Hope and Grace

In a recent conversation about my decision to start blogging, my Aunt Lee Ann made the valid observation: I have not defined grace.  The English teacher in me knows to reply “there is not a single definition of grace” is a side-step to addressing her question. However, over the past five years, grace is the single word I continue to come back to in my moments of need: need for hope, need for love, and a need for acceptance of my grief.

I believe grace, like grief, is fluid in action and interpretation.
I believe grace is obtainable, but not quantifiable.
I believe grace is striving for hope and patience when we feel all is lost.

In six months, Courtney and I have lost three of our cousins, my aunt, and a great-aunt.  Reflecting on each loss I remember the love of the individual and how much they each gave to my life.  Most of all, I empathize for the sisters, children, wives, husbands, grandchildren, mothers and fathers who are now desperately finding ways to survive.  Aunt Lee Ann shared with me that she feels “we are so sad because we loved them so much.” I believe this is true.

When I say I am trying to find a way to grieve gracefully, I mean I want to find a way to balance the loss I feel with the happiness and guilt I have for still being alive. The stages of grief (denial, bargaining, acceptance, anger and depression) are cyclical not linear. I believe this cycle is part of life and where we are on its spectrum is constantly changing.

We began the grief cycle when Josh was diagnosed.  We made the most of each day we were given with him, yet, we began to grieve when they told us he would die.  We grieved the life we had hoped he would have. We bargained with anyone who would listen. We began grief and marriage counseling.  Depression was a constant battle, but we continued to win the battle armed with each day Josh lived.

I write to remember the good days
I write to remember each day

After his diagnosis, we traveled to see family.  Family came to see us. Our community became our extended family.   We went back to work. Josh went back to daycare under the watchful eyes of Ms. Julie and her four-year-old grandson, Aiden.  

We read books, played with the dogs, and did our best to not focus on the end, for fear of losing the present.  Josh experienced all he could of the world from the backseat of our Toyota Corolla and his enclosed bike trailer. We went for bike rides with friends, rode trails through Glacier National Park, and rode around our neighborhood.  We traveled to California for a family wedding where Josh sported a tux-sweater knitted for him by his Grandma. On the trip, we held Josh in his car seat so he could see the Pacific Ocean. We watched his eyes light up at the colors, when we toured the Monterey Bay Aquarium.  We made the most of what we could while his health tolerated it.

We celebrated Josh’s first birthday with friends packed into our tiny home.  We had angel-food cupcakes and a papier-mâché piñata filled with candy. It was a time for celebration; yet, we all knew it would more than likely be the only birthday we would celebrate with him.  

Later that week, Courtney had a copy of Joshua’s footprint tattooed on his right calf. I had “Be strong & courageous -Joshua 1:9” tattooed on my right foot.  We did not want to wait until after his death to get the tattoos so when people asked us why we had them, we could honestly answer, “to celebrate our son’s first birthday.”

Eventually, a feeding tube, oxygen mask, 2 hour rotations of medicine and Josh’s weakened immune system ended our travels.  Even during this time, we searched for the positive in the cycle of grief.

We were able to keep Josh at home instead of having to hospitalize him.  Our home looked strange to visitors, but to us, it was still that: home. The guest room became a storage closet for the oxygen machine and other medical supplies.  Instead of going to the doctor, a doctor came to us. It was explained to us that the hospital and hospice have conflicting missions: a hospital works to keep people alive and hospice provides the resources to be able to die pain free.  We will forever be thankful to the large care team, from the hospitals, clinics, and hospice who cared for not only Josh, but Courtney and me during Josh’s life.

Hospice provided us with three hours of respite care a week for the final months of Josh’s life.   The idea of needing a “break” from my terminally ill child seemed like poorly used irony. I felt guilty knowing how many other mothers could use a few hours each week away from their infants.  The respite provider could not push meds, but she could change diapers, read books and hold Josh while we went out for groceries or for a quick run.

One special respite provider, Mama J, grew to become a part of our family.  She would join us at ten o’clock at night and would leave at six in the morning.  The first night she was with us, I was concerned about how much she was using the suction machine. It took me a while to realize it wasn’t the suction machine making the noise, but Courtney snoring. It had been over a year since we had slept in a dark room without the sound, light, and noise of the baby monitor.  I closed my eyes and fought tears knowing soon we would sleep in darkness every night.

Since Josh’s passing, Courtney and I have had to respond to some fairly ignorant statements from people regarding the loss of our son (i.e. comparing the loss of our child to the loss of a beloved dog). On days like this I find myself cycling back towards anger. When I am asked to check a box on a form to indicate how many children I have, I stare at the form reeling between denial and acceptance.

It is my hope to gracefully stumble through life and not become lost in this cycle. I am not writing this blog as a how-to grieve.  I hope only through my vulnerability I am able to provide a voice for so many of us who need to know we are not alone.

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