How Can I Enjoy a Holiday Party When My Son With a Rare Disease Is at Home?

How can I enjoy going to parties this holiday season with my sick child at home? This is a question I continue to ask myself every time I’m invited to go out and enjoy myself in the celebration of the lives of the people around me.

It’s not an easy decision to split up your family when you’re all invited. But with my son’s chronic illness, being in crowds during the winter is quite frankly one of the most frightening things to think about as his parent.  

He has a primary immunodeficiency of unknown etiology, which is known as “the bubble boy disease,” and his specialists in multiple cities are still struggling with how to keep him from getting hospitalized multiple times a year.

Most families can enjoy a holiday party without ever having to think about the consequences of catching a cold or viral illness. However, our family and other families affected by this illness have to weigh the benefit and risk in every decision we make.

Don’t get me wrong, we’re able to enjoy intimate gatherings with close friends, dinner out on occasion and even have playdates for my son with other children in the neighborhood. But there are precautions we must take.  

Everyone who knows our family is aware of the incredible burden we all bear as a family keeping our son safe from germs. However, even though it is known, it’s not well understood. Who could look at a playful child with no tubes, machines and nurses tagging along and fathom he’s in imminent danger and will be hospitalized if he catches a simple virus? After all, most people will never realize how a simple virus can cause their world to turn completely upside down.  

It’s a blessing, though, in our minds. We do bear this cross and hope and pray others never have to. We make decisions to enjoy our lives around my son’s illness because life goes on. It’s not fair to have to split up in order to enjoy large gatherings and celebrations with our friends and family. But it’s a necessity in our minds because we want to live life to the fullest. We, as parents, don’t have this illness, and his sister doesn’t have his illness.

We understand he misses out on a lot, but we also realize he’s able to enjoy so much more even though he may miss out on some big events. At 6 years old, he understands he’s risking his health if he does engage in large-group activities in the winter with other kids who are in school and can possibly be exposed to viral illnesses.  

Believe it or not, he doesn’t get upset about it (considering his age) when he’s told he won’t be attending a large party with bounce houses or a wedding with family and friends he doesn’t see often.

I’m not sure if he cares about the big parties in a way most parents do when we want our children to experience everything life has to offer and to watch our children playing and enjoying themselves with our close friends and family at large once-in-a-lifetime events like those.

But the most important thing, in our minds, is his safety. And simply knowing he’s home safe and comfortable with either one of his parents as the other is out celebrating the lives of the people we love is a relief.

While it may seem unfair to not attend parties together due to illness, we find a way to make it work for our family. We aren’t upset our child and other parent can’t attend. We simply look forward to the quality time we get to enjoy with our children one on one in safe, loving environments.

The memories we create, whether at the party with our healthy child or at home with our child with a chronic rare disease, are the moments that will be remembered in their hearts when they look back on their time with us.

It doesn’t matter where we are or what we do together. What matters is how we feel when we are with each other and being fully present in the moment to create those long-lasting memories together and to make the best of each moment.

Time is precious, and we choose to focus on the positive aspects the inconveniences of illness provides to us. After all, if we focused on what we didn’t have, we would never be able to truly enjoy what we do have.

And what we do have is a tremendous love for each other and a knack for creating the happiness we want to remember together.

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