Our SBS Story, Uncategorized

Our SBS Story: Is positivity, perfection?

We are a positive family, so does positivity mean perfection? No. In the past year we’ve had a major life crisis, humbling visits from the hospital chaplain, our son had 85% of his small intestine removed (as well as ICV, appendix, gallbladder), sepsis, acute liver failure, gallbladder disease, failed surgeries, successful surgeries, chronic vomiting, chronic diarrhea, chronic nutrient deficiencies, a diagnosis of short bowel syndrome, a resulting dependence of IV nutrition and g-tube feeds, immunodeficiency, and an adventure that has included a winding road through four States and 5 children’s hospitals. That is the abridged version of our journey. Those are just facts, they don’t define us. It might surprise you that this isn’t a sad story, it’s OUR story and the result of all of this is a beautiful and radiant little boy. We are positive and filled with Faith, Hope and so much love. Why? Because despite the ups and downs there is so much gratitude to be had. There is joy in everyday and there is pleasure in our ability to make the best of each day for our son- that’s bliss. We choose positivity, it is a deliberate mindset- and it has the ability to change our world. It has brought us peace and happiness in the toughest days. It sustains us through the chronic challenges our son faces and the stress and unknowns ahead. In our family, as in others with a chronically ill family member, positivity doesn’t mean perfect, no news doesn’t always mean good news and the struggles continue despite lack of complaint. It has been our decision as a family to surround our son with unwavering positivity despite the hard times, because he’s deserving of that, because childhood should be free of avoidable stressors and because it is our absolute pleasure to care for our son.

Believe me when I say that there are times when positivity takes a backseat to other emotions, I’ve been there and I’ve seen it from others. There is a time and a place for the spectrum of emotions, they all have their place, they are normal and perfectly ok. Faith and Hope are great things to rely on in these acutely ¬†challenging times. However, I’ve made a practice of evaluating when positivity can find its place again and I don’t let it be absent for long. Otherwise, positivity’s nemesis (negativity) moves in without warning and that’s a place that I don’t want to be.

You might be saying, ‘but my situation is so much worse.’ It may be- I know families who have lost loved ones, who are fighting uphill battles and who have fallen on very difficult days. But so many of these families shared in my mindset of positivity despite the unimaginable. It’s due to the belief that positivity is around the corner when it’s time to seek it out.


In our home, we play, we laugh, we cry, we hug, we kiss, we read, we pray, we snuggle, we explore, and we LOVE. In our home we don’t do pity parties, we do dance parties, and that’s the way we CHOOSE to live. We do allow room for the spectrum of emotions but we survey them regularly. Our journey is challenging, unique, and beautiful, isn’t anything that is worthwhile? And believe me every moment spent with our family is worthwhile and we are so grateful for our normal, it’s not perfect but it can be so so so good- because we give ourselves that gift, through state of mind.



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