Am I a Caregiver or a Mom?

Colleen Steele avatar

by Colleen Steele |

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Life As a Caregiver

I struggled with the title for my column because what I write about will be from my perspective as caregiver to my son. However, using the word “caregiver” was bothering me because who I am above all else is his mom.

When someone refers to me as a caregiver, it makes me feel like they are viewing what I do for my son as a job instead of the special relationship that it is. Everything I do for him is a reflection of my love, not an obligation.

The lengths I would go to in order to take care of my son who is health challenged are no greater than the ends of the earth I would go to in caring for his brother who is healthy. So this got me thinking that the words “caregiver” and “mom” should be considered synonymous. Every mom I know is a caregiver, and we should embrace that title the way we do our children.

As they age, we have to adapt our caregiving accordingly. The same is true when you nurture a child who is living with pulmonary hypertension; there is a balance you have to maintain between the age of the child and the stage of their disease. My son was 6 years old when he became symptomatic with PH, but he wasn’t diagnosed until age 8. My experience as a PAH caregiver then extended five years, until his health declined and he received a heart and double lung transplant at 14.

In August, my son, who is now a young adult, will be celebrating five years post-transplant. As an adult, he is taking on more responsibility for his own healthcare, so my role as caregiver and mom are evolving yet again.

There have been a lot of changes over the years, but nothing compares to the fact that, since transplant, my son no longer has pulmonary hypertension. However, I still consider myself a PH mom. If I ever said my father had been in the Marine Corps, he would correct me and say, “Once a Marine, always a Marine!

I believe the same is true if you have parented a child with a life-threatening disease. The PH battle was too life-changing for it to ever stop being a part of who I am. “Once a PH mom, always a PH mom!”

I decided to go with caregiver in my column title to encompass my experiences as a mother raising a child with PH and eventually caring for him as a transplant recipient. As I brainstormed for the rest of the title, I found my identity as caregiver and mom being challenged yet again. I was leaning toward “Caregiver Corner,” but there are disagreeable synonyms for corner: ambush, trap, shut in, dilemma, etc. These words do not reflect the heart and soul of a caregiver or a mom.

Yes, there have been challenges and heart-breaking moments, but caring for my son has always been a rewarding experience, and unlike a job, it’s something that I would never quit doing! I am giving care to a life, and life is precious. I have never felt cornered into being a caregiver; instead I embraced it, and have felt the same love and care in return. “Corner” would have been an inappropriate word to use.

So I embrace not the job, but the “Life As a Caregiver.” I hope my shared experiences will inspire and support you through the ups and downs of caring for your loved one, whether they are your child, parent, sibling, spouse, friend, or anything else. Where there is unconditional love and the desire to support a person through thick and thin, there is a caregiver.


Note: Pulmonary Hypertension 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 Hypertension News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.


Jimi McIntosh avatar

Jimi McIntosh

I agree with what you are saying and how you feel being a caregiver, you can add “advocate” for your son. You are a mom 1st, advocate 2nd, 3rd you are life, love, happiness and safety for your son. You protect him from all the bad, evil and painful things in life, you are his advocate, cause you want the life saving treatments for him.

I had a daughter born with a chronic illness that spent 50% of her 1st year in hospitals and doctor offices. Her mother wasn’t born with the “mothering instinct”, she only spent 1 night in ICU, the blood, the sickness bothered her. I spent nights and days with my child, assisted by her aunts and one grand mother. I nearly lost my child and lost my mind.

My mother was always there to protect me, educate and direct me down the right path. I didn’t always agree with her, but I respected her, always counted on her support and LOVED HER. My prayers are with you, hoping that you can continue to be “MOM”, that is who he knows you to be.

Colleen Steele avatar

Colleen Steele

I am so sorry to hear about what you went through with your own child. It sounds like she was, and I'm sure still is, well taken care of by you and her other special caregivers.

You are right in that caregivers are also advocates. So often it is our voice that our loved ones rely on to speak for them when they are not able to.

Thank you for your kind words and for sharing your experience!


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