I Need My Family and Friends to Help Include My Medically Fragile Child This Holiday Season

Holidays can be both wonderful and stressful for any family, but this is especially true when you’re trying to make the best of the holidays for your family and medically fragile child. It can feel, well, bah hum bug.

Winter season alone can be difficult to get through for some of us with medically fragile kids. The increase of time spent inside coupled with more viruses — and again, bah hum bug. Add to that the decisions of where to go and figuring out how the logistics will work for your child, and again, it can feel like bah hum bug. It’s enough to completely make anyone feel overwhelmed.

I used to love the holidays. I envisioned things to be so much different when thinking of Christmas with my two boys. Each year has seemed to get harder with trying to figure everything out and make the best choices for everyone.

What one boy can do and experience just isn’t the same as what the other can. It’s a fact of our lives. That doesn’t make the hard choices during the holidays any easier. Giving the neurotypical child what you want and what they need, while at the same time figuring out how to include your child with a disability and make it all happen for everyone isn’t easy. Trust me.

I realize the challenges of having a medically fragile, autistic, regimented and non-stop 8-year-old running around in a busy and exciting environment such as a holiday gathering. Trust me. But they deserve to enjoy the holidays as well, like any other child, and my family deserves to enjoy the holidays with all of us together. It would be nice to hear that it’s upsetting for others when he can’t be included, or for others to make the effort and come up with some new ideas to include him.

I never wanted to be a person that expects others to sacrifice their own comfort for mine. It’s difficult to need to ask your family to make accommodations, especially after asking and being turned down a few times. Isn’t family supposed to see and understand more than others?

This might seem like a completely negative narrative from a bitter person, but believe me, it’s not. What this is, is an honest, heartfelt and difficult sharing of true and raw feelings that I know others experience. It’s just so rarely expressed, oftentimes for fear of sounding like a negative narrative from a bitter person.

Well here I am, putting myself out there and hoping others in my situation see that they are not alone. It’s my attempt to touch even a few family members and hope that they try and look at the bigger picture. The bigger picture that a holiday not being perfect in their eyes, might be perfect in someone else’s eyes. The giving of themselves to drive a little further or what have you, is a momentary inconvenience to them, but an extraordinary act of kindness to a family caring for a child with a disability.

You see, holidays can be overwhelming and busy, and it’s hard to fit everything in to make it as close to perfect for any of us. The thing is, things continue to be incredibly difficult for those of us with medically complex kids, all year long.

We also want a chance to be included and connect at the holidays.

It means more than you realize.

Go the extra mile because it’s far harder for us to be in a car for long drives. Make the extra dish that we can’t because of fitting in that extra appointment or infusion before the big day. Deal with the extra noise and behavior corrections that we deal with everyday. Include us, help us, make it easier for us. Let us have a good holiday too. It’s a big kindness and giving-natured thing to do. Isn’t that what the holiday season is about?

I want to love and enjoy the holidays again.

This season, think about who in your extended family might need an extra hand to make that happen.

Be a shining, helping and inclusive hand, and help squash the “bah hum bugs” for a family like mine.