January 8, 2019

January 8, 2019

Dearest Anna,

Today was supposed to be your MRI day.  How you looked forward to these days!  You and I always were able to spend some time together just the two of us while we waited for the nurses and doctors to have everything set.  Your favorite part was “taking a three hour nap”.

Once upon a time, anesthesia did not agree with you.  But in the last few years, we had found just the right cocktail of medications to ease your way into and out of anesthesia.  When I would be called back to your side, we would start by listening to quiet, calming music.  Then, I knew you were coming back to yourself when you asked for different music.  I also knew when our time in the Campground was coming to an end because you would start asking to play games again.

You were always such a good sport about the MRI days.  You never complained about having to wear a diaper; the IVs didn’t bother you; and you thoroughly enjoyed the special time with me.

I don’t know what the doctors will ever say about your cause of death, but I believe in my heart that something would have shown up on this MRI.  I was so afraid of having to make any more hard decisions regarding your body.  If the scans had shown a secondary cancer, which I think they would have, you and Dad and I would have had to decide how it would be treated.

I didn’t want to go through that again; I didn’t want YOU to have to go through that again.  Although we would have done whatever was necessary, it would have been much harder than it was the first time.  It would have been harder because we would have known more about what we were doing to your body, your mind, and our family.  I believe that we were all spared from having to make any of those decisions.

But I miss our MRI days.  I enjoyed them, too.  The older you became, the fewer opportunities we had to hang out together, just the two of us.

Jesus loves you and so do we.

Mom

A different time.

And now for something entirely different.

Last year I did a lot of writing.  Letters.  Some sent to others.  Some kept for me.  Journal entries.  Random thoughts.  A family journal.

Most of these writings I kept private.  I was not ready to share some of my deepest thoughts and fears with others outside of my family, making myself vulnerable to the world.

But, with the different time we live in now, I thought these writings might offer a nice change of pace for reading material.  As I started rereading some of them in preparation for posting them, I found the different topics a refreshing change from the fast-paced, fear-inducing words that are prevalent now.

Many of these words were written a year or more ago.  I am farther along in my personal journey than I was at the time the words were written.  And yet, writing them down at the time helped.

What I will post in the coming days and weeks are not all-inclusive of my writings from last year.  Some things will remain private, most notably anything regarding Matt and the kids.  The choice to make personal writings public is an individual choice.  I will not take that choice away from them.

But my choice right now is to share some of my personal journey in the hopes that it helps someone else.

Christmas Letter (with pictures!)

Merry Christmas!

As with many aspects of life these days, the Christmas season brings a complicated mix of emotions for our family.  We strive to find a healthy balance with the thoughts and feelings we each experience, finding ways to remember Christmases past as we work to make new memories together, and discover how to celebrate the joy of the season while at the same time honoring Anna's memory and continued place in our lives.

Although 2019 included many painful adjustments to our lives, we have found ourselves well supported and continue to heal individually and as a family.

Kate finished 4th grade with a flourish just a few short weeks after she turned 10.

The beginning of 5th grade has brought with it added responsibilities and independence, but Kate is weathering the experiences well.  She enjoys opportunities to plan, record, and edit videos for Student Council and the Waubesa Word, her school's weekly news broadcast; and has begun learning to play the viola as part of the school's orchestra program.  (She's also taking lessons from her god-mother!)

Kate's preferred activities these days are writing, reading, creating, and playing all while having a tender heart for animals (except spiders).  She remains active in 4H, having earned county fair ribbons this past summer in creative writing, poultry (for a poster, not showing the chickens), and art.

Ethan ended his kindergarten year by being selected as his classroom's Super Spartan Star, before taking the summer off of academic responsibilities in preparation for 1st grade.  Ethan continues to endear himself to most adults with whom he interacts and is soaking up all of the learning experiences this school year has to offer.

Ethan began formal music lessons this year to help fuel his innate desire to interact with all things musical.  After a handful of ukulele lessons this summer, he has been taking weekly piano lessons this fall, looking forward to his practice times with mom and even asking to use a metronome (!) during practice.

In addition to his passion for music, Ethan also inherited a passion for building and tinkering.  Given free time, he can often be found building in his very own workshop that he receives as part of his 7th birthday celebration.

