Routine

I'm still waiting for the blender and the new running shoes to arrive that I ordered online last week.

Children's hospital had free wi-fi and I had an ipad while I spent three days with Dermot in the hospital last weekend. He slept, I shopped.

I found a fantastic deal on a new down coat in anticipation for this year's winter. Some new skinny cargo khakis and a v-neck merino wool sweater will also keep me fashionably warm this coming season. Plus the t-shirt on Etsy I ordered for a friend, (she's going to love it!) and the blender that has yet to arrive will make my morning smoothie ritual much easier.

And of course the running shoes, I checked, they'll be at my house by Wednesday. I'll need those the most. I've been relying on my daily runs as therapy (along with the online shopping) to get me through this illness that Dermot is suffering through. So far he's missed two weeks of school, probably will miss a few days next week and my routine has come to a halt. Or if it's been longer than two weeks, perhaps this IS my new routine?

Wake up in the morning, see Owen and Ryan off to school and drink my coffee and wait for Dermot to wake up. Make my green smoothie from kale, avocado and many other healthy ingredients, check on Dermot. Give him his morning meds while he is still sleeping. Finish my smoothie, drink my second cup of coffee, change out of my pajamas and into my running clothes. Tend to Dermot, who has just woken at ten a.m.. Let him cough out his 3/4 cup of morning mucus, change his diaper, put on clean loose fitting clothes and start the new daily routine of constant suctioning, nebulizing, using the respiratory vest, and changing his position every 30 minutes to ensure the mucus doesn't settle and his O2 level doesn't drop below 90. All this while watching for seizures...

Joe arrives home for lunch, I escape to my friend's house to collect her Vizsla for my therapy session, a 3-5 mile sprint around the neighborhood. Eminem and Busta Rhymes have kept my pace strong and angry, when I finish I'm calm and sweaty. Ready to return to my son, the machines and the new routine.

I've decided there isn't much value in planning his return to school. I learned long ago that expectations only cause trouble. "This too shall pass" is my motto. "Be Still" is my mantra.

The absurdity of this horrible illness is that we are getting used to it. We are beginning to think that an 88 O2 is pretty good. Only having to suction every 30 minutes is "better" than yesterday. This is how we roll. We have to, or we'll fall apart. I'll save that for later. Probably when I'm not expecting it at some wildly inappropriate time.

For now, I will try my best not to spend too much money while online shopping. I'll be out there running my troubles away with my new favorite running buddy.

Hoping my best for an end to this new routine. Hoping.

Comments

Rachel Reeves said…
I hope to see you out there Sunday with those new shoes. I'll be thinking of you on this run and know that you are not just a fantastic mom, but a special friend and an amazing woman!
September 26, 2014 at 7:41 PM
Post a Comment

Popular posts from this blog

Letter to Dermot

Image
"Letter to Dermot" Dermot, I’ve been trying to put off this letter for quite some time. I just gave birth to your little brother and have realized how heartbroken I am over you. I look at pictures of you and get a tinge of sadness where I should get joy. I see the things you cannot do and the things you won’t be able to do. I’m so sad about it. I feel responsible, so much more than anyone else knows. I look back on the day you had your first seizure and I’m so angry with myself that I didn’t know what was happening. I feel like the length of time was my fault and that it caused more damage to your brain than was necessary. I’m so sorry. I know that you deserve the best in everything for your life and my regrets run deep. God has a plan for our family, I know. All of the challenges that you go through help make us stronger, but I wish more than anything that I could take all the pain away, all of the drugs, all of the therapy. I sometimes imagine you as a normal little guy get...
Read more

Fourth time

Just as I crossed the last thing off my grocery list, I heard a muffled chime from my purse. I thought to myself, I wonder if its Dermot's school. Not really believing it was, but teacher Jan was on the other end of the line. "Hi Sue, Laurie has administered the Diastat for Dermot", she said with a tinge of sadness in her voice. "Okay, I'll be right there" I said. I looked down at my full cart of much needed groceries and pushed them to the register. One part of me wanted to continue and check out as if nothing was happening, the other, wiser part said "get the hell out of here". Another abadoned cart at the grocery store. This time I call Joe, "I'll meet you there" he says. Three stoplights later and a quick jaunt on the highway and I'm there. Wiped the tears away and ask the receptionist for admittance to the special education wing of the school. I walk briskly to Dermot's classroom. The other little boys are having circle...
Read more

Profoundly

I've written many essays in my head. There's the one about being embarrassed by Dermot throwing up in the hospital cafeteria, or the one about friends and how they've changed over the years, or the story about the man I met at the hospital with the nineteen year old son with Dermot-like disabilities or my favorite, the way I use chocolate chip cookies as therapy. I sit in waiting rooms and write in my head, by the time I get home the details are lost or the energy has left me. I sit awake in bed staring at the ceiling knowing what I want to write, then I get out of bed, start up the computer and my words have left my head. I've been struck by how profoundly sad I am. I am really sad. The challenges keep coming, changing. I've learned many coping mechanisms, I've found a higher power to run the show, I seek out help from support groups and therapists, I volunteer to help others. All of these things make me feel better, but to my bitter disappointment, they do...
Read more