How We Get By With A Toddler And AS
First, meet my family: I'm Auldyn, the mom, wife, and caregiver of Keegan. Keegan's the dad and husband, and was diagnosed with ankylosing spondylitis 6 years ago. Our daughter, Kaya, is a few days away from turning 18 months old. We live in Philly with our 4 cats, but we're originally from Ohio. I work in tech as a User Experience Designer and Keegan is a stay-at-home artist and artist.
We do a lot!
Every day I go to bed amazed that our family does everything it does. I go to work in downtown Philly, Keegan takes care of Kaya, and somehow dinner is made and we're all in bed at the end of the day. Each day like this doesn't cause a flare-up for Keegan and we aren't completely burnt out.
The key for us is to always have options for easy days and tougher days. The easy days mean Keegan can cook a more complicated dinner or I go out with a friend for a drink after Kaya goes to bed. The rough days mean take out or a frozen pizza. Keegan and I always communicate throughout the day about how we're each doing: What's your fatigue level? What's your pain? Are you burnt out?
How does Keegan take care of Kaya if he's flaring up?
First, he lets me know when he feels a flare-up coming on. During flare-ups each Sunday, we plan 2 "rest days" when I take care of most everything after I get home from work. This includes dinners, getting Kaya to bed, and feeding the cats.
When I'm at work, Keegan has several go-to activities to help him get through the day:
- Laying on the floor. Kaya loves to play when he puts down pillows and blankets. She loves to fall into the pile he makes. Keegan can rest while he's on the floor and more easily play with Kaya. He's not getting up and down several times during a play session.
- Buy easy to prepare meals and keep them in the freezer. When Keegan makes lunch for him and Kaya, if he's exhausted he'll make a healthy frozen meal for lunch. (Usually, this comes from the organic frozen section at the grocery store).
- Be okay with movies and TV shows for short durations. Yes, our child watches TV, but we also use it as an interactive moment. If Keegan's struggling, he'll sit on the couch with her for 20-30 minutes to regain his energy. In that time, they'll talk about what's happening. What color is Cookie Monster? What animal does Moana take with her?
- Put on music and dance. Kaya recently started dancing when she hears music, so Keegan will blast a playlist that he made for her and dance around the living room. Sometimes he notices this gives him a little boost to get to nap time or when I come home from work.
How do you take care of Keegan and Kaya?
The most important tip I can give any caregiver is to prioritize time for self-care. (Just like every other article out there.) It's absolutely true that I cannot take care of them until I've taken care of myself. This includes regular exercise and meditation. I also love to read, which is perfect as it helps with any stress and gets me tired enough for bed without a screen.
Part of taking care of them is also knowing when I'm worrying about things that don't really matter. Does my house have to be perfectly clean right now? Do I need to fold all the laundry or is 1 load enough? All this chaos has put into perspective what matters most in my day: giving myself and my family the love we deserve.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?