I knew it would come. And when I felt it coming I was proactive. My breakdown, after Emmaus being so sick, after the chaos of the home repairs and move. I knew it would creep in. So here I am faithfully attending counseling. Again. Counseling- you know, the magical place you go to spent hundreds of dollars to iron out the wrinkles that reside in the depths of your being. Every week I feel like skipping. Every week I show up. And after the fifty minutes of hard work I leave more aware, more raw, leaning into this vast expanse of grief that resides in my life.
I feel guilty for grieving. Somewhere I have the belief that because God spared Emmaus' life I should only be thankful. And I am indeed thankful. But also there is the ever present grief that is like a veil over my life. The internal struggle in the fact that she SHOULD NOT have the battles she does. That the brokenness of Tuberous Sclerosis isn't fair. It is not right. And in a whole perfect world- it just wouldn't be. This spring I went from "knowing" that it was likely I would out live Emmaus (someday). To the very real reality of- "she literally she could get sick enough that it could happen any time". Bam. That is a lot to deal with.
Anyway- today during counseling my counselor was weighing in that he felt a tension in holding this grief with me. His natural bend was to suggest we should find a way to figure it out, but that in all reality this just isn't a grief you deal with, and move on from.
When I was 21 and broke up with my ex boyfriend who I was SO SURE I would marry. Who I cared about more than even myself at the time- it wrecked me. HARD. So I went to counseling to try to pull myself back together. And I grieved, healed, and moved on. I have been expecting to do that with this grief. But the truth is, when you are grieving your child's life long ailment, her struggles, how it has changed and impacted your life, and the hardness that is brings- it isn't a "deal with it kind of grief". My counselor called the grief I am dealing with "Wild" and something just clicked.
My grief is wild. Just like the love I have for Emmaus is wild.
If you know me you know I love clean, but whimsical landscapes. I would always choose for my yard to be manicured, but with some purposefully whimsical landscaping. Lanterns hanging from the trees, a stone path to walk along. Neat. Tidy. But room for a little contained wild.
But the grief of having a child with a chronic disease. The grief of special education, and of silence from her sweet face. The grief in every seizure, sedation, surgery, med change. The grief in the very real prospect of losing her. That isn't a whimsical landscape. In fact it is a FREAKING JUNGLE.
I keep trying to prune the jungle. And then I get so discouraged and annoyed that all my pruning isn't doing much. And I even wonder if my inability to prune the jungle is because I am weak. But LET'S BE HONEST trying to prune the jungle is kinda impossible. It is never going to be an organized, whimsical landscape.
So today I start trying to live in the jungle. (I hope there aren't many bugs. And if there are I am gonna need some DEET. Forget your essential oils. I need DEET. I hate bug bites. Bugs. BAH- I digress)
Anyway- these are today's thoughts on grief. It is wild. And I need to learn to live and thrive within my grieving. Because it isn't going anywhere. It isn't a grief you fix.
Saturday, August 20, 2016
Today Shiloh sweetly helped Emmaus get her shoes on. Without being asked. In fact- I don't think I have ever asked shiloh to help Emmaus get her shoes on- so it was likely all her idea. She put them on her all by herself with Emmaus trying to kick her in the face the whole time. Then checked with me to make sure "are dey on da white feet mama? Or are dey bakwards?" Shiloh also has started praising Emmaus for things. Which might just be the sweetest things I have ever encountered. She also tried to encourage Emmaus to eat her yogurt last night by doing the "airplane" into her mouth. I want to be more like Shiloh. *Maybe not the whiney, typical three year old melt down parts. But I want to be able to see what people need, and help meet their needs. She is just the best sister!
And then there is this. I mean o.emmmmm.geeee. She now thinks she is a big kid. And it is rude. And cute. She also has such a sweet relationship with Shiloh. They will be besties I have no doubt.
I am so thankful to be the mom of these sweet girls. And I am thankful they have each other.
...A cord of three is not easily broken.