What I Wish I Could Tell You About Our Holidays as a Special Needs Family

Before I had children, I absolutely loved the holiday season. It was simply my most favorite time of the year. I loved everything about it: holiday baking, planning parties and family dinners and searching until you find the perfect gift for the special people in your lives.

Since having children, and more specifically my oldest son who has intestinal failure, while I still love December, my whole perspective about the holidays has changed. These are the top five things I wish we could tell our loved ones about our experience during the holiday season:

1. Family get-togethers are important.

For our son, Hartley, seeing family and spending time together over a good meal is one of his absolute most favorite things. Hartley doesn’t get to spend a ton of time with friends and family, especially during cold and flu season because he is immunocompromised. So to our family and friends who get their flu shots and who make an effort to see us when and only when they are healthy, we can’t thank you enough.

2. We feel guilty for having to say no to holiday get-togethers.

While we are trying to enjoy the holiday season, we also have to be restrictive with Hartley, and sometimes we feel guilty for having to say no. Sometimes two events happening two days in a row will just knock Hartley down so much that we have to say no to one of them — or both. We often feel like we are letting people down when we can’t commit to every function or have to tell people we can’t see them until cold and flu season is over. But ultimately, we have to do what is best for our son.

3. We totally spoil our kids during the holiday season.

Because our kids spend a lot of the year living in and out of the hospital, waiting in waiting rooms at specialist appointments and waiting at home for medical supply deliveries, we spoil them rotten at Christmas. I love nothing more than the five of us being snuggled up together in our warm PJs, watching holiday movies and then waking up on Christmas day and watching our three kids’ eyes light up with delight as they open up the gifts that we have carefully and thoughtfully chosen for each of them.

The truth is that they have to be so grown up and mature and patient most of the year that I love watching them be kids at Christmas time. I love that they believe in the magic of Santa Claus and can escape their sometimes harsh reality if only for a few days in December.

4. We try our best to stay out of the hospital in December.

We do whatever we can to keep the kids safe over the holidays because we really prefer celebrating at home instead of a small, stuffy hospital room. We appreciate seeing our family and friends, but when you show up to an event and your child is sick or you are feeling under the weather, we are crushed. I can’t even count the number of events we have had to leave early because someone shows up sick. It’s just not fair. You might have to miss out on one event because you are sick, but for Hartley it could mean a hospital admission, months of recovery or worse.

5. We’re so lucky to have such amazing and supportive relatives.

Our kids are incredibly fortunate. We are so lucky to have two sets of wonderful grandparents and aunts and uncles who make this time of year magical for our kids and for my husband and I, too. You are the most amazing people, and we are so lucky to have you in our lives — not just in December but all year round. You support us, comfort us and you always have our backs.

The Mighty is asking the following: Create a list-style story about the holiday season related to disability, disease or mental illness. It can be lighthearted or more serious — whatever inspires you. Be sure to include an intro for your list. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.