Our life has been good lately. My medically complex daughter has been stable. Our family relationships are secure and comfortable. I even got to take a short weekend trip away… So why do I still feel so unsettled?
If living through this medically complex life alongside our children has taught us one thing, it’s that things can go wrong when you least expect it. And, in addition to that, the unlikely scenarios, the 1% chances, the stuff that only ever happens to “other people,” those are the experiences we’re living every day.
We’re so used to expecting the worst, it can be difficult to appreciate the moments that are actually good.
I remember one trip that we took to visit my kid’s grandparents. My medically complex daughter was only a year old at the time. We were looking forward to a weekend with family, where we could have a little bit of help and see some friendly faces after a year of struggling through medically complex caregiving.
The month before, my daughter had been hospitalized for several days due to RSV, but in the time since, she’d recovered well. She was happy, playing, and had finally gotten over her congestion. Or so we thought.
The night before we were scheduled to leave, we woke up in the middle of the night to my daughter’s incessant coughing and spitting up thick mucus. We gave her Tylenol, suction, nebulizer treatments, postural drainage positioning, and chest percussion. Nothing helped for long. We put her in the car, drove home, and took her to the hospital for what ended up being a four day inpatient stay for pneumonia.
It was early enough in our caregiving journey that I hadn’t even seen it coming. I didn’t sleep peacefully for years after that experience.
We’ve learned so much in the years since. For one, we’ve been through many more health events that devolved quickly, enough that we’re extra cautious at the hint of a sniffle now. We’re better equipped to handle situations before they become emergent. But the repeated trauma has taken its toll too.
I stay awake at night wondering when the next shoe will drop. I lose track of my thoughts during the day and spiral downward wondering how we’ll avoid our next worst case scenario. I try to relax and enjoy the quiet moments of my life, but find myself unable to be present as I try to stave off the “what ifs” that haunt us.
I’ll be transparent and admit that I have a diagnosed anxiety disorder which exacerbates these feelings. But out of curiosity, I ran a poll yesterday on Instagram asking about this very phenomenon, and over 90% on respondents said they also feel this way either some or most of the time.
So… what can we do?
Well, we’re not mental health professionals here… But we’ve been around the block a time or two, and this is what has helped us the most at Caffeinated Caregivers.
We can acknowledge and give space to our nervous feelings. There’s no use in beating ourselves up about being overly negative or cautious. We’ve been conditioned to have those feelings from years of medical trauma, lack of support, and uncertainty in our lives. But remembering where those feelings come from, and that they’re a reflection of our past and not necessarily our future could help. Yes, difficult experiences are probably ahead of us at some point, but there is probably good waiting for us too.
We can talk it out. In any way you want. It can be a vent sesh, a good cry, an logical play-by-play, an interpretive dance, whatever works for you! Just vocalizing or typing out your feelings to a trusted friend or partner can be so cathartic.
We can do something for ourselves. And it can be anything. It could be a 15 minute walk, a tasty snack, or maybe even just laying motionless on the floor for a minute. It just has to be something you WANT to do, and ideally something that’ll help you to reconnect with the present. We’re all short on time as medically complex caregivers, but we can’t regulate without taking at least a few short moments to ourselves.
And we can snuggle our medically complex kiddos, or connect with them in whatever way they prefer. My daughter loves it when we play with her crinkly paper and sing songs together. Whatever you can do to have a little moment of joy with your child. It can be amazingly healing.
So, the next time you’re feeling like things are going just a little too well, try to keep these things in mind… And also remember: You’re not alone in these feelings <3
Until next time, caregivers <3
