A Different Thanksgiving

Original Publish Date on Word Press: 11-27-14

Thanksgiving is kind of cheesy.  It makes me feel like I'm *only* thankful this one day out of the year, which of course is not true.  It's never been one of my favorite holidays.  Yes it's included in the whole year-end holidays and so I go through the motions but I still say it's cheesy.  Now there's the food which kind of takes some of the cheesy away but still....

Almost every year out of the last 17, Todd's mom cooked the Thanksgiving meal.  She knew I was fairly inadequate in the kitchen and would often give me tasks like the relish tray or pop or setting the table.  And somehow she did it without making me feel bad.  Once she had me whip the potatoes up and when I pulled the beaters up too far and potatoes splashed everywhere she simply smiled and made a comment like, "Well, it is best if you hold the beaters down a little lower."

Last year Todd's mom was at her home up north battling cancer.  She had just received her first dose of chemo and wasn't up to cooking the dinner or traveling.  Todd had to work so we didn't do much of a Thanksgiving.  Things were fraught and difficult but I wanted to try to do something.  So with the help of facebook and some of my online buddies, I cooked up a turkey on my own.  It turned out fine and all was well, but it was unremarkable. I was ready to move on to Christmas and whatever the future was about to bring. I knew big changes were coming.

The big changes came and went.  Todd's mother passed away in April and I'm still pretty sad about that.  For 17 years she was our helper.  She stood by us through the most difficult of times a family can have.  When William was diagnosed with lissencephaly, she moved down from up north to support us. And support us she did.  Financially, emotionally, every way a mother can support her kids and grandkids.  She was an amazing woman and I miss her all the time.  I saved the last voice mail she left me and I play it often.  But we have moved forward with our new life.  She would be proud of us the way we've come together to take care of the kids and even through divorce and remarriage have remained friends, getting along even better than when we were married.

She had a rough life but she was always thankful.  She taught me how to be thankful and this year I'm looking at Thanksgiving in a new light.  I have a wonderfully supportive new husband who is also my best friend.  He has come into a situation with a terminally ill child and embraced it. He's the hardest worker I've ever met and tries to be the best dad, step-dad, teacher, and person that he can be. I have an ex-husband who has been a truly mature adult through all the events of the last year and has risen to the occasion. I enjoy co-parenting with him because I know when the kids are with him they are well taken care of and I don't worry. He has a lady friend in his life who, like Ted, has embraced becoming a parent. She loves our kids like they were her own, and hopefully someday they will be her own as well as mine. I have supportive parents who, while not without their quirks, love me and support me and my family however they are able. I have some damn interesting step-kids who I have seriously come to love. They are some of the bravest people I've ever met. I have three kids who I do love more than anything even though parenting is harder than I thought it would be. I have a job that I absolutely adore.  I have an apartment in the city that I love.  I've effectively let go of the American dream that says we have to own a home.  I love coming home to our place and calling maintenance if something goes wrong. I LOVE not mowing or shoveling! I'm thankful for a wonderful school district for my kids.

I could go on. There are a million things to be thankful for especially in light of everything going on in the world. I have friends who are battling significant challenges and my heart is with them. But this year, for the first time in a long time, I'm celebrating Thanksgiving in my heart, not just with the required turkey dinner.

Original Publish Date on Word Press: 11-10-14

I’m one of those crazy people who enjoys listening to Christmas music in July.  I’ve been known to light up an evergreen scented candle in the middle of summer. To me, Christmas evokes feelings of home.  Peace.  A feeling of being settled where I’m at and not necessarily geographically. I have no negative memories connected to Christmas – the season – and therefore, Christmas has become this untainted, precious time, place, feeling; well, you get the idea.  In case it’s still unclear, watch this:

http://www.youtube.com/watch?v=6NrfqiMV6Pg

If it’s not clear after watching that clip, well, you’re just one of those who isn’t going to get it and that’s okay.

