PAH taught us the importance of finding light in the darkness

How my husband and I have passed on the gift of hope to our daughter

Karen Schultz avatar

by Karen Schultz |

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My mother, Ann, became a nana when she was 40 years old. In some situations, becoming a grandparent so early involves a crisis, so it may not be regarded as good news. In our case, I got pregnant when I was 18 and a freshman in college. The nine months gave us enough time to plan for my daughter, Taylor, and brought a needed joy and purpose to our lives.

My daughter and mother always had a bond that I envied. My mother enjoyed each moment, thanks to the wisdom that only time brings. Taylor could never do anything wrong in her grandmother’s eyes; everything she did seemed to bring my mother joy, until my mom passed away from pancreatic cancer at age 64 in 2018.

I’d always assumed I’d have plenty of grandchildren of my own, as Taylor had been the first of 13 for my mother. Finally, my husband and I got the news last Christmas that we would be grandparents. Taylor and her husband, Jeremiah, wrapped a pacifier as a gift for us. As soon as they left that night, I began shopping on Amazon for baby clothes and books and thinking about everything the baby and I would do together.

Tragically, my daughter lost her baby when she was 12 weeks along. I was extremely sad and deflated, but never doubted that this experience was part of a larger plan for her life.

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Why I have hope

When my husband, Tim, was diagnosed with pulmonary arterial hypertension (PAH) in 2001, we began living life more intentionally, recognizing that time isn’t promised. Over the years, we’ve faced many challenges with health insurance and bureaucracy, as well as not qualifying for government programs and having to weigh the high costs of medications against their effectiveness.

Last month, when both our insurance companies sent notice that Tim’s Uptravi (selexipag) would no longer be covered, we had to scramble for a solution. The dark times never completely vanish, but living with PAH has taught us to find the light in our situation.

Since January, I’ve been grieving for my daughter and the hardship she and her husband experienced early in their marriage. It reminds me of how Tim and I had to face the hardship of his PAH diagnosis early in our own marriage. It forced us to take inventory of what was important to us and cemented what we meant to each other.

Bad news is never welcome, but it’s often during the dark times that couples can learn to lean on each other and endure together. Tim and I have faced many struggles as a couple, but we work to ensure they strengthen our bond rather than drive a wedge between us.

Observing the way Taylor and Jeremiah handled this crisis made me proud. We instilled in her the tools she needed to cope with challenges and maintain hope, just as my mother did for me.

I expect light to burst though the dark times because Tim’s illness has brought about growth, not despair. I have seen this gift in my daughter, and I hope to see it in my new grandchild (expected to hatch March 28, 2024!). Without hope in the difficult times, my husband and I wouldn’t get to share in life’s joyful moments.

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.


Sandra Hiatte avatar

Sandra Hiatte

Such a sad/joyful letter. It is wonderful to have an attitude like yours--and family also. Enjoy the grandbaby. We who have pah have good days and bad butthat is life--and there are so many little things to treasure. Best of luck in the future to all.


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