Have a Coke and a Smile

It can't be easy being married to a grieving, pre-menopausal, emotional wife who also works full-time, is working on her MBA, and tends to worry about stuff in general. Lately, most days I feel like a hot mess. I know this has to do, at least to some extent, with the grief process. My insides feel all weird lately. And it manifests itself in bouts of crying, irreverent humor, and lots of eating. (Why is it that nothing, not even the death of my child, can take away my appetite?!?!)

But Ted manages to work an amazing amount of hours each week and still makes me laugh, takes care of things like finances and groceries, and, most of all, makes me feel loved and supported. We joke a lot, especially on social media, about our lives and the funny things that happen in our days.

My friends tease me that I'm spoiled. Yes, Ted spoils me. I spoil him too but in a different way. We both need different things. Our love languages are very different and for us, it works out very nicely.

In all seriousness, one of the things I love about Ted the most is that my thoughts matter to him. Things I think about and mull over and questions I have matter to him. It doesn't matter the topic. It's common for me to say something like, "I don't understand this," or "I feel weird right now." And his response is always something along the lines of, "Tell me. Let's talk about it." Another common Ted response is "What can I do?" And usually there's nothing to be done -- I just need to know he's there and hears me. Everyone needs to be seen and heard.

For the next few years we have financial obligations and bills to be paid off that require Ted working extra. He's happy that he is able (Read: has the energy) to go do what needs doing. Not once does he ever complain about being tired or having to work his third job of the day. He puts everything he can into all of his jobs, not just his "day" job. As a Coke Merchandiser (which is very different than his job as award winning Dr. Troxell, professor extraordinaire) he builds displays and refills shelves. Sometimes his displays are so perfect and pretty he will text me photos of them. He's proud of his work ethic no matter what job it is he's doing. THAT is sexy.

I've offered to put my MBA off and get a second job and he won't let me. He wants to see me succeed and be whatever it is that I want to be. (Cue Wind Beneath my Wings...) THAT is love.

I don't know what precipitated this blog post. Everyone knows I'm super grateful for him. It was just a weird morning. I am fairly nervous about this accounting project I have due tomorrow for school and then the cumulative final I have to take on Tuesday. Again he was all, "What can I do to help before I leave for work?" And the answer was cake. I need cake. Cake will help me get through this day. So off he went to buy cake supplies.

Neither of us are perfect. I'm not so naive as to try to pretend we've always done everything right and life is always a big, fat rose. I mean, he leaves the toilet seat up so there's that. And I have a list of faults too. (Since this is my blog I don't have to list them if I don't want to.) :-)

But sometimes I just have to shout out to my people. Today it's Ted's turn. 

Now, one more piece of cake and then back to homework. 

#allinadayswork

Grief Group Day

I attended my first "grief group" last Sunday. Can I just start out by saying I hate that term? Grief Group? I wish there were another name for it. I mean, sure, I can call it my Compassionate Friends group which is the actual name but what is it? It's a grief group.  It's a group to deal with grief. Grief Group. Meh. Weird combination of words.

Anyway, I was so nervous.  I had some time to waste so I went to get a coffee at the Whole Foods Cafe. I walked in and the first thing I saw was beer taps. OMG. They have a bar at Whole Foods. Who knew?  I didn't know this. Of course, I don't normally shop at Whole Foods.  I booted the coffee idea and instead opted for a Lager of the Lakes pint.  I figure it was legit.  You know, having a beer before my first grief group. It ended up being a good call.  It took the edge off.

The group met at the First Presbyterian Church downtown Ann Arbor.  It's a beautiful church and there was an orchestra group practicing.  I was early so I sat a bit and watched and listened.  It felt odd to be in a church pew.  I haven't been in a church in a while. In 2014 I went to mass a few times but I don't think I made it once in 2015. By choice. (Which is another blog post for a later date.) Anyway, it was comfortable.  I didn't have the church anxiety I thought I would have.  Then again, I had beer in my stomach.

