Wow. It’s been a LONG week. I’ve had thoughts for several different posts swirling in my head for days now. I kind of feel like a squirrel sometimes. Maybe more like a drunk squirrel, one who’s running around trying to grab all of the acorns but keeps dropping them. There are so many things constantly flying at me these days. There are just so many different emotions, hormones and awesome things God is constantly doing that I often find it hard to put coherent thoughts together. There are so many things He brings to mind at different times that I want to share, but then as I start writing, I remember something else amazing and change my course. Maybe one day I’ll be able to record them all. Maybe not. In a lot of ways, it feels like trying to count all of the grains of sand on the seashore.
So I’m going to try to share a little bit about this week. I’ve had to buckle down and do A LOT of “adulting” this week. Probably the most since the week that Ellie died. I started the week by ordering my daughter’s grave stone. While I will be glad to have a beautiful marker to memorialize our precious girl, no mother ever wants to have to say that she started the week by ordering her child’s grave stone. Thanks to all of the generous contributions to our gofundme campaign from family, friends and even complete strangers who were touched by our story and generously gave to support us in our time of grief, I was able to order it without any stress on our family finances. That in itself is a HUGE blessing. What a gift!
This week, we also had a meeting with one of the doctors who cared for Ellie in her final hours. That was hard. But we wanted to show our appreciation for how wonderful he had been, and it meant a lot to see how deeply affected he was by our loss and how deeply he cares for his patients. We will always be grateful to him and to all of the medical staff who took such great care of our sweet baby girl. After that meeting, we went to visit with our counselor for the first time since losing Ellie. It was helpful but again, emotional. In between appointments, we ran around trying to gather all of the medical records. We then found out that Ellie’s autopsy was ready. Not only was it ready, but it had actually been ready for almost 3 weeks and no one had bothered to notify us. Here we are waiting to see if we might have any answers or insight into what happened to our little girl, and the judge’s office never bothers to let us know they’ve received the report from the medical examiner. That felt like a big punch in the gut.
An even bigger punch in the gut was having to drive in the pouring rain to the courthouse and walking entirely too long through the rain to get inside and pick up my daughter’s autopsy report. No mother should ever have to do that either, yet here it was happening. I couldn’t help but think that the weather was very fitting for what I was having to do that day. After I brought the report home, I began an agonizing wait to open it until my husband could get home from work and look at it with me. But even as I sat down on the couch to let the tears flow, a dear friend sent me a message to let me know I was on her mind and she was praying for me. I love that God puts us on the hearts of His followers in exactly the times when we most need their prayers. His timing is impeccable.
Finally, the much-anticipated moment arrived. We opened and eagerly read the report hoping for some answers. I had done my best to mentally and emotionally prepare myself to not receive any answers from the report. We knew that was a very strong possibility. What I wasn’t prepared for was having a million more questions raised. It seemed that just about everything in her little body was normal except for two congenital heart defects, one of which we had known about already and had been told it wasn’t a big deal and would likely resolve on its own in time. I felt bereft, like something was horribly lacking. How in the world did they miss that our girl had a fatal heart defect? All along we had suspected something went wrong with her heart, but we assumed it must have been something that couldn’t have been detected. After discussing the results with a few family friends in the medical field, everyone seemed to be in agreement that neither of the heart defects noted by the medical examiner (not even the combination of the two) would have been enough to cause Ellie’s death. So it felt like we were back to square one, having zero answers.
The emotional roller coaster felt like it was almost just too much. We know that we can’t change what happened to Ellie, but of course there is a fear in the unknown as to whether or not whatever it was might affect any future children. As much as I would like to know what went on inside Ellie’s little body that day, I’m ok if we don’t. But I do want to make sure that we take every reasonable action to try and avoid it in the future. I don’t want to live in fear, and even though there will likely be a hefty amount of that next time we bring a baby into this world, I know that it will ultimately come down to trusting God. As we are now painfully aware, none of us are promised tomorrow, and we want to be good shepherds of any children that God may choose to bless us with, for however long He sees fit for them to be here with us on this earth.
The next day, I contacted our pediatrician’s office to let her know we had received a copy of the report and to see if we could set up a time to meet with her and discuss the results. She immediately set aside whatever else she may have had going on that day and asked us to come in that evening. I am so grateful to have been blessed with so many doctors who truly love what they do and who truly care about their patients and their families. After a lengthy discussion with our pediatrician, it became clear that our little Ellie was a unicorn. You may have heard the phrase, “we live in a world of horses, and sometimes you'll find a zebra.” Well, Ellie wasn’t even a zebra. She was a unicorn. That thought makes me smile a little because, as my husband likes to tease, I love anything pink and sparkly. I feel like unicorns fit into that category. Without going into too much scientific detail, it seems that Ellie had some extremely rare issues going on internally with her metabolism. It’s not something commonly checked for because it is so rare. Because her body was unable to regulate things correctly, the most likely scenario is that a chemical imbalance of some kind caused her blood sugar to suddenly plummet and triggered her cardiac arrest. We’ll likely be meeting with a geneticist at some point to see if anything else might be learned about what happened inside her little body that day or if that scenario might possibly happen again with future children. For now, it seems that there was a “perfect storm” of little things that all went wrong in the wrong places at the wrong time. The odds of that happening again are pretty slim as far as we can tell. Even just that bit of knowledge gives me peace and helps my heart feel settled.