Anyway, this past year has been interesting and I’ve been looking extra forward to the holidays. To say this past year has been one of change is an understatement on the level of saying the Titanic hit an ice cube.  Life has long felt unsettled for me. Not bad whatsoever, just unsettled.  Like I’ve been waiting for something and had no idea what.

Last fall the peace and clarity that I knew would eventually come, started to slowly manifest itself.  It was murky at first but with patience and hard work, something beautiful unfolded. This what was beautiful was not without hurt and subsequent damage.  Those of us involved will still be working through the remnants of these changes for years to come, especially the kids. (Without going into too much detail, think children of divorce. Even in the most unhealthy of marriages, kids can feel a ‘normal-to-them’ consistency that is reassuring. Sometimes they don’t even know their parents’ marriage is unhealthy -- think of having the rug pulled out from under you.)  We have been lucky. Our kids have all been very brave and have acted mature and responsible in the face of these huge changes.

After the year that we had, I think Ted sensed my deep desire to get Christmas started extra early and gave me the go ahead to start decorating last weekend.  So I started. And by started I mean started and finished in a few hours. He asked me to refrain from playing Christmas music for a few more weeks but then played Christmas carols on the guitar for us last weekend while we sang along.  When we ran out of Kleenex last week he picked up four boxes with the holiday designs.  When I gently reminded him that we talked about purchasing a fireplace to add to the holiday spirit he said I could order it right away. So although he might not be into Christmas quite like I am, I sense that he gets how it’s all related.  The year, the changes, feeling settled for the first time in a long time, a new peace, working on blending families, and the strong desire to finish out the year nourishing our souls with peaceful family time.

Peace is defined many ways: freedom from disturbance or conflict, harmony with your surroundings, quiet tranquility, mental health, the absence of stress or anxiety.  The new peace that I have found this year will be celebrated throughout the holiday season. I’m not skipping Thanksgiving -- trust me, I’m thankful. Thanksgiving, to me, is included in The Holidays.

But it’s the Christmas season that will allow me to focus on where I’ve come this year. Where we’ve come as a family. The work we still have to do. There's a peace that comes not from having accomplished everything, but from knowing where the new work lies and having the emotional space to attend to it. There's a peace that comes from the patience of knowing these things take time.

Have I done everything right? No. Are there things I should have/could have done better, differently? Yes. How can I be a better wife, friend, mother, daughter, and human being? What am I doing to leave a positive mark on my community?

No matter how beautiful our Christmas decorations are or how much holiday spirit I pump into this apartment, I doubt I’ll have all the answers to my year-end reflections. But I’ll keep asking.  I’ll keep looking for ways to find a more peaceful existence.  And sometimes, the process creates all the peace I need.

Original Publish Date on Word Press: 10-12-14

The gods envy us. They envy us because we’re mortal, because any moment may be our last. Everything is more beautiful because we’re doomed. You will never be lovelier than you are now. We will never be here again.

-Homer, The Iliad

Abraham Maslow was an American psychologist best known for creating Maslow’s Hierarchy of Needs. This Hierarchy of Needs was predicated on the theory that once a person’s basic needs are fulfilled, only then can self-actualization be realized. (Think the 60’s and the ME generation; doing what feels good to and for me.)

Alternatively, Viktor Frankl, an Austrian neurologist, psychiatrist, and Holocaust survivor, developed a very different theory called logotherapy. The idea behind logotherapy is that our main motivation for living is to find true meaning in life – which isn’t necessarily just fulfilling our basic needs.  In fact, Frankl posits that life has meaning, and possibly even more meaning, while being endured under even under the most miserable of circumstances.

It was this sort of thinking (which became the foundation of his logotherapy theory) that allowed him to make it through the Holocaust alive when so many others did not.  This idea, called self-transcendence, is the driving force behind self-evolution.  It is a person’s desire to find meaning in life that goes way beyond simply fulfilling their own needs.

