Journaling #5 - January 2020

Reflections on the last year

Has a year really gone by already?  How is that even possible?  We have spent an entire year of our life without Anna here with us.  Some days this part of life’s journey still doesn’t seem real.

I cannot begin to count the moments when I can easily imagine that Anna is at school, just like the other two kids, or that she is in the basement playing along with whatever imagination game is taking place.

Most days my head and my heart know the truth, but some days I’m not so sure.

This experience, Anna’s death, has changed me.  Her whole journey through cancer changed me, too, but this part has had deeper and more lasting impacts on me.  At least, that is my perception as of now.  

My psyche has changed.  My focus has changed.  My body has changed.  My emotional response to many events that come across my path has changed.

I suppose all of these parts of me changed when I first became a mother, too, but this feels different.

I used to think I was fairly evenly balanced between the labels of introvert and extrovert.  Now I am solidly an introvert, who also needs to interact with people to prevent getting stuck in my head for too long.  By introvert, I mean that my personal time recharges me to face the world and that my strong emotions are only shared with those I intimately trust.  My heart must be guarded in very deliberate ways right now.

My nervousness and anxiety has multiplied immensely.  Sometime in the previous 6 years I learned the difference between PTSD and PTS … the D stands for disorder.  PTSD happens when the stress experienced after a traumatic experience interferes with daily living.  I do not experience PTSD, but I still have the stressful after-effects of the traumatic experiences in my life.

I am still confident and secure with who I am, but now I can physically feel the effects of my nerves whereas I don’t ever recall recognizing that connection earlier in my life.  I have to be conscious of my thoughts and deliberately stop unhelpful thinking strategies before they hijack my mind and my choices.

I am continually learning where my boundaries are in terms of relationships and the focus of my time/energy.  Sometimes I step too far and have to retreat again.  Other times I wish I would have stepped out a little more.  I do not believe that I was as aware of the level of my relationships prior to Anna’s death as I am now.  I am definitely more reserved than I once was.

Through my interactions with other parents at our grief support group, I am cognizant of the differences and advantages to my life in the past year.  Most of these differences revolve around time.  Bereavement leave is very, very limited, even for parents.

Because of the structure of our life prior to Anna’s death (a.k.a. Much of my life was spent as Anna’s general contractor), I have had time to deal with my changes and have had the time to support my family as they have dealt with Anna’s death.

In fact, because so much of my life was wrapped up in Anna’s existence, I was forced to deal with her absence in a concrete and daily way.  I had very few distractions to keep me from facing everything head on.

I also had a few key supportive communicators during the previous 12 or 13 months.  Some listened when I just needed to talk while others asked me difficult questions that made me continue to think and process.

As our family was approaching the holiday season last year, people would often hesitantly say, “This must be a hard time of year for you”.  While I know that all of these comments came from a good place, that others were trying their best to be supportive and caring, the reality is that every day is hard.  Each day has its’ own set of challenges, often times connected to how our life has gone, but sometimes just because life in general can be hard.

For me, the quieter, catch-you-off-guard moments are harder.  A song on the radio.  Another child wearing an outfit just like one Anna used to wear.  Having difficulty remembering if a memory included Anna or not.  Those are tough.  The “anniversary days” are tough, too, but I can anticipate those and be somewhat prepared for them.

In all honesty, though, just about every month has its’ own anniversary days involving Anna.  Diagnosis.  Intense hospital moments.  Neutropenic fevers.  Other ER visits.  If I allowed myself to focus on the difficult memories, then I would have an even harder time finding joy in the everyday moments … of which there are still many.

Instead, I talk about the good memories I have of Anna, often saying “Remember when __________” with a smile on my face.  I know the clarity of the hardest days are forever ingrained in my memory files, so why replay them in my head?  I know from experience that I can access those memories if I want to, so I find it healthy to not access them any more than necessary.

I also know that I will think about Anna every day for the rest of my life.  I was once afraid that her presence in my life would continue to subside until one day I would surprise myself by not thinking of her at all.  Until the day when my memory is no longer trustworthy due to age or impairment, I know I will think of her each and every day.

Journaling #4 - December 2019

Now that you are less in “survival” mode, what’s different?

Where do I even begin with this question?

Since I have a logical and organized mind (sometimes, especially if I am assigned a journal entry question), I will start with the logistics and move on to the more abstract.

Each day now begins a little later in the morning and with fewer tasks than when Anna was with us.  We no longer need to give her any water through her g-tube, keep track of who gave her what and when, nor do we need to thaw and prepare her breakfast purees before giving those to her before school.  We no longer need to worry about what kind of mood Anna will be in when she wakes up which would often determine how much help she needed getting ready, nor do we need to help her at all.

Kate and Ethan no longer have Anna to distract the parents in the morning, or brighten their days before they leave for school.

