Sunday, October 30, 2016

Breakfast? Yes! But First......

The alarm goes off. I wake up instantly refreshed from a great night full of peaceful sleep. I stretch while I get on my t-shirt and stretchy pants for my bike ride. I eat a banana and drink a 16 ounce glass of room temperature water so it absorbs into my freshly awaked body faster. I ride my bike outside for 30 minutes enjoying the wind in my hair and the fresh morning air that not many others have breathed yet. While I ride I listen to inspirational and fortitude building words from great spiritual leaders through my head phones. I roll back to the front door of my house to find my husband dressed sharply for a day at the office with a lovingly packed lunch that I prepared the night before under his arm. He is waiting to say our morning prayer before he leaves for work. With a prayer and a kiss he is on his way. I wash my face and great dressed in one of my favorite blouses and jeans. I sort through my favorite earrings for the extra punch of awesome to my ensemble. I apply eye liner, mascara, and lip stick and finish it all off with a face flattering up-do, the kind I like that once I do it in the morning doesn’t move for the rest of the day. My “wake up the kids” alarm goes off. I lovingly go into each of their rooms and wrap my arms around them to wake them up. Each kid hops up, immediately makes their bed, gets dressed and goes to the family room to start our morning routine.


The alarm goes off. I’m exhausted because there was a really good book I was finishing last night and I stayed up way too late reading it. I hurry and grab my phone to see what time it is and how much longer I can stall before one of the kids wakes up. My husband has already left for the day. I think it was my turn to pray. I think I said the prayer after he politely nudged my leg to say goodbye. He left on time, very skilled in his habits despite my inability to become so. I have talked myself out of getting up earlier than the kids for the past 9 years because any time I have done so it seems any noise I make (I have witnessed or maybe imagined even the lifting of my blanket off my body being the noise that woke them up) will wake them up causing my day to start even earlier than normal which would sure be a bummer. Soon I hear my name being moaned resembling I think the sound of a hungry baby calf in pasture, “MOOOOOOOOAAAAM.” They have all mastered this morning time moan. Maybe they get together and practice when I’m not paying attention. I go get the first kid out of bed and tell them to please quietly get dressed because the others are sleeping still. They get dressed and them come lay on my bed while I am trying to pretend that I am right back into really great sleep already while I listen to them ask me repeatedly why I’m not up yet and if they can do this or that thing this very second. Minutes later the other kids are all up, except thankfully the baby. So I whisper warn which escalates into a whisper yell at the other kids to be quiet because what we are about to do downstairs in the living room will be a lot easier if the baby stays asleep through the start of it at least.

Make up, yes I will squeeze it in at some point later. I’m a nicer mom with eyeliner on! Exercise? I’m pretty sure that folding clothes and chasing kids will once again be my exercise. Hey maybe I will even vacuum today because that really can get vigorous. I admire gym moms, cheer for them even, but it’s just not me. My husband’s lunch is usually packed by himself. I’m grateful he loves me anyway even though it’s really a treat if I pack his lunch once or twice a week.

Is my own personal reality juvenile, yes! Should I be a big girl and get out of bed with my husband in the morning and start my day properly, yes! But hey nobody’s perfect and if I wasn’t so good at picking books I like to read then maybe I would sleep more. But lately I’m on this roll of fantastic books and if its not staying up late reading books it would be staying up writing, or drawing, or painting, or sewing or whatever it is I want to do at night after all is quiet on my family front and I can throw caution to the wind and spend my time on something besides dishes, diapers, medicine administrator and crumb patrol. I do see the bad habits I need to break, but I haven't done it yet!

It’s funny though because even though I could do WAY WAY WAY better with my personal morning habits we have mastered the art of cramming all of our treatments into the typical hour and a half from when we wake up to when we send the school kids off to school. We literally hit the ground running and when all is said and done I’m proud of what we get done in regards to our morning accomplishments. I recently made a list of just our morning meds to help me feel more collected when I do get around to convincing myself to start the day. I have a lot to improve on, but feel grateful for the chance to try harder to be better tomorrow.

