Remember the Life in Hell comics by Matt Groenig? I loved them and had forgotten about them until I decided that my post for this morning was going to be titled "Life in Hell." I went online looking for some sort of ancient painting of Dante's Hell but then found Groenig. I spent a good amount of time going through the many hilarious drawings and then I finally decided on the one I've posted above.
Why?
The black shadowed rabbit is, of course, me. The little rabbit is the nurse who came yesterday to administer Sophie's fourth treatment of IvIg. The nurse arrived on time and was a very kind lady but I won't belabor why mistakes were made. Suffice it to say that veins were punctured five times and no needle found a home. The large, shadowed rabbit called a stop during the fifth poke and demanded that the treatment be tried again tomorrow. That means tomorrow and Saturday because they're given over two days. Five hour infusions on two days. Like I said, I don't feel like belaboring mistakes, especially because the nurse was a good woman.
The little rabbit is also the whole shitty THING, too. The constant seizures, the calls back and forth to The Neurologists, the not-knowing, the no one can help feeling, the constant vigilance, the seizures, the eyes of Sophie, staring at me, the sweaty palms, the eyes, the eyes, the eyes. The whole shitty thing. One needn't live in Haiti to experience hell (although some perspective is in order but allow me to throw perspective to the winds and play the violin instead). And I just have to post the following gorgeous illustration where you can see Sophie and I lost, in the woods.
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| an illustration for Dante's Inferno by William Blake |
Life in Hell is living with a child with a seizure disorder that is refractory to seemingly EVERYTHING.
I bet you're wondering how I'm going to figure out something to be thankful about today.
I'm thankful for your ability to keep going.
ReplyDeleteBest,
Bonne
With Bonne, I'm thankful for your resilience and humor, and especially for the love that is as much a part of you as your breath. Perhaps it's that love which makes this so frustrating and sad, and yet which makes it possible to keep going in the midst of hell.
ReplyDeleteAbout the futile search for a good vein: there is little I can think of that is more angering than watching someone FUMBLE AROUND with your child's medical needs. I could go off on a rant about this - trauma memories are triggering - but I won't.
I can see that you're thankful for artists and cartoonists today. I am, too, thanks to you showing me these two images.
On the line of Bonne from From the Kitchen....I'm thankful you are such a wonderful mom..watching over and intervening for your daughter. Sometimes you have to make those hard decisions even if you know it has to happen somehow and someway.
ReplyDelete"the no one can help feeling"
ReplyDeleteThat must be, in some ways, the worst.
Oh Elizabeth. My heart tears when I think of what you go through, seeing your daughter hurt and hurting.
Hell IS here on this earth and anyone who doubts that just is not paying attention.
Of course, sometimes heaven is too, but that's hard to remember sometimes.
that no one can help feeling? is the worst thing i can remember about my childhood. and the worst thing i've ever felt in relation to my children, especially a certain young man who has threatened to teeter off the edges of anywhere we can reach him.
ReplyDeletei am not doing what you are doing or feeling what you are feeling but i do understand fear, suffering, grinding dark happenings that will not relent, and the desperate need to find light and strength and hope
xo
Wasn't actually wondering that. Some days it's enough just to show up.
ReplyDeleteI'm with Carrie. Some days good enough is more than enough.
ReplyDeleteLove and light.
So very sorry. Sending you love and wishes for a better tomorrow.
ReplyDeleteReading backwards...catching up. And I despise that "no one can help" feeling. I'm always so surprised to feel all alone with the challenge de jour. I'm working on accepting that, but not making much progress.
ReplyDeleteI don't imagine Sophie sees hell in your eyes.
ReplyDeleteNot for a moment.
Did the nurse try hot packing Sophie's arms? Hot, wet towels, wrapped around and covered with a blue pad or saran wrap, for about 3 or 4 minutes will help the veins dilate. Not so hot as to burn, but like a hot bath.
ReplyDeleteWish I was there to help out.
Of course you'll think of something to be thankful for. And no I am not an optimist.Optimistic people make me nauseous...about as nauseous as pessimistic folk. Blatant reality here, honey. And so let me help you... You are thankful that even in the darkest days and hellish situations and the darkest friggin forests that there are people who look at you and know exactly where you are coming from and extend a hand to help you when you are too weary to stand up and to keep you ever lifted up in prayer which is seriously underrated in our culture. And not just because they live similar lives in watching their children suffer over and over and are empathetic to your plight but because you are an inspiration to them when THEY are in the forest and when THEY don't have the strength anymore to keep hiking that uphill path.
ReplyDeleteYour violin is eloquent. Your pain is real. I hate that Sophie has to endure it. That you all have to endure it. My heart breaks for it. I can't help, but I am here listening, and to some degree, understanding. At least I understand the hell of unending pain with no solution. I know it's worse for you, though, because you're watching your child go through it instead of yourself. I LOVE that you illustrated it with the Matt Groenig cartoon...
ReplyDeleteReading this makes my heart ache for you and Sophie and your whole family. I hope today and tomorrow go easier. Much love and good thoughts to you.
ReplyDeleteI'm so glad you're Sophie's mom. So VERY glad. And fuck the nice lady nurse. I want to punch her neck.
ReplyDeletelove,
Rebecca The Meek and Mild
Hi Elizabeth,
ReplyDeleteI just wanted to let you know that I am praying for you and for Sophie often. Your love and strength AMAZE me. I am thankful for your ability to continue on in this HELL for your beautiful daughter.
xo
Natalie David
Thinking of you. I'm so sorry things are so relentlessly hard. I send healing thoughts to you and Sophie. xo
ReplyDeleteteary.
ReplyDeleteugh.
thinking of you both.
This is getting ridiculous, when I went through my phlebotomy rotation during school to become a med tech, after 3 misses that was it. Under NO circumstances no matter how confident it would hit were any further attempts warranted.
ReplyDeletewhoever made the rule or was trying to enforce this vow of silence that the little bunny cannot just say "sorry" and admit. I am sorry that you have to go through this, I am sorry that some people believe in outdated ways of treating people and I am sorry those in charge of the care are so careless.
I realize this is an old post and cannot tell you how proud I am of you leaving an field of medicine (even while training for a leadership position) when it was clear that unethical practices were continued despite numerous ethical practices in many cases easier for EVERYONE involved.
Okay, call the nursing service and tell them you will only accept the "best" and I mean the "best" vein finder as your nurse today. As a pediatric nurse I know that there are people that are good at this, and there are those that are not - most phlebotomists are better at this then RN's , but they can't admiinister the drugs...but there are many amazing vein finders in the world, tell the "agency" to get them to your address today and tomorrow. The three stick rule is also a good one... all health providers know it, few follow it.
ReplyDeleteNo need to find anything to be thankful for today - you officially have the day off because you are the mother of a disabled child. Good luck!