Today as I was leaving work, I started to reflect on my new normal. The routine is settling in and I am slowly learning how to balance missing Owen and living life. Work feels as if I never left and it is glaringly obvious that while our lives stood still at CHLA everyone else moved on. We spent every day with Owen, as members of the heart family club learning the choreography to the “heart dance”. While the world outside was spinning, we sat by his side and learned to be content in the two steps forward one step back. We saw beauty and found hope in each move. Every step forward was a huge victory. Every step back we held his hand and savored every second.
We now find ourselves in a new club trying to learn all new moves. We do not wish this club on anyone and our hearts break with every new added member. The “grief dance” is not a series of two steps forward and two steps back. Grief is so far from linear. It rarely comes in waves, never consistent, but rather crashes on you like a tidal wave and wipes you out. And sometimes it silently sneaks up on you when you least expect it and without any warning. The grief dance looks less like the “heart dance” cha-cha and more like a drunken man trying to do the YMCA while having to pee!
My heart has been heavy with many questions. Much like the grief dance, these questions flood my mind without warning. Did I tell him “I love you” enough? Did he know that we were trying to save his life? Does he know all we ever did was try to protect him? Does he know that we would have traded places with him in a heartbeat if we could? Does he know that forever would not have been long enough and does he know that we will see him again? Does he know how proud I am of him? And many more. I know that these questions will never be answered but I try to find peace in believing that the answer to all of these questions is “yes”.
But, there are deeper questions that can’t be silenced that easily. They are not past tense questions but rather the forward-thinking questions; the dreaming questions. What would I do if we had more time? What things would I have told him or taught him? What would he look like? What would he grow up to become?
Last night, I sat dreaming of his last days and how they would have looked if we would have known that he was dying. I pictured him dressed up in an outfit for each holiday. Jaxon was there and we took the best photo ops. We captured a memory with every breath. We celebrated each and everyone and danced with no abandon. He was smiling, we were all laughing, and we were living like the moments would never end. I was left happy with a picture and a memory for every holiday, not just an outfit hanging in his closet waiting for a baby and a celebration that will never come. As the highs and lows came and I got lost in this “what would I” half dream-half nightmare land a thought came to me… If we would have known he was dying could we have lived with as much hope and joy as we did every day? Could we have lived as optimistic and ended each day feeling as victorious as we did? I don’t think that I could answer those questions with a “yes”.
They say live like you are dying and there’s no doubt that we DID with Owen… We never believed that he would die at 16 weeks. We lived as if he would be a grown man with stories to tell. We lived each day and treasured every breath. We lived celebrating each moment we just didn’t dress him in all the goofy outfits. Which I am sure he is thankful for! There are no regrets with how we lived with Owen just heartache that we don’t have more time.
Tomorrow is 7 weeks since Owen left this earth and I miss him more with each passing day.