I woke up yesterday morning feeling complete. For a moment I sat in that in between time where I didn’t know what was reality and what was a dream. I didn’t feel any rush to wake up because I was in pure bliss, holding my sweet baby boy again. In my dream I was sitting in that all too familiar Hospital room at primary children’s, holding my angel Hayesey, but in my dream he wasn’t an angel, he was very much here and fighting still.
I first found Sarah a few months after losing my sweet Hayes. It was through her social media, @AliceAndAfter, that I was able to hear about her story and her beautiful Alice. I immediately reached out to her, my heart shattered for her and I felt immense love for this person I had never physically met. We shared a similar experience that drew me to her. Losing a child is the worst thing you can have in common with someone, but it is also a beautiful connection. A thread that connects people that understand each other in a way that is deeper than other relationships. Although we lost our babies so very differently, I still feel that invisible thread with her, that pull that says, “I get it, my friend.” Meeting Sarah has given me hope and she has helped remind me that we can still have happiness through the pain and darkness. She is a shining example of finding love and light through loss. Here is her advice for still having a reason to hope.
There is no darkness more potent than that which surrounds you after losing a child. Completely blinded, it’s nearly impossible to navigate the unfamiliar terrain around you. Unavoidably, you will stumble, and you will fall, but you don’t have to be lost forever in the blackness of grief. So how can we adjust? How can we see again and move forward to have productive, purposeful lives? How can we find joy in our newly obscure surroundings? It has been proposed by many theologians, scientists and philosophers that darkness is simply the absence of light. That darkness is not an opposing force to light, but rather, the absence thereof and thus simply a void that immediately surrenders to its counterpart.
This may be true in science, but in grief, darkness is all too real. It will fight back. It relentlessly fixates on your soul, and must be deliberately and consistently evicted. To me it holds true that the only thing equipped to dispel that entrenched dimness in our souls, is light.
So how can we adjust? How can we see again and move forward to have productive, purposeful lives? How can we find joy in our newly obscure surroundings?
1.) Small bits of light can illuminate large spaces- I remember the day my daughter Alice passed away, I was completely shattered. Her death was abrupt, and unexpected. There was no warning, and there was no goodbye. She was taken from me and took with her more of my heart than I could operate without. I couldn’t see the path before me. I was completely blinded by my grief. I couldn’t imagine it. How I could endure this impossible trial before me, while also being engulfed by darkness? The answer is, I couldn’t.
I wasn’t prepared to invite large amounts of light in, but I found bits and pieces I could appreciate. I would allow in just enough to light my path. I thought about how my husband and I spent the last few days of her life home. I marveled at how my husband was on a break from school, allowing him to appreciate her last few weeks with us. I wept in the arms of my family members and noticed when they wept in return. I felt like I was walking along the edge of a cliff with only my cell phone light to guide me, but at the time it was enough to help me not fall.
3.) Allow those who know the path to guide and inspire you- The moment I realized Alice had passed away, I knew I needed to talk to my sister. I needed her wisdom and her comfort. She raced down to my home in the severe snowstorm on that January morning and held me in her arms. I took great comfort in having her near. We had always been close, but our bond had been renewed and solidified that morning because now we had both lost our oldest children, our first daughters. She also gave me hope because although she still carried her grief with her, she also had a functional life which included genuine happiness. Her rainbow baby Norah brought her immense joy that I knew I would be able to find again someday, somehow. Her circumstances were vastly different than mine, but she knew how to navigate the road on which I had never walked. She truly guided me through intense terrain that I wouldn’t have been able to handle on my own.
I also immediately joined a Facebook group called Utah SIDS Parents. I had never met these women, but they ran to my aid. They took me by the hand, and led me down the path. At times, I think they carried me. I didn’t know these women, but I could tell they were anxious and willing to help. I was afraid to open up to them. They were strangers. But I took a risk and I shared with them my darkest moments. They sympathized in a way no one else could have. It allowed me to reframe my thinking. Losing Alice thrust me into a bleak position. Even though I couldn’t see others beside me on the dark path, I was not there alone. There were other mothers finding their way alongside me.
