I realize we are just getting started helping our children and family as a whole unit live and succeed with chronic disease. We have definitely had more experiences in the hospital and at the doctors than an average family, but know there are other families that absolutely have had more experience than us. Watching each of our infants experience at some point an extended hospitalization left us feeling confused, afraid, lost, guilty, and often very angry. In the beginning I remember a toe to toe nose to nose discussion with one pulmonologist on call one day in the hospital with my 7 month old son (who heart breakingingly screamed bloody murder through every IV). The pulmonologist told me to “get used to this mom, you have to get used to this, you have children with a chronic disease you need to expect weeks in the hospital.” I was furious. I told her I refused to accept the hospital as normal and I refused to quit asking to go home as soon as we could as often as I could. She never came back to our room, and I never saw her again. She asked another pulmonologist to handle us (lets be honest me). I think I would like to let her know now that I apologize and I understand. I’m not happy about it, and it still feel angry about it a lot of the time but I understand that being intermittently hospitalized is part of my children’s life. We also understand that our emotions are second to helping our kids do their best to prevail with positivity and hope. Our attitude will be mirrored and magnified in them especially if it’s a negative one.

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.

False.

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.





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1 comment:

  1. KatheeOctober 31, 2016 at 9:12 AM

    You are a super hero in my book. You get so much accomplished. Every. Single. Day. You are a visual lesson in patience and kindness and motivation. You don't get enough time alone or in a horizontal position - so grab it whenever you can! And - you forgot to mention the exercise you get from running your stairs a dozen times each day or carrying hauling laundry, or ypur daily jog to a neighbors house that you are performing some kind deed for.

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