One Year

Tonight at 12:40 a.m. on November 5th we will reach the one-year mark. One year since Willy left this plane to go to the next. Someone asked me a few days ago if it seems like it's gone fast or slow. Surprisingly, I think it's gone fast. For a family grieving the loss of their son and brother we've given it all we've got. I know many will say it's just a date, however, I'm fixated on the terms of time because, in part, that's how my analytical brain works. I won't stop grieving because it's been one year. But to know we all made it through the first year is noteworthy.

As I reflect back on this past year, I realize I'm proud of us. Ever since Willy was diagnosed back in 2004 I wondered what life would look like after he passed. How would we come out? What shape would we be in? It was such an intense 11 years one had to wonder (and I did often) what type of person they'd be after experiencing a journey like this? 

But we've done okay.  Besides a move to Saline and two new houses, the kids both have new schools. They've done great. Grant has an incredibly difficult schedule and he's raking in mostly A's and an occasional B. Gabby's doing well and just finished Level 6 swim class. They've been on more trips in this past year than they were their entire lives. This summer between both families they kids swam, went tubing, went to water parks, baseball games, museums, picnics, Mackinac Island, Traverse City, Holland, and Grant even went on a missions trip with church to Indianapolis.  Grant also joined the cross country team at Saline High School and had a fantastic season.  Although we tried to do things like this when Willy was here with us it became increasingly difficult in recent years. 

We've even been able to have some time to ourselves.  We've all started to slowly get involved in things we weren't able to before. 

I'd go back to life with Willy in a heartbeat. Every late night, every fight with the insurance company, every seizure, every hospitalization, every sleepless night, everything. It was all unequivocally worth it. But Willy's mission here on Earth was over. He came for a time and undoubtedly made us better people. 

So how am I? I have days of intense sadness.  It comes and goes at strange and unexplainable times. There's no describing it. I used to try to stop it by keeping busy and no doubt there's always plenty to do. But now I just let it wash over me.  I embrace it and spend the time remembering Willy.  It snaps eventually and life goes back to the new normal. Even on good days I will never feel the same as I did before Willy passed.  

But I'm enjoying seeing how our lives are unfolding. It's rewarding to see the kids working to do things they couldn't as easily do before. We think about Willy. We talk about Willy. He's still here with us.  It's bittersweet knowing one of your children is gone but the other two are thriving. But it is what it is. We will continue to move forward; one step at a time. 

We are still Team Willy.

The Last of the Firsts

Today is my 46th birthday, otherwise known as the last of the Firsts. The first of every holiday since Willy passed.  He passed on November 5th so I guess Halloween is still in there but I'm not really counting that. Halloween happens to fall in a bad spot, weather-wise, and Willy was usually sick for Halloween.  He couldn't eat candy anyway so what was the point, really? I mean sure, some years we took him and then ate all his candy for him but who really needs that?  Todd and I usually did a divide and conquer sort of thing. One goes with the other two kids trick-or-treating and the other stays with Willy. At least two years that I can remember, Willy was in the hospital on Halloween.

In addition, Willy was starting to get very sick on Halloween last year with the pneumonia that would six days later take his life.

So, meh. I'm counting my birthday as the last of the Firsts.

The Firsts were horrible. Every holiday after a loved one passes is torture. Your memories do crazy things to you.  My birthday last year (2015) was the last time that Todd, Trish, Ted, Grant, Gabby, Willy and I were all together as a family of 7. Thank God for my incessant photo taking or we wouldn't have this photo to document our last time together.

The last time together as a family of 7

I used to love fall.  The smells, the colors, PUMPKIN EVERYTHING...  But since Willy was diagnosed fall was our nemesis.  His lungs couldn't keep up with all that fall brought and we often spent it inpatient with a sick Willy wondering if this fall would be his last. Well last year, it was.

I'm trying to make nice with fall.  Last night I put my fall wax scents my burners, turned on the little fireplace, had some tea, and tried to relax and enjoy. And I did to some extent but I was relieved when it was time for bed - not going to lie.

So back to my birthday..  I work out of two locations and on Monday the one location had a surprise birthday party for me with a breakfast.  Today my co-workers and friends from the other location are going to lunch. I've received some awesome gifts. Tonight Ted is going to get Pizza Hut (my favorite pizza and a real treat because we don't have one close to our house), and then Todd and Trish are bringing cupcakes over. Tomorrow my dad and step-mom, Ted's mom and step-dad, the kids, Ted, and I are all going to a Japanese Hibachi restaurant in Novi. It's been a great birthday week thus far.