Last week I attended a day conference for work.  The speaker was University of Michigan professor Victor Strecher who is the Director for Innovation and Social Entrepreneurship at the School of Public Health.  The broad theme of the conference was work-life balance with Dr. Strecher as the keynote speaker and then several break-out sessions.

In addition to the work Dr. Strecher does at the University of Michigan, he also writes and speaks  about the meaning of life and changing your life on purpose. When his daughter was 6 months old she was diagnosed with a heart condition after having chicken pox.  They had to decide whether or not to take her home from the hospital and let her pass or try for a heart transplant to give her more years.  A heart transplant had not yet been done in the state he was living in at the time and even with the heart transplant the doctors weren’t sure how much quality or quantity would be added to her life.

After what were certainly excruciating discussions, they made the decision to move forward with the heart transplant.  Their daughter ended up living life and living it well up until the year 2010.  Spring break 2010, the Strecher’s took their daughters and their boyfriends on a location vacation for spring break.  While on this vacation, their daughter (who had not been sick), told her boyfriend that she had lived her life so well she could die now.  (I’m sure I’m paraphrasing horribly here.)

She died that night.

You’d have to read his book, website or blog if you wanted more of the story but the point is that while I was listening to his talk, every single word he said resonated with me.  Sure the details were all a little different but the theme was the same.

Throughout our 10-year journey with Willy and his lissencephaly, we’ve also had to make decisions that are absolutely no less than life or death; quality versus quantity. As a parent, we want our children to live long, healthy lives.  When we find out they are terminal, something in us still begs for them to live as long as they can.  We put them on meds, and make decisions about surgeries and such but the question begs to be answered.  What is the cost of all this?  Is a longer life necessarily a better life?  Some countries that have the longest life expectancies also have the highest suicide rates.

Last spring we had to make one of these decisions.  Willy had been having increasingly difficult pulmonology issues and it became time to consider a tracheotomy.  (http://www.surgeryencyclopedia.com/St-Wr/Tracheotomy.html)

We decided not to do the trache.  For one, Willy loves swimming and the trache would eliminate his ability to swim.  Secondly, the trache often causes infections since it is another opening in your body.  By deciding against the trache, we instead ended up with a cumbersome pulmonology routine that often takes hours a day.  For us, this was a prime example of quality versus quantity.

On July 9, 2004 when Willy was diagnosed in the University of Michigan Emergency Department, we were told his life expectancy would be around two years.  After about twelve hours of self-pity, we decided together to give him the best life we could regardless of the amount of time.

It’s been a tough 10 years.  There have been days we cursed lissencephaly, cerebral palsy, epilepsy, cortical vision impairment, chronic lung disease, wheelchairs, insurance companies, seizures, medications – I could go on.  We worry about what this has done to the other two kids. We wonder to what extent our marriage and subsequent divorce were affected by this.

But at the end of the day, there are small moments of absolute wonderful that shine through like little tiny openings of light in a stormy sky.  Winning a battle with the insurance company. A smile properly timed as if he heard what we said.  Seeing his brother or sister tenderly watch over him while he’s having a seizure. Photos from his teacher as they work hard during the day with therapy, movies, songs, outings, and more.   Appreciating an effective medical team and the fact that one of the best medical centers and universities in the world is in our back yard.

And this from his teacher, Jessica (seen in the photo above with Willy), last week on the note she sends home each day:

“We have never seen Willy smile as much as he did today. We had so much fun with him.”

Look at this.  The child I thought would pass by the age of two is now ten and living a life that, while not without challenges, is happy.  After hours of work each day, after dramatically changing our life plans, after all the ups and downs, we have a happy child.

And there, friends, is my moment of self-transcendence.

http://www.ninds.nih.gov/disorders/lissencephaly/lissencephaly.htm

http://www.dungbeetle.org/

http://www.sph.umich.edu/iscr/faculty/profile.cfm?uniqname=strecher

Original Posting Date on Word Press:
10/8/2014

Did you ever think at 44 you'd be happily divorced, good friends with your ex, soul sisters with your ex's girlfriend (who is his high school sweetheart), marrying the love of your life, and raising your three kids together as a group two doors down from the ex?

