, I would sit outside and people would just show up, kids in tow.  They sat with me and fed my kids and forced me to go out to lunch.  I wasn’t ready to stay in the house by myself for a very long time.  My parents often stayed with me, but it took a toll on them.  Some friends came for sleepovers so that my parents could have a break and I wouldn’t be alone.

Close friends from high school flew from around the country to visit.  I hadn’t seen these friends in ages.  I don’t think I’d seen one of my friends since my wedding in 2003!  But they left their kids, husbands, jobs..their lives to come and be with me.  They hung out with me and slept in bed with me  and ran with me.  They took my car and went food shopping and cooked for my kids and played with my kids.  They fixed their own meals.  These types of help may seem so small to someone reading this.  But they were not small.  They were so significantly huge–I can’t even find the right words.  Although I’ve been friends with these people for many years, my friendships with them have deepened and changed because of the things they did to help me.

New friendships developed as well.  People who continue to want to spend time with me (despite the fact that I am completely self-absorbed still).  Friends who keep me running–literally.  These girls have run with me through the fall, winter and now into the spring.  They have run with me in 20 degree weather.  They have run with me during downpours.  During these runs, these ladies have become my “color” (which makes sense if you read my previous post about shades of gray).  I look forward to being with them.  They are willing to try new things with me.  We laugh….a lot.  But they’ve cried with me as well.  They also never hesitate to give me a big sweaty, smelly hug at the end of a run.  They helped me develop a “life”, when I was convinced mine was pretty much over. They are the ones who stayed.

Friends from near and far called me, texted me, and emailed me.  For the most part, I never responded.  It wasn’t about them–I really appreciated the fact that they were reaching out to me.  I just couldn’t talk or write.  My brain did not work well enough for me to do these basic things.  Thankfully, those friends have persisted in their calls and texts–and only recently have I started responding.  I even have a friend who sent me letters–long letters–in the actual mail!  I don’t think I’ve received letters like that since college.  That takes a lot of time and effort in this day and age.

Then, there is social media.  Say what you will–but for me, its been an incredible way to stay in touch with people I’ve frequently wondered about, but thought I would never see/talk to/know about again.  People from my childhood, high school, and college, who continue to send me messages letting me know that they still think about me and pray for my family–they check in on me.  These check-ins mean so much.  The people who plainly state “I don’t have the right words to say-but I am thinking about you”.  That’s all it takes for me.  When I posted about a beer I had fallen in love with, friends from near and far (including friends’ husbands) researched high and low to try to locate this beer for me.  When I mentioned my love of cupcakes, an old friend from high school actually had a dozen delicious cupcakes delivered to my door.  Friends have reached out and because of that, I’ve made deeper connections with people and sometimes brand new connections.  It makes me feel like the whole world is my friend.

My job.  My boss is absolutely incredible.  I am fortunate enough that she is also my friend.  She taught me about the “Kristen Suit” and has had many wise words of wisdom that really have struck a chord with me.  She gave me space and never pressured me to return to work.  She made gentle suggestions that encouraged me to start back to work slowly when I was ready.  She assured me that going back to work would be the easiest thing I had done in months.  She was right.  She continues to work with me, to help me get everything I need out of my job.  I swear there are some months where I only work 50% of the hours I am supposed to work because of sick kids at my house, or other things that come up.  A lot of times, I still have problems with focus and attention and tend to forget basic things (like my timesheet).  She has been remarkably patient and understanding with me.  She bends over backwards for me–and I know I am so lucky to be working for her.

The community.  Particularly from the boys’ elementary school–the community supported us in ways I never would have imagined.  People I didn’t even know showed up at my house with meals and offers to help.  The school rallied around my boys.  Every single teacher they’ve had at that school, past and present, attended the memorial service.  I will never forget how I felt when I saw all of them walk in. It was a feeling I can’t describe.  The teachers, the nurse, the principal, the office staff..they all take care of my boys.  That school is like a second home to them.  The PTA sent in a cleaning crew.  They gave us gift baskets at Christmas.  We had “secret Santas”-and to this day I’m not really sure who they were, that left gifts on our doorstep. To this day, all I have to do is ask for help when I can’t be in four different places at one time and people eagerly assist me.   From the younger ones’ preschool, there was also some support.  Several parents got involved with bringing us meals, one of the dads took on a legal matter for me pro bono, and a staff member who is a tax accountant, did my taxes this year for free.  As much as I have the desire to run away a lot of the time, this community keeps me here.

Money.  This became very complicated and I hesitate to even write about it because it’s such a sensitive topic.  Jake and I have always had separate bank accounts.  Jake was very much the breadwinner of the family as I only worked part-time.  Jake paid all of the bills.  To be honest, I didn’t know a thing about our finances.  When he passed away, I was not allowed access to any of his accounts because his name was the only one on them.  Money was a significant cause of concern.  Almost immediately, one of his friends gave me a check to cover a few months worth of expenses.  More of his friends, sent me checks saying they “owed” Jake that money.  One of my friends also gave me money (instead of donating to one of the charities in Jake’s name).  I likely wouldn’t still be in my home if it weren’t for their generosity.  We were awarded scholarships for different activities that the boys wanted to get involved in that I couldn’t have afforded at the time.

I noticed a lot of my posts up until today have had an underlying (or outright) negativity.  For today at least, I believe I’ve turned a corner in also thinking about the positive–the color.  People always want to help–and reviewing the length of this post, it looks like they have. In so many ways-it’s all big.  It’s all significant.  It has all made a difference in how my family has dealt with this tragedy.  So…thank you.  Sincerely.