When and how do I tell others about our diagnosis?
NOTE: Daniel and Kelly speak to this question on Episode #4 of The Abel Speaks Podcast. You can listen on Apple, Spotify, or your app of choice.
When do I begin to tell others about our child’s diagnosis?
We will rarely provide once-size-fits-all responses to questions like these, so this might look different for everybody. With that said, once a family has had time to process and first wrap their minds around what they are facing, we encourage them to open up and begin letting others in.
For starters, the people in your life who you interface with regularly will likely realize that “something is up.” But more than simply getting out in front of that, sharing with our loved ones and extended community allows others to pray for us, encourage us, and check in on us. There were other people in the boat with us, no matter what the future held in store.
For those reasons and more, we experienced and have seen families benefit from sharing soon after receiving your child’s diagnosis. That has led us say “the earlier the better” and recommend that parents open up as quickly as they’re comfortable — at least with those people closest to you. For some parents, it might be that very day. For others, it might be 2-3 weeks later, allowing for some time to see specialists and gather more information on what exactly to communicate.
How do I tell others about our child’s diagnosis?
There are a variety of ways to go about this, so we’d recommend using whatever method of communication feels like the least amount of stress and the least amount of work (phone, email, text, social media, etc).
We initially sent an email to our closest friends and family the day we received Abel’s diagnosis to let them know what was going on, along with specific ways they could be praying for us that first week or two. We’ve also seen people start blogs to efficiently push information out and keep people updated, which is a topic we’ll expand on further next week in Episode #5.
For most of us, the people in our lives can be grouped into “concentric circles” like rings on a target. Different methods of communication may be appropriate for those different rings. For example, it may be most comforting to call your closest loved ones in that closest ring. Then, you may send a group text to your good friends in that next ring, or an email to your church community or your co-workers, and so on. Finally, you may create a social media post so that those looser connections can still know what’s going on in your life.
What and how much should I share?
We recognize and remember that it can feel really vulnerable to share intimate details about your child, perhaps thinking, “I don’t want people to think less of my baby due to his/her diagnosis.” In terms of how much information to include, there’s a lot of freedom in sharing a little or sharing a lot.
In any scenario, there was something powerful and healthy about sitting and synthesizing everything we were processing — condensing and putting into “bullets” what we’d spent hours and hours swimming around in. We truly found that it made things feel less scary and overwhelming when we were able to put words to what we were thinking and feeling. This was beneficial for us in terms of explaining Abel’s diagnosis — here’s what we saw, here’s what that means, the implications and the outlook, etc — but regardless of how much depth you go into medically, we found it incredibly valuable to share how we were doing personally, emotionally, and spiritually.
The reality is that your loved ones will be wondering, “So how are you guys doing? Where are you at right now?” It can feel like an impossible question to answer, but it’s possible and valuable to speak to.
You can be brief and you can be honest. You can share the truth and hope you are clinging to, without sprinting to any silver linings or spiritual platitudes. Just a quick, personal update.
For example, “We are devastated, and this is not what we ever expected. We are confused and scared, but we love this child with our whole hearts. We don’t know what story God is writing here, so we’re taking things a day at a time. We feel like we’re in good hands as we learn more about our baby in the weeks ahead. In the meantime, we’d love it if you could pray for this, and this, and that.”
You can share any aspects that have been particularly difficult for you to process, or upcoming appointments that are looming large, or other specific areas where you’d love to request prayer — putting words on these things is really hard, but really good to bring into the light.
And what if we really don’t have a strong support network?
For some without that close circle of community, this whole discussion may feel far more daunting and intimidating than it does relieving and constructive.
If that’s where you find yourself, please know that is one of the fundamental reasons that Abel Speaks exists… to come alongside and support families like yours, so that no parent ever feels like they have to walk this journey alone. Additionally, we hear time after time how impactful it is to connect with other couples who have walked the same road, who truly “get it” in a season that can otherwise feel so isolating.
If Abel Speaks can play that sort of role for you, we do hope that you’ll reach out to us today by sending an email to firstname.lastname@example.org — we look forward to meeting you and serving you in every way we possibly can.