I have continued to substitute teach periodically in our local school district this calendar year, finding joy and satisfaction in being able to use many of my experiences to help other teachers and kids.  I have also continued to share what I have learned about children affected by cancer with educational professionals through a handful of invitations to be a guest presenter.

I was able to grow many vegetables and fruits in the yard this year, un spite of the shorter-than-average growing season.  In addition to gardening, I also thoroughly enjoyed going hiking, biking, and swimming with Ethan and Kate all summer long.

After 13 1/2 years working at GE Healthcare, Matt took a new job in December at Trek Bicycle Corporation.  Although he will miss the comradery of his co-workers (yes, Matt sometimes likes being around people), the relationships he had were no longer enough to offset the negative aspects of working at GE.  The new position (and longer commute) will be the cause of many transitions for our family, but we are optimistic that the shift will be a healthy one for all of us.

Our family was able to make some special memories together this year:

meeting acclaimed children's author Patricia Polacco,

participating in a family camp in the Kewaunee Peninsula,

camping at Wyalusing State Park,

donating a bench in memory of Anna at McDaniel Park in McFarland,

walking with a few dozen friends and family at the annual BCCN Superhero Run in Anna's honor,

and attending a For King and Country concert in Madison (the kids' first concert!), among other things.

As you celebrate Christmas this year, we hope you are able to create positive memories with friends and family, find joy in small moments, and rejoice in the birth of Jesus, our God, Savior, and Friend.

Summer

"So how's your summer?"

An innocent question.

A conversation starter.

One that is never asked with the intention of causing pain.  And yet … There's no easy answer.

We have talked as a family about possible ways in which we can answer that question.  For many circumstances, we simply give the short response of "good" or "fine".  But is that completely honest?

In situations that are more familiar, we sometimes feel comfortable giving the truer response of "different".  However, saying that usually reminds others of just why the summer is so different for us.  We often have to prepare ourselves mentally for the expected sharp intake of breath and then long pause from our listener if we plan on going with the more honest answer.

But, now that the calendar says it is August (!), I feel ready to answer some of the typical summer questions, where I may not have felt confident in my answers a month ago.

"So how's your summer?"

Different.  But we still have had plenty of opportunities to make good memories as a family.

If you wonder just how different this summer is from any of our family's previous summers, please understand that everything is different.

Our morning and evening routines are different.  Our mealtime routines and conversations are different.  The daily chores and expectations are different.  Places we go and do not go are different.  How we choose to spend our time is different.  Where we park is different.  (That's Matt's addition :)  Who we see and don't see is different.  How we feel about most anything might be different, too.

The list could go on and on.

But, we have had plenty of opportunities to make good memories together as a family.  We have had lots of smiles, laughter, jokes, and good times interspersed with tears both private and shared.  Sometimes the shared sadness makes for important memories, too.

"Did you go on any trips?"

Not really.

We participated in a weekend family camp up north in the Upper Peninsula of Michigan just after the 4th of July.  That was fun.

The kids and I went on our yearly blueberry-picking visit to my parents' place.  That was also fun.

We are hoping to go camping yet before school starts.  Other than that, we've managed some fun day trips to state parks, beaches, downtown, etc.  We've had plenty of good moments close to home, too.

Personally, I took a trip down to Birmingham, AL, in June to visit a friend and gather some information.  More on that another time.

I also did a short trip down to St. Louis in July for my uncle's funeral.  Although his passing was not unexpected, he will be greatly missed by those who knew and loved him.  I was thankful that I was able to go, spending time with extended family in a way I hadn't done in years.

Were the kids in any camps or anything?

Yep.

The kids took a few classes during the first session of summer school; that worked for us, especially since their first class didn't start until 9:40 :)

The kids also did a week of Lake Waubesa Bible Camp again in early July.  Unlike last summer, though, they both had buddies in their groups, which made the week more enjoyable for them.

Kate went to 4H camp again this summer with a couple of friends, shortly after the Dane County Fair and all that entailed.  The 4H camp was tiring (again), but Kate seemed to weather the experience better than she did last year.

Kate also participated in a writing camp in August with a friend from school as well as a week of summer orchestra (which was only about 30 minutes a day).

