Decision-making is part and parcel of parenting kids with special needs. Guest blogger April Brownlee is here with Part 1 of a 2 part series about how to handle those difficult decisions. Today, she shares the the first of 5 tips she’s developed for making decisions on behalf of her daughter who lives with Noonan’s Syndrome.

5 Tips for Making Special Needs Decisions, Pt. 1

I can never decide what is the hardest thing about parenting a child with complex medical issues. The unknown that lies ahead? Worrying how they’ll integrate at school or in new social settings? Second guessing the decisions you’ve made on their behalf? Making those decisions in the first place? All of the above with emphasis on the latter?

I spend some time in the online community dedicated to a group of syndromes, one of which affects one of my children—Noonan syndrome. Mostly, I find myself there just reading, absorbing, and learning, humbled and mesmerized by families challenged to make difficult decision after difficult decision. Noonan syndrome falls into the RASopathies—a group of syndromes in the body’s RAS-MAPK pathway. They’re the largest group of related neurodevelopment syndromes known. The gene mutation that causes these syndromes happens in a part of the body responsible for cell development. That equals the opportunity for almost any system and function in the body to be affected. And that equals parents of those affected often finding themselves faced with making difficult choices.

I don’t think anyone would argue parenting a medically complex child changes you in the most organic of ways. For me, I find myself always waiting for the other shoe to fall. If my kids are all healthy today, I can’t wrap my brain around why or how, because there were a few years that were really sticky. My nerves and my patience are definite casualties of dealing with it all. So how do parents who’ve faced even darker situations do it? How does one find peace in decisions where the outcome can’t be known in advance? How do you make a decision that could change your child’s life for the better—or go horribly wrong?

I asked parents who’ve had to make the hard choices. These parents have children affected by one of the RASopathies. But because the syndromes affect each person so differently, what they have learned can be applied to any parent advocating for any sick child.

Tip #1 for Making Difficult Medical Decisions

Do the best with the information you have at the time and never, ever, look back.

Laura Gardner is a Massachusetts mom whose 3-year-old daughter, Rozlyn, is still undergoing diagnostics to determine exactly what gene mutation she has. She says, “I think our most difficult decision was experimental surgeries on Rozlyn’s kidneys every three months, going in blind, not knowing for sure the outcome, trying with every part of you to stay positive and to hope and pray and have faith that all will turn out OK. The way I felt when it came down to it was I could not sit back and watch her suffer—that something had to be done. I researched a lot and now three years later, she is clear from a kidney standpoint for six months, and still on preventative meds. But surgeries were successful for her. Will more lie ahead? I don’t know, but I have no regrets.”

What Decision-Making Tips Have You Developed?

April will be back tomorrow with 4 more tips for parents like us. Until then, what do you think of April’s no regrets rule? What rules have you developed while making difficult decisions for your child? Leave a comment below. And come back tomorrow for Part 2 of April’s series.

Five Tips for Making Special Needs Decisions, Part 2

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop-up box and the second at the bottom of this page.

Photo credit: www.freedigitalphotos.net