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.