The Unpredictability of Grief
Noah called on his way home from picking up the kids from school, and asked me to prepare a snack for everyone. As I began the task I felt a flood of emotion swell up in me. I had an overwhelming need to prepare Jaidon’s meal, and it felt like I couldn’t stop myself as I reached in the cupboard for his oatmeal. As I stood there I felt an indescribable, black hole of sadness. Tears instantly flooded my eyes, covered my face and I began to sob uncontrollably. I was surprised by this episode and by the depth of my pain. For two and half years I have been handling my son’s death with strength, dignity, compassion and very little drama. I have kept it together presenting keynote speeches while sharing Jaidon’s story with countless people…
This morning I attended my third yoga class ever. At my first class I tired to force myself to do everything just like the instructor performed it. By the second class I realized it was best to only do what I was comfortable with, but I felt ashamed of my limitations. Today, I was at peace with what I was able to do, accepting my current abilities and focusing on the deeper aspects such as my breathing. Not fighting against my physical limitations was an indication of my ever evolving personal growth. I have been practicing being “open and receptive to all good things”, and I felt peaceful with my journey today.
Perhaps that’s why it was easy for grief to find me.
…While standing in the kitchen, oatmeal carton in hand, the depth of the pain made me physically sick; but even in the midst of the discomfort I did not wish to make it vanish or to cover it up. Somehow, I felt ready to face it, to bare the reality, to ache, to moan… I believe I am prepared to receive the unpredictability of grief.
Below is a note I wrote during Jaidon’s final days and the choices I had to make on his behalf:
Most of my day is spent in the room with Jaidon and Joel, (who literally has not left his son’s side since arriving a week ago.) Of course Granny is present but she goes out daily, keeping busy with errands. It is her way of handling this event and coming to terms with it all. She has spent the past 2 years caring for Jaidon 24 hours a day. Noah keeps the other kids busy with activities, massages Jaidon’s crooked, little feet and is a voice of reason when Joel or I experience temporary, mini-breakdowns.
Jaidon’s demeanor has remained absolutely peaceful with a knowing smirk on his face, and more movement than we’ve seen in years. He moves slow and purposeful, lifting his legs, looking at them with interest, and gently placing them back down again.
Jaidon was diagnosed with Metachromatic Leukodystrophy & Mosaic Ringed Chromosome 22 when he was almost 2. He remains the ONLY documented case with this combo in medical history in the world. His life expectancy was 3 years old.
At certain ages he accomplished a variety of skills. He could walk and speak when he was younger. He could read quite a few words from cards I made for him to point to. He drove a battery operated mini jeep like a mad-man, played on a special little league team and loved to vacuum.
In his entire life time he never once demonstrated negativity, anger or fear. He never did anything other than love.
For the past few months Jaidon wanted to eat less and less. I noticed subtle changes in him and enlisted Hospice.
About 4 weeks ago he became congested. We thought it was a cold.
He ate less, closing his mouth and gritted his teeth. We kept feeding him and giving him lots of coconut water and we went to his doctor repeatedly.
About 2 weeks ago it was determined that food and fluid was being aspirated into his lungs. His congestion was so bad he could no longer get enough air.
I was given 2 terrible choices.
1. Feed him and watch him suffocate
2. Stop feeding him and watch him starve.
We chose to attempt a temporary nasal feeding tube. The nasal tube should have taken about 30 seconds to insert.
4 hours later I left the hospital with a very uncomfortable Jaidon and 5 disturbing x-rays seared in my mind.
Because Jaidon’s spine is now shaped like the letter “C” his organs have all been pushed into an intertwined ball. His stomach is located in his ribcage between his lungs and is turned at a 90 degree angle, making it impossible for the tube to enter. The doctor placed the tube and hoped the nutrition would somehow find its way into the opening of the stomach. We also set up appointments with 3 specialists to see if a stomach tube procedure could be performed. At our first appointment the specialist examined the X-rays and had to pass. He called the plan B specialist for us, who also thought his procedure would not work but was willing to see us and would then pass us on to the more invasive plan C specialist.
Meanwhile, Jaidon’s congestion was worsening.
We went back to our beloved pediatrician 2 days after the nasal feeder insert with deep concerns.
The doctor told us Jaidon had pneumonia. I knew what that meant. It was over. NO procedures could be performed. Granny and I left the office grief stricken. Joel got on a plane. We decided together to end the discomfort of the tube that was simply filling Jaidon’s lungs with more fluid.
I pulled the tube.
Jaidon was very relieved. He was immediately more comfortable. He was also drowning. I did not think Joel’s plane would get here in time for him to hold Jaidon before his death. Jaidon could not get air. He was gasping and looked like a fish out of water. His chest was gurgling so loud you could here it throughout the house.
Joel did make it. Jaidon’s chest cleared. Jaidon began doing amazing things we haven’t seen in years, or ever. He is thrilled to have everyone around him, loving him. He is loving us back.
Jaidon can never eat or drink again. This is an excruciating thing to witness but Jaidon does not seem to be affected at all.
Jaidon is only love.