Finally it was time to go up to the room the meeting was held in.  There were a few people already there and a few more ended up coming after me. Everything we talk about is confidential so while I can't share specifics, I can say it was a very diverse group.  There were people whose children died years ago.  There was another man whose daughter died one week after my Willy died.  I later found out her birthday is close to Willy's as well so I think he will be one of my good friends in the group.

What struck me is how many ways the children had died.  I'm used to living in a world where children have terminal illnesses and, to large extent, you know they will die at some point. It is kind of normal for me in the circles I move around in.  But as we went around the table telling our stories, I realized there was much more to the loss of a child than a terminal illness.  Some died in house fires. Some in car accidents. There were a couple others who had children with cancer.  There was an overdose.  All ages too.  Adult children, infant children, and everything in between.  And THIS was the reason I wanted a grief group that was all about parents losing children.  There is something different about a parent losing a child.  Different than losing a parent or a grandparent.

I don't mean to downplay the grief that comes from losing a parent or grandparent or other loved one. Please don't misunderstand.  But everything I've read about losing a child indicates there's a nuance that can't quite be described. We know it's against the natural order of things to lose a child. As a parent, your job is to protect your children, keep them safe. When you lose a child, you weren't able to do that.  (By no fault of your own.) You think of all the birthdays. You wonder what they would have become had they lived. You think about what they missed. They didn't have a chance at life like adults do.  Therein lies part of the nuance.

Willy had the cognition of about a 4-year old.  Face it. He wouldn't have grown up and got married. But he would have been my baby. My very large baby.  I would have taken care of him no matter how big he got. It didn't matter to me that he couldn't walk or talk.  I grieved that a long time ago. He was cuddly and sweet. And he didn't sass.

Truth is, as I wrote in a prior blog post, I thought I had already grieved him when he was diagnosed. I thought that the grief when he died would be mitigated. I was very wrong and that is a large part of what has hurt about this process.  I explained this to my group and they gave some very good advice that has helped.  I have a lot to learn about grief and I think the group will help me with that. And to be honest, it was refreshing to be with a group of people who didn't have terminal children. Anytime I can step away from my normal world and get a new perspective is welcomed.

Some people cried, some laughed, there were some jokes told that only bereaved parents could understand, and promises to get in touch with someone if grief became unbearable. Reach out.

After the group was over, I went and sat with my Great Aunt Madeline for a few hours.  She's on hospice at a nearby retirement community.  I've been close with her for a long time -- since we moved to Ann Arbor when I was 12. So although she's 99 years old and had a good life, it's still sad. Watching her struggle for words all while knowing she is nearing the end of her days here is tough. We had a good talk. I helped her change into her pajamas, gave her a foot rub, and got her some toast.  It felt good to be a caretaker again.

After I left Aunt Madeline's, I realized I hadn't eaten since breakfast.  And this was about 8:00 at night.  I drove straight to Little Ceasars, bought a Hot 'n Now pizza and some cheesy breadsticks and ate.  A lot. Took a bath and went to bed. I was completely emotionally drained.  But it felt good.

We all die. Whether you're an 11-year old boy who dies of a terminal brain disorder and complications thereof, or a 99-year old great grandma.  There's a grief process that is different for everyone in every situation.  I'm still figuring mine out.  But my new group will definitely be part of it.

Link to Compassionate Friends:
http://www.compassionatefriends.org/Find_Support/Chapters/Chapter_Locator.aspx

Link to the Ann Arbor chapter of Compassionate Friends:
http://tcfannarbormich.org/

Those Cheeks Though!

Last night I had my third dream about Willy.  I don't remember any of the details except that he was lying on a bed, happy and awake, and I was kissing his cheeks.  His cheeks were always full and fat -- at times more than others depending on his formula.  And unlike most growing boys, he couldn't resist me when I smooched at them. Yes. I took full on advantage of his lack of motor skills in order to sneak kisses.

I woke up and it felt nice.  Like he had visited.

