Do you ever just get sick of yourself.. I mean, it’s been tragedy after tragedy it seems and about the 600th time someone asks “how are things going?” you just wanna puke because you are sick of your own dang self.
“It’s not ok”,
“it’s not going great”,
“the kids are not good”,
” I’m not fine, how are you?”
… it is a veritable tornado in your world and you are sick to death of thinking about it or talking about it or glossing it over or faking it. I haven’t written in months for that very reason. There hasn’t been anything that I want to write about. No matter how many times little Anam asks me to write a new blog post!! ( I love you Anam, you light up my life!! )
I have an ongoing fantasy wherein my answer to “how’s it going?” is a resounding “AWESOME!” and I mean it!
Down syndrome doesn’t give you a whole heck of a lot of ‘awesome and I mean it’… I mean, it does, cuz Thaniel is six kinds of awesome… but we are forever in a holding pattern of wait and see. Awesome this week is wretched next week… as I’ve already written , I’m grateful for the way Thaney holds me in the here and now and makes me grateful for the little victories. But I am heartsick for an extended period of peace. Real peace.
My mother has been sick for months. She contracted shingles and just happened to be that 1 in 3 that deals with the extended nerve pain afterward. It’s been months and months of specialists, exams, tests and so much pain and so Thaniels piano buddy and Gabe and Bens craft pal has been laid low and there is little end in sight. Meanwhile her caregiver and soul mate – my father – just recently came down with shingles as well and so we are missing our right hand man. Papa is the be all and end all. The glue that holds our worlds together… and he is down for the count. I despair for my mother because I need her as the greatest example of perfect motherhood I have, and my dad… my dad is a plum line. I don’t know what is up or down without him. And so at the moment it is as if I am sailing on the ocean without so much as the stars to guide me (That’s a little over dramatic, but it writes good) And on a side note, I’m sick to death of being on the prayer list… I know it’s ridiculous, but I feel like it’s a sign of weakness to be on repeat on the staff prayer request list. If it were YOU saying that to me, I’d completely thrash you for how crazy that is.. but there it is. My family is ALWAYS on the prayer needs list and I feel like a class “A” loser for it.
Thaniel is walking a tightrope of symptoms and I am trying not to be overly worried about a growing trend in his breathing and bowels. He has done so so well in the last few months, that I am reluctant to envision another round of trouble.
And me. Sigh. My purse looks like a pharma plus store. I mark my days by how long I have gone without morphine. I see a Metabolic Oncologist, a Hepatologist, an Infectious Disease specialist, a Hematologist and an Immunologist. And now there is a blood clot. My right calf. It’s painful and swollen and hot and stupid.
I’ve had a blood clot before.. that moved like a wall toward my lungs and exploded into my left lung like an army battalion . ( see PE) The result of which was intense pain, an inability to breathe for quite some time, a lung scan that looked like I’d been peppered with shrapnel and months and months of blood thinners and one doctor who called me “lucky” because ” blood clots don’t come and go, blood clots come and YOU go”. And I’m just sick of myself and everything that comes with complaint central. I want a holiday from symptoms and syndromes and such. I long for the days of sunshine health, of weight rooms and gyms and long afternoon runs and protein shakes. I miss talking about how much my three lift is and not how much narcotics I’m taking.
I’ve heard it said that cancer robs you of your personal story. That you get melded into a joint narrative. And in some senses that’s a great thing. You become a fleck in a massive sea of understanding. I’m just sick to death of this story. The end of it is always the same and I am just bored. Bored of the plot line and the predictability with which this disease progresses. We get it cancer. You come, you take, you break, you steal. We are over you already.
I’m ready to write about the joys and triumphs, the milestones and masterpieces! and so if you will indulge me for the next few weeks, that is exactly what I will be doing. No more focus on what isn’t and what shouldn’t be. Instead I will be trumpeting the glorious joys and wonders that God is making apparent all around me. Because I know He is, I just have to be on the lookout for them. If it seems a little contrived, I apologize. If it feels a little fakey and put on, too bad, suck shoes… I’ve earned some make believe ok, little victories are still victories… no one needs to scale mountains over here, we’re just looking for beds to get made and for the dog to remember that the garbage isn’t a food source.
To start with, I should mention that Thaniel is beginning to put real words into his everyday speech.”Baby”, and “shoes”, “eat” and “No!” Awesome sauce words. When he’s dancing to Megan Trainor he’s singing NO NO NO! and when I get him ready in the morning he signs “shoes” and then says the word before I slip them on his feet. This is no small feat, this is months and months of repetition and playing silly games until the relationship between words and their meaning began to sink in for our little man. Watching him wake up to language is akin to watching Mozart discover notes, or Michelangelo awake to colour. I feel divinely blessed to witness the splendor of discovery in Thaniel. No matter how many children I have, it will always be an immense gift.
Hold on inter weebs… it’s about to get a whole lot ‘fierce-joyable’ in here!!