We seemed to have a nice balance this summer with some activities and plenty of down time.  I think it took us a little longer to find our summer rhythm than it has in previous summers, but we have continued to adjust and find ways to enjoy our time together.

How was your garden?

Fine.

As with every year, some items do well while others have issues.  This year we had an incredible harvest of peapods and raspberries while the broccoli, zucchini, and cucumbers are on par with other years (especially since I chose to plant less of each of those this year).  The new crops we tried were celery, brussels sprouts, cauliflower, and popcorn.  So far so good with each of those.  The peppers and tomatoes are looking good as well, whereas the potatoes survived the beetles in June and are still actively making their tubers.

My issues thus far were related to a fungus that damaged some seedlings I started downstairs, the cold winter which damaged our peach trees and peach crop for the year, and the groundhog which took up residence under our woodpiles.  Mr. Groundhog plumped up on many of my green beans, but after a couple of weeks of battling with this oversized rodent, we finally won.  He won't be eating any more of my garden produce now.

In general, my attitude towards my garden is much more relaxed this year.  I still enjoy parts of the process, but we will have to see if this hobby is where I choose to put so much time and energy in the future.  With that said, I still appreciate having a space of my own over which I can exert control, even if I have to deal with the unpleasantness of critters and weather.  And, the food is delicious.

How are the chickens?

Good.  The hens from last year are in prime laying mode.  We typically get between 1 and 4 eggs a day from the ladies.  We've had a surplus a few times and found others who enjoy these tasty eggs as much as we do.

We received 3 chicks this spring from a friend who has access to eggs that are hatched in elementary classrooms.  We accepted the chicks not knowing their breed or gender, but hoping for the best.  We guessed their breeds early on based on how fast and large they were growing (a dark brahma and two brown/red cochins, in case anyone is interested).  We also suspected early on that at least two of the chicks were roosters … bummer.

As the summer wore on, we learned that all three birds were roosters … big bummer.  Not only are we technically not allowed to have roosters in our neighborhood, but the boys were crowing louder and louder and starting their vocal competition with one another earlier every day.  Plus, they were starting to get aggressive with one another.  So, we had a different kind of harvesting day recently and have some meat to put in the freezer as well as our vegetables.

Are you ready for school to start?

Nope.

With how different the summer has felt and been for us, it also seems to have slipped by rather quickly.  I will miss the kids when they are back at school; we will all miss the more relaxed pace of summer; but hopefully the weather will still be pleasant for a few more months.

Remembering Anna

One fear we have is that as time passes, those who knew Anna in this life will forget her.  We fear that as the years pass and new memories are made, the memories of others that involve Anna will fade, be replaced, or even disappear.  We learned in our group at Agrace that other parents have a similar fear.

We recognize, however, that these fears are unfounded.  Although Anna will not be included in the new memories being made, she will always be a part of the memories that are already there.

Some of the most uplifting interactions I have had in recent months are when someone says "I saw _____ and thought of Anna" or "_______ made me miss Anna today".  Those specific bits of communication give me confidence that Anna will continue to be a part of the people who knew her, just as she will always be a part of our family.

Even though I know Anna won't be forgotten, we have participated in a few activities this spring/summer with the express purpose of remembering Anna together.

Books, Flowers, and Bookmarks

Shortly after Anna's memorial service, we thought it might be nice to do something with the flowers that were on display.  Neither Matt nor I have much experience with drying flowers (or decorating for that matter) so we asked our book club friends in McFarland if they were interested in helping.

A few of the families in this book club are ones we have known in one way or another since Anna was a baby; others we met along the way.  Many of them were involved in the organization of Songs for Anna in 2014.  Many of them attended Anna's birthday parties both before cancer and post-cancer; several of them included Anna in birthday parties during the last several years.  Many of them are considered part of our "McFarland family".

When we asked them to help with the flowers, one family had experience drying flowers whereas another family just happened to have an unopened flower press on hand.  They got to work right away drying the different flowers.

As time passed, it was decided that we would meet up at someone's house to create a shadow-box display with the flowers for our home and then make bookmarks with the flowers and leaves that were left.  Knowing the hearts of the organizers, I asked if a couple of Anna's friends from other circles could be included in this afternoon of art and creation.  Of course, they welcomed whoever would be able to attend, so a close church friend and a good therapy friend both joined in.

