I should have been excited, but I was stressed and tired from the past year. We had completed a six-week stint in the special infant care clinic after having a premature child. Weekly follow-up appointments and therapies were piling up. I was balancing the health needs of one medically complex child with the typical needs of an older sibling, who was still just a baby herself. I was drained, but I didn’t want that to stop us from enjoying the holidays, like we always had in the past, with good food and family. As we piled into the car a few days before Thanksgiving, I offered to drive, knowing I wouldn’t want to do it once it got dark. About half an hour in, I felt a familiar fog envelop my brain. My vision blurred, and my eyelids felt incredibly heavy. I made it another ten minutes before admitting I needed to switch. I had made it forty minutes out of a ten-hour drive. My husband drove the rest of the way.
I’d like to say the fog lifted at some point, but exhaustion followed me every waking moment of our visit up North. It was with me at 3:45 am when my child woke, screaming and arching in pain. It was with me when relatives chatted and visited. I slapped a smile on my face and made jovial conversation, while holding and rocking a fussy baby and balancing the needs of a toddler tugging at my sweater. The fog remained heavy during bedtime when my husband and I tag-teamed with a toddler that was upset at the unfamiliar environment, and an infant that needed to be bottle fed just perfectly so he wouldn’t choke and sputter. It was with me when we ate our holiday meal, played outside with the kids, and finally said our goodbyes, before getting back in the car for the dreadfully long trip home. I didn’t even bother offering to drive on the way back. I knew I didn’t have it in me.
It was on the car ride back that my husband and I agreed, no more long holiday trips. If people wanted to see us, they could visit us. This admission of our limitations, while painful, was also freeing. Once we put down hard boundaries for ourselves, so much pressure was released. It wasn’t just stressful for the parents to make these huge efforts to travel, it was stressful for our children.
As the years passed, we began to recognize all the places in which we had to limit ourselves to keep our lives manageable. It wasn’t just during the holidays, but it was during the weekends when we couldn’t leave the house after 4:00 pm, or it was during the week when only one of us could go for a walk while the other stayed back to watch the kids, instead of all going at the same time.
While these changes to our routines and traditions felt big, and were upsetting at the time, two things happened.
1. I reframed my thinking enough to realize these weren’t limitations, they were necessary accommodations. Accommodations for our family and our children that we ALL needed, to keep everyone happy and healthy.
2. I learned that those who loved us would accommodate us. It wasn’t long before my in-laws asked us what location would be best for our family, and when. They show us every year how much they love us, by making sure our holidays stay as simple as possible, while still getting to be with family.
As individuals, it’s hard to accept large changes in routine because it feels like a self-sacrifice that you aren’t ready to part with. But as a parent, it’s what you do to help your child. Think about what the accommodation means to your child and what you are giving you child. Here is what you are doing when you accommodate your child during the holiday season and beyond:
1. You are creating joyful memories. – Instead of stressful car trips and uncomfortable sleep environments, you are creating an ambiance of fun and joy. It is something they will feel and remember every time the holidays come around.
2. You are teaching them self-care and how to advocate for their needs. If you make accommodations for them, as they grow, and if they can communicate their needs, they will know just how to advocate for themselves when you aren’t able to be there to do it, whether it be at school, in an adult care facility, or just with another parent or family member.
3. You are showing them that your love is unconditional. There is no greater way to show a child you love them, than by doing things for them without an expectation of anything in return. It is unbelievably hard to put our own needs aside, but it is sometimes necessary to prioritize what is most important in life. And with our families, with kids with disabilities, it’s keeping things simple and stress-free.
4. You are bringing peace and happiness to a soul that otherwise might not be able to find it for themselves. You have made the ultimate sacrifice to raise a child, even when they don’t have high support needs. But, when a child has high support needs, they need a constant advocate, and you will know you are doing it right, when your child is happy. When you do that, they will be eternally grateful, even if they can’t communicate it to you directly. They will show it to you in the ways that they can. You will just know.
So, when the holidays or other events or excursions come around and you have to set limits, just remember: those that love you will accommodate you, and you are doing a wonderful job at taking care of your family and protecting your child, their needs, and your own peace of mind. The joy that your children will feel looking back will be immense, because you gave that to them. Happy Holidays and a peaceful new year!
ABOUT THE AUTHOR:
Corey Briskey, MPH is a mom of two wonderful children, one of which is medically complex and has disabilities. Corey is a writer, blogger, and a neurodiversity-affirming advocate for children with disabilities and their families. Corey has written a memoir, not yet published, centered around raising a child with disabilities, among the crushing pressures of society. She has a Master’s degree in public health from the University of Buffalo and a bachelor’s degree in psychology from The College at Brockport.
You can follow Corey on Instagram (@coreybriskey) or view her website and subscribe to her blog at coreybriskey.com
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