I explain all of that to say that it has been an intensely tumultuous week, full of emotions. But through it all, God has been there. He continues to hold us and show Himself faithful in all things. As I was driving to the courthouse to pick up the autopsy report on Wednesday, I was looking around thinking how dreary and depressing it was outside. It completely matched the way my heart felt in that moment. Like how am I supposed to walk in and keep my composure as I ask for a copy of my baby girl’s autopsy report? Nope, that definitely shouldn’t be happening right now. As I sat there on autopilot thinking about it all, this song started playing through the speakers of my car. Surprise, surprise! It was yet another song that the Lord had led me to include in my birthing playlist not so long, yet what somehow feels like a lifetime, ago.
Standing on this mountaintop
Looking just how far we've come
Knowing that for every step
You were with us
Kneeling on this battle ground
Seeing just how much You've done
Knowing every victory
Was Your power in us
Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say
Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful
Kneeling on this battle ground
Seeing just how much You've done
Knowing every victory
Was Your power in us
Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say
Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful
You are faithful, God, You are faithful
Scars and struggles on the way
But with joy our hearts can say
Never once did we ever walk alone
Carried by Your constant grace
Held within Your perfect peace
Never once, no, we never walk alone
Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful
Every step we are breathing in Your grace
Evermore we'll be breathing out Your praise
You are faithful, God, You are faithful
You are faithful, God, You are faithful
You are faithful, God, You are faithful
You are, You are faithful, God, You are faithful
While I wouldn’t exactly call my current circumstance a mountaintop, I can stand here and look at how much God has done. I was sharing with some friends earlier today how as I look back over this year, I can see God’s hand in so many moments, so many situations that were perfectly ordained and orchestrated to prepare us for what we faced on November 13th. Not only has God been faithful to carry us through this unimaginable tragedy, but He has been walking alongside us this whole year in preparation for what was to come. So many people have told me these past few weeks “you’re so strong….” “I don’t know how you’re doing this...” “I’d never be able to handle this situation with so much trust in God….” To them, I say this: Losing a child is not something that anyone chooses. It’s something that has happened TO me. I had no choice in the matter. It’s awful, and I would never recommend it to anyone. However, what I can say is that He gives me what I need when I need it. His mercy and grace have overflowed. It is undeniable. On my own, I simply CAN’T. There are not even words to express how much I CAN’T. The words to that song could not be more true. We know that every victory is His power in us. His peace, His grace, and His power are the ONLY things that enable me to put one foot in front of the other right now.
A word that God has spoken to my heart over and over these past several weeks is GRACE. It’s something I intend to study further and really delve into, but I’d like to share this from John MacArthur on the topic (to read the entire article, click here):
“Grace is a terribly misunderstood word. Defining it succinctly is notoriously difficult. Some of the most detailed theology textbooks do not offer any concise definition of the term. Someone has proposed an acronym: GRACE is God's Riches At Christ's Expense. That's not a bad way to characterize grace, but it is not a sufficient theological definition.
One of the best-known definitions of grace is only three words: God's unmerited favor. A. W. Tozer expanded on that: "Grace is the good pleasure of God that inclines him to bestow benefits on the undeserving." Berkhof is more to the point: grace is "the unmerited operation of God in the heart of man, effected through the agency of the Holy Spirit."
Grace is not merely unmerited favor; it is favor bestowed on sinners who deserve wrath. Showing kindness to a stranger is "unmerited favor"; doing good to one's enemies is more the spirit of grace (Luke 6:27-36).
Grace is not a dormant or abstract quality, but a dynamic, active, working principle: "The grace of God has appeared, bringing salvation…and instructing us" (Titus 2:11-12). It is not some kind of ethereal blessing that lies idle until we appropriate it. Grace is God's sovereign initiative to sinners (Ephesians 1:5-6).
Grace is not a one-time event in the Christian experience. We stand in grace (Romans 5:2). The entire Christian life is driven and empowered by grace: "It is good for the heart to be strengthened by grace, not by foods" (Hebrews 13:9). Peter said we should "grow in the grace and knowledge of our Lord and Savior Jesus Christ" (2 Peter 3:18).
Thus we could properly define grace as the free and benevolent influence of a holy God operating sovereignly in the lives of undeserving sinners.”
My favorite line in this song is, “Every step we are breathing in Your grace, Evermore we'll be breathing out Your praise.” When God pours out his beautiful, amazing grace in such abundance, I don’t know how we can do anything BUT praise Him. Even now in the hardest, most gut-wrenching moments of my life, God is right here with me in the trenches. He is faithful. Never once have I ever walked alone.
"I remember my affliction and my wandering, the bitterness and the gall. I well remember them, and my soul is downcast within me. Yet this I call to mind and therefore I have hope: Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, “The Lord is my portion;
therefore I will wait for him.” The Lord is good to those whose hope is in him, to the one who seeks him; it is good to wait quietly for the salvation of the Lord."
Lamentations 3:19-26
"May God himself, the God of peace, sanctify you through and through. May your whole spirit, soul and body be kept blameless at the coming of our Lord Jesus Christ. The one who calls you is faithful, and he will do it." 1 Thessalonians 5:23-24
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