One Sunday in early April, we all gathered at a friend's house for a beautiful afternoon of remembering and creating.

The bookmarks were distributed among the families in attendance, our family, and other close friends and family.  Our family loves being able to use our bookmarks on a daily basis.

We have plans to meet again in August to finish up the shadow-box project and enjoy one another's company.

Yearbook Signing

Sometime in May, I remembered that we had ordered a yearbook for Anna's 6th grade year so I contacted Anna's case manager to see what could be done about that.  Of course, this thought had already crossed her mind and she had plans to share.

During the usual yearbook-signing time, Anna's yearbook was passed around and made available to students and staff who wanted to sign.  We picked the yearbook up on the last day of school and were very touched by the messages left, both by peers and staff.  Their notes provided us with a window into how Anna will be remembered by those who knew her in her school circles.

We will treasure the yearbook as much as we treasure the memory cards from Anna's visitation and memorial service.

McFarland Sparks 4H and the Badger Childhood Cancer Network

Each year our 4H club applies for funds from a county endowment grant to help finance a local, community-impact project.  In years past the club created a "pizza garden" in the community garden and developed a beautiful mosaic sign for the youth garden.

Last fall when the topic came up at a regular club meeting, one of the ideas presented was to create care kits for local children undergoing treatments for cancer.  (The organizer of the grant didn't know Anna at the time.)  At the meeting, Anna piped up with her characteristic optimism and bravery, sharing how she understood firsthand how meaningful those kits can be.

Anna's voice sharing her personal experience sealed the deal for many club families and it was agreed that this would be the project.  In November, we were able to connect our club's grant organizer with the Badger Childhood Cancer Network, since the BCCN already provides these type of kits.

Then Anna passed away and the project took on new meaning.

Our club used the endowment grant to purchase the bags given to newly diagnosed families, the community participated in an Amazon wishlist fundraiser (which will continue to be active for anyone wanting to donate items) to purchase items for the kits, and members of our club spent an evening in July filling the bags.  Each 4H member chose an age range and gender, grabbed a bag, and stuffed it full of toys, games, and other items to provide comfort and distraction to children with cancer or life-threatening blood disorders.

A poster explaining the experience was created and was shown at the Dane County Fair.

"In Loving Memory of Anna Mischnick"

We are in the process of having a bench placed in Anna's honor at McDaniel Park in McFarland.

During the spring I had the idea that it might be nice to have a bench in our community for others to visit and remember Anna.  The whole family took to the idea and we chose McDaniel Park as the location.

McDaniel Park has been one of our family's favorite local parks for the last decade, beginning as soon as Anna was old enough for parks.  The beach, the pier, and the playground provided us with an ideal place for picnics and playtime when the kids were young.  More recently, our family enjoyed the opportunity to use the Lower Yahara River Trail connecting McFarland to other parts of Dane County.

We thought this would be the ideal location for anyone in McFarland to visit as well as other friends in Dane County if they're willing to take a bike ride on a beautiful boardwalk.

After we made our initial inquiries with the Village Public Works Department, we learned that some final landscaping adjustments would be made at McDaniel Park this summer after the major work of the last few summers that was required for putting in the bike path.  Our request was perfectly timed.

The bench has been ordered and will be placed later this summer (probably in September).  I will be sure to update this post when we know exactly when the bench will be ready for use.

We would love to receive a note, text, message, picture, etc. of when others stop by the bench to remember Anna.  Then we will continue to be assured that those who knew Anna will continue to carry her with them in their hearts.

BCCN Superhero Run

Our family will be participating in this year's Badger Childhood Cancer Network Superhero Run on Saturday, September 14.  More accurately, we will be walking in the 2 mile walk :)  We created a team called "Amazing Anna's Awesome Team" (which was the great name created by friends in 2015 when Anna was an honorary superhero) and hope to see members of Anna's "teams" that morning as we walk, remember, and raise money for other local kids in need.

Please consider registering to join us here.  Or you can simply donate in Anna's honor here.  (We haven't been able to find a way to donate to Anna's team without registering yet, but hopefully those kink will get worked out of the system soon.)

