NOTE: Daniel and Kelly speak to this question on Episode #5 of The Abel Speaks Podcast. You can listen on Apple, Spotify, or your app of choice.

In our last post, we talked about ways to begin letting people in on that news of your child’s diagnosis and the implications of it. Now, we’ll talk more about ongoing correspondence with the tribe of people who love you and want to care for you on the long road ahead.  This is a tremendous blessing, but it can also carry with it some logistical challenges, so it’s common for the parents we meet with to ask us about this.

What are some recommended ways to keep people updated?

For any parent walking through a life-limiting diagnosis for their child, the capacity for interaction and communication will likely be much lower than what friends and family have been accustomed to.

With that in mind, we started a blog so that we could write everything down in one place at one time. Then, we could send out that new blog post to all of our friends and family, as well as post it on social media. “Hey friends, we here’s the link for a new blog post if you’d like to check it out.”

You may be thinking, “Well, rather than sending a link, why wouldn’t you just write whatever you put in that blog post into the body of an email?” You can totally do that if you’d prefer, crafting longer emails to a consistent recurring thread. We’ve also seen people just solely leverage social media pages to keep large groups of people updated.

Personally, more than simply capturing and communicating updates in real time, we love getting to look back at the blog posts we wrote throughout our season with Abel as it’s all archived and easily accessible online to this day. For us, is like a walk down memory lane, chronicling all that we were praying, processing, and learning from Abel’s life. (Note: we are not website gurus and had never created a blog before. There are sites like Wix, Squarespace and WordPress that are designed to be very user friendly. It does not have to look amazing and can be really simple to set up, so don’t let that be a huge barrier.)

There’s really no “wrong way” to go about it. Whatever method is preferable for your family, the goal is that you won’t feel fatigued or overwhelmed by sending lots of different messages to lots of different people. Pick an easy and effective way to communicate to a larger group of people with very few moving parts.

What sort of information should we include in these updates?

(1) For starters, we would certainly share how Abel was doing. We’d share what we had seen or learned from the most recent sonograms or appointments, and request any specific ways they they could pray for Abel and/or Kelly in the medical sense.

(2) But then, we would also try to share anything that the Lord was teaching us in that season — personal reflections that we had, how we were doing emotionally or spiritually, what we were wrestling with, and so on. As we shared in Episode 4, the act of sitting down to sift through and process our thoughts & feelings was an incredibly healthy habit in and of itself.

(3) Finally, we were able to share things that friends and family had done for us that really blessed us, letting people know how we felt most encouraged and examples of what that could look like. This will be a whole other episode and conversation, but there will be the inevitable people who are genuinely trying to be helpful, but God bless ’em, it’s just not very helpful. The reality is that as your people truly want to care for you, they may not always know how.

An illustration we undoubtedly stole from somewhere is the idea of “leaving breadcrumbs” for people. If you have this blessing of people in your corner, there are things we can do to “help them help you.” Some parents may feel hesitant to give feedback of any kind out of fear of offending a friend or loved one, but we’ve seen that it can benefit everyone involved to take those opportunities to share and communicate what has and hasn’t made you feel most comforted and cared for.

  • Very practically, starting any sentence with, “Hey, we’re learning that…” and then filling in the blank can be helpful language. Rather than rebuking or calling somebody out for being a poor comforter, there’s a way to address a broader audience and simply say, “Hey, we’re learning that this really comforts us… we’re learning that this, well, not as much… we’re learning that have a much lower capacity here…”
  • We’d also recommend taking the opportunity to set expectations in the realms of communication & correspondence. For example, “Hey, we’re learning that our social capacity has gone down… if you’ve sent us a message, a text, a prayer and we just hit the ‘like’ button without writing anything back, or we haven’t even replied to it, that does not mean we’re ungrateful… we’re also learning that short, simple text messages are more digestible right now. You can even send an emoji of a heart, or prayer hands, or whatever you want to do, and trust that those things communicate plenty and mean a ton to us.”

Everybody wins!

Once we began letting our people know where we were at through blogging, we discovered that sending those updates proactively and electronically paid huge dividends when engaging socially.

It was so encouraging to see that people really were tracking with us and reading along, and it was so much easier socially than having to share all of it on the spot, in-person, over and over. Allowing our community to be collectively informed served us far better than trying to relay those updates repeatedly in lots of one-off conversations. It also gave our loved ones time to read and process the latest information ahead of time, freeing them from having to comprehend and respond to things on the spot.

Most importantly (if you know, you know): it greatly minimized the super thoughtful but super difficult question, “How are you guys? How’s Abel doing?” Rather than attempting to capture and convey the hundreds of relevant sentiments in a 2-minute or even 10-minute exchange, we’d see friends in public who were up to speed and would be able to say, “Oh, I read this or that on the blog.” If they did have questions, they’d be far more direct and specific, which was really helpful for us.

In summary: We’d recommend picking an easy and effective way to communicate to a larger group of people with very few moving parts. Sending out updates in the form of blog posts allowed us to do that, with the added benefit of capturing & chronicling our season with our son in one online location. In those posts, we would typically share medical updates, (2) personal reflections, and (3) real-time feedback about how to best comfort and care for us at that time. We found that sending those updates proactively and electronically set everyone up for success and paid huge dividends with our support network.

-Daniel & Kelly