We do not have to leave for school as early since our children are only enrolled in two schools, instead of three.  Matt has taken the kids in to school more often than I have in the last year; he couldn’t do that very easily with Anna along, too.  With Matt’s new job, Kate and Ethan will begin taking the bus to school soon, which would not have been a realistic option for Anna.  Along those lines, we do not have to drop anyone off at the middle school, nor deal with the pick-up lines for that particular school either.

I am slowly losing my anxiety caused by our home phone ringing.  For several years, my first thoughts when I heard the phone ring would be that something happened to Anna, that she fell or threw up or developed a fever or flipped out for one reason or another.  (In reality, I did receive at least one phone call related to each of those incidents during Anna’s three years at the intermediate school.)

The afternoons are now quieter and less busy.  I do not need to drive back in to town to pick Anna up from school, so we are home for good by 3:15 (usually).  I do not need to spend an hour or more monitoring/helping Anna with her homework.

Our evening meals are quieter and have less back and forth interaction.  I think we all still miss Anna’s contributions to our family meals.  Dinners are shorter since we do not have to wait for Anna to work her way through the food on her plate.  There are fewer lunches to unpack, fewer dishes to do, fewer parts to each meal (a.k.a. no dinner purees, either).

Bedtime routines are much shorter.  Anna’s showers took longer and she required a bit of help to make it through the whole process without it taking too long.  Kate and I have continued the habit of reading together in the evenings before she goes to bed, but it’s not the same without Anna making her comments about the plot-line.

Monday mornings are no longer “communication mornings” for me, with a variety of emails sent to teachers, therapists, and/or doctors.  I no longer need to factor in making and freezing purees into my weeks.

Because of the fewer constraints on our time and energy, we have chosen to do other things.  I have been able to substitute more often because I don’t have as much to do at home.  I am volunteering one morning a week in Ethan’s classroom.  Ethan is taking piano lessons one afternoon a week.  Kate has had more parental support as she has taken on the added responsibilities of 5^th grade.  Kate has had more time to hang out with school friends.  The kids and I have done more things in the afternoon hours together this fall than we did before.  Matt has done projects with and for Ethan and Kate this calendar year instead of focusing his creative energies on projects for Anna.

Our home looks different.

Kate no longer has a sister to share her room.  What used to be “the girls’ room” is now Kate’s room.  In October, we finally sent the dresser my dad built for Anna back home with them to hold onto for another time (they have more extra room in their house than we do).  This fall my dad built Kate a desk and a bookshelf for her room.  We have talked about painting her room next spring or summer.  Her room looks very different now.

Other spaces inside our house also look different.

We found new homes for much of Anna’s therapy equipment in January and February.  The parallel bars were actually sold on CraigsList last December, having been picked up the Friday before Anna’s final illness began.  CI was the recipient of some of the other equipment: the shower stander Matt made, the sand table my dad built, the adaptive tricycle.  A local lending program we had donated to previously received Anna’s walker and wheelchair.  Matt took down the ramps by the front door sometime during the summer.  He finally took down the gate in front of the stairs this fall.

The basement now has an American Girl dollhouse that Matt and Kate designed and built last spring/summer.  Ethan has his own workshop space in the basement which was the main part of his birthday present.  I don’t know if these two things would have happened in the same way if Anna were still with us.

Where we choose to go and not go is different.

I rarely go to CI anymore.  I visited with Luke (Anna’s PT) on the Friday before Thanksgiving; that was the first time I was back at CI since August.  I was surprised by the strength of my emotions as I walked up the ramp to go into the building.

I have only been back to the hospital once since last December and that was to hear the autopsy results.  I have not been to any of the other medical facilities that were so often visited with Anna.

Since we no longer have a family member who has mobility challenges, we do different activities.   

We went sledding a few times as a family last winter (or just mom and the kids); we went on lots of hikes last spring, summer, and fall; we attended events (concert, circus, events on campus) that would have been difficult if we needed to be concerned about accessibility.  Kate and Ethan have gone down to the park to play after school and the three of us have explored farther into the field this fall than we ever did previously.

We have to park in a real parking space, but the time it takes us to exit our home or enter another building is much, much shorter.  The kids sit in different seats in the van now and there is less singing along with songs on the radio.  Without Anna along in vehicles, the dynamics in the back seats are different.  The interplay between the kids no longer allows for one to goof off with a second if the third is sulking.  The giggles and silliness don’t last as long with them, either.

The activities we do together as a family inside our home are different, too.

We don’t play games like we used to.  Anna and I played so, so many games.  She and Ethan were just starting to find and enjoy games that they could play together.  The dolls don’t get played with nearly as often.  Neither do the stuffed animals.  The crafting supplies don’t get pulled out for the same reasons anymore.  We don’t listen to 80s rock quite as often as we once did.