Me neither.

I haven't blogged in a while. But with material this rich -- I mean, seriously, you cannot make this stuff up -- I feel as if it's my duty to take you all along with us on the ride.

Without weighing us all down with the dirty details of why my marriage to Todd broke down, let's just say we are much better off as friends and not lovers. Good friends, not spouses. Like brother and sister, not a romantic pair. My best guy friend; the one I'd drink a beer with and fist bump when Michigan State scores a touchdown. You understand.

Anyway, late last year our 16-year marriage came to an end. For so long we had been busy keeping our family together and taking care of our terminally ill son, we didn't have time or energy to devote to us. Then, when we had the time, it became evident that there shouldn't be an "us." Long story short, our divorce was final on my 44th birthday, September 30th, 2014. In the most amicable of all divorces EVER, Todd, his girlfriend Trisha, and my fiancé, Ted, (yes, you read that right, fiancé) all went to the divorce hearing together. Afterwards we did a little shopping and then went to lunch for my birthday. We never get very far from Todd because he lives two doors down. In the middle of what could have been a personal disaster, we have carved out a little life for all of us here two doors from each other.

It might seem strange. Trust me. We sometimes scratch our heads and wonder what just happened as well. But let me tell you what happened. Two people who loved each other very much, as friends, realized the didn't have a true marriage. We found that we were much better matches for other people. We have created a much better atmosphere and environment for our three kids. Our 8-year old daughter, Gabby, who was Wednesday Addams in another life and has a baseline of grumpy grouch, came up to me tonight, smiled, and said, "Mom, I'm happy." She should be happy. She now has four happy adults, two mom types and two dad types, taking care of her. She has more people to help feed her. More people to help her with homework. Four adults who know the value of acting like adults and making a good and happy life for their kids. The same can be said for Grant, 12. He was in the "clan van" (as Trisha calls it) with all four of us the other day. We were laughing and carrying on and he was just kind of quietly looking around at all of us and he smiled. He actually smiled. My brooding, quiet, shy 12-year old smiled. Of course he hopped out of the van as soon as he could when we dropped him off at school. You know, he didn't want to be in there with us longer than he had to... But he smiled.

Tonight I'm laid up with some pain from a root canal. Trisha came to get Gabby to take her to soccer and she also took Grant to a meeting at his school after soccer. I'm just sitting here thinking it's nice to have a step-wife, or whatever you'd like to call her. You can call it whatever you want but this is how I see it: three kids + four adults totally committed to raising the three kids together = a damn happy family.

But seriously. We've thought about pitching this to NBC. I mean seriously. Seinfeld has nothing on us.

Stick around for the ride. It should be crazy!

Crazy good.

Seizures Suck

I always seem to say that Will's seizures are worse than ever.  Truth is, they've never really been controlled that well.  He has periods of time where there are less seizures than others which, in our world, could be considered as controlled as possible.  They seemed to be awful after his recent surgery, then got a little better, now they are back with a vengeance. The neurologist's answer is to keep adding and increasing medicines.  Medicines that are proven to work on certain types of seizures just flat out don't respond sometimes. Then there is the problem with getting the right combination of medicines.

Right now Will isn't really having that many seizures per day considering the disorder that he has.  I'd say he has around 10 or so which is actually pretty good.  The problem with the ones he has are they are so hard on his body.  His limbs all go completely stiff and he makes this awful moaning sound that absolutely breaks your heart. He holds his breath through these seizures and they go for up to 40 seconds each time.  When he finally comes out of it he shakes for awhile while he is postictal but when all is said and done he is completely and utterly exhausted. 