3.) Allow the darkness its time- Just as the Earth has a night and a day, I believe that our souls also benefit from the separation, and the allotted time for each. There are moments I choose to fight the darkness in my mind with light, but there are times when I allow it to be heard. I often find if I literally schedule a time to feel the depths of my sorrow, they become less haunting in unwanted moments because I have allowed them a release. I admit, there are still times when the darkness overcomes me no matter how hard I try to suppress it. This isn’t a failure. The sun does not always shine. Allow yourself to feel what you need to, when you need to, and when it passes, try to invite the happiness.
With that said, allow yourself time to feel joy. The Earth’s brightness at noon does not discredit the darkness of the night. Your happiness will not void your grief. Embrace joy when it comes even if it is in strange or unexpected moments. Your child would want you to experience joy, and all children relish in joy. They would want your life to be filled with light and laughter and not be governed by sorrow and hardship.
4.) Take it slow- Any living creature immersed in an environment void of light becomes averse to the brightness. If you expose them to too much, too quickly, they will be blinded or they will flee. I’ve experienced this so many times in the summer when emerging from my dark basement to the outdoors. The dramatic juxtaposition of luminosity doesn’t enhance my ability to see, it inhibits it. Don’t try to force yourself to enjoy the sunniest, brightest of days, when you are just emerging from the darkest abyss. Just as your eyes need time to adjust, so does your psyche.
Losing a child is an indescribable, horrific experience. I wish it didn’t happen to anyone, but since it does, let’s help each other along the way. The road is dark, but the only way is through so invite small pieces of light to illuminate your way, allow those who know the path to guide and inspire you. Always allow yourself to time for the light and the darkness. Remember this is not a race. The depth of your sorrow will be the depth of your love, and therefore healing will take time. Be patient enough to let yourself take it slow. You will make it through, but only if you bring along with you, a light.
Lately, after the babies go to bed, I am more than likely alone. Bo and Steve are usually at football and Mia and Wes are out playing in the neighborhood, soaking in the last bit of joy that summer has to offer their childhood. My favorite thing to do lately is to sit in my backyard. I watch the sun sink lower in the sky, feel the warmth of the air, listen to the squirrels chirp in the trees and I just sit. I could do it for hours. From the outside, it looks like a whole lot of nothing, but this is where I go to soul search.
I have been open from day one and I will continue to be open. The reality of my new world of grief is that I shift from sadness to doing ok to anger to everything in between. The past few days I have been angry. I sometimes feel like life has moved on without us. We are in this bubble of our home and I have zero intentions of leaving. I can’t bear the thought of going out into the outside world, where stresses are things I would give anything for. I lost my baby…8 months today. I ache for him.
Sometimes I feel like this can’t be real. This was not how I imagined my life would be. I was going to raise my six kids and stress about naptimes, carpools and school lunches. Was he ever actually here? Or was he the best dream of all time and now I have to live each day wishing for sleep hoping for that dream to return. He was here right?
I guess it gets strange in my mind because the world moves on and I have to learn how. How? I have found ways to distract myself, to slowly close up my broken heart. The foundation has become a bandaid that I am so incredibly grateful for, but I know deep down, it is just a bandaid. I am still broken inside and most likely, I always will be. I have to learn to live broken, I guess.
I have this feeling that Hayes is busy. He hardly misses me because he is discovering everything he missed. It has been 8 months but to him, I hope it feels like 8 seconds. I hope he feels no sadness for me because all I want is for him to experience joy…pure unpained, cancer-free, toddler joy. Ugh!! I miss him so much.
I have to keep reminding myself that this pain, this is life. Life is a mash up of earth shattering lows and the highest of highs. I am so lucky to have known those highs…when all 8 of us slept under the same roof. When we drove to California and Disneyland. When we would get Hayes out of bed at 10pm to play with us in our room. I have known a perfect life. I will forever have that to be grateful for. It is ok to be mad sometimes…that is just how I feel today. Sad and mad and heartbroken and grateful. I am a sad but I am a lucky one.