If your child was recently diagnosed with a chronic or complex illness, I want to convey my support. Like the famous quote says: “All change is loss, and loss must be mourned,” but for me to say that I’m sorry or offer up condolences doesn’t feel quite right. You may have to mourn a version of “normal” and some of the plans you made, but you will never regret the role of caregiver, and while it’s certainly difficult, there will be joy, too.
Along with my support from afar, I can offer a few helpful tips I’ve gathered from my experience as a caregiver. Again, “tips” doesn’t seem like the perfect word—It somehow makes the advice seem simple; I assure you, nothing is ever simple, especially when you’re a parent. What these tips are is sincere, and I truly believe they can help.
You have a lot to learn and adjust to in your new role as a caregiver. You may need to learn some complex new medical skills that you never imagined yourself having to do. Remind yourself, like a mantra, that this is a marathon, not a sprint. Seriously, tell yourself this regularly out loud and in your head. You will need reminding when the scared part of your brain convinces you that you need to know everything right away.
The stakes of your new job are higher than most people will ever be able to understand; however, in order to maintain strength and stamina, you have to show yourself compassion. You will provide the best care and support when you feel loved and supported by yourself. Seek peace and self-compassion in small moments—For example, whenever you can, take a quick walk outside, drink a cup of tea, or call someone you love.
Your self-made “tribe” should offer solidarity, support, and a soft place to land. Find people online and in-person who fit your personality, situation, schedule, and needs. These may be people who have been in your life for a while—like that one friend you’ve always called when you’re at the end of your rope—or they may be new and ever-changing (i.e., Facebook groups and local support groups).
Every single thing you feel, every fleeting emotion or stubborn fear, is valid. Not only that, but whatever those feelings are (grief, anger, sadness, jealousy, etc.), they don’t need an apology. You don’t owe that, or an explanation, to anyone, especially not to people who simply don’t understand due to lack of experience. Allow yourself to feel all of it. It may be painful at times, but it’s the only way to live.
This tip is a little more practical, but you won’t regret it. Personally, it helps me cope to have calendars, medical charts, lists of medications/dosages, etc. Those things, as well as important emergency contact information, should be on you at all times. We’re fallible; our memories will fail us time and time again (especially in reaction to stress and lack of sleep). That’s why it’s great to have documentation. It takes some work, but it will put your mind at ease.
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