Caring for a Child With a Rare Disease: Vacations? What Are They?

As parents, we cherish the moments when we can create lasting memories with our children, especially during vacations. However, for those of us with medically complex children, like me, the view of close friends who can go on carefree family vacations can strike a unique mix of emotions.

While I am truly happy that everyone is able to take these trips, a constant worry goes through my head as I don’t know if my child’s health will allow us to do this: Will my child ever get to experience a vacation like this and have the same emotions these families have? Or did my child’s rare disease rob them of those experiences?

Will my child ever know what vacation feels like?

I am not going to hide the fact that the older my rare disease child gets, the more I worry if he will ever get to feel the way these other children feel – the way I felt as a child during a vacation.

Some may think my feelings are because of resentment, however, that’s the furthest from it. Instead, it’s a feeling of hurt knowing that my child may not get to be part of something so great because of something totally out of their control. It comes from a desire for my child to live like a neurotypical child instead of being controlled by a condition given to them.

Will his body fight against him?

The worry weighs heavily on my mind as I visualize situations where medical needs take over my son’s enjoyment. I think about this especially recently, as a change to my son’s health felt like it happened overnight.

My son is often unable to fully participate in activities even when he wants to. Even though he is nonverbal, it is obvious he is anxious and stressed. He wonders when his body will fight against him and when it’ll just let him be a typical 7-year-old. He may not have his voice yet, but it is obvious he knows how he feels, and that breaks my heart.

Isolation hurts

When children cannot communicate how they feel, they experience a profound sense of isolation. I see this grow in my son every day. The days that used to be filled with laughter and smiles now often result in my son shutting down and quickly heading to his room to watch his shows that make him comfortable.

I see my son withdrawing and unable to relate to those around him, and I see myself doing the same. It hurts. Our family is constantly having to adapt to the next challenge.

Living in the now moments

Though all of these things are thrown at us quicker every day, we will remain strong. We have learned that small victories are the biggest victories. This allows us to connect as a family and a rare disease community and remember how far we have come, the milestones we have achieved, and the ones that have yet to come.

As the emotional road will always be there, I have learned that it is essential to acknowledge feelings. No matter how small the feeling is, talk to someone. We can remain hopeful and positive through conversations with others, even those who aren’t in our shoes. I often talk to my village about how someday I hope to take my son to travel the world, sharing his story.

Ultimately, while my journey as a rare disease parent may impact my ability to take my child around the world right now, nothing is saying that it will never happen. I am dedicated now to ensuring my son’s life is filled with love, laughter, and meaningful experiences. In these moments, we will always be able to find a sense of hope, reminding us that as hard as life may get, there is so much more to the journey than a simple vacation.