Our Son’s PH Journey Helped Me Appreciate My Husband More

Our Son’s PH Journey Helped Me Appreciate My Husband More
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I view marriage in a very spiritual and traditional way. It is one of the seven sacraments of my Catholic faith, and legally, it unites two people as partners in a personal relationship. To me, the vows are sacred, and as I mentioned in a previous column, they are sometimes tested beyond what a couple could ever imagine, which has been the case for me and my husband, Brian. 

Brian and Colleen on their wedding day, May 6, 1995. (Courtesy of Colleen Steele)

In May, we will celebrate 26 years of marriage. Our greatest blessings have been our two sons, Cullen and Aidan. Our greatest challenge has been our vow “to have and to hold … in sickness and in health,” but it has also been what has united us the most. What was unexpected is that it wasn’t our health that declined but that of our oldest child, Cullen.

When he was 8, Cullen was diagnosed with pulmonary hypertension (PH), and along with just about everything else, my marriage had to adapt to the extenuating circumstances. Brian and I had a strong foundation of love and faith, but caring for a sick child also required businesslike skills. 

We partnered together by organizing, delegating, encouraging, researching, brainstorming, and working our way through the complexities of PH. We were also attending full-time jobs and making sure Aidan was feeling loved and cared for as much as his critically ill brother.  

It wasn’t easy, but as a family we got through it — until we faced the next twist to our wedding vows. Thank God it wasn’t “death do us part,” but it was a parting of sorts. In 2014, Cullen received a heart and double-lung transplant. While he recovered from surgery, he and I lived for four months near his transplant clinic while Brian and Aidan remained at home in Washington state, working and attending school. 

The Steele family during recovery following transplant, September 2014. (Courtesy of Colleen Steele)

During that time, it might have appeared to outsiders that Brian became a silent partner, the last name on the medical charts and the one financially supporting the Steele family corporation. 

In honor of “Husband Appreciation Day” on April 17 and our approaching anniversary, I’m acknowledging that sickness and separation never demoted Brian to silent partner. His love, protection, and emotional support are always felt, even when many miles are between us. 

In the following interview, Brian breaks the assumption of silence and shares his experience and feelings about marriage, parenting, and caregiving.

CS: In what good and bad ways did Cullen’s PH diagnosis affect our marriage and concern you as a husband?

BS: Every married couple has moments of conflict that can strain their relationship. Money, personality differences, household chores, and other stressors often become a wedge driven between them. Introducing a life-threatening disease into the mix didn’t make things better, but it helped us remain focused on the big picture. All those other things are nothing compared to the health and well-being of our children and our marriage.

During our marriage prep classes, our priest advised us to avoid keeping a mental grudge list of all the times our spouse has disappointed or failed us. We still get angry at each other, but we always follow it with an “I’m sorry” or “I love you,” and then we let it go so it doesn’t keep dragging us down.

During Cullen’s transplant recovery, what was the separation from us like for you? How did it affect your relationship with Cullen, Aidan, and me? What helped you get through it?

The separation was hard on all of us. We called each other every day and discussed what was going on in our lives, but it was hard to deal with not being there to help with problems or to celebrate successes. You shared so much with Cullen during his recovery, so you have a different relationship with Cullen than I do. I think I can say the same about Aidan’s relationship with me compared to you.

What has been your greatest struggle as a behind-the-scenes caregiver, and what advice do you have for husbands and fathers living the same experience? 

As you mentioned in previous columns, the secret of our success has been sharing the load. We split up the duties, so most days are routine. For the days when one or both of us are emotionally or physically exhausted, we do our best to cover for each other. I think our dedication to each other and our children helped us keep it together. 

Two years post-transplant, the Steele family is together again in Washington state for Aidan’s eighth-grade graduation in May 2016. (Courtesy of Colleen Steele)

How would you describe our 26 years of marriage?

It’s been a roller coaster with highs and lows, good times and bad. We’ve met a lot of PHriends and PHamily, who mean the world to us, but we’ve also lost too many to PH. I can’t imagine getting through it all without you there to keep me going. 

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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.

Colleen Steele was born and raised in New Jersey and received a Bachelor of Arts in English from Immaculata University in 1994. Currently, she lives in Washington state with her husband and two sons. Her oldest child was diagnosed with idiopathic pulmonary arterial hypertension when he was 8. At the age of 14, he received a heart and double-lung transplant. He has experienced many bumps in the road but for the most part, he is doing well and living life to the fullest. Colleen’s love for writing, experience advocating for her son, and determination to spread PH awareness inspired her to become a columnist and forums moderator for Pulmonary Hypertension News in 2019. In her, “Life As A Caregiver” column, Colleen is open and honest about caring for her son, his experiences living with PH, and life post-transplant. It is her ambition to educate and inspire others facing similar challenges that her family has battled and survived.

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Colleen Steele was born and raised in New Jersey and received a Bachelor of Arts in English from Immaculata University in 1994. Currently, she lives in Washington state with her husband and two sons. Her oldest child was diagnosed with idiopathic pulmonary arterial hypertension when he was 8. At the age of 14, he received a heart and double-lung transplant. He has experienced many bumps in the road but for the most part, he is doing well and living life to the fullest. Colleen’s love for writing, experience advocating for her son, and determination to spread PH awareness inspired her to become a columnist and forums moderator for Pulmonary Hypertension News in 2019. In her, “Life As A Caregiver” column, Colleen is open and honest about caring for her son, his experiences living with PH, and life post-transplant. It is her ambition to educate and inspire others facing similar challenges that her family has battled and survived.

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