As I continue to work on Juju’s book, I wanted to share one of my new excerpts. Still making progress one piece at a time…

One of my favorite first quarter moments of Jubilee’s life came during her transfer from Centennial Women’s Hospital to Vanderbilt Children’s Hospital. As 2022 dawned, hopes were high this move would help improve her health thanks to a more structured environment. After all, more screens, new equipment, and seasoned staff could only accelerate the healing.

Yet, for the rest of the family, we needed a spark as well. As they say, desperate times call for desperate measures and in seasons of chaos, you have to take what you can get, even if that special something is animated fiction. Hence, our corporate satisfaction when we watched the new Disney classic, Encanto, for the first time. As if God had orchestrated the timing just for us, the movie centers on a single word with a multitude of meanings, some good, some bittersweet. That word…

…was ‘miracle’.

Before Jubilee, if someone mentioned ‘miracle’ in conversation, Lyssah and I would have responded favorably upon knowing the context. Based on our belief, signs and miracles are still relevant today as authored by a sovereign God. While man often yearns for a miracle on specific terms, the purpose of any heaven meets earth miracle, even if delayed or unforeseen, is perfect. Sure, we may not understand the breadth and scope of the parameters, but I mean, isn’t that one of the fundamental conditions of any miracle in that it could look differently than what we expect? Shouldn’t a miracle be transcendent, mysterious, and challenge us to consider the benevolent hands of an almighty God? Or are we so jealous and zealous to assess the unexplainable with explicable rationale?

Frankly, the reason we sometimes fail to see God in our midst is because we haven’t cultivated the sensitivity required to sense His presence. Like the Sadducees and Jewish priests, we have in our minds a checklist of what must happen in our favor for God to be true to who He says He is. We think His love, goodness, any tangential trait is contingent upon us having proof of Him hearing us when the fact is God hears us through the cries of humble prayer. In other words, how we ask of God reveals what we believe of God. So, when we pray for a specific outcome in ‘miracle or bust’ fashion, we ultimately weaken the hope we crave by making it conditional. And for what? To feel in control? To have the assurance of being on the right path doing all that we can?

Having spent 393 days in the NICU, I can confirm the depths of desperation that flood those halls. What’s less certain is the integrity of their hope or as I like to say, the width of their anticipation. For Lyssah and I, we not only approached each day as if it was Juju’s last but considered the pathways of her life and the ways God could use each outcome. Were our prayers anchored in health and life in abundance? Of course! However, we also knew to pray what Jesus prayed in Gethsemane: Not my will but yours be done. So, while we were in unprecedented territory, striving to care for an afflicted daughter, we knew we could only see a sliver of God’s infinite perspective. This is why trusting God became more effortless the more we kept in a prayerful rhythm. Whenever we caught ourselves wanting God’s will to conform to our requests, we called on God in our weakness recognizing any display of spiritual discipline was for His glory and to His credit.

Back to Encanto. If you’ve seen the movie, you know the story of Mirabel, who in an enchanted home full of gifted family members, is the only ordinary member. Although she strives for her Abuela’s approval, she struggles to find acceptance based on receiving a gift from Casita, the family house and source of the magic. Accordingly, she grows up feeling inferior wondering why the magic passed her by. No question, her grief is no greater captured than in the song, ‘Waiting on a Miracle’. Take a look at these lyrics:

You talk about a heart cry in anguish. Of all the Disney movies in which the protagonist confronts her despair, Encanto arguably takes the top spot.

Moments after this confession, a mystical danger emerges and threatens to eradicate the magic. That’s when Mirabel summons the courage to not only rise above her despair but also restore order and unite divided family members, reminding them the miracle is not the gift but the giftee as part of the overall family journey.

Why is this important? Because the movie confirms an aspect of how God works His wonder. Specifically, a miracle isn’t limited to answered prayer since a miracle is not about what we get over but what we get through. In His Word, God doesn’t promise us we’ll get over everything but He does promise we’ll get through anything. In our case with Jubilee, while our prayers for her to survive the NICU and make it home did not materialize, as our hearts healed, we learned to see her miracle as the impact she made on the thousands of lives, including us, shattering medical expectations and probabilities along the way.

