Surviving the New Normal
It feels pretentious to assign that title to these words. I’m barely crawling my own way out of the dark tunnel of the first year myself. Although as I do, I’m realizing why many rare disease families reference “the first year” as its own distinct chapter. It’s a unique web of paralyzing grief, physical and emotional demands, and a seemingly insurmountable learning curve that somehow gives way to a “new normal.” Somehow the logistical juggling, emotional rollercoaster, and broken heart become a new sense of normal. It feels surreal that I’m writing this on the other side of our first year. I connect with newly diagnosed families, and I realize I’m no longer the newest recruit to this dreadful club.
As one mama barely finding my feet underneath me, I’m compelled to offer a few raw reflections for a new member of the club. Even if it’s not rare disease, it may be special needs, sick children, aging parents, broken marriages, or mental health battles.
Take a deep breath. You are not alone.
Simplify your communication.
Find a way to relay information without having to retell the same thing too many times, whether via emails, social media or a trusted friend that can relay the information. I found it helpful to rehearse a few sentences to explain the diagnosis. Write it, say it, and share it with your friends and family who will need help finding their own words to explain it too. You’ll have friends that begin to understand the disease almost as well as you do, keep those around. Some people will take the entire year to start to understand it, offer grace.
Connect with families walking a similar journey.
We are better together. Find your people. Seek them out. Ask questions.
The vast world of the Internet gives us the ability to connect like never before. My journey became more manageable once I knew I had people to call on that had walked the road before me.
Embrace your support system.
You will be surprised by some of the people who will enter into your story wholeheartedly and surprised by some that do not. Some of those seemingly closest to you may have the hardest time figuring out how to play a role in the story. And yet, some of the acquaintances on the fringe may jump in boldly in ways you never expected. Grace will cover the disappointment and open hands will accept the new faithful army surrounding you. I have had to learn to ask and accept help, and sometimes from new or unexpecting persons. The blessing of leaning into new relationships has been surprising. In a season of “no margin,” I’m constantly surprised that I have time to cultivate new relationships despite the demands of this journey.
Accept small talk is difficult.
Your mind is on 100 things all the time. It really bothered me at first how I felt so incapable of carrying a ‘typical’ conversation about something other than the disease or the new pace of life in which we had been shoved into, but it slowly got easier. I don’t think the small talk got any easier, but I’m not nearly as bothered by how out-of-place I may feel in the midst of certain conversations.
Let others help but learn to say “no” when needed.
I offer this advice, and I’m terrible at it. It’s often hard to come up with an answer to the question “How can I help?” Have a friend field a lot of those requests if you can. Meals, gift cards, babysitting, etc. are all helpful. They can also seem overwhelming. Say “yes” when someone offers something helpful. Don’t be afraid to say “no” when something is more of a burden than blessing. This can hinge entirely on the given day or hour, and you can always defer an offer to a later date. Again, I’m still learning this.
Accept the grief-denial balancing act.
It’s okay to sit in the deepest grief, and it’s equally okay to live in a denial somedays. It’s okay to let busyness be a distraction. I’ve come to realize that sometimes the logistics won’t happen unless I’m in “denial mode.” But as someone more bent toward the denial camp, I would urge you to not let too much time pass between a reality check and good cry.
Disclaimer: I’m not a ‘cryer.’ I want to be one. I think they’re healthier in a lot of ways. (Maybe I’ll expound on that soon enough). But I have a dying child, and I often have to force myself to cry. The first year requires a lot of practical, logistical juggling (and I had a newborn). I was in total “go mode” in dealing with the disease, but something powerful happens when your heart catches up to reality.
Grieve with others but set boundaries.
There’s a time and space for embracing the grief of those around you, and it can be a beautiful thing. But your job isn’t to run interference for everyone else’s coping mechanisms either. Extended family may be the most delicate to navigate, and I dare say one of the most common threads mentioned among rare disease families. I think everyone in the family is sinking in their own grief, and it’s complicated.
Remind yourself what you know, even if you don’t feel it.
It feels like you will quite literally break under the weight of grief and exhaustion most days. Some days are darker than others. In the darkest days, I will open the Word and write a verse in my journal. I often can’t even verbally speak them, but there is something powerful about writing and claiming Truth even when we struggle to believe it. I have friends who aren’t believers, and they find hope in a personal mantra or self-talk. It’s powerful to meditate on the strength and love of those surrounding you. You are brave. You are strong. You will somehow endure because of that sweet loved one for which you’re fighting.
Look outside your own story.
Even though the journey is isolating, you’ll be surprised by the opportunities that come your way to enter into someone else’s story. There’s something powerful that happens when you serve someone else in the midst of your own hurting. Over this year, I’ve learned grief attracts grief. There’s something sacred and safe about bringing heartache to the feet of someone you know is also hurting. It’s a club we would never acknowledge, but it exists. You will have the opportunity to love someone despite your own hurt. I implore you to do so - for that person and yourself.
Offer grace. Accept grace.
Give it freely to yourself and others navigating the journey with you. I go to bed every single night feeling like there is more left to do. I over-analyze and self-critique. I get tired and then testy with the ones I love most. I’m navigating waters I would never have dreamed of entering. I’m doing the best I can and chances are those around me are doing the best they can as well. The journey is richer if I can offer grace to myself and those around me.
Additional Notes & Resources:
- Counseling: I can’t recommend it enough. Fight to find the time for it, and don't be afraid to find the right fit for you.
- Books: I plan to expand on some of these soon, but these are a few books I read this year:
- Shattered Dreams by Larry Crabb
- The Life We Never Expected by Andrew Wilson & Rachel Wilson
- The Hardest Peace by Kara Tippets
- Calmer: Medical Events with Cognitively Impaired Children by Melissa Hogan
- Voxer App: You will spend more time in the car to and from appointments than you ever dreamed possible. Voxer is an app that works as a "walkie talkie" or “voice messaging” to connect with other on-the-go families.