Wednesday, October 19, 2016

A Tribute to Butter Cookies

I got a phone call from my kids pulmonologist a couple of weeks ago. When I see it’s a phone number from the hospital after we’ve had a clinic visit and I’m waiting for test results my senses sharpen and I get tense swiping to answer the call. Then when it’s actually one of our doctors on the other end of the line and not a nurse or other office staff delivering the news I know I need to find a chair and sit down. It’s always worse when the doctor calls in person. I appreciate them calling in person so much and actually feel honored (a little star struck really because I have loved and respected all of our pulmonologists to date) that they would take that time to make the call themselves, but I’ve learned to brace myself.

Anyway it turns out that Orson and Ruby both turned up with pseudomonas. It’s not the first time for Orson, but it is for Ruby and its not good news for either. Pseudomonas is a bacteria that tends to colonize in CF lungs and become resistant to treatments causing big damage issues long and short term. What it means for now is two courses of antibiotics for both kids. One is a semi-typical oral antibiotic and the other is a beastly thing that takes 30 – 35 minutes a day and lasts for 28 days. I am head to toe grateful for the beastly 28 day antibiotic but I allowed the news of it to clothesline me emotionally, then I let the reality of it smash my confidence.

It’s like I was a successful manager of a business one day, knowing when and how to successfully administer all treatments and meds throughout the day completing my 78 (exaggerating on the number or guessing at least) step dance routine with a graceful bow at the end of the day. Then with the news and the new blend of meds and treatment additions its like I was back to my first day on the job my manager title ripped from my name badge and I was still expected to do the 78 steps but add in 15 more intermittently and my trainer was out sick so I was on my own. Good luck figuring out that analogy, but the point of it was I felt like a failure.

So what did I do? Take it day by day. Pray. Make time for self contemplation and encouraging. I soon saw again the truth in my conversation I had with a veteran CF mom 9 years ago that “the treatments seem like a lot but soon they become normal and you don’t even think about it.” Really right now the tricky part is getting all of Ruby’s stuff done. The older two are extremely compliant and capable to doing their treatments with little assistance from me. I change meds out in their nebulizer cups but they can sit through treatments on their own.

Ruby however since she is at the adorable age of one does not sit for anything, especially for 30 minutes of inhaled medication and vests twice a day. It’s just one of those things where at this point in her life we go to battle during treatments. Its similar to a three stooges episode. I am Larry and she is Curly. I go to grab her and get her 4 inhaled puffs in from her chamber and she somehow wrestles away from me between each one. Making a 4 minute process into a 10. Then while I am setting up her vest and gathering the medications for that she is dismantling the vest and hiding the fish mask to her nebulizer cup. When I finally time the treatments right (on a good day) with a sleepy time for her and gather up all the meds she decides that she can pull the top piece out of her nebulizer cup making it non-functioning 20 times during her treatments. She watches me (although surely she is less diabolical than it seems to me during our twice a day battle) for any chance to flip the hoses off her vest so that I have to readjust my fragile balanced hold on her body, the neb cup filled with expensive lifesaving liquid easily spilled mandatory medicine to now bend over and retrieve the popped vest hose and again attach it.

The bright side of all of it is that it will pass. Soon she will be doing treatments like a boss with her other siblings all lined up in a row on the couch. But for now until it does pass and we are still acting out a Three Stooges episode twice a day I have (along with prayer and spiritual motivation) Danish butter cookies. I am aware that my love for them is unhealthy. I like to think that the calories burned during my core and stress work out balancing the baby and the medicine and the vest shaking us through the whole thing makes up for the calories consumed in the cookies. I’m no nutritionist, but I will tell you that these Costco Kelsen Danish Butter Cookies have some sort of special ingredient on my ability to face the day and make it happen. I think the ingredient is butter, or maybe its sugar. Either way thank you Danish Butter Cookies, each and every one of you!
My tribute to Danish Butter Cookies.

So CUTE! So not into medicine marathons! My neither sister, me neither!