By Samantha Jones
At 17, my parents asked my opinion on who my brother Zach should go to if anything were to happen to them. Since I was no longer underage, my parents were revising their last will in testament, so they thought they would take a look at the whole thing, other than what just pertained to me. I gave it some thought. Of course all of the options were valid: family, and close trusted friends being the list of who we were choosing from, but none of them seem to sit right with me.
Looking at Zach having C-ACC, along with a long list of other diagnoses, we are at a complete loss as to what the future holds for him. Doctors are still confused as to how he has made it to age 27. As you might have read in the previous post, Zach can get on my last nerve, but it’s my last nerve to get on, not anyone else’s to claim. So, when thinking about who my brother should go to if my parents should pass, the obvious answer at the time was, “me.”
Being the stubborn teenager I was, that was the end of the discussion and I wouldn’t hear anything otherwise. There was no feeling of obligation to take Zach, it was a natural decision for me for a number of reasons. The biggest deciding factor was that I thought about every single option we had as a potential to take on my brother, and not a single one of them totally “got it.”
Siblings, parents, friends, you understand what I am saying, they love my brother, they do everything they can to love him well, and care for him, but they don’t totally know how to interact with him. They don’t know how to de-escalate situations before they blow up. They get embarrassed easily. They don’t know how to completely speak his language and I worried they wouldn’t be up for the challenge. So, why put my brother or that family member or close friend in that situation? They can still be an awesome and loving support in the way they can be and continue to learn at their own pace.
At the time I also was vehemently against assisted living facilities because one day Zach came home from school and told us that his friend was being “sent away by his family” and was wondering when we were going to send him away. I never wanted Zach to feel like he was unwanted or unloved by us.
Over time, though, Zach saw other people his age grow up and go off to college. He saw them get careers, and cars, and homes. Zach would see friends from school who would eagerly tell Zach everything they had done and he would be so proud of them, but you could tell that he wanted to do those things, too.
Thirteen years later, my opinions have changed a lot due to knowledge, life experience, knowing Zach’s wants and goals, and what is best for my family. Zach asks constantly when he gets to go off to college and when he will get to drive a car. He longs to be independent and there are some amazing facilities I have come to know and support, though as of right now at least, he will not be able to live there on his own, even with assistance.
Also, 13 years later, this is no longer just my decision. With my fiance, Justin, Zach’s self-proclaimed best friend, we are in constant discussion of what happens to Zach if something happens to my parents. It sucks.
It sucks because no one wants to talk about what will happen to their sibling if their parents die. Parents don’t want to put that burden on their children-and I do mean all of their children, their mainstream children for caregiving, arrangements, aide, etc., and their children with special needs who may feel like they are too much trouble. It sucks because some are avid believers in caring for your child at home and some are avid believers in facilities.
I know I’m preaching to the choir when I say that everyone, including individuals who don’t have anyone in their life with special needs, have an opinion on that topic and will give it freely (friends, I have so many extra coffee mugs we can smash together in frustration, come on over). It sucks because all you want is to do what is best for your sibling, or child, or whoever it may be in your life and whatever decision you make, there is always that fear you made the wrong one.
I made a very big decision at 17 years old that I still stand by, however, that was my decision in my circumstance with my brother. Life happens. Journey’s change. I do what I can today, which is take my brother’s FaceTime calls at 9:45PM, make kissy faces, and tell him that I love him more than chocolate and pecans. I hear about what he did that day, and we make fun of our mom. He asks when I’m coming home and when I’m bringing Justin so we can hang out just the three of us. Then he’ll say, “knock, knock” and I’ll say, “who’s there?” and then he will hang up.
I laugh every time.
What will you do?
Samantha Jones works in young adult ministry, and has a specific passion for addressing mental health and individuals with special needs. She currently serves at the Recruiter and Liaison for the Advanced Pastoral Degree Program at Northern Seminary in Lisle, Illinois, as well as an Adjunct Professor in the Theology Department at Trinity Christian College. She is a graduate of Truman State University (BA, Communication Studies, Minor in Theatre), and George W. Truett Theological Seminary (MDiv). She is starting the Doctorate of Ministry in New Testament at Northern Seminary in the fall of 2021. Samantha believes that Christ calls us to live unfiltered which leads to more authentic relationships and can be learned from the special needs community. She has a perfect dog, Harper, and her life would not be as joyful without her little brother, Zach. Connect with Samantha on Instagram @samjowritesstuff or her website: www.samanthamjones.com.