But there's always something missing.  No matter if it's my birthday or a regular 'ole Tuesday. Grief has changed me. I've been reflecting a lot over the last almost year as the anniversary of Willy's passing is getting closer. It's been darker than I thought it would be. I don't know what I was thinking it would be like - I mean, my child died in my arms how easy could it be? I thought I would have been more prepared. We all know how that has gone.

But my birthday marks a significant time. I'm another year older. I've had another year on this earth and it's been a good year. Despite grief and maybe because of grief I've had some successes in other areas. There's so much to be thankful and grateful for.

But I made my 46th year without one of my children. It's just not the way life should be. There's something very out of order about a child passing before his parents. Most days I feel like I'm a train with one wheel off the track -- just slightly 'off'.

Most people don't talk to me about Willy anymore. I find this odd.  We can talk about our children who are alive; their grades, their sports, their attitudes, everything. If we talk too much about our children who have passed then we are "living in the past." (Yes, I hear this often from people.)  I don't know who made that rule up. The past, my memories, well, they are all I have of Willy.  I'm going to keep talking about him because I do the same for my other two kids. And so do most parents.

Ted knows this bothers me. He simultaneously listens while I vent and asks me how I am and also says things like "Willy would have loved this!"  I appreciate this about Ted.

This morning, Ted had to leave very early to go to work but after breakfast in bed, he left me a letter. Or course, he wrote it.  I could spot his writing style a mile away but it was from Willy.  He wanted to acknowledge that I was sad about another First and try to put into words what Willy might be thinking right now. I have no idea where Willy is. I have yet to determine how I think the afterlife looks like. But he's somewhere close. I'm fairly certain that the words in the letter are similar to what Willy is thinking and feeling right now.  And it's the best birthday gift ever.

"Dear Mama,

Happy Birthday! 

I know this is your first birthday without me in the house with you, and I know you will be sad.  It's impossible to describe what things are like where I am, so I won't try to do that. Just know that I'm safe and happy.

I'm glad that life for you and the rest of the family is moving along.  I like the new house and how cozy it seems.  I'm proud of Grant and Gabby for diving into their new schools.  And you're doing school too!  That sounds like a lot of work, but I'm happy you're able to reach for a goal like you tried to get me to reach for a toy.

I miss your snuggles and the sound of your voice. I know you wanted me to be safe and happy and comfortable and you - and everyone else - did a great job.  I miss Dad and Trish, and Grant and Gabby, and Ted.  I even miss the dog! - I noticed she was there for a while.  The voices and touches and gentle care all meant a lot to me.  I knew I was loved and I know it took a lot from everyone to  make sure I was taken care of. 

I want you to know that I am with you. I want you to see me in the first light of sunrise, and in the fading colors of twilight.  I want you to feel me in the crisp autumn and the crunch of leaves under your feet.  I want you to remember me in the warmth of sunlight on your cheek or the freshness of newly fallen snow.

I also want you to remember me in the bitter cold of a fall rain or the hard bite of a winter wind.  I want you to hear me in the noise of traffic and the din of a crowded room.  I want you to feel me in the pain of a stubbed toe or the disappointment of failure, because those things are part of life too, and it is life that I want you to celebrate as you remember me.

I don't want you to worry that you're not remembering me in just the right way because I k now you will never forget and that's all that matters.

Life is hard, Mama, and it doesn't always seem beautiful but it is.  That's something I knew better than most and something I hope I was able to teach you.

I love you, Mama, and I am always with you.

Willy"

Back-to-School - Another "First"

Back to school preparation can be exhausting. There are so many things to tend to, plan for, and remember to do -- especially when your kids are starting a new school district! I'm lucky that I have three co-parents to help plan and make arrangements.  Trish is especially helpful with scheduling and planning in a thorough way that I am not able to be. She keeps us all on track and it's much appreciated.

The last few back to school discussions and emails between the two of us have made it abundantly clear that we are prepping to send two kids back to school, not three. In prior years we had to move heaven and earth to figure out who would be home to put Willy on the bus and who would get him off the bus.  Our schedules revolved around Willy and his needs. 

This year our back to school planning has been what most would call "normal". Buying clothes and school supplies and getting haircuts.  Wait. There's no bus staff to train how to suction and seizure watch? I don't have to drive a van load of supplies to Willy's school? I don't have to have the neurologist fill out a ream of paperwork? 

