One month

Tomorrow will be one month that Alvin has been with us. One month of celebrating each time we run out of diapers, of smiling across the table at the sound of both boys crying at once, of little flutters of relief every time I lay my hand on his chest and see that yes, he is still breathing.

Everyone asks, their voices swelling with kindness and compassion, how I’m feeling. I truly and honestly don’t have the words. Joy and fear and amazement and frustration and sadness and exhaustion and humility and guilt are so intertwined and I don’t have the capacity or the desire right now to sort through them.

A few people have wondered, although acknowledging that we must be thankful for the time with him, “doesn’t this make things harder, now that you’re actually getting to know him?”

I don’t know whether it is harder or not. It feels like unexpectedly having a series of warm, mild spring days when you thought all that was ahead was a long, gray winter. When daffodils and hyacinths are starting to bloom and you stare at them with wonder and delight while at the same time worrying that the weather will change again and the frost will be too much for them. When you’re not sure if you should get used to wearing sandals and sundresses or keep your heavy sweaters close by. When you know how hard it will be if the temperature suddenly drops again, but the sun on your face and the warm grass under your feet feel so good you want to believe it will last forever.

I look at Al’s face as I hold him, his nose so much like his brother’s, his full head of dark hair so different from him. He is completely helpless. And, painfully, so am I. I want to protect, predict, and guarantee. But when I see his purple toenails and feel the irregularity of his breathing, I’m reminded how hard his little heart is working to pump oxygenated blood through his body, and wonder how long it can sustain him.

We pray for healing. We know our God is powerful. We have read the stories. Stories of waters parting, lions’ mouths closing, leprosy and blindness and lame limbs and chronic bleeding being healed. Stories of death itself being overwhelmed and conquered. But we don’t see this happening in our neighborhoods or our city. When we tell Alvin’s doctors we are praying for a miracle, their smiles are tender. I feel like I might as well have told them that I believe in fairies. Someone reminded me of the verse from 1 Corinthians 1:27: “Instead, God chose things the world considers foolish in order to shame those who think they are wise. And he chose things that are powerless to shame those who are powerful.” I’m pretty sure that in the minds of the fetal cardiologists at the Children’s Hospital of Philadelphia, there is nothing more foolish than gathering a group of people to pray for an infant with hypoplastic left heart syndrome and a highly restrictive atrial septal defect who is considered a poor candidate for the staged palliative surgeries and is at home with hospice care.

And yet we pray anyways. When I pray with others, begging for Alvin’s life, I realize that it is no longer only me who is vulnerable before God. Everyone who enters into this mix of joy and desperation with us is opening themselves up to great disappointment. It is far easier to keep an emotional distance than to come before God, knowing He is “good” (whatever that actually means, and I don’t mean that flippantly), yet knowing that He might not give us what we’re asking for. Am I prepared to still love and obey God even if I experience that level of devastation? How dreadful, yet at the same time, what an act of worship. It seems to me to be a tiny drop drawn from the same deep well of unconditional love that we experience from our Lord every day.

Hope is both beautiful and exhausting. Sometimes choosing hope feels like keeping your muscles flexed, like continuing to run instead of walking. Maybe there will be a time for tears and grief. But not now. I’m so grateful to the friends who say they can’t wait to meet Alvin next week, or babysit him next month, or take pictures of him when he’s one year old. Thanks for being hopeful with us. For willing to be foolish with us. If there comes a time to grieve, please grieve with us, and continue to love Jesus with us. But for now, please continue to ask.

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