In our home

Our family has its own ways to talk about and remember Anna.  We think of her often and her name comes up in our conversations almost every day.

We have taken some time to deliberately remember Anna, too, especially around her birthday.  However, those remembrances will remain private.

(I am continually conscious of protecting my heart and the hearts of my family members.)

One Mother's Experiences with Grief

As with most everything these days, resources abound related to grief and the grieving process.  Books, articles, personal stories, blogs, etc.  I have chosen not to read much about how people grieve, similar to how I chose to trust the medical experts while Anna was going through treatment instead of spending my time researching more than was necessary.

This time around, I merely scratched the surface with my learning, which was mostly from the resources provided to us through Agrace.  Some of the generalities about grief I have found to apply to my situation; others not.  Below are some of the ideas that resonated with me and my personal thoughts regarding them.

The term grief applies to more than crying.

Grief is not something one can fully understand unless they have experienced the depth and complexity of emotions that come with the loss of someone or something dear.  I used to think that the term "grief" applied to only those times when sadness reigns because of that loss.  I have learned otherwise.

For me, "grief" has been like a whole mind-body illness which is taking long stretches of rest and personal grace from which to recover.

Grief can be physically painful.

Yes, yes, yes!  I was completely unprepared for the intensity of my body's physical reactions to Anna's death.  January and parts of February included more physical pain than I had experienced in a long, long time.  I am still learning of ways in which my body reacted and is continuing to react to the trauma and loss I experienced.

I liken it to an intense earthquake of emotions and related hormones that have continued to surface as aftershocks.  I anticipate this aftermath to last for some time yet.

The "Steps of Grief" may not happen as steps.

For me, grieving has been cyclical with a wide range of thoughts and emotions that tumble over one another, often at odd times.  Some days include the entire spectrum of those emotions, which is okay.

Grieving might include more than the loss of a loved one.

Yes!  Much of my life and personal identity during the last five years was as "Anna's mom", to the point where I was caught off guard when someone outside of my family called me by my name.  My friendships, daily tasks, planning, and decision-making often included Anna as a major part.

In January, I had the realization of just how different my life was going to be when compared to what it had been in December, and not simply because Anna was no longer with us here on earth.

Many of the people with whom I interacted on a weekly basis were no longer a part of my life.  Many of the aspects of my identify were suddenly gone.  No more therapists, no more doctors, no more nurses, no more educational team.  No more regular contact with other 6th graders and their families.  That whole part of my life was suddenly gone.

It was as if a lightning bolt struck the tree of my life and half (or more) of my trunk was separated from the remaining tree.

My life since February has included the beginnings of finding my new place in the world, reinventing who I had become during the previous five years.

Grief is exhausting.

Yes!  My physical and emotional strength and stamina were completely wiped out in January.  In February (when the physical pain was beginning to subside) I chose to begin the process of rebuilding that strength and stamina.

Building physical strength and stamina was easier.  At first taking short walks was about all I could handle each day.  Thankfully, I have been able to increase my abilities to the point where I can take care of myself, my family, and my garden, and have fun doing those things.

However, my energy and stamina are still not where they were a year ago.

Building emotional stamina has been trickier.  Re-entering the world outside my home came in baby steps, first participating in activities at church, then in the community, while I rounded out the school year with a handful of substitute teaching positions (most often as an aide).  I am not exactly sure what the fall whill hold, but I will enjoy these summer days while they are here.

Some of the steps were more challenging than others, and sometimes I took too big of a step, causing me to stumble.  But I am hopeful that I will continue to improve.

Which leads to ...

It is important to protect my heart when and where I can.

I chose to disengage with Facebook just after Anna's death.  No one made posts with the intention of hurting me, but too many posts were causing me unintended pain anyway.  I harbor no resentment regarding any of those posts; I just didn't want to see them anymore.

Closing off that part of the world was a very healthy choice for me.  I have enjoyed my face-to-face and letter-writing interactions immensely this calendar year.

I also found comfort in removing myself from other situations in order to protect my heart.  I can be responsible for my own mental well-being by making a subtle and (perhaps) graceful exit when the need arises.

Laughter is just as important as tears.

Actually, laughing is some of the best medicine.  We joked in our group at Agrace that perhaps we laughed too much together as a group.

