NOTE: Daniel and Kelly speak to this question on Episode #1 of The Abel Speaks Podcast. You can listen on Apple, Spotify, or your app of choice.

Why is this the question we’re going to tackle first on the podcast?

We are going to start with one of the first and most foundational questions that comes up when we begin walking with a family who has received a life-limiting diagnosis for their child. The question is, “How do I navigate all of these unknowns?” I’ve received the diagnosis, I know my child will be born in due time, and I know there are a wide range of outcomes. But for now, I feel in this holding pattern. I wait…

When families reach out to us and they’re explaining how their journey has looked so far, they often communicate that they’re struggling with what feels like an impossibly long season of waiting. There are so many questions and so many unknowns, yet so few answers for what to expect following their child’s birth.

Why do we have such a hard time in the ‘in between’?

It’s fair to say that, mentally and emotionally, this season of waiting in the unknowns while pregnant can be the most difficult part of the journey. If we dig deep enough, at the root of this struggle is our desire for control. We want to know and be able to anticipate outcomes in our lives. We want to be able to plan accordingly. And this is a journey that just doesn’t allow for that.

In our contemporary world, this may be one of the first times that people are put in a position when we can literally do nothing to change our circumstances. As humans, this grates against our natural desires and leaves us feeling helpless and unsure of how proceed.

Consider how frustrated we become when we get stuck in traffic. “I have somewhere I’m trying to go on a certain time table, and something outside of my control is blocking and thwarting that plan.” We grow anxious, irritable, and angry. Translating this to matters of far greater significance, it’s not surprising that we would experience those emotions at unprecedented levels.

As we reflect back on that season, what by-products did we experience in our personal lives?

For us, and what we’ve seen in other families, once we acknowledge and accept our lack of control, the only thing left to do is lean into the Lord and trust in Him in ways that many of us never really have to. We have become accustomed to being in the drivers seat of our own lives, so as believers, the Lord used Abel’s life to teach us to rest in Him and depend on Him in ways we never did prior to walking through deep suffering.

Abel taught us how to take life one day (and one hour) at a time, and depend upon the Lord in the way we were created and designed to do. Sadly, we aren’t prone to embrace that reality until we are forced to. And yet, strange as it sounds, we see this as one of the greatest gifts the Lord revealed to us through our son’s life.

He is faithful to provide, but just like we see in Exodus, He often gives us manna one day at a time. As Jesus prayed, “give me this day our daily bread.” As much as we would like a week or a month’s worth in one fell swoop, the Lord asks us to come to Him step by step. This posture of humility and dependence rubs up against what we’re used to this day in age where we can tangibly provide for ourselves in so many ways.

Ironically and paradoxically, it was through recognizing our own limitations and surrendering our desire for control that we actually came to experience the freedom, the relief, and the peace we were so desperately seeking. Embracing that reality was beautifully redemptive aspect of an incredibly difficult season.

Finally and tangibly, what were things we chose to do in the waiting and the unknown that can help parents cherish and celebrate their child’s life?

There is an ever-present tension between joy and sorrow. Our child is alive today, but we also know what challenges lie ahead given the implications of his/her diagnosis. What we tried to embrace was cherishing and celebrating Abel’s life one day at a time.

We tried to make memories with him while he was with us in the womb. Whether it’s taking photos to commemorate his first IMAX experience, or his (mom’s) first ice cream cone, we were determined to capture and celebrate those seemingly mundane moments. And as we do, the mundane became incredibly meaningful as we included our child in the daily “tasks” of life. Getting to look back on those little memories brings a smile to our faces as we remember that season we had together as a family. Time became sacred and nothing was taken for granted.

In conclusion:

  • This season is incredibly difficult because it grates against our desire and ability to be in control of our circumstances.
  • We are designed for dependence on the Lord, and it was through recognizing our own limitations and surrendering our desire for control that we actually came to experience the freedom, relief, and peace we were so desperately seeking.
  • It’s possible not to simply endure this season, but to truly enjoy it. We can choose to make memories with our children moment by moment and day by day. Every parent can choose to cherish their child’s life and have hope in the midst of sorrow… even in the waiting, and even in the unknown.

-Daniel & Kelly