Updated: Nov 19, 2018

I look at our whiteboard countdown to our Ohio Trip and the numbers keep shrinking.  Seven more days until I get to show my family the sleepy little town where I came from.  My carefully guarded excitement is definitely overshadowed by my nervous anticipation. I know this feeling, it’s been here before.  The whiteboard, which now hangs in our daughter’s nursery, was used to countdown my fast approaching due date just months ago. It’s that same swirl of butterflies chanting “How is this going to work?”.   

I’m a bit of a worrier.  I take comfort in having a carefully thought out plan.  Before I met the man of my dreams and started a family, I travelled often.  I would map out my outfit for each day or which hair-styling utensils I had room for.  My planning ahead was to make sure all of my toiletries were 3 ounces or less, that I charged my toothbrush and I have shoes to coordinate with each outfit.  The worst thing that could happen is I wouldn’t have a pair of brown sandals! Now that there are three of us, I find that priority shifting. Three times the joy, but three times the worry.  I now have a page and a half of items dedicated just to keeping my husband alive. I have half a page of items to keep my daughter comfortable, and at the bottom of her list I have in chicken scratch three things for me: Clothes, Shoes, Toothbrush.  

As for Kevin’s list….we shipped a box of supplies out early to my grandmother where we will be staying.  28 pounds worth! Many things that we won’t need until we get to Ohio. Nearly seven years into his ALS diagnosis, our day to day life is always unpredictable.  He has 12 bits and pieces connecting him from his vent to his trach. In my worried little mind I have played out the scenario of what I would do in the event any of them were to break.  Better take 2 of each! There are six separate chargers for each piece of equipment, a spare ventilator, a spare suction machine, a cough assist, his assortment of medications, pill crushers, feeding tubes and shakers.  We are bringing a surplus of “Liquid Hope” (his MRE’s) for when I decide to tell him Ohio has never heard of naked juice, or fresh avocado. There is a spare Trach in his size and one size smaller incase the emergency tracheotomy I perform in my worst case scenario doesn’t go as planned.  There is an AMBU bag in the rare case I mess up both of these attempts. Plus, super glue (I’ve used it before), maybe some duct tape, and definitely a pocket knife. He has dubbed me his “MacGyver”, a title that I wear proudly.

We took our first road trip to Miami with Elliott when she was just six weeks old.  We were going to see the Cubs season opener. Crazy, I know, but I couldn’t say no to the biggest Cubs fan in the world after he had been such a supportive partner throughout our pregnancy.  During our commute, the connector to our oxygen condenser broke in transit. I asked Kevin and his caregiver to pick up some super glue at the store when they were out. Later, after being scolded for not sharing with him what had happened, I explained that I didn’t want him to worry.  I was then gifted the greatest thing anyone has ever said to me. “I never worry when you are around.” Believe me baby, I worry enough for all of us!

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