Saturday, September 20, 2014

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.

Monday, September 15, 2014

Thank you notes

Thank you for making cookies while I was at the hospital.
Thank you for rushing my other boys to your house so they didn't have to see the ambulance pick up their brother
Thank you for changing your plans to stay with us
Thank you for bringing me dinner at the hospital
Thank you for offering to bring me lunch in the hospital
Thank you for deciding that you should bring us dinner, and then doing it without asking if it was okay
Thank you for rushing into my home, picking out what I needed and then driving it to me at the ER
Thank you for telling me to always have a "go" bag ready for emergencies (next time)
Thank you for picking my boys up and reading them stories before bed
Thank you for flossing Ryan's teeth before bed
Thank you for telling me you loved me while I was crying on the phone
Thank you for buying me $50 worth of magazines to keep my mind occupied
Thank you for calling me and leaving a voice mail
Thank you for doing ALL the laundry before you left
Thank you for checking in with me everyday since, to see how we are
Thank you for letting me run with your dog
Thank you for buying dinner at Snuffy's while my husband took a shift in the hospital
Thank you for sending me pictures of my boys at the parade that I missed
Thank you for driving Owen home from baseball
Thank you for stopping me mid-run in the parking lot and giving me a hug
Thank you for explaining the intricacies of the pulmonary system
Thank you for shaking my hand each morning on rounds
Thank you for not waking me up in the middle of the night while you were checking his vitals
Thank you for offering to fly up from Texas to help our family get through this
Thank you for well wishes on Facebook
Thank you for for your prayers
Thank you for offering whatever we needed
Thank you for not pretending everything was okay
Thank you for laughing with me
Thank you for the hilarious texting banter while we were waiting in the ER
Thank you for reminding me how loved our family is
Thank you for going to Target to buy your 8 year old grandson more diapers
Thank you for the amazing chili and all fixings
Thank you for offering to take the boys with your boys
Thank you for bringing the boys to the corn maze ALL-DAY
Thank you for finding a replacement for my PTO post
Thank you for checking in with me after I abruptly left your house because of Dermot's seizures
Thank you for not fighting me when I requested a round of antibiotics
Thank you for picking up the phone on the first ring
Thank you for having Dermot's entire class sing a get well song, video taping it and then posting it on YouTube so Dermot could watch it while he was laying in bed
Thank you for being my village.

Each time we have a crisis I am reminded how loved we are. I am reminded that we are not alone in this journey with Dermot. We have family in town, even if they are not related. It's more than okay to ask for help. To be specific. Because in doing so, I am helping you be of service. Because then you can feel less powerless. You can step up and make a difference. However big or small your deed. You helped us. You will be called upon again as we go on this road with Dermot. You are valued, appreciated and loved by us. You share our pain, our heavy load, our joy, our uncertain future.

Thank you.