Another little boy died from DIPG.. well so many have.. but one in particular. He looks eerily like my boys. And his mom and I have gotten very close. His name is Wyatt Norell. He was just a baby really.
I have been awash in so many emotions in the tail end of his struggle and since he joined my Jennifer. So surreal to be on the complete other side of equation. .. With my phone in my hand.. volume turned up and heart constantly in my throat waiting for the phone to ring.
The first time I talked to her on the 12th.. they both now will eternally share that number.. I hung up and collapsed in my kitchen. A sobbing mess. My boys came into me. And just hugged me. Looking at me with such love and concern. “What is it mommy?”
So I told them. A little boy is preparing to move to heaven like sissy. And I am just so sad for his mommy. And for his sister. .. He has a sister Jonathan’s age.
“oh. I understand mommy thats a good reason to cry”
“I know. But remember we are doing something about it. One day son.. we can make it so this doesn’t have to keep happening. That’s why we do things for Unravel right?”
I think I asked so that he could reassure both of us.
“yes mommy yes. Im going to go play now.. c’mon bubbas.”
“yea lets play family. ”
I had a Unravel meeting to go to. For the first time ever though I didn’t go.. Because I just couldn’t do it.
I wanted to do right by Leanna, his mommy. I wanted to help her. I wanted to say and do the right thing. But I am lost as to what that is. Because this is so different than other parents. Because I already care so deeply for her, for her husband and both of her children. I suffer for them. Obviusly it kicks up Jennifer stuff.. but this is different because I also just cry tears for them.
So I did my best to honor him. .. by enjoying my living children. By finding a way to make them laugh.. and squeal in delight. I watered the grass by hand and let them get soaked. Their giggles reverberated into me.. shook me a little. And allowed me time to be with them and cry silent tears.. talk to my daughter. Ask her to welcome him home. Ask her to take care of him like she always did her little brothers.
I shouldn’t have to ask a 6 year old to take care of a 3 year old in heaven.
I made them put on a little bit of clothing and we watered the front lawn too. Then came in for bath and bedtime.
I tucked them in and sat and waiting.. When my phone rang again… it was different than I imagined. I have never heard that sound .. I have made it but not heard it. .. not what you think.. it was..
Euphoria. Contentment. Ease.
In the most *un* all those things situation imaginable. It shook me. It tore me down harder than I was prepared for. . and I thought I was pretty prepared. Because I miss that. The smell of her still on me. . my hand still able to remember the way her heart felt under my hand. And the last days of being complete.
I think this horrific a loss cannot be consumed all at once.. or even right away.
Pieces absorb in as time passes. I think right now I am just starting on the final piece of it.. The final bit of the reality of my daughter being dead is now becoming fully revealed. .. or maybe not.. maybe a year from now I will think -now I finally have it all- I don’t know.
But I know the euphoria after. The sleep deprivation hitting.. the lack of food and water tolls hitting and our minds ability to insulate us.. from the unimaginable depths of the dark, the swirling waters of child loss.
As we hung up the phone Tony walked in the door from a day of golf.. and I grabbed for him. Violently. Clawing at his back and yelling my cries into his shirt. And then I just looked at him. We communicated so much with so little said.
He vividly remembered that euphoria too. And misses it. The peace it brought with it.
We sat outside.. just together. Remembering then.. longing.. wanting.. wishing..
And I texted Leanna .. worried I hadn’t said or done the right thing. Wanting her to know how desperately I cared.
So damn surreal being in these shoes now. Watching and wanting to help .. unsure exactly how. Because though some things are exactly the same.. much is so very different.
I fought the urge to jump in the car and drive to her. .. because that urge was more about me than her needs. I know she was well taken care of right then.. But one day I will.. one day I will jump in the car and drive to her. I have to trust Jennifer will let me know the right time.
So now I will grieve.. apparently loudly and deeply. For Jennifer always.. and again and again.. And for Wyatt. . because there has to be a first and I really hoped … even believed a little .. we could make it be him.
I’m sorry Tony. Jonathan. Nicholas. Charlotte. Our dandelion wish. I’m sorry Leanna, Bryan and Lilly. I’m sorry I can’t save any of you from this. ..
i’m sorry jennifer.
i’m sorry wyatt.
i’m just really sorry.
…until there is a cure..