Altars of Remembrance
For those who may not know, my college degree is not in communication, sports management, business, or anything of the like…
It’s in Ministry Leadership from Moody Bible Institute.
Growing up, I was dedicated to the notion that I would spend my entire life in vocational ministry and serving others through the local church.
God certainly had other ideas in my mid-20’s though as I was redirected - in about as drastic of a heel turn as you can possibly imagine - to work full-time in fantasy football and NFL media.
Throughout my education and upbringing, though, I've read the Bible numerous times. While I certainly don’t have the ability to recall various verses on command, the themes and teachings are consistently at the forefront of my mind as I seek to emulate Jesus and the way He lived.
Just recently, one of the themes of the Old Testament was brought to my attention in dramatic fashion as my wife and I were out at an appointment for our daughter.
That theme was the use of altars.
For those who are not fully aware of our story, my wife and I found out that we were expecting our third child just over a year ago. We were elated to learn that our family was growing and to move into the phase - and pure and utter chaos - of being a family of five.
However, fairly early on, we were made aware that there were complications with the pregnancy and that we would need to meet with Maternal Fetal Medicine to gain more understanding of what was transpiring.
An ultrasound at 18 weeks is where we were first made aware that our child - who we found out in that appointment was a girl - had multiple complications resulting from a chromosomal abnormality.
This is where we were first made aware that our child had Trisomy 13 and that she had a cleft lip, a cleft palette, a brain difference called holoprosencephaly, a VSD in the heart, and potentially other complications…
If it was a full Trisomy - which means an addition of a full third chromosome where there should only be two - it was highly likely that we would miscarry. Or, if we did make it to delivery, the majority of babies with this chromosomal make-up pass away by the age of one.
This sent us into a period of intense grief and questioning as we tried to grapple with the thought that we potentially wouldn’t be seeing our family grow to five - at least not in the way that every parent wishes.
As we made the announcement and shared our story with people on social media, I distinctly remember the moment of taking this photo.
This was taken on the floor of our boys’ bedroom and I remember weeping after positioning the outfits and taking the photo — grieving for the likely loss that was about to hit us at any moment.
The next several months were filled with appointment…after appointment…after appointment…where we received difficult news and repeated grim prognoses for our baby girl.
An amniocentesis revealed that Payton - a name we had quickly decided on for her - did not have full Trisomy 13, but instead actually had an Unbalanced Translocation of the 10th & 13th Chromosome.
This meant that part of her 13th Chromosome had duplicated and attached itself to Chromosome 10, which had been partially deleted.
There were no documented case studies for her specific chromosomal construction.
None.
She’s ridiculously unique.
Additionally, a cardiology ultrasound at around 23 weeks or so revealed that the VSD in her heart - which was identified in the first ultrasound and could have required immediate surgery when she was born - was completely gone.
There were no traces of that ever existing. Also, another unique finding on the initial ultrasound regarding her heart - which was completely benign but still showed an abnormality - had been completely resolved.
We believe this to be miraculous healing.
While we celebrated the few wins and positive bits of news that we received, it was still a consistent period of waiting for the other shoe to drop. Fearing the moment where we would receive signs that we had suffered a miscarriage. Holding our breath through each ultrasound to find out if something else had been discovered that would change the doctors' outlook.
During this time, through the local Children’s Hospital, we were connected with the Pediatric Palliative Care team. A unit of incredibly gifted people who are there to walk alongside families going through difficult seasons.
I highly encourage you to watch this video of a family that we’ve come to know through the hospital and special needs community in Grand Rapids that shares about their experience with Palliative Care.
About three weeks before we were set to deliver Payton into this world through early induction, we met with the Palliative Care team in their office.
Ultimately, it was a very good meeting that introduced us to several members of their department that would become instrumental pieces in helping us navigate the next several months as Payton was a resident of the NICU.
And, then again, to the PICU for a month after a 10-day stay at home over the holidays.
Fast forward to a few weeks ago - as Payton is now settled in at home and thriving - we had a followup meeting with Palliative Care.
We were not made aware of where the meeting would be taking place, but as we navigated the halls of Helen Devos Children’s Hospital with Payton in her stroller being led back to where we would be gathering, the setting began looking familiar.
Six months ago, my wife and I had made these very same turns and walked through the very same doors. At that time, uncertainty was our constant companion. The unknown was a tenant in our minds that would never leave.
Now, as we were ultimately led into the very same room that we sat in half a year ago…this time with Payton’s bright eyes looking up at us from the stroller, I couldn’t help but become emotional.
There’s time and space for me to share more intimately about what our journey was like in NICU and the several different times where we didn’t know if she was ultimately going to make it.
Just know for right now that it has been the most difficult season of mine - and my wife’s - lives.
And it’s not a close competition.
So, why mention altars at the beginning of this?
Altars served - and do serve - the purpose of remembrance. A physical monument that serves to remind yourself - and future generations - of a moment of significance.
Life moves ridiculously fast. It somehow moves even faster when you have kids. It’s difficult to hang on tight sometimes as life brings you from one stage into the next at light speed.
If I’m being honest, there are moments of Payton being in the NICU that I don’t fully remember until someone brings them up or I see a photo.
…and that wasn’t even three or four months ago as I write this, in some instances.
We can so easily move onto the next phase of life and forget what it felt like to truly be in a season. And, yes, there are a lot of points of being in that season of uncertainty and grief that I don’t want to remember.
I desperately don’t want to feel the pit in my stomach as I prayed to God one afternoon as we had gotten daunting news that if He was going to take her from this earth, to do it quickly so she wouldn’t suffer.
Every part of me wants to bury that feeling and moment in time and never revisit it…
But, if I don’t, I’ll never fully remember God’s goodness in that season.
I’ll never fully remember God’s comfort in that season.
I’ll never fully remember the amount of support and comfort we felt through our community in that season.
Time and time again, throughout Scripture, we read about key figures building altars as a way to acknowledge that they experienced God’s presence.
Physical representations that would serve to remind them of what transpired there.
In today’s culture, I’m not going to bring a pile of stones into my kids’ bedroom, or into the Palliative Care office in downtown Grand Rapids, and kindly ask that no one ever move it.
But those key locations and moments in time are engrained in my mind and memory to serve as a reminder of the road we’ve walked on, how we made it through, and how we felt God’s presence throughout it all.
We can too easily forget - or simply want to put a dread-filled chapter behind us - but it’s important from time to time to remember the journey we’ve walked and the pain and suffering we endure.
There’s goodness in the battle. We just need to train our eyes to see it and remember it.