Reflections From a Thankful Caregiver

Reflections From a Thankful Caregiver
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Are you a pulmonary hypertension (PH) caregiver? If so, then November has been your special month. Thanksgiving is celebrated this week in the U.S., and all month there has been a focus on PH awareness and on many of you. That’s right — on many of you — because November is also National Family Caregivers Month. Did you know this but forget like I did? That is so typical of caregivers to lose focus on themselves.

If celebrating a holiday and double awareness in one month feels overwhelming, try contemplating a common thread that ties them all together. I am reflecting on thankfulness. If you are asking yourself how that applies to PH, then you probably have not been reading the daily stories shared in “30 Days of PH.”

Throughout PH Awareness Month, Pulmonary Hypertension News has been publishing personal stories of patients and caregivers. In their own words, they describe struggles but also gratitude for the many blessings PH has unexpectedly given them.

There are paragraphs filled with words of appreciation for understanding strangers who have become PHriends, birthdays, milestones, achievements, and careers that many never thought they would live to enjoy, successful fundraisers, deepened faith, powerful hope, strengthened bonds with family and friends, and the list goes on.

I often share my grateful heart in my columns, too, and I thank you for reading them! It helps me feel less alone, and hopefully what I share helps you feel the same way. Life as a caregiver is not easy, but the love and dedication I put into my son Cullen’s care is worth every breath he takes.

Admittedly, it has taken a lifetime to fully appreciate that good things can come from bad experiences. Cullen’s PH and transplant journey have opened my heart to believing this. Our family has been blessed by good people and amazing moments that we might not have otherwise experienced.

As a caregiver, am I as appreciated as I am thankful? I believe so. Often, it’s conveyed through Cullen’s smile, his eyes, a kind word, and his genuine concern that I am taking care of myself, too. But I know there are days when the only way he can thank me is by accepting my care, conserving his energy, dealing with his emotions, and being a compliant patient.

I am thankful that even as an adult, Cullen isn’t too proud to accept help. If it takes an emotional toll on him, I don’t often see it. He is motivated by his own grateful heart to do whatever it takes to stay well and to protect his donor’s gift of life.

There are many times when it’s Cullen who reminds me to be thankful even though ironically it is often when caring for him that I forget. I lose perspective when dealing with pharmacy delays, insurance declines, financial concerns, and loss of sleep as well as when witnessing Cullen’s health go from one extreme to another, often in one day.

This month I have reflected on what I have to feel thankful for. Cullen reminds me to feel grateful that he has medication, doctors, nurses, tests, and procedures that help keep him well, even if it means working through the occasional red tape and frustrations along the way. Money is usually tight, but my family still has a roof over their heads, food on the table, clothes on their backs, and one another.

I worry a lot about Cullen, his brother, and my husband, but thank God they are all still here to worry about. And my mother worries about me. She prays every night that I will have a restful sleep and a peaceful mind in the morning. I am thankful to still have my mother and caregiver.

Many of us may feel challenged this year to find meaning in Thanksgiving due to pandemic restrictions. It sounds cliché, but we are all in this together. If you ask a person living with PH how much they lean on this motto, they are likely to tell you they put all their weight into it. One of the reasons we celebrate PH Awareness Month is so that no one feels alone with this disease. You don’t have to feel alone during this pandemic, either.

Take this bad situation and use it to remind yourself of what you have to be thankful for: friends and family with whom to call or video chat, joy found in happy memories, food in your fridge or safely delivered to your door, talents and skills to keep you entertained, perhaps a pet for company, and, if you can’t think of anything else, at least feel thankful for your life.

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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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