I started this blog to hopefully inspire others through stories and uplifting revelations brought on from the life of our son.  I sometimes have tears in my eyes as I write, but I always read the final blog and it helps me center myself and focus on the good.  I hope that others read it and have the same feeling of hope at the end.  This one is an interesting one and maybe a little out there, but it was a story we wanted to share.  It is not only about how he inspired and motivated us in life, but also about our connection to him comforting us after his passing.

That day in July was by far the hardest day I have experienced in my life’s journey so far.  It is one that I won’t ever forget, but becomes less clear with each passing day.  Remembering the days full of laughter and adventure help fade that one day.  One day cannot be allowed to steal the joy from so many happy days.  This is especially true because even days after that day have been full of joy and beauty due to our connection with a special, strong spirit.  Our son was named after the beautiful fire bird.  At the time, we did not know how true to his name he would be.  He recognized the Phoenix symbol as a way to identify himself.  Like the fiery bird that symbolizes hope, strength, and rebirth, he gave us hope that we can defy odds, the strength to do so, and the opportunity to witness an incredible individual shed the hardships they were born with to transform into something beautiful and vibrant.  Being a Phoenix was something that he fully embraced.  He was proud of his symbol and the impact that he seemed to have on people.  When he smiled, they smiled.  When he laughed, they laughed.  We felt like every day with him was a gift.  We knew he had a serious condition, but honestly we just kind of forgot because doctors, hospitalizations, medications, and therapies just became the background noise to sledding down snow covered hills, racing through parks, bouncing over tree roots on hikes, splashing in the pool, bowling strikes on nearly every roll, and endless days of playing games.  He never lived schizencephaly.  He lived being Pheonix!

We were consumed by tears after that day in July.  Our beautiful bird had to be free of a body that was no longer strong enough to contain his incredible energy anymore.  We are not the first parents to have their child pass before them.  All the logic in the world did not seem to console us as we ached to have him in our arms again.  We knew all the things the doctors told us.  We knew all the reasons his body was failing.  We knew no matter how many “what ifs” we contemplated as we second guessed every minute of that prior day, the outcome was going to be the same.  None of those known facts make a bit of difference when all you want is your child there for your eyes to see.  The Universe has a miraculous way to keep us connected even when our physical form is gone; ways to console us and give us reassurances.

I felt like grief was going to swallow me up from worry.  I worried that he was scared, confused, or alone.  That night in a dream a bus arrived at our house (Pheonix had a strange obsession with buses) and when the door opened, he walked down the stairs.  His legs were shaky and unsure so I ran and threw my arms up to help him.  I told him to wait and I would get his wheelchair.  He put his arm on mine and smiled.  He told me he didn’t need it anymore.  He walked into the house where some sort of family get together was happening and he sat down at the table with the other kids.  I watched him closely to see if he needed me.  He looked back at me with that sweet smile of his and said mom it’s ok, I can do it myself now…I don’t need help.

We were unsure of the proper way to honor him and celebrate his life.  We tossed around many ideas, including planting a tree in his favorite park with a biodegradable urn base. I had a dream the 2nd night after where I was sitting on a bench, looking upon the garden in our yard with a little boy sitting next to me holding my hand and we were talking about Pheonix.  When I woke up, I knew that was how we needed to honor him and create a place we could go to be at peace.  Many of the people who love him brought rocks and decorations for his garden at his celebration.  Anytime we go on a hike or go on an adventure, we bring back something for the garden.  We sit on the bench, listen to the sounds around us, and think of our adventures.

Probably the most profound and comforting experience after he passed was three mornings after when we were sitting on the back porch.  We were both consumed by tears thinking about him and how we were going to live life without him.  There seemed to be no joy left in the world.  A tiny lightning bug flew up to where we were sitting.  My husband put his hand out and the bug landed on his open hand.  It crawled around on his palm and then up on his arm for several minutes.  We remarked how unusual it was and laughed a little.  The tiny lightning bug flew off of my husband’s arm and started to hover right in front of my face.  He jokingly said it was going to give me a kiss.  It then landed on my cheek and I burst out laughing as it crawled around through the tears.  It flew out in front of us and then flew away.  We both looked up at the sunshine laughing and smiling.  We knew then that he was ok, and that we were never going to have to live without the joy he brings to us.  It is the sunshine on our skin that makes us smile, it is the bright red sunsets that illuminate the sky that makes us think of him, it is the laughter of family, it is the adventures we go on, it is the memories of our life together in every picture.

We are thankful for the tiny lightning bug, the hawk randomly sitting in our suburban front yard , the onslaught of cardinals, blue jays, and woodpeckers that are suddenly drawn to the garden, the butterfly that visits the same spot daily, and the dragonfly that enjoys being near the raspberries.  The sunrises have never been more uplifting and the sunsets have never been more brilliant.  We are thankful for all of these things because they remind us of his him and make us smile.  He shared his positive energy with us daily and continues to do so because of his presence in our hearts.  We carry it every day and though he is gone from our touch, he will never be gone from our sight because we see him in everything that is beautiful and unique in this life.