A rite of passage: My son takes on his medical paperwork

His new, adult responsibilities are changing my caregiver role as his advocate

Joe MacDonald avatar

by Joe MacDonald |

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My youngest son, Caeleb, and I recently visited the Ted R. Montoya Hemophilia Treatment Center (HTC) for his yearly checkup. This appointment was his first to the treatment center since turning the magic age of 18.

Before leaving the house, we discussed what he should expect as a newly bona fide adult. He might have to complete paperwork, I explained, just as his mother and I have done yearly. He quickly dismissed my warning and, with the self-confidence of someone who can handle his problems, opened his car door to leave. Together, we set out for our annual adventure.

I promised Caeleb that I’d find a chair when we arrived at the treatment center while he checked in and completed all the necessary paperwork. A moment later, my son came to me with a mound of papers and sat down. “Dad,” my spirited, self-assured young adult son said, “this is a crazy amount of stuff to fill out. It may take me two days to review all the required information.”

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My initial inclination was to help him finish as fast as possible, but instead I said, “Don’t get overwhelmed. Just answer each question one at a time. You’ll finish answering all the questions quickly.” With that assurance, I sat back and watched Caeleb handle each answer, one at a time. While he was challenged at times, I enjoyed watching him rise to the challenges and slowly but surely work through each page.

After a short time, Caeleb conquered the beast of paperwork and turned in the forms to the appropriate people. “Did you fill out this information every year we visited the HTC?” he asked. I nodded, and he responded, “I had no idea what you had to do each year.”

I told him the HTC paperwork wasn’t all that was involved in his hemophilia care. There were similar paperwork tasks for trips to the hospital, appointments with other physicians, and camp registration. He looked at me with frustration and said, “Dad, this adult thing is not what it’s cracked up to be.” I assured him the process won’t feel as overwhelming as he gets used to it. I hugged him and told him how proud I was that he managed the situation and completed the necessary forms.

What a transition means to us both

For Caeleb, completing paperwork with little to no assistance marked a significant moment in his transition from boyhood to manhood. He took more of his power into his own hands. What appeared like an exercise in filling out simple forms became an invitation to something much bigger. My incredible son assumed more agency over his life as he took the reins of his healthcare into his competent hands.

While watching Caeleb handle his business, I realized something that hit me between the eyes. Sitting beside him as he filled out the required forms meant that my relationship with advocacy was changing. Allowing my son to handle his affairs meant one less thing he needed from me.

For a moment, I questioned my reason for giving up a responsibility I gladly performed for 18 years. What if Caeleb no longer needed my assistance? What did the role of a caregiver mean for me as Caeleb took control of his life? A chill came over me as I experienced an uncomfortable feeling in my bones. I couldn’t help but wonder if my presence in his life would fade away.

I realized that as Caeleb filled out his forms, frustrated at the situation, I went through my emotional struggle. The strangest reality overwhelmed me as I realized we both felt slightly out of our comfort zone. He experienced the truth about adulthood while I managed my feelings regarding an ever-changing relationship with life as a caregiver.

My son must begin his journey in adulthood as much as I must accept changes in our relationship. He did a good job, and for that, I’m grateful. With every step he takes to manage his life, he develops the confidence to enjoy success. I must remember that while my relationship with my youngest son changes, so will my role as an advocate.

I look to the heavens and say, “Thank you for this young man I love with all my heart.”

Note: Hemophilia News Today 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 another 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 Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.


Traci Estes avatar

Traci Estes

i really enjoy reading your articles!!! Ironic how your article about your 18 year old I read literally a DAY after I encountered the same feelings and REALITY of my own son Austin while trying to complete necessary paperwork for college. He got very frustrated with me when I could NOT obtain his immunization records, access to his FINAL Transcript etc. Adulthood for kids at 18 is a very shocking moment and them realizing exactly all the things we parents have done for them in the past.
Continue sharing you articles......Your Friend from Katy Texas.


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