Yet, even if she hadn’t survived past day one, the miracle of her life would have still been clinched. For even as we contended with God in our pain, He enlarged our capacity to sense the sweetness of His nearness, His tender hand holding ours. Were there some days we were beyond angry? Absolutely. There may have been a choice word or two. But in the end, we recognized God as the one who gives purpose, resets our perspective, and redeem fallenness and fallen spirits alike during moments, especially in seasons of grief.

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Even with Mirabel and Abuela reconciling at the end of Encanto, the question still remains for those who feel they lost a miracle with their child’s passing. Surely, I’m not alone when I say it’s easy to feel alone though the Bible speaks to the contrary.

For instance, I believe whole-heartedly in Isaiah 41:10 but struggled to believe it fully after Jubilee’s death.

“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.”

In my mind, the truth had become conditional, like an expired contract or coupon. At one point God was strengthening us, helping us, imparting the supernatural, but not anymore, or so I thought. With no more life to sustain, the upholding felt more like withholding. Deep down, I knew God was still God, but couldn’t connect the dots of a passage once absolute, now more theoretical. At some point, I had to accept my belief process as the primary problem, specifically in God’s upholding hand being a dependent variable.

In our case, God’s ability and capacity to keep Jubilee alive had become a middle wheel teetering on the edge of legalistic perspective. In desperation, we prayed without ceasing and never stopped believing in God’s wonder working power; however, there were some days we felt the fear of what would happen if we stopped. As such, our faith, incomplete as it was, sometimes served as a false catalyst, subconsciously greasing the true wheel of God’s sovereign hand. On days Jubilee was doing well, God had his foot more firmly on the gas petal. On days she was struggling, He may or may not have been waiting for us to press in and request some aspect of His nature to intervene.

Thankfully, the reality of Isaiah 41:10’s conclusion eventually found us to awaken alignment. For the upholdings of God are not subject to words and beliefs of man. By no means, is God in any way driven by our righteousness, given any earthly display is a direct reflection of the divine in the first place. When Isaiah says God will strengthen, help, and uphold you, he’s not suggesting these actions are chained to outcomes but rather the eternal, perpetual essence of His nature. If there is a joy to grab hold of within this verse, it’s the steadfastness of His hand in all situations. As Lys and I wrestle through our grief, we realized the tangibility of God’s constancy is just as much in the heartbreak of disappointment, if not more so, than its prelude. With the Beatitudes in mind, when hearts and heads are heavy-laden, that is when God’s upholdings are at their best so we can sense Jesus saying ‘Come to me’, so we can hear His call.

Does this sound like we’re alone? As if a fear of loneliness has a legitimate place?

I didn’t think so. In no realm are we truly alone, despite what the NICU may tempt us to believe. True, the hospital halls can seem like a secluded place where we feel fight our battles alone. But that’s when we must remember and believe God’s Word. As Point of Grace once sung, when it looks like you’ve lost it all and you haven’t got a prayer, Jesus will still be there. Hence, why we fight the good fight of faith and confess the goodness of God (1 Timothy 6:12) in all situations so those who lack hope will see a glimmer of it.

I suppose that’s one of the key silver linings in Juju’s life. As she fought against all odds, she compelled us to see God amidst the chaos and challenged us to appreciate the trials in real time. Just as light shines brighter in darkness, so does perspective sharpen during adversity. If I’m dealing with greater pain, whether physically, spiritually, or emotionally, so must I desire God to be greater. So must I crave His presence and peace as crooked roads are made straight. And the choice for us can be a net encouragement in perceiving NICU stress as a way to desire God the right way, a purifier of our thirst for ‘more’ of God.

Perhaps this is why I love the redemptive conclusion of Encanto. For starters, we shouldn’t want more of God’s magic to sustain the miracle of health. Rather, we should perceive the miracle as Trinitarian life, life that was, life that is, and life that will be. Trust me, I get how hard it is to accept this truth when our precious candles have burned out. Yet, as dear to our hearts our offspring may be, the miracle goes beyond the flesh and touches the divine in ways that daily inspire. Just as mothers carry the DNA of her children for the rest of her life, so too can we sustain the memory of God’s sustaining us in our darkest hours.

We carry on not because we want to be carried but because the carry is imminent. This is the paradigm shift any NICU parent must embrace when they inevitably question whether God will strengthen them in moments of weakness.

Selah.

Cover graphic creds: Disney Wiki