GUEST COMMENTARY: Becoming more than an older sister to a brother with Down Syndrome

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I remember sitting in the passenger seat of my mom’s van earlier this year, waiting for Rock Bridge High School to let out for the day, when we first broached the topic.

My mom asked what would happen with my brother Matthew if she and my dad could no longer take care of him.

I responded immediately, as did my younger sister, Jessica.

“We’d get him,” my sister said.

“It would be one of the three of us,” I added, referring to myself, Jessica and my other brother, Daniel. He would live with one of us, I told her, depending on our circumstances.

“Really think about that, though,” my mother said. “You say that now, but that’s a lot of responsibility. What if you have a husband or kids of your own?”

“It doesn’t matter,” I replied. “He’s our brother.”

It was a discussion that continued over the next few weeks in intervals when Matthew wasn’t around and the topic of lawyers and court came up. It almost always ended in tears or a sudden change of topic, but my response never changed.

“It doesn’t matter. He’s our brother.”

The situation was pressing. My parents needed to know who would take care of him after they pass away or in case anything happens to them. They were trying to determine who would become my brother’s contingent caregiver — a title I affectionately called “backup guardian.”

With both Down syndrome and Type 1 diabetes, Matthew functions at about a first- or second-grade level. His inability to care for all of his needs on his own meant his 18th birthday on March 24 was more complicated than most.

Under Missouri law, all minors become adults when they turn 18. They become responsible for making their own decisions about health care, education and other services.

When I turned 18, this wasn’t much of a change — I already understood many of the decisions my parents made on my behalf and what they meant.

For many people with special needs like Matthew, however, the transition into adulthood isn’t as smooth. They may not be able to make the same decisions without assistance.

In that case, someone close to the individual must petition the court for a guardian — either to become the legal guardian of the individual or have the state appoint one.

Because of this, my parents had to apply to maintain guardianship of my brother after his 18th birthday in order to still help him make decisions about his care. The court would decide whether my parents maintained access to my brother’s medical records and property ownership. Without a legal petition, those decisions would rest solely with my brother.

We prepared for the hearing for over a year, through multiple meetings with lawyers, what felt like mounds of paperwork and six court delays. My parents and I, as all the members of the household over the age of 18, were fingerprinted and given criminal background checks, and we spent more than $1,000 in attorney’s fees, fingerprinting and related expenses.

As the court date drew closer, I watched my parents try to explain to Matthew everything that was going on and why it was important — “so Mom and I can still help you and talk to all your doctors and teachers,” my dad said the morning of our court date.

Finally, the day came. While my MU classmates were returning from spring break, I sat in a courtroom on April 2 next to my brother and my parents, waiting for them to explain to the judge why they needed to retain guardianship over Matthew.

I sat next to my brother and listened as my mother explained the daily care that goes into caring for his diabetes — the numbers and measurements at mealtimes, the need to sometimes make conversions and do simple math on the fly to make sure he eats the proper amount of carbohydrates at each meal. It’s math Matthew can’t do on his own — it’s too difficult and too much is at stake if he accidentally switches numbers around.

In truth, I didn’t need to be there. I could have done what my two other siblings, Daniel and Jessica, opted to do that day — go to school, take tests and finish other assignments for class. I didn’t have a role in the petition for guardianship, except maybe to show support for my parents and for Matthew.

In the months leading up to the court date, Matthew’s court-appointed lawyer and guardian ad litem explained that deciding his contingent caregiver now didn’t really matter. Whomever we chose would still have to go through the court process and petition for guardianship again, no matter what my parents said.

But that was the reason I went — to understand the process. After many weeks discussing who would care for Matthew if my parents died, they accepted that, as the oldest of the four children, I would take him in if something happened. I would become the contingent caregiver — the “backup guardian.”

After a 15-minute discussion, the judge granted guardianship to my parents without question. It was a quick decision for such extensive preparations.

But the role I will one day play in Matthew’s life is something I’ve been preparing for since he was born.

Matthew is my brother, and I couldn’t bear the thought of letting him live in an assisted-living facility when he could live with me. It’s just like how I couldn’t bear the thought of putting my parents in a retirement home when I could care for them myself.

It’s the same feeling I have with any of my siblings — they’re my family, so they come before everything else.

To most adults, my decisions may sound naive. When the conversation comes up, they remind me frequently about the amount of responsibility I’d be taking on, or about the effects those decisions could have on my future or my career. They’re the same cautionary tales I hear now that I’m taking on the responsibility of Matthew’s guardianship.

I know the decision is a big one, and it’s not one I’d make lightly. But the decision to not take on that responsibility would be far harder for me to live with than a few road bumps in my future.

I’ve thought often about how my life would be different if Matthew had been born typically functioning, and it’s hard for me to say exactly how my life would change. I’d like to think I’d still be as close to my family and understand the special needs community as much as I have in growing up with him.

I do know that his presence has had a profound impact on my life and what is important to me.

With or without Down syndrome, Matthew is sweet, smart and a goofball of a brother. I love him and my other siblings with an amazing depth and strength. Caring for him would be a great responsibility, yes, but it would never be a burden.

It doesn’t matter to me how my life plays out if I become Matthew’s guardian.

He’s my brother. I love him. So I’ll do what I can to care for him, whatever that may entail.

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