No. Our back to school planning this year has been much simpler. It feels weird. It feels like there's something missing. Or, more appropriately, someone. Willy. 

I love seeing the back to school photos of all the kids. But each one is a reminder that we have one less kid to get ready this year. It's another "first" to get over. 

I'm not looking forward to the one-year anniversary of Willy's passing on November 5th. But in a way, I am.  Only in the sense that there will be no more firsts to get over. I really need the "firsts" to be over. 

A Day at the Fair - Preparing for Launch

Since Willy passed, I've made a concerted effort to spend more time with Grant and Gabby. Turns out, they are rather used to operating independently and don't always appreciate me "hovering." I'm learning how to operate in that grey area where you parent them, are there for them, plan activities with them and give them their alone time as well. 

This past Friday, Ted and I took Gabby up to the Isabella County Fair. Ted's son, William, and his daughter, Elizabeth, both had entries in the fair.  William entered some beautiful artwork for which he received an "A" ribbon and Elizabeth had artwork ("A" ribbon), an original composition on the piano in the talent show (Grand Champion), and she also received the Chester Brown Leadership award. In between different fair activities, Gabby and I spent some fun mother-daughter time together riding the rides and seeing the sights. 

Before she rode any rides, she nervously walked around the midway considering all the different options. I could tell her wheels were turning. Part of her wanted to just jump in with both feet and ride ALL the rides. Part of her was holding back cautiously. We started on the Ferris Wheel which was a big hit.  

 

Riding the Ferris Wheel gave her a little courage so we hit the big swings next.  You know, those ones that fly high up in the air? Yeah, those. By the time we were in the middle of the second ride my stomach was not happy with me. But she wasn't ready to ride anything alone. 

Next up was this teal and purple spinny thing. I knew there was a good chance I was going to puke if I went on it but she was so excited, yet not ready to go on her own. She grabbed my arm and dragged me to the line. We sat tight next to each other, squeezed in by the metal arm that kept us from falling out and becoming a grass pancake. I didn't vomit but when that thing slowed down and started back up backwards I had to fight to keep it together. Gabby, of course, loved it. 

Next up was this spaceship looking thing that used gravity to hold you to a vertical seat.  I tried to tell her she could go on her own but she wouldn't have it. She wanted me to go with her. Once it got going to a certain speed, the floor dropped out. I knew right then that was my last stand. Just as she's getting excited and beaming like I haven't seen her in a while I had to bow out. 

After the spaceship ordeal we sat on a bench so I could catch my breath and swallow down the vomit. She was crushed. She could tell I was not doing well but she kept telling me to just relax and I'd feel better soon. I didn't. I was done. She looked at me with big eyes and said she thought she was ready to try one on her own. She nervously walked up to the teal/purple spinny thing and kept looking back at me.  She looked so small sitting in the seat all by herself.

From that moment on, she rode as many rides as she could and all by herself.  After the talent show she begged to ride just a few more before we hopped in the car to make the drive home.  By that time she was an old pro, running up and down the midway trying to get on as many rides as she could before I said it was time to go.

She needed me that day. She wanted to try something that was a little scary and she needed me to be by her side while she put her toes in the water. She's so independent that she normally shuns any assistance from me.  It felt good to be needed.  It also felt good to see her gain courage as the day wore on. Isn't that what we are here for as parents? To prepare them for the big launch when they go off on their own? Hold their hands when they need it and back away a little when they don't? 

She's 10 going on 30. But that day, for a little while, she needed her mom. 

A Realization: I will Always be a Grieving Mother

I am now 8 1/2 months out from the night Willy passed.  It's been a struggle consisting of some fantastic highs (yes, grieving people can still have fun), and some very dark lows. With very few exceptions I keep my thoughts to myself.  I go into a private place when I want to actively grieve (not just the normal grief feelings that seem to always be present.) Sometimes at night I lie in bed and play Willy videos and just remember. I don't usually tell anyone. Even though my life is great and things are going really well, I feel different than I did on 11/4/15.  I've come to realize I will never feel the same. There will always be this sadness, this heaviness, that casts a pall over everything. If my grief emotions could be explained via a quantitative scale from 1 to 100, (100 being full on grief), some days are 10, some are 50, some are 100... And every single number in between. But there is never a zero. Zero does not exist on the quantitative emotional grief scale. And it never will.

Writing helps.  In addition to writing this blog, I also journal.  I always feel better after I write. I don't make public all of the writing I do. Some is just for me. Some I write here. I have a lot of friends who are in the same boat (darn special needs world!) and hopefully these writings will resonate.  But basically it's my journey and I want to document it all.  I don't want to forget any of it, the good, the bad, all of it.

