"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.
Sunday, August 11, 2019
Monday, July 22, 2019
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.)
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.)
Thursday, July 11, 2019
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.
Grief is mind-numbing.
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.
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.
Friday, June 28, 2019
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.
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.
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.
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.
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.
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.
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 :)
Sunday, January 6, 2019
"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.
Subscribe to:
Posts (Atom)








