I found myself in a hard place yesterday when I was unexpectedly confronted by a new loss. And I’m just experiencing the process of grief and the complexity of emotion and my body’s response to new micro trauma. I’m processing complex thoughts about the bit of new news about Daniel’s health that may have been knit together in the womb… and my response to my Creator about that. And I’m processing the thoughts and emotions that come as I consider the brokenness that was added and compounded by the utter failure of the adults in Daniel’s life to provide the most basic of care to him.
Sometimes the grief lays heavy, like a smothering, painful blanket. Sometimes it is light, like a dancing balloon in my hand. Sometimes it’s laced with fears or anxiety, but not always. (What will happen? Will he be able to ___? Will this cause him more suffering? How will he cope with the treatment?) Sometimes it’s red hot like anger and judgement, but not always. (This should not have happened to him. The harshness and absence of touch and love and speech he experienced were evil. I hate that other children are still experiencing this.) Sometimes its the seed of love and nurturing and pride in who he is and how I’m caring for him or the gratitude in the ones who did everything they could, despite everything that was against them.
I don’t rush through all this when it happens. And I’m writing this to encourage myself and anybody reading… to not rush. We have rights here, in this land of grief. I own this plot. I have multiple plots. Plots where I long to hear Jordan’s voice. Plots where I desperately desire to take Daniel’s fear and pain and isolation away. Plots even where I just miss my horse, the everyday companion of my youth. Plots where I miss my Grandpas. This is my place and I am allowed to visit when I need to.
My new wedding band says, “Poured Out – Stand Firm – Made Whole”
My life…. is poured out. I live it completely, recognizing I get to do this just once… pouring it out each day. My goal is to pour it out as love.
My belief… despite everything that clamors to turn me against my Creator and curse His name… I am standing firm. I stand firm on the faith that He will finish His good work and that His plan is good. I have staked everything on this.
And my hope… my hope is for that day when all the brokenness is mended. When the Lord makes us whole. When the darkness is no more and the losses are turned to beauty.
So yeah. It’s medical season at our house. The girls haven’t had checkups in a long time, so I have been working them into the schedule with the pediatrician. Jordan has had a little to do. And the dentist. But mostly, I’m catching Daniel up. I fired a hospital, because their scheduling rules are condescending and threatening and I’d had enough… so that meant starting from scratch for his new specialists at the neighboring hospital. Oh, and I’m trying to get me healthy too, so orthopedist and doctor stuff for me too.
I have a login for MyNemours for Daniel’s team on the east coast.
and for MyHealth for all of the kids pediatric team
and for MyChartWeb for the specialists at the hospital that I probably don’t get to see any more
and for MyChart.tvc for everybody who is part of this other clinic network
and of course MyChartor for my doctor.
I am gonna see if I can get some of those merged, but each one has 2-10 providers, so it’s more efficient than it looks… we just have that many people we have to work with. Get to work with.
Daniel has Nephrology (kidneys), Endocrinology (including growth issues and brittle bones), Cardiology (praying his heart still looks good), and Physical Therapy evaluation coming up. And I am scheduling for his next casting appointments for February back east. We just finished an Occupational Therapy evaluation, a Speech Therapy evaluation and an opthamologist appointment.
About his eyes. Soooooo – when we’re born, our eyes develop as we stare into our mother’s face, look around the room and explore the world. Daniel only got 10 days with his Bulgarian Mama. And the majority of the rest of his first 4 1/2 years were in a small room, mostly confined to a crib. He was also born with some low muscle tone issues. And… his eyes are drifting apart. He’s using just one eye to focus on things anywhere much more than an arm’s length away. He’s alternating eyes, so they’re both still functioning, but they aren’t working together properly. We’re going to try patching his eye, alternating from one to the other, to see if they can grow stronger. And if that doesn’t work, he may need surgery. And I’m grieving that this little boy has to have something stuck over his eye every day for three months. And then he has to go to the doctor again. One I thought we weren’t going to have to see any more until he’s reading. And I hate surgeries. So. I’m sad.
Okay. Done meandering through these thoughts for now. I’m tired. Time to let my brain switch tracks. I’ve got a grocery list to make and a fiction book to open.
In his happy place.