Todd and I have literally been on an almost 24 hour per day watch.  With the exception from about 4 a.m. to 7 a.m. one of us is always watching him.  We've tried video monitors and all sorts of other baby monitors over the years but nothing works as well as your mom or dad keeping their eyes right on you.  Of course, this is no way to live and results in tired and cranky parents. Not to mention the damage it does on the other kids in the household. 

The worst part and what I really just want to complain about is how sad they are to watch. It is horrible to watch your child seize and seize and seize until they are so exhausted they just couldn't do it again if they wanted to.  Add in the whimpering noises and it just tears you apart.  Sometimes I want to give myself one of his klonopins every time I give him one.  

Tonight he had an extra hard one and it presented a little different than usual only in that his limbs were pulled in towards his body this time. Usually they all go stiff outward from his body.  Every time a seizure presents a little differently it freaks us out.  It's the unknown.  Todd was on one side of him and I was on the other.  We were both stroking his hair and talking gently to him during the seizure.  Then we start discussing how long this has been getting worse, the differences in the seizures he is having, who is going to call the neurologist, what we think should be done, etc.  It's all consuming.  And I'm weary of the whole thing. 

Saturday, June 30th I have training at University of Michigan Mott Children's Hospital to become one of the parent mentors in the epilepsy department of the Patient and Family Centered Care Program.  I have to learn how to stand beside new parents after they receive these diagnoses and explain to them how it is going to be okay, when I haven't really figured it out myself yet. 

This is just my way of thinking out loud.  I do not want sympathy.  In fact, I hate sympathy.  I don't think this situation with Will is exclusive to me.  No one gets out of life without their own challenges.  But I just need to figure out a way to help these new parents and make it sound possible.  Because in all honesty, this stuff sucks. 

Life is Crazy, but Good. Crazy Good.

      After our marathon of hospitalizations for Will last year, his neurologist kindly recommended that we get a specialized pediatrician who could help us better manage all of the new specialists Will has to see now.  See, up until about a year and a half ago, Will was fairly uncomplicated, medically speaking.  Seizure control had always been our main issue.  Within the last year and a half, he has become much more complicated which is par for the course with regards to his progressive neurological disorder.  I hate thinking that he has hit his peak and is now on the downward side of lissencephaly but in reality, that is the probable truth. 

He didn’t even have so much as a sniffle over the winter. He’s happy and really has a good life. But in reality, his muscles are losing their strength.  I’m sure there is a medical name for this, atrophy maybe, but every skill he used to have is regressing. He no longer goes #2 by himself.  (Is it socially acceptable to write #2 in a blog post? I hope so because I just did.) He won’t go unless we give him his prescription medicine.  Some days he holds his urine and at some point we will have to use a catheter to make him go.  His head always flops over to one side because his neck muscles aren’t as strong as they used to be. Seizure control is a nightmare and continues to be our main issue. 

Don’t get me wrong; he is still doing very, very well.  He has been very healthy considering all of these new issues. And of course our main goal, his happiness, is always easy to achieve.  He loves to be talked to and snuggled with and there’s always someone wanting to do that. 

This summer will be busy with a lot of appointments.  We will be back and forth to the University of Michigan Mott Children’s Hospital many times.  Will has two surgeries coming up and another week long hospital stay to try the ketogenic diet once again. (For seizure control.)  These are in addition to about 5 other appointments including a dental appointment where he has to be knocked out in order for the dentist to try to clean his teeth.  I get overwhelmed sometimes thinking about the amount of time it takes to care for him.  Todd and I both get caregiver burnout and body aches, pains, and muscle pulls from lifting him.  Some parents with disabled children would say they’d never change things and that their child was exactly how he was supposed to be.  I don’t say that.  If I could change Will and make him normal, I sure would. 