Thank you, Willy.  Come back soon.

It Was the Best of Times, It Was the Worst of Times

Stealing from one of my favorite authors, Charles Dickens, this last week has been the best of times and the worst of times. Of course it's not the French Revolution and I'm not living in London or Paris but I can't stop repeating this line over and over in my mind.

It was a tough week.  I didn't score as well on the GMAT as I wanted to.  Granted, I did not study at all. So, considering, I got a pretty good score.  But being a pseudo-perfectionist and someone who is very hard on herself, I freaked. To make a long story short, I'll just retake it, hopefully get a better score, and be a little smarter too!

The funk I've been in this week isn't really about the GMAT though. It's all tied to grief. I keep thinking that if I pack my plate full and stay away from triggers, I won't feel that awful dark feeling anymore. Oh I know there will be moments of sad but not that horrible, gut-wrenching feeling of despair when you realize you'll never hold your child again.

I know this isn't how grief works. However, my brain, heart, mind, and soul are kind of arguing over how to process life post-Willy.  I have to tell you, it's hard. Some days are very, very good.  I have a wonderful group of co-workers, an awesome boss, and work that I find very interesting.  I have a super supportive husband, lots of friends, and awesome kiddos. We're not rich but we have enough.  Things are good. (In case you aren't quite following along, this is the "best" of times.)

But none of that matters when you are grieving. There is no rational by which you can gauge how you're doing in the grief process.  I keep trying to figure out what I need to do with my life post-Willy.  Before, he took up a large part of our day.  Between feedings, pills, cleaning and organizing his room, and just loving on him, he was time consuming.  A wonderful time consume, but still a time consume. So now I think "What are you going to do with all your available time? Huh? You sat for 15 minutes. Do you know what you could have done in that time?"  Etc. It's hard for me to just BE.  I feel like a bunch of cells just bouncing off of each other trying to figure out what to do next. Take up a cause? March in Lansing? Stump for Bernie? Get another degree? (Oh wait, I'm doing that one.) Spend more time with the kids? Clean out the trunk? Good Lord I even thought of adopting another special needs child. (Ted ruled that out and it was the right decision for all of us.)

RELAX, Dawn.

The one thing I've always been good at is determining what's wrong in my life and trying to fix it. Sometimes my fixes have worked and sometimes they just created more problems. But I recognized there were things I could fix so I made a list.

1. Slow down on the MBA.  I feel hurried and I'm making mistakes in my coursework. It's not fun. Take a few more prerequisites than what I need. Lay a stronger foundation so when the super hard classes start I'll be ready. 
2. Read for fun again. This has worked out nicely.  I've read some good books lately.  I'm currently rereading The Scarlett Letter.  Ted is going to bring me Out of Africa home tonight. 
3. Meditate.  Right now I'm not doing it as much as I want. So I will make an effort to do it more. It does help and I love it. And I have like 5 meditation apps so it couldn't be any handier. 
4. Spend time with the kids.  Gabby and I have been enjoying tea together lately. We've even gone to the Tea Haus downtown a few times and just spent time together.  Sometimes in the evening we sit on my bed together and just hang. Grant wants me to learn a language with him on this DuoLingo app.  He bugs the crap out of me when I didn't do my daily lesson.  I already know Spanish and I really don't want to learn German but he wants me to and it's something we can bond together on.  And it's hard to find something to bond with your 14-year old son on? Amiright??
5. Yoga. I started a yoga class at work a few weeks ago.  It's not pretty but I like how it makes me feel. 
6. I can think of more but that would defeat the purpose of slow down and just BE.  So for now, this is my list. 

My hospice grief counselor called yesterday for her routine check-in.  She kindly reminded me that Willy's birthday is coming up. (Gee, thanks.)  She asked if we had made any plans? (Nope.) She kind of (ironically enough) put me bank into the funk that I had worked hard to shred from the beginning of the week. I know it's coming and I have a feeling it will be tough. Do we go to the cemetery and have a little party? This is new territory, you know? 

