Hello, mama of that precious, medically-fragile child you have in your arms. Yes, you! The one sitting right in front of me who feels unseen and weighted down by circumstances out of your control. But I see you, darling one.

I know you. . .

Because I am you. . .

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I know all the ”feels” of your exhaustion. I’ve been there – staying up late at night—afraid—while the rest of your family sleeps—watching that precious one take another breath.
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I know all the ”feels” of the succumbing fear that goes along with parenting a child with a condition that any moment could be deadly. I’ve been there as I thought I was losing my own babe in my arms three times.
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I know all the ”feels” of the scary specialists appointments where they speak of your child more as a condition than a whole person comprised of body, soul, and mind. And when you need more answers, they look at you as if you are taking up too much time.
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I know all the ”feels” of trying to hold a very scared babe still in your arms as medical tests poke, prod, and hurt. And I know the depth of pain that a mama’s heart experiences simultaneously.
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I know all the ”feels” of anxiety while entrusting the care of that babe to other humans for a few hours while leaving to take care of life, work, and yourself for a few hours—always feeling the weight of guilt heavy upon your shoulders.
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I know all the ”feels” of panic, inadequacy, and horrible guilt when you accidentally leave that babe’s life-saving rescue medication at home for a few hours while you are running errands with him/her in tow or, out of exhaustion, forget a dose of daily medication. Mama, it’s okay to give yourself a little grace.
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I know all the ”feels” of judgment and accusations as you make unconventional parenting choices for your child. But, Mama, my