Matt and I are more connected and committed to one another.  There truly is no other person besides Matt who quite understands what I have gone through, and there is truly no other person besides me who quite understands what Matt has gone through.  Our lives are more connected than they ever were, but we understand one another more than we did before, too.

The hole in our family’s life is still felt, with more pain some days than others.  The ragged edges of the wound are no longer as raw as they once were, but the spaces in our hearts touched by Anna will always be tender.

Journaling #3 - December 2019

How has being Anna’s mother changed your goals and perspectives?

Whew!  I could probably write an entire book about this one 😊

As I reflect on my adult life, I can clearly see four relatively distinct seasons/periods.  First were my years of teaching during which my personal health and well-being was overshadowed by my hours (and professional goals) in the classroom.  Then came baby Anna, baby Kate, and sweet baby Ethan.  These were the years during which the goals of my personal life superseded those of my professional life.

The next major transition came when Anna was diagnosed with cancer which were followed by my years as “Anna’s mom”, with any other personal or professional identity and goals fading to the background.  With Anna’s death I feel like I have entered an entirely new phase, which has yet to be defined distinctly, but which appears to have the scales tipping outwards to the rest of the world again.

Part of the question, then, could probably be better interpreted as how being a mother has changed my goals and perspectives.

It’s difficult for me to put myself back into those years prior to children, but I can say with reasonable assurance that becoming a mother made me less selfish and more selfless.  Being the sole source of food and comfort for a tiny living human made me humble to a depth that few other experiences could.  My goals were no longer large and/or lofty, but began to focus more clearly on the people in my life and my relationships with them.

I can also say that, for awhile at least after Anna was born, I became more controlling and rigid.  I still remember the frustrations I felt when things didn’t go as I had planned … she didn’t nap long enough, she woke up multiple times at night, the milestones weren’t met in the order and ways in which I thought they were supposed to happen.  But, as I allow myself some grace for these moments, I know I recognized this pattern of behavior and gave myself the goal of consciously letting go of some of that control.  I think I can also say with certainty that this awareness helped me to live in the present more fully and to find joy in small things.  It just took time.

Anna’s experiences with cancer and her death have continued to transform my life and how I prioritize my time, energies, and goals.  The suddenness of her diagnosis and then her death reminded me both times of the fragility of life, which is a remarkable way to see what truly matters in this world.

Faith and people.

Relationship with God and relationships with others.

(With the understanding that for relationships with others to be healthy, I need to be focusing on my own physical, emotional, and mental health as well.)

During Anna’s early days in the hospital, I remember feeling so reassured by Anna’s knowledge of and faith in God.  No matter what happened then (or what happened four and a half years later), I knew with absolute certainty that Jesus loves her, that she loved Jesus, and that she would spend eternity with Him.

I also I remember the gratitude I felt towards the time our family spent developing and deepening our relationships with one another.  Knowing that the energy we had spent cultivating our connections to each other was well worth the effort, I made a conscious effort to continue to make those relationships a priority in my life.

All the other “stuff” of life didn’t matter nearly as much anymore … I can still picture the piles of clothes given to us that stayed in our entry way for months at a time, the pile of empty boxes that stayed next to our back door for weeks at a time, and the 9 months (!!!) in 2014 when people brought us meals two or three times a week.  So, so much didn’t matter.

And yet, during those same months (years), I remember the effort we put into sitting down to have at least one meal together each day, the effort we put into getting our family to church whenever we could or doing “church at home” if we couldn’t physically be present in a worship service, and the determination I felt at continuing our family’s routine of devotions during breakfast.  I’m sure some of those moments I remember through the lens of memory which brings the reliability of the individual moments into question, but I’m fairly confident that 2014 was the year in which I began to consciously prioritize my tasks.  I developed clarity to recognize what was most important and what could be let go.

But the uniqueness of Anna’s needs had a huge impact on how I see the world as well, giving me a greater appreciation for the individuality of people.  Perhaps this started during our days in the hospital when I developed a curiosity about the health care professionals surrounding us.  I began asking questions about who they were outside of the moments in Anna’s room, whether those moments were in other parts of the hospital or elsewhere.

From those early days, I continued to develop relationships with anyone who helped care for Anna … nurses, doctors, therapists, teachers, aides, etc.  As I reflect back on those times, I think I wanted desperately to be seen as an individual, not just as “Anna’s mom”, and I thought (perhaps not consciously, though) the best way to have others see me as my own person with my own identity was to see them as individuals, not just as their title or defined by their role in my life.

In addition, living with and caring for someone who had such profound physical needs removed some of my previous discomfort with people who have physical and cognitive challenges.  As I’ve learned in my more recent experiences in schools, I don’t get scared away from tricky situations very easily anymore.

I also became very adept at looking for any progress that Anna made, which allows me to interact with those who have a variety of differences with an empathy and understanding that I did not have prior to Anna’s cancer diagnosis.  I can find good traits in just about any kid I meet, provided that I have enough time 😊