I'm not really sure what the point of this blog post was except to remind myself there's no procedures for grief.  There will be good days and bad days.  Triggers will send you into a funk and sometimes, with no warning or trigger, the grief will just slap you across the face. It's not rational. You can't plan for it and you can't work around it. 

I'm doing it right. I'm doing it my way. I'm recognizing that I need to slow down and let the process do its thing. Sometimes I'm hard on myself for not feeling better all the time.  Then I have to remind myself that my child died in my arms a little over three months ago after an 11 year battle. So I need to give myself a break.  It's the worst of times right now.  With some good times mixed in. 

I was texting with Willy's hospice doctor a few nights ago, Dr. Pituch. I told him grief sucks.  His response was "yep."  With all the knowledge and experience and degrees he has, that's his response. Yep. 

So, yep, grief sucks. But life goes on.

Three Months Without Willy

Another anniversary of Willy's death passed last night at 12:40 a.m.  I went to bed with heavy thoughts of his last evening in my mind and it's only because I've been studying so hard that my brain allowed my body to fall asleep.

We made it past the night he died.  We made it past the viewing, funeral, and burial.  We made it through the holidays.  (Dark though they were....)  We made it through the new year. We made it past the first birthday which was Todd's. We had our normal Pickett/Hansen/Krause/Troxell Clan Family birthday gathering for Todd's 46th. Most of the thank you notes have gone out although there are still some in the stack that need to be finished.

For me, it's been a quest to bury myself under every project I can find. Leave no minute of the day available.  Go all day until I crash.  It's the evenings that I'm afraid of.  When the day is winding down and I'd like to relax and watch a show or read a book, well, that's when my mind starts doing the sad things. I know this isn't healthy and I have been trying (with some success) to slow down. I joined a grief group that starts in a couple weeks.  I've said no to a few projects. I realize I can't heal if I'm buried under projects.  The grief will wait for me and come at me with a vengeance if I try to push it back.

I've also been trying to spend more time with Grant and Gabby.  They missed out on so much over the years.  Grant and I had a mom/son date night a few weeks ago which I blogged about.  Ted took Grant out for a special dinner because he ended his semester with such good grades. I took Gabby to the beauty supply store and we played with the samples. I moved all of Willy's things out of Grant's bedroom and am starting to turn it into "Grant's" room now.

Yesterday Grant had an eye appointment and it was weirdly scheduled in the middle of his day so I let him skip the whole day. I decided heck with it and let Gabby skip too.  The three of us went out to breakfast, then to Grant's appointment, and then to the TeaHaus for afternoon tea and crumpets. Gabby has a friend at school who told her the tea there was delicious and she had been asking to go. We had a great time. We each had our own pot of tea and sat there just being together and not being rushed.

http://teahaus.com/

After tea, we went and did a little shopping in Kerrytown. It was nice just walking around downtown and not being in a hurry. I took them home and had to go back to work but we had a great morning and afternoon together.

I still don't quite know how our life without Willy looks.  Right now it's still too raw to get a good picture.  I think the kids are doing well.  They take comfort in knowing he is not battling lissencephaly anymore. And while I take comfort in that as well, I'm still the mother of a child who died in her arms too quickly before even a goodbye could be said.

Thanks to fantastic friends, family, co-workers, and the most awesome husband a woman could ask for, I feel well supported and well loved. I have a lot of happy moments and have begun to laugh a bit again. Sometimes I fake it because I don't want to be the downer. Sometimes I let it all out in bed or in the shower. But sometimes I really do laugh, and mean it.

But I do feel like I've aged 30 years in 3 months.  And the further in the past that Willy's death gets, the more anxious I am that I'm going to forget his smell and how he felt in my arms, the softness of his hair and skin.

The one thing I can say for sure is all the nausea I had the first couple months seems to have subsided.  The first real piece of empirical evidence that I am, in fact, healing.