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 :)

"And ... that's all."

This will be the final post on our family blog.  Its purposes have been served, both the initial purpose of documenting our children's early years, and its more recent purpose of providing updates about Anna for those who cared about her.

I will continue to write because I understand how important that is for me personally.  However, those writings will no longer be found on this blog.

Since Anna's passing, we have learned that she did not have bacterial sepsis or influenza.  Although we may never have any definitive medical explanations for what happened, we (parents, not doctors ... yet) suspect that Anna's death was directly related to her experiences with cancer.  Her death was not caused by the original medulloblastoma; instead we suspect that her death was caused by the toxicity of the treatments she received.

Thank you to everyone who has come along side our family during the last five years, in whatever capacity that might have been.  Thank you, in advance, to those of you who will continue to come along side us during the next stage of our life's journey.  There will be difficult times ahead of us. 

Included below is a service folder from Anna's memorial service along with the message Matt and I chose to read at the service, for the benefit of those who were not able to attend Anna's service in person.

 

Oh, Anna.  Dear, sweet, Anna.  We will miss you so much.  We already do.

In the darkest moments of 2014 when Anna was in the hospital, what made us most sad as Anna’s parents was that Kate and Ethan would not have enough lasting memories of their sister.  They were both too young to have had Anna’s life imprinted onto them.  Although we are sad and will miss Anna dearly, we are no longer concerned in that way for Kate and for Ethan.  We can see clearly how her life influenced both of them.

Here is what we will remember about our Anna.

Her determination.  Oh, man.  When Anna was a toddler, we deliberately chose the word “determined” to describe the strength of her will.  It sounded more positive than “strong-willed”.  Anna was never exactly an easy child to parent, but she was always an easy child to love.  These last five years, Anna used her intelligence and her determination to achieve many goals that we honestly didn’t think were possible.  We like to think that given enough time and the proper supports, Anna could move a mountain … if she wanted to.

We’ll remember her ability to “assume the best” of someone else, regardless of how awkward a situation might be.  We remember times in public places when a child would abruptly ask her, “What’s wrong with your legs?”  While that child’s mortified parents looked on, Anna would provide a matter-of-fact and age appropriate explanation about why she was using a wheelchair or a walker.

We’ll remember her empathy.  From before Anna even had any words of her own to say, we knew that she could FEEL the emotions of those around her.  There were times in our home when it was harder to deal with Anna’s reaction if Mom or Kate or Ethan were upset or hurt.  She could feel their hurt, too.  More recently Anna had started thinking about how she would spend her future.  She had no fear in telling others that she wanted to help kids who were sick because she knew how it felt to be sick and in the hospital.

Her love of people.  I believe the technical term that followed Anna in her file at the therapy clinic was “socially motivated”.  No matter how difficult a morning we might have had at our house … no matter how grumpy or angry Anna might have been on the way in to school, or church, or therapy, her attitude always turned around when she entered one of these buildings and was greeted with a friendly, “Hi, Anna!”  I remember one specific day in December when she was having a particularly hard time in the morning on the way to school.  When I asked her at the end of the day how her transition to school went, she told me that she was pretty sure her friend Jacob helped turn her day around when he greeted her in the hallway that morning.

Her joy.  I can still hear Anna’s voice in my head saying, “That was fun.”  It didn’t matter how big or small the experience was, she was able to find joy in almost any situation.  A few years ago, when our family watched the movie Inside Out, I talked with our girls afterwards about some of the lessons of the movie … because, you know, I’m a teacher.  When I asked them why they thought the main character’s name was Joy and not Happy, Anna said it was because you don’t have to be happy to find joy.  That joy is something that you can have in any circumstance.

We’ll remember her self-lessness.  The word “joy” describes so much about Anna, whether it was her ability to find joy in the midst of life’s struggles, or whether it was living her life by the acronym JOY … Jesus first, others next, yourself last.  She was always willing to give away her money or her possessions, if it meant someone else would benefit from them.  Unless the recipient was one of her siblings.  Then Anna was a little less reliable about giving away her “stuff”, but she still often did.

We’ll miss her sense of humor.  This kid.  Whether it was knock, knock jokes, the “guy with no arms and no legs” jokes, or corny puns, she loved laughing with us.  Telling longer stories was difficult for her since her experiences with cancer, but we could always count on Anna to pipe up with a well-timed, witty remark.  A great example of this was on Christmas of 2014.  At that time, much of daily living was still a struggle for Anna.  She was wearing diapers at night because she still couldn’t walk. She woke me up early Christmas morning as she often did, by calling out, “Daaaaad!”  I stumbled in, and with a big, smirky grin on her face, she said, “Hey, Dad.  You’re Christmas present is in my diaper.”  And apparently this wasn’t only reserved for us at home. At the visitation on Friday night, we heard a number of stories of Anna’s witty banter with teachers and friends in the hall, as well as stories about getting called out for laughing when Anna made a quiet side comment. There are going to be blank spaces in our family conversations in the future when we are all waiting for Anna’s puns.

Her kindness.  When Anna was in 1st grade, before she was diagnosed with brain cancer, she and I would often walk the ½ mile or so from her school to Kate’s preschool.  While I pushed Ethan in the stroller, she bounced, skipped, ran, and did all of the things a typical 1st grader would do.  I remember one day in particular when she was telling me about a girl in her class named Kacie.  She said that even though Kacie was still learning how to talk, she was really glad that Kacie was in her class … that she was going to keep saying hi to Kacie because even though Kacie didn’t say hi back yet, Anna knew that some day she would.

Her love.  Her forgiving, unconditional love.  When there were arguments and yelling, because there were, because Anna was human and we all yell and scream sometimes, she was always the first one ready to apologize and ask for forgiveness.  Even if the others involved weren’t yet ready.  She was also incredibly free with her forgiveness.  She never held grudges … once she was done screaming about something.

We’ll remember her faith.  The confidence and clarity of Anna's faith was unique for a child her age, or for a person of most any age, for that matter.  For a child with significant memory deficits, she often surprised us during morning devotions with what she remembered of the Bible.  Hers was not a naive faith, however; she pondered many age-appropriate thoughts and asked good questions.  Still, she had an uncanny ability to reduce some of the more difficult faith questions to a succinct explanation.

And she was always so certain ... about Jesus and his love.  She knew that there was nothing that she could ever do that would make Jesus love her any more and she knew that there was nothing that she could ever do that would make Jesus love her any less.

One of the other difficult parts of life in 2014 was the uncertainty.  We never knew what the next day or week or month or year was going to bring.  And that was really, really hard.  Now, we know.  We know with certainty that Anna is in heaven.

A few of Anna’s teachers used the phrase “Thank you for sharing your children with me”.  That idea really struck me the first time I heard it.  It was a very difficult and conscious decision on our part as Anna’s parents to share her with the rest of the world these last five years, but we are glad that we did.  There would not been as many happy memories, laughter, and smiles in our family in the last five years without the help and support of everyone around us.

Often after our family devotions in the morning we would pray that God keep our children safe in their bodies, in their minds, and in their hearts.  We would pray that his love would shine through their lives to the people around them.  Our hope is that this prayer was answered and that God’s love will continue to shine through Anna’s life and memory to the people around her so that their faith in Him can be strengthened.

Music has always been an important part of our family's life.  This song and video has special meaning to us now.

Thank you.