One of the best humorous stories that came up was when the parent group was lamenting about how others seem to be afraid to say our dead child's name.  One parent questioned, "Why?  Are they afraid that they're going to remind us that our child died?  Oops!  You're right!  I forgot that he/she died!  (slaps forehead)"

Grief is mind-numbing.

My brain alternated between numb and hyperactive during the winter and spring.  I found it helpful to spend hours of my days in February reading some good middle-grades fiction books.  The stories distracted me enough during both extremes.

Then when I became restless with the long winter, I found satisfaction in cleaning out many of the spaces in our home that hadn't been sorted through in more than 6 years.

Grief is like an onion.

In many situations, it would be much too painful to slice through the entire grief onion all at once.  We have found this to be true in our family, too.

Sometimes, I can anticipate when another layer is coming off and am able to stall until I find a safe and comfortable place to deal with the pain.  Other times I am caught off-guard by the layer.  Every once in awhile, I can sense the waves coming and have the ability to divert my brain to another task before becoming overwhelmed, at least until I'm ready.

As the various layers come off, they often bring tears.  Once that layer has been removed, however, my brain can settle on those thoughts without as much pain.

Children grieve like they eat an apple.

Take a bite.  Set down the apple.  Go play.  Come back later to take another bite.  Get distracted.  Forget about the apple.  Get hungry and go get another bite.  Go play again.  Wonder what happened to that apple.  Go get another bite.  And so on.

True.

Often times I experience another layer coming off of my onion when one of my kids takes another bite of their apple.

Grief is unavoidable; it must be walked through.

It doesn't work to ignore the pain, be it physical or emotional.  If it's not dealt with, it just gets worse.  The only way to get to the other side of this valley is to keep going forwards.  We can't go back.  We can't go around it.  We can't skip it.  We have to just keep going through it in the best ways that we know how.

So that's what we're doing, walking through this valley of grief.  It will continue to take time.

Anna is never far from our thoughts.  We think of her and miss her every day.

Moving Forward

With passing the six month anniversary of Anna's death as well as her first birthday celebration without her, I am ready to use this blog to make some of my writings and thoughts available to the world outside of our family.

A few months ago I learned of the concept of "moving forward" as opposed to "moving on".  Initially those two phrases seem to carry a similar meaning.  However, I appreciate the slight change of feeling that comes with "moving forward".

Moving on implies that Anna's life and role in our lives is over, that we have closed that chapter in our lives.  Moving forward gives the impression that we will always carry Anna with us in our hearts and minds, that she will always be a part of us and our family.

We are moving forward with our lives.

I would like to offer a few disclaimers to how this blog will be written moving forward.

First, although I may choose to chronicle some of the daily events, milestones, and other activities of our family as a whole, I will be sharing very little about the grief experiences of Kate, Ethan, and Matt.  Their thoughts, feelings, and actions belong to them and I will honor their privacy.

Second, I am choosing to continue writing on this blog because I want to.  I do not feel any obligation to do this nor do I feel like I owe anyone an explanation for what has been happening in our life.

And yet, I know the people who love us still care about us.  I know others have questions.  I would.  With everything that happened during Anna's experiences with cancer, I found it easier to answer some of those questions once, instead of over and over again, or instead of encountering situations where people want to ask, but may not feel comfortable doing so.

Third, although I have learned plenty about myself, my family, and my grief, I am not an authority on grief in general just like I was never an expert on pediatric cancer.  I will choose to share some of what I have learned, but genuinely recognize that another individual's experiences with grief can be (and often are) vastly different from my own.

Without further discussion, here are the typical answers we have provided to the general questions we have been asked.

How are you guys doing?

My answer to that question varied quite a lot in January and February, depending on how I was feeling at that particular moment of that particular day.

My first response early on was typically "Well, I'm here", meaning that I got up, got dressed, and left the house that day to emerge into the world for whatever reason.  Some days (especially if the sun was shining), I might have even said "Well, I'm here" with a smile on my face.

As the daily tasks of life were less of a challenge for me, I began answering the "how are you doing?" question with, "We're managing."  That was true.  We had many adjustments to routines and changes in family dynamics, but we could manage the general expectations of work, school, and life while making those transitions.

