Moma and Me: We’re in This PHight Together

“Without you, there would be no me.
I am everything reflected in your eyes.
I am everything approved by your smile.
I am everything born of your guidance.
I am me only because of you.”

– Richelle E. Goodrich, “Making Wishes: Quotes, Thoughts, & a Little Poetry for Every Day of the Year”

Because pulmonary hypertension (PH) affects the family as a whole, I interviewed my mom, Deb, this week. We call her Moma. Moma is the most selfless and resilient woman I know. I appreciate her taking the time to answer my questions as we help to promote PH awareness.

Excerpts follow:

JC: As a mom, you were always ready to jump in and “kiss a boo-boo.” When you first heard of pulmonary hypertension, what were your thoughts?

DW: I didn’t know much about PH. Because you are a nurse and research everything, we all knew a little, but not enough at the time. It took multiple doctor visits and hospitalizations before a doctor diagnosed you. The diagnosis was a shocker, mainly because we were hoping for a “quick fix.” It was far from what any of us expected.

You’ve always been ready to hop in the car and head to Texas anytime I’ve needed you. What would you say has been the most difficult part of being a mom to an adult with a rare disease with no cure?

At first, I couldn’t and wouldn’t accept this for my loving daughter. The more I learned about PH, the more I feared for my daughter. Every day, I watched it take over your body. This ripped my heart apart. I spent countless minutes in prayers.

Knowing there is no cure for PH is heartbreaking. My worst fear is knowing my daughter could be taken from us at any moment. We have experienced some close calls on more than one occasion. I have also watched as many of your PHriends have passed away, and I have seen how that affects you.

Now, almost 16 years later, what would you say to a parent of an adult child who is newly diagnosed with PH?

Most important is finding a doctor who specializes in PH. Because PH is rare, not all doctors know about it or how to treat PH patients. Stay open-minded and supportive so you can better advocate for your child.

How has PH affected your family as a whole? Why do you think this is?

Most of our extended family feel the love and care that you send out to others. Although they do not fully understand PH, they know how it affects you daily. But your sisters have a tough time knowing how or what to feel. I know they love you but are afraid to let your PH into their lives.

PH means that sometimes planning family gatherings or activities is challenging. You cannot go places with higher altitudes due to the oxygen. Road trips are difficult, too. This means you do not always get to participate in family gatherings or vacations. I see how this affects you, because you were always about family time and making memories.

What has watching your daughter navigate life with PH taught you?

Watching you, I see that you are stronger and have more determination than I could ever have. You single-handedly did your medical research from the beginning when multiple doctors could not find a diagnosis. I do not think you would be with us today had you not advocated for yourself. So, for those reading, never give up hope.

What is one fact that most would be surprised to learn about me?

You have a bit of a wild side, like me. You love music and dancing.

Touché, Moma. If I could see myself through your eyes, how would that look?

I see a beautiful, delicate, blue-eyed little girl with a smile that brightens the world. The same beautiful smile has always been there to make others feel better, PH or not.

November is PH Awareness Month. What is one way to spread awareness this month?

Because we have PH year-long, I am a part of a few PH groups on social media. I also share your stories and those of others on my social media page. Talking about our stories will help spread awareness. I pray for all the other parents and children who have PH. Together, we PHight for a cure!

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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, and are intended to spark discussion about issues pertaining to pulmonary hypertension.