Balance: an even distribution of weight enabling someone or something to remain upright and steady.
"slipping in the mud but keeping their balance"


synonyms: stability, equilibrium, steadiness, footing

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It’s a bit interesting to me that the day before Kadlin’s trach anniversary I talked a bit about balance on Facebook! I also had the opportunity to talk to some wonderful med students and talk them through a bit of my life with Kadlin and how our family dynamic works with her. I thought this was something I could spend a blog post talking about.

Priorities and balance are fairly important in my life. When we realized the extent of Kadlin’s complications we started really talking about what was important in life. How much intervention would we do to help her live longer than her body would naturally go? How much is ethical, how much are we doing things TO her vs FOR her. There are days I have no idea. BUT, I do know that if I didn’t know what my priorities were, concerning her and life in general, I would be far more lost as to the actions we would take.

For me my biggest priority in life is quality of life. That means a million things for a million people. For me it means “On the whole, are my days filled with happiness? Do my actions leave me feeling full of contentment? Did I do something to improve my world and at least one person’s day?” That is quality to me. I know those seem like pretty broad and general quantifiers, but knowing what matters most to me lets me have clarity of thought when I make decisions, large and small. 

Kadlin is on hospice. This isn’t something we hide, but we don’t advertise it either. Mainly because of how uncomfortable it makes everyone around us. Suddenly we are treated like we are fragile and will break with any sort of comment. It’s rather odd. With death in general being taboo and a child’s death even more so, I understand that it’s disconcerting to think about. It may seem odd that I talk about death and balance together, but let me tell you how they have come together in my mind.

Kadlin’s life will be brief. She will not have the normal life span. We don’t know exactly how long, but it is not likely to be typical in any way. I would rather that we only do things that bring pleasure and joy to our lives. There are things I need to do that I don’t enjoy,  like clean the bathroom and occasionally make sure we eat, take Kadlin to a million Dr appointments and drag our family to the ER just to get on LifeFlight. In the end though, these are things that will increase quality of life.

Things that also increase quality is doing what I love. I love going on walks and playing with my babies, exploring new places, taking drives just to see the world with my family, holding my amazing hubby’s hand. Todd loves owning a business and improving people’s lives though the gym, spending time with me [I mean, who doesn’t? ;)], and chillin’ on the beach as a total beach bum [one of the MANY reasons we are perfect together]. Todd also just told me I needed to mention his deep love of bacon as part of life quality for him:) Conor loves to roast marshmallows on campfire, going to the movie theater, blowing bubbles and flying kites. Kadlin loves playing with her family and her soft fluffy toys. She loves getting out on walks and enjoyed when we went to Leman caves. Exploring tastes and textures are always and adventure for her.

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I spend a decent amount of time in the hospital with Kadlin. Enough so that on my way to her room it is more surprising when I don’t see someone in the halls that I know. I’ve been driving poor Conor insane the last few days with all the people that I talk to on our way to and from different places. Knowing her death is close, relative to a typical life span, I have been able to focus on the beauty of life with her as it is now. It is far easier for me to live every day better, with more joy, more kindness, more empathy for those around me. In the hospital I find the little pleasures are even easier to find. Good coffee, okish coffee not as good but free coffee, cheap food, the grand piano I get to pound on and sing with on the 3rd floor foyer, “hospital friends”, seeing my girl’s beautiful smile.

There is so much good here at the hospital I can’t even list everything that makes this place amazing! But the highlight for me is seeing professionals work hard to literally save and change lives. It’s not often you get the opportunity to see people make a drastic difference in other’s lives. I find immense joy knowing so many people who actively change lives.  There are many people who know my girl, who care about her and who she has impacted. I love seeing the lives she has touched. Personally, she has made a HUGE difference for me.

Balance to me is finding the good when overwhelmed with the bad. Removing the things that aren’t needed and don’t bring me joy.

I hope you are able to find a little more happiness and balance in your life today.

Mary Beth Stubbs

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