August 16th. A normal end-of-the-summer day for pretty much everyone on the planet. Spending the day in a pool, at a park, or maybe indoors because of the heat. Soaking up every last minute summer has to offer.
Not me. August 16th is the worst day of the year- the worst of my life. It is the day I was forced to say goodbye to my sweet Hayden. The day his neurologist and cardiologists sat in a conference room and told Rob and I that Hayden’s brain had no activity. That it didn’t matter how long we waited, nothing would change that. He would be alive on those machines as long as we wanted him to be- but that he would have no form of life and that we could take as much time as we needed- but that his brain was no longer active and he was essentially brain dead. August 16th is the day the world I knew and had faith in came crashing down- so hard I couldn’t breathe for months. August 16th is the day I kissed his swollen head and fingers and toes- and every part of his body I could get to- for the last time. August 16th is dooms day in my world. And with each passing year (this past marked three) it doesn’t get easier. It hangs over my head for weeks leading up- torturing me. Haunting me.
August 16th. The day my sweet Hayden died. In our heart community we call this day their ‘angelversary’. I don’t know who made that up- but I like it. It’s not even a real word. But it makes sense to all of us- and we embrace the title as how else do you describe this day in such little words?
The first angelversary for Hayden I was pregnant- maybe 12 weeks. Rob and Jackson went to a water park for the day so I could basically cry my way through it without anyone watching me. I was hormonal- but I don’t think that would have mattered. Tears were gushing out of my eyes and streaming down my face for days before. Recollecting all the events leading up to what would be the reasons for his death. What I could have done to stop it. Pure torture in the highest form. Had we not went through with the discharge. Had someone else placed the g-tube. Had we went to a different hospital. Had we waited longer to ‘pull the plug’ for lack of better words. The list goes on. That morning I sat on my couch with a cup of hot chocolate in the middle of August and watched Hayden videos. I felt my body start to go into panic- they are in chronological order- so, the closer we got to August 16th, the more anxious I became. And right about at the point where I was sobbing so hard I couldn’t breath, the little bean in my belly started to do somersaults. I was only 12 weeks pregnant- but this was my third- so I knew what that amazing feeling was. I paused the slideshow and just sat there thinking this can’t be real- its too soon- and the more I tried to ignore it, the stronger it got. So, I looked up to the heavens and through my tears said, ‘thank you’. I knew from that moment on this rainbow and Hayden were deeply connected.
As the day went on and as each passing moment leading up to the time of death (2:40pm) I felt by body just want to give out. I found myself pleading with God to let me go back in time and change it. Change the course that lead to where we are now. I kept hearing Rob and I’s conversation over and over again- the one when I was pregnant with Hayden when we were given 5 hours to decide what we wanted to do- terminate or go through with the birth and just hope for the best - his fear that we would have this baby and he would die- and me almost laughing like how could that ever happen- why would you ever even think that??
Rob and Jackson came home from the water park full of joy so it was hard not to get swooped up in that- for a moment. Jackson cried with me- probably more sympathy tears than anything else- and we watched some videos and looked at pictures together. We released heart balloons at the cemetery and just laid low together as a family. It was an intimate day with the three of us surviving it the best I could. The past two years have been much of the same- just our family taking some time to remember him and honor him with some videos, photos and a balloon release.
Our foundation in Hayden’s memory and honor compiles care packages called ‘Smile Sacs’ that are sent to a few pediatric cardiac floors for the heart patients. We fill them with toddler and kid activities with Hayden in mind. I picture him digging his little hands into containers of playdoh, marker stains on his arms, and popping bubbles in the sun. Knowing these care packages are bringing smiles to heart kiddos on his angelversary brings joy on what is our saddest day of the year. It is our way to have Hayden’s memory live on.
I wish I had more hopeful words for our grieving community for ways to honor your angels on this day. This is different than their birthday- it is a day of grieving. The best advice I can offer is to allow your self that time to grieve, as painful and hard as it may be. Allow yourself time to do what feels right. If going to work is what is best for you- then that’s where you should be. If sitting in a ball on your couch and sobbing your eyes out feels right, do it. Embrace your needs this day and do whatever it takes to survive it.
Some other ways grieving parents have honored this day is:
- ‘Feed the Fire’- take meals to local fire departments
- Family day of fun together
- Purchase gift for resting place
- Toy drives
- Random acts of Kindess in their honor
- Release balloons or butterflies
- Blow bubbles
- Care packages for local hospitals