Setting Boundaries Is Important During Long Hospitalizations

Many years ago, when my youngest son was 11 months old, he was hospitalized during the Christmas season due to hemophilia complications. We enjoyed the different community groups, such as performing arts groups, school groups, and church ministries, that came to share a tiny part of the holidays with us. While most visitors respected patients’ boundaries, there were times when I had to advocate for my son to protect his personal space.

At the University of New Mexico’s Children’s Hospital, there is an open space where these groups may gather to visit, perform, or pass out gifts to those in the hospital. Parents can bring their children to the area, but if their child is struggling, they can choose to stay in their rooms and privately deal with the situation.

My family appreciated the option to either participate in the open area, or stay in our room to combat the effects of a nasty joint bleed that never seemed to stop. This separation of public and private spaces helped us maintain my son’s privacy, as we could control our environment and limit the number of people with whom my son interacted. My stinky, little boy could not yet speak for himself, so I became his advocate and strictly protected his personal space.

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Unfortunately, there were times when visitors did not respect the boundaries between the public open area and the private hospital rooms. I understand that most people come to pay their respects with good intentions, but when a bleed occurs, we must focus on our son. He does not need to be around strangers while struggling with horrible pain.

I am sure that many adults choose to deal with pain and illness privately. Why should we expect less for our children?

One day, a performing arts group was visiting the hospital, and the media sent a local team to cover the story. The nurses requested permission for performers to visit my son in his room, but I declined. My boy was experiencing too much pain to entertain guests.

However, a woman from the media team appeared at our door with a cameraman, prepared to start recording. She seemed to assume we would agree to her entering the room. I asked to speak with her in the hall, and explained that this was not a good time to visit my boy. His medical issues required us to focus on his health without anyone else in the room.

As I spoke, my son screamed in pain as nurses tried to find yet another vein to infuse him with much-needed factor VIII. The woman probably wasn’t happy that I told her no, but there comes a point when my son deserves his space. When he grows up, he can make his own decisions, but I am his advocate for now.

I want to clarify that most organizations that visit children in the hospital during the holidays are incredible, and respect patients’ privacy. Long-term hospitalizations can be very stressful for patients and their caregivers, and those who come to share the joy of the season often fill the hearts of both children and adults. Visitors break up the monotony of hospital life, and connect us with a world that seems far away during an extended hospitalization. For brief moments, the chaos of the hospital meets open hands and hearts. I have been overwhelmed by the outpouring of love and gratitude we’ve received during the roughest of times.

As parents, we must remember to stand up for our children when internal bleeding episodes necessitate immediate care. By setting up healthy boundaries, we can reclaim some power over the situation. The only way to establish a sense of normalcy is to focus on our loved one’s needs, and let them guide us regarding appropriate interactions.

I always hold my stinky boy’s best interests at heart. In doing so, I hope he learns how to set appropriate boundaries for himself.

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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 Services, and are intended to spark discussion about issues pertaining to hemophilia.