Life is really tough on so many people right now for many different reasons.  You don’t have to have a disabled child to feel as if life is eating you alive. Struggles come in many different forms.  Somehow you just have to keep on.  Navigating through the rough spots brings steadier steps and a deeper appreciation for the beautiful things in life.  It’s okay to have bad days. If you saw the doors in our house you would know that I have bad days because I like to punch things sometimes. (Darn German temper.) But when the dust settles on the anger and frustration, a beautiful calm bubbles up and surrounds us with the grace to make it through another day. 

This is life.  It’s crazy isn’t it?  Crazy good. 

Death Hangs Around

Will is slowly recovering from his latest bout of pneumonia.  For those who don't know, my 7-year old son, William, has a terminal brain disorder called lissencephaly.  He is in a wheelchair.  He does not walk or talk and is fed via a stomach tube.  He was diagnosed at 4 months of age when he had a grand mal seizure.  The general life span for this disorder is about two years.  So Will, at 7, is like an old man. This is a progressive disorder so the longer they live, the harder it gets - on them and on us.

Will has had 6 hospitalizations since last December.  (Which is actually much less than many of these kids so in that respect we are lucky.)  Seizure control and keeping pneumonia at bay are our two biggest tasks. Right now Will is slowly recovering from pneumonia and his seizures are fairly well controlled so in my world, life is fabulous.  He's very happy and is really the cutest kid you've ever seen.

Every week we lose some of the special kids in our "anycephaly" world.  We use that term to include all the children in our network.  There are many brain disorders like lissencephaly that are similar, yet just a little different.  So I will toss the word "anycephaly" around often. One of the kids we lost this week was actually a young woman.  I'm not sure how old she was but she was in her early 20s.  A dinosaur in the anycephaly world. She left this world and left her loved ones sitting by her side and became a true angel.  This is the world I live in. Moderating a group of 468 parents worldwide forces me to get to know these kids and their parents. To create bonds.  To grieve when their kids are sick.  To rejoice when they do something like hold a spoon or grab for a toy.

The cases are all so similar that you begin to picture your child's face every time one of them passes away.  You begin to picture your child in one of those little caskets and wonder when it will be your turn. It's no way to live. It ages you.  It creates problems within your marriage.  It creates problems with your other children. It makes it difficult to get a job and keep a job.  It ruins you financially.  Even though we've always had good insurance (Blue Cross and Priority Health) we are still over $10,000 in debt from things that were only partially covered, not covered at all, co-pays, and incidental expenses that come along with the many hospital stays. It's hard to get a break and the rate of caregiver burnout is off the charts. Some states have nursing care.  In Michigan it's almost impossible to get nursing care for your child.  Todd and I have managed to do it all on our own for 7 years.

Why am I writing all of this?  Here's the thing.  I've really been wanting to get this blog off the ground. I've always been very involved in current events and politics.  I've worked on campaigns.  I've testified for appropriations hearings with regards to health care reform.  I've seen myself evolve from a conservative card carrying Republican to a much more moderate yet left leaning Democrat.  I read other blogs and articles and I have opinions and want to be involved more than ever.  But I.Just.Can't.  None of it seems to matter like it used to.  Not when I spend my days trying to keep my kid alive.  I am so very different than I was 7 years ago (before Will's diagnosis).  I see the sit-ins that are going on around our country and the strife and economic problems we are facing in the United States and I want to yell and scream and protest and run for office to fix it all.  But I scream and nothing comes out. I try to form an argument and it comes out as word vomit. I've lost the edge that I know I once had. I feel as if I've been watered down to "just a mom". And I kind of like it.

Many people have forgot about what really matters. They are driven by things that are much more complicated and unimportant than just living life and taking care of each other.  They argue about silly things.  There is a general lack of empathy running rampant in our world today.  Will's lissencephaly gave me back my empathy.  My ability to feel how others may be feeling has become more fine tuned.  I sometimes wonder what I would be like had Will not been born with lissencephaly. Although I hate to watch Will suffer, I like the person I've become. Typing that out loud feels weird. But it's the truth.  I'm peaceful and happy even though I am worried and stressed.

Because I've figured out what really matters.