March 25, 2017 by kruckr
One month ago, I was lying next to him in a hospital bed, holding his hand, listening to the sound of the ventilator. One month ago, a thought began to seep in; the though that this might be the hospital trip he doesn’t come home from.
This is the story of grief. It’s an ugly monster, which is bound to show it’s face, in some form, to everyone. When you learn that you will never again see your loved one laugh, smile, cry, etc. the regrets start to settle in. The “what ifs” and “whys” try to take over all your thoughts. Somedays I am better about battling these toxic talons of the grief monster, and somedays I let the thoughts in. “What if we had just stayed at the hospital the day before?” “What if I hadn’t gone to bed so early?” “Why didn’t I take more pictures and videos of him more recently?” “Why didn’t I play with him more instead of doing …” These thoughts are a slippery slope into despair. You can’t unthink them, but you have to try to fight against them. Once they breed they take over and it’s easy to fall into a pit you can’t or don’t want to dig yourself out of.
After arriving home from the hospital I felt empty and I was immediately confronted with decisions to make. The first came when I was tidying the kitchen and I saw the sippy cups on the drying rack. I immediately began packing them up and putting them in his closet. Later, I had to cancel his diapers from the Amazon subscription. We went to his school to gather his things, Community Peds Care came to get his equipment for other kids to use. With each of these instances, I found myself getting very angry and of course very sad. Letting go of his body was the most painful experience I’ve ever had to endure. Letting go of his things is like slightly reliving that moment over and over again. So, the rest of his belongings will stay right where they are until I find the strength to make those decisions.
Instead, my mind turned to decisions about the memorial service. We held service on March 4 at Trinity. It was a beautiful tribute to his beautiful life. So many people came from near and far to help us celebrate him. After that was over, and families and friends went back to their lives and things have been much more quiet on the home front. I have been writing in a journal, working on a memory garden and have been working on planning an inclusive playground build in his memory. These are good, productive things and positive ways to channel my grief, but I would be lying if I said they made me feel better. A solution has to match the problem and my problem is that I miss my little boy so bad it hurts. There is no solution for that.
Most days I think the only thing that gets me out of bed is Ella. She’s such a bright, happy baby. It’s nearly impossible to be sad when you’re around her. I know she won’t really get to know her big brother, but she should know a mother who shows the same devotion to her as she did him. As much as I would like to crawl in that dark hole, she deserves better. She deserves the best.
My therapist gave me lots of paperwork on symptoms of grief and coping strategies. She described grief, not in stages, but in a cycle. The Loss is the beginning, but there is no end. You suffer, settle and then things get stirred up again. That cycle will repeat over and over again for the rest of my life. The hope is that the settling part of the cycle begins to last longer and longer.
Dan went back to work on the 13th, I will go back on the 28th. This is the last step towards beginning this new normal without my little boy. This new life will include all the things I do, minus what I did to take care of him. In place of those, there will be the garden and the playground. Somedays I wonder why I’m even bothering because as I already stated, I know these things aren’t going to make me feel better. But, they’re the only things I know how to do to “be” with him in some way. Humans traditionally try to avoid pain at all costs, but there will be days when I let the pain in. When I let myself feel it all to remind myself that he lived. I hurt because he lived.
I dont know how you feel.All I can do is say what I feel and empathize through my own losses.
Henry will never leave you his imprint is everlasting and you will continue to grow as a human with the gifts he left inside of your spirit. Let those parts grow into a garden of love for yourself and others. Never be ashamed or frustrated with your grievance it is the most painful growth but remember to see the beautiful flower it will become. Some of the most beautiful flowers have the longest thorns and stems. Allow your self to reach through the dark and into the sun and when you feel the comfort and warmth of its rays remember that feeling is the Embrace of God and the Kiss from Henry.
Every time I saw your posts I always looked up to what an amazing mommy you were aND still are to Henry. Henry was a hero because of the love you and your husband provideo to him.
I admire your strength and courage to continue posting. I can only imagine how different your life is now. Our children with 1p36 need so much time, equipment, energy that the hole they leave when they are gone is gaping. I wish you had more time with Henry. He was/is so obviously loved by his family. I am glad that Ella is there to hug, cuddle and gives you a reason to wake up in the morning. I am so sad she will never get to know her big brother better.
I know all too well the what ifs that run through my mind when something goes wrong. I find myself blaming myself for not being able to always keep Zoe safe. She has regressed and shown signs of brain damage after having prolonged seizures in the night. What if I had found her a sooner? What if I hadn’t found her? What if I had demanded she stay in hospital, etc. We are incredibly lucky to have Zoe in our life still and I’ve come to accept that it really does come down to luck or fate or whatever you want to call it. We try to protect our children but we can only do so much. You gave Henry your love and you took great care of him. What happened was beyond your control and that is scary to accept. Zoe wears a shirt that says, “My mom thinks she is in charge, that’s so cute” to remind me that no matter how many nights I stay up late checking on her, worrying, etc in the end it is not in my hands. The reality is, we can not keep our eye on our children 24hours a day. At some point, we need to sleep. I hope you are able to find some peace and the what ifs become quieter over time.
I keep you and your family in my thoughts and I thank you for sharing Henry’s story all along.
X. The Pity of It
On a Dead Child
By Richard Middleton (1882–1911)
MAN proposes, God in His time disposes,
And so I wander’d up to where you lay,
A little rose among the little roses,
And no more dead than they.
It seem’d your childish feet were tired of straying, 5
You did not greet me from your flower-strewn bed,
Yet still I knew that you were only playing—
Playing at being dead.
I might have thought that you were really sleeping,
So quiet lay your eyelids to the sky, 10
So still your hair, but surely you were peeping,
And so I did not cry.
God knows, and in His proper time disposes,
And so I smiled and gently called your name,
Added my rose to your sweet heap of roses, 15
And left you to your game.