I had dinner with a dear friend last week.  We had some great conversation and laughs and it was fun to catch up.  At one point she asked me how I was doing with grief.  I very much appreciated her asking that question. I've been surprised at how many people (the majority actually) don't ever ask how you are doing after the weeks post-funeral fade away. I understand it's normal in my world and maybe not normal in theirs.  Children don't die in most people's world so perhaps it's just not knowing what the protocol is. In many of my relationships Willy is just never mentioned unless I bring him up. It hurts although I understand it.

I've also had the "it's time to move on" and "it's time to focus on the other children" and those sorts of things. These things aren't said to be mean and so I am empathetic. I wouldn't know what to say to me either if I hadn't been in this life for so long before Willy passed.

But these sorts of things are not helpful. Obviously I know that it's time to focus on Grant and Gabby who for so long took the back burner. We have all been working hard to concentrate on their needs. The guilt I felt for so long not having the time to spend on them just makes comments like that become salt in the wound. I've said it in conversation and that's okay.  It's not okay for me to be sharing thoughts about Willy and have someone say "well it's time to focus on the other two now and move on."  (Yes, there have been people who have said that.)

I'm also still amazed at how people compare grief.  I have to be careful here as to not downplay other people's grief.  But having your child take their last breath in your arms after a very intense and horrible 11 year battle is not the same as your 95 year old grandma dying peacefully in her sleep after a good, long life. It's just not. Or, God forbid, your pet.  Yes, I had someone tell me about how their dog died after I shared Willy's story.

I try to go to the cemetery a couple times a month.  I lie there on a blanket and talk to Willy.  The last time I went Grant went along. In a nod to a maturity beyond his 14 years, he quietly asked me if I wanted to be alone on the blanket. I told him it didn't matter and that he was welcome to stay if he wanted.  He sat down next to me, without fanfare, for a little while and then left and let me have some alone time with Willy. These moments at the cemetery have become more peaceful than they were in the beginning so I feel some hope here with regards to my grief.

Our lives are good. The move to Saline has been wonderful. It's been fantastic to see old friends and make new ones. Grant has started running with the Saline Cross Country team for the summer conditioning program.  He will officially join the team in August. Todd and Trish put Gabby in swimming lessons at the Saline Rec Center and she's doing wonderfully.  We are all busy but our jobs are going well.  For our Clan, things are good. I wondered what our life would be like post-Willy since he was always the glue that kept us together and it's been great.  There's been a lot of healing between the four adults and we are a cohesive family unit. I have nothing to complain about.

But there's always that dark down deep. It lurks. It's almost impossible to explain unless you've been there.

As I type there are a few parents in my group who have recently lost their children or have taken their children home on hospice to pass.  Some might question why I stay involved. It's like in the beginning of the journey. I learned from parents who had gone on this path before me and then I became the seasoned pro and helped others. My mission is now to help others with the next step of this journey.  My goal is to be honest and present my grief the best I can.  I don't want to be alarming and I don't want to sugarcoat it.

The one thing that haunts me is the last hour of Willy's life.  I wasn't intuitive enough to realize his breaths were getting shorter and there were more breaks between breaths. I knew enough to take a video which I replay and cry. I'm simultaneously devastated and grateful that I was the one who was with him when he took his last breaths.

Willy's last breaths

Every second of that night is etched in my mind as clear as day. I keep forcing myself to work through that night in hopes of some closure because I am tired of it haunting me. He was comfortable. I was right beside him. He was loved.

11/5/15 12:20 a.m.

Saline Hornets! Round 2!

Our move to Saline is June 1.  On one hand I'm still a bit sad to leave Ann Arbor.  Even though Saline is only 15 minutes away it's not the same.  But as we've learned, life changes and you have to roll with it. The moving van is lined up, the utilities have been switched over, and today Todd and I took Grant and Gabby to tour their new schools.

Saline is a very different city than when I moved away. I have yet to decide if it's better or not. It's bigger -- that's for sure! What was the high school (where I went) is now the middle school. The new high school is this very large and fancy brick and glass building that is quite impressive. All the old elementary schools are closed and new ones have been built.  I went in today not knowing what to expect.

I.Was.Amazed.

