Facing IPF, Mortality, and a Future as an Only Child

Christie Patient avatar

by Christie Patient |

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Growing up as an only child, I’ve spent my whole life hearing what one Washington Post writer calls “a slew of profoundly unflattering and occasionally contradictory stereotypes.” I’ve been told many times how lucky I am that I don’t have to share my parents’ affection with siblings. Or how spoiled I must be because I was the only child. And there’s always that delightful assumption that I’m socially inept or just a straight-up weirdo because I don’t have siblings.

In the U.S., 82% of children under 18 live with at least one sibling, according to a 2017 study, so people might find it hard to relate to what my life must be like as an only child. It often seems like they feel bad for me, as if my singleness were an embarrassing flaw.

It’s uncomfortable to be unable to relate to others — I get it — but defaulting to assumptions like that to try to bridge the gap is honestly a bit offensive. Actually, it’s cool if people with siblings adore their siblings, and it’s fine to brag about them. I promise it won’t hurt my feelings.

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And though I have an aversion to the word “spoiled,” I did get a lot of attention from my parents. They always tried to fulfill my needs and wants growing up. That’s because they are good parents, not because I was their only child. They would have done the same if they’d have had more children.

But along with undivided attention also comes undivided responsibility — and unshared pain.

When my mom, Holly, was hospitalized due to an acute exacerbation of her idiopathic pulmonary fibrosis, it was only my mother who was dying. There was no one in the world who I could call to cry to about a dying mother. And at 28, friends, cousins, and my husband couldn’t relate to what I was going through. It was extremely isolating.

I dropped everything to move to San Francisco to be my mom’s caregiver. It was an easy choice because there was no one else to do it. My dad was her primary caregiver, but he needed my help. He took care of important tasks, and he sat by her ICU bed, but he was exhausted and terrified, too.

My mom needed an advocate who could talk to doctors, was good at taking notes, and could communicate with friends and family. She needed someone to rub her feet, paint her nails, and daydream about a wedding dress. That was me. 

It was an honor to be able to care for my mom when she was in the hospital, and during her recovery from a bilateral lung transplant. I don’t have any regrets — or resentment that I didn’t have siblings to share the load.

Facing my mom’s mortality was hard for my entire family, but it made us stronger and brought us closer. It helped me grow up and solidified my role as an adult member of the family. My parents have included me in more of their grown-up conversations since we have recovered from my mom’s transplant. Her brush with death inspired them to get their affairs in order. In many ways, being the only child has made that process easier for all of us.

It gives me comfort to know that my parents have done that hard work. Perhaps if they had not, I would appreciate having a sibling to help me deal with the legal aspects of familial death. On the other hand, the death of parents can put incredible strain on sibling relationships. As always, there are pros and cons to both.

I’m thankful that my parents established a trust with clear plans for what happens when they pass. They’ve given me access to those documents along with their wills, advance directives, and powers of attorney.

It doesn’t bother me that I will be their sole successor trustee. I won’t have to try to negotiate, compromise, or work with someone else to fulfill their wishes or make arrangements. Maybe that is a symptom of being an only child — I like to be in control. I know how to cooperate and share, but I’m not a fan of group projects.

Just because I will be solely responsible doesn’t mean I will be alone. I have a loving husband, many close friends, and cousins who I can lean on for support if I need to. I don’t have siblings to share the journey with, but it will be OK. It always has been. 

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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Comments

Randall Thornton avatar

Randall Thornton

Christie, just read you posting and thought it was a very informative and heart felt. I am glad you were able to help your dad out and take care of your mom. I was an only child too for the first 12 years of my life. Then my mom remarried and I became a stepbrother. We were never close and haven't spoken in decades. But I have a wife, 3 kids and number of grandkids. I have made all the arrangements for my final journey so no one has to do anything. My one son and my wife's niece will be helping her out with the little details, so I think everything is ready when the time comes. Weird to be talking about your death, but when you have IPF, you never know when.
Christie, have a good week.

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Christie Patient avatar

Christie Patient

Hi Randall, thanks for reading and commenting. I'm sure your heirs will also be grateful for your preparations. Plus, it's nice to know your role when it comes down to planning things in the end. I know it can be really uncomfortable to talk about these thing but I think it is really important, and makes life a lot easier for those we leave behind. Good on you for taking charge!
Wishing you the best,
Christie

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