Early on in this process, I would also often respond with "This all still really sucks … and ... life goes on."  Life went on and returned to normal for others much more quickly and easily than it did for us.

More recently, my answer is "We're fine.  Really, we are."  We still have hard days, or more accurately, difficult moments of days when we feel the pain of Anna's absence more acutely than at other times.  But, we are continuing to adjust to life and are finding plenty of reasons to smile and laugh in this new life of ours.

(On a side note, we have the reassurance of our family's "okayness" from a few specific friends who have either professional or personal experiences with grief/other crap that happens in life.)

Is your family going to counseling?

Good question.

We were told in early January by a trusted friend to pursue a grief support group at Agrace.  This friend did not ask or suggest, she simply called me and said, "I want your family to go to grief counseling at Agrace."  At that time, she was probably the only person who could have said that to me with the ability to break through my turmoil of emotions, providing me with the proper motivation to pursue a support group.

After a few months of waiting for an opening in a group that would be a good fit for us, we began attending a grief support group every other week.  Much of our experiences at Agrace will remain private.  I will share, however, that the experience has been a very positive one for us and we will continue to attend in the fall when the program begins after summer break.

As parents, the group has removed much of the isolation we felt at losing a child.  Although no one should ever have to experience the death of their child, we found comfort in the shared experiences and emotions of the other parents in our group.

As a family, attending the group provided us with a safe time and place to talk about Anna, specifically with others who understand what it means to have a child or sibling die.  The conversations in the car on the way home were very healthy for all of us.

What were the autopsy results?

Another good question that, understandably, no one really wants to ask and yet also wants to know.

Although the doctors did their best to solve the mystery of what happened to Anna's body to cause her death, they didn't learn very much.

Here's what we did learn when we received the autopsy results in March.

Anna's medulloblastoma did not return.

There was nothing structurally wrong with her heart.

Anna developed viral sepsis, which probably started as a viral infection in the mastoid area (bone behind the ear), which quickly caused widespread and fatal organ failure.

Most often mastoiditis begins with an untreated ear infection, but we do not think that this was the case for Anna.  Since Anna never had an ear infection as an infant, toddler, or child, I'd be surprised if she randomly developed one when she was 11.  In addition, four different doctors checked her ears during her last 48 hours and all said at the time that she did not have an ear infection.

The doctors were unable to determine the specific virus, but assume it was very aggressive.

There was nothing that could have been done differently by either our family or the medical community in Anna's last 48 hours to have changed the ultimate outcome of this illness.  The speed and intensity of Anna's illness surprised everyone.

However, we will be forever grateful that Anna was receiving the best medical care possible at the end of her life.  Because of our role as Anna's medical advocates, she was in the ER of a children's hospital before her symptoms became severe.  We recognize that our family would have different memories if Anna were in our home instead of at the hospital the Thursday night that she died.

The doctors were unable to find evidence of a connection between Anna's treatments and her death.  However, we were told unofficially that her treatments probably played a role in the course of her illness, although there will never be any proof of this.

My intuition as Anna's mom tells me that her death was linked to the cancer treatments she received in 2014.

Back in December, we asked others to pray that our family has peace and that we find comfort in each other.  We asked others to pray that we have people to lean on and to hold us up when we need it and that they are able to carry us for as long as it takes.  We asked others to pray that we experience God's presence in our life.

Thank you to those of you who have prayed these specific prayers.  They have been answered (and continue to be answered) in many ways, by many people, and sometimes when we least expect it.

As some may know, certain members of our family have what we call their "birthday flowers", depending on what is blooming in our yard around their special day.  Anna's birthday flower has always been orange daylilies.

Most years the first blossoms open during the week prior to her birthday; one cool spring I remember the first blooms opened on her actual birthday.  With the extraordinarily late and cool spring this year, we weren't expecting any of our flowers to be open in time for June 27.  Our main patch of lilies looks like it needs at least another week.

And yet, on the morning of June 27, I discovered this in the back yard.

The flower still puts a smile on my face whenever I think of it.

In the coming weeks, I hope to record some of my other thoughts on this blog and, with my family's permission, add some pictures and stories about what we are doing now that summer is finally here :)