We stopped at Heritage Elementary first.  Heritage houses all of Saline's 4th and 5th graders. The principal gave us the tour and introduced us to many teachers and staff members. Those who we met were very engaging and pulled Gabby right in.  The school itself is quite neat and has more of a middle school than elementary feel. Everyone assured us Gabby would fit right in.  We left her there for the afternoon so she could shadow the 4th grade class. (Side note: Trish had already arranged a play date for Gabby with her co-worker's daughter, Sofia.  Sofia was in the 4th grade class that Gabby shadowed today so she already has a friend there!)  In one of the classes we visited, Trish's nephew, Owen, saw Gabby and ran up to greet her with some friends.  It felt very welcoming and Gabby had big smiles.

After we left Gabby at Heritage, we drove over to the high school with Grant.  Can I just say wow!  I mean, a building doesn't necessarily indicate how good the academics are but I think Saline High School kills it on both accounts!  We met with Grant's counselor who gave us a tour and helped us start to arrange a class schedule for the fall.  We also stopped into the athletic office and got Grant started with the cross country application process.

Todd got so excited he even stopped into the school store and bought some Saline gear.

I have good memories from when I lived in Saline.  I was worried about the kids switching schools. I'm not saying it will be a perfect transition but after today I feel much better.  I'm really just a mom who wants her kids to be happy and not anxious.  I want them to enjoy school and feel safe and secure in all that they do and are.

I appreciate Ted, Todd, and Trish and our continued pact to raise the kids together.  It's been going really well lately and I think we all have a pretty bright future as a family. All the changes over the past three years are behind us. Although we will never forget our Willy and the grief is still raw, this move is our chance at a fresh start.

Oh, and a special shout out to Grant.  He made the decision to switch to Saline on his own.  We were not going to make him.  Todd and I both told him today that he was very brave to make that decision and that we were proud of him.

Please keep us in your thoughts as we embark on this new journey.

Saline or Bust? But what about Ann Arbor?

This is long and please bear with me. Sometimes I blog more to work my thoughts out than for the reader.

In the early days of our relationship, before Todd and I bought our house in Jackson, we rented an apartment in Ann Arbor.  I had been living in Ann Arbor for quite some time and loved it.  It's a fantastic college town, complete with all the chaos and fun that goes along with the academic machine. It's bright and vibrant and upwardly mobile. To me, there's always been a feeling of forward momentum in Ann Arbor.  Things are moving. The economy is flush. People come here from all over the world to learn.  I love the sites and sounds of other cultures and languages. Ever since my mother moved us there when I was 12 I was in love with it. 

But I was newly married and I wanted a house. Picket fence and all that...

However, our goal was always to try to sell the house and get back to Ann Arbor.  Then the economy tanked. Long story short, in 2013 Todd and I both landed jobs at the University of Michigan.  We finally had enough income to move back to Ann Arbor.  The VA short sold our house which helped and we found a beautiful rental in one of the best neighborhoods in Ann Arbor.  (For $650 more per month than our mortgage was I might add!)

The new house didn't have the mold problems our old house did and between that and putting Willy on hospice services, he thrived. Ann Arbor was a good move. We worked hard and got our family back to a healthier (in more ways than one) city. It was a good city to raise our kids in.  It was what I wanted for them. 

Then life happens. Todd and I got divorced and stayed in Ann Arbor in apartments next door to each other.  We had a firm commitment to be a "clan" together and raise the kids as a family even though we divorced. It's hard work and we don't always agree but we did it and are doing it.

Willy was one of the main reasons we wanted to make sure we lived geographically close. Along with Willy came a lot of supplies. Transferring him back and forth was complicated.  After he passed, Todd bought a house in Saline. We knew this 15 minute distance wouldn't hurt us and would be more possible since Willy was gone. (Yes, I hate writing that.) 

Although I have no desire to own a house - I've owned two and neither turned out to be the wonderful thing society tells you it is - I was happy for Todd.  He and Trish will have a good life there as will the kids. But this did leave Ted and I wondering what we should do. I certainly didn't want to stay in the apartments forever.  There are some issues with apartment living that I wasn't comfortable with and even though I love our particular place, the complex itself is becoming less than desirable at almost $1400 a month. It's just not worth that anymore to live in Ann Arbor. Renting a house could be anywhere from $2000 on up. I just don't love Ann Arbor THAT much. To me, it's irresponsible spending. 

I always said I didn't want to move back to Saline. I don't know if that's the teenager in me who couldn't wait to move OUT of Saline when I went to college the first time or what. I was adamant that we stayed in Ann Arbor. 

Sometimes you just have to admit you're licked. 

Ted and I found a beautiful, old, charming duplex right downtown Saline. I can see the house we lived in through the trees.  It's comfortable. It's charming. I have friends there. Saline schools are just as good, if not better than Ann Arbor's.  (They're both fantastic, there's no downside here.)

Henry Street, right downtown Saline, left side duplex

I did not want to move the kids from their schools. They are both doing well and Ann Arbor schools have been a stable situation for them.

But when making big picture decisions you have to consider the whole. Living in Saline, three miles from Todd and Trish, in my hometown - or at least what I consider my hometown - with a beautiful rental that is much less than our Ann Arbor apartment, is the best decision for us. 

We will be better able to continue on the path of raising the kids together, the four of us, making them feel confident, loved, and taken care of by four adults who love them very much. Divorce and remarriage is tricky when there are kids involved.  Can it be done in a healthy way? Can you show that although you love their father, it was not a healthy marriage? But that we can be really good friends and commit to each other to get along and work things out and take care of them? 

Yes. Absolutely. That is our commitment. This move to Saline is, in large part, because of the commitment that we made.  I'm thankful for my little clan. I'm especially thankful for Trish who is a wonderful second mom.  We are very different people and don't always agree but she takes care of the kids and I don't worry about them when they are there. 

I always think I should have a take away when I write a blog post. I don't know what the take away here should be except that I needed to work out on paper the thoughts in my head about this move. 

If no one except me gets anything out of this blog post then I've done okay. 

I really just love my kids and want to make a good life for them. That's it. 

11 Birthdays on Earth and 1 in Heaven

Willy's First Birthday!

 Willy's Second Birthday!

Huzzah! Willy made it to TWO!  The doctors said he wouldn't! 

  Willy's Third Birthday!

This was a biggie. We thought he wouldn't live past two and here we were celebrating birthday number THREE!

 Willy's Fourth Birthday!

Willy's 4th was a simple home party but as you can see by his face, he had a blast. 

 Willy's Fifth Birthday!

For Willy's 5th Birthday we went all out at Chuck E. Cheese.  He LOVED it.

 Willy's Sixth Birthday! 

<crickets>

 (Otherwise known as I can't find the Sixth Birthday Photos. Sigh.)

Willy's Seventh Birthday!

His 7th was a big gathering. All of his teachers and school friends and everyone was there! 

  Willy's Eighth Birthday!

Willy's 8th was another home party.  He had a fascination with the balloons that I attached to his wheelchair. He was also a chunky monkey for some reason, diet, meds, who knows. But look at those cheeks!

Willy's Ninth Birthday!

Willy, on the verge of being a tween, wanted a hipper party than before so we went to the roller skating rink. It was a blast.  He loved going around and around.  We also took a small party to his school and visited that week. *Note the monkey cake!

Willy's Tenth Birthday!

DOUBLE DIGITS!!!  Since Chuck E. Cheese went over so well last time we decided to do it again. He wasn't as impressed, being a "tween" and all. 

Willy's Eleventh Birthday!

Todd, Trish, Ted, and I went to Willy's school with little treats and balloons.  Then we had a home party with the grandparents. We didn't know it would be his last. 

That's it. That's all the birthdays we can celebrate with Willy here on this plane. We sure did make the most out of his 11 years.  No regrets. Not a single one. 

Today we will visit the cemetery.  While we know his spirit is not there, it's still the place we need to go to remember this day.  There will be a group of us. I'm sure we'll sing Happy Birthday and I'll take him some flowers and a little prize.  Then we will go to dinner and remember. It's just another "first" to get through. 

Dear Willy,

I bet turning 12 in heaven is super cool. My mortal mind cannot even fathom what it must be like. I know there are no tears in heaven so I take great pleasure in knowing you are not sad.  You are healthy, and happy, and celebrating being alive in a way you haven't ever been before. And this is your gift to me. 

My gift to you on your 12th birthday is taking the memories, looking back, and smiling. Trying not to be sad - although yes, that happens often - but remembering all the wonderful, positive things we did. We had some fun. We made some changes for kiddos like you who the laws and policies sometimes seem to forget. We cuddled a lot. Looking back through all the photos I realize there were a LOT of kisses. I'm sure if you could talk you'd definitely have yelled at me for kissing your cheeks so much! 

Your spirit lives on. People's lives were changed because of you.  You rocked your 11 years. I know you are enjoying your reward. 

Happy Birthday, Willy. We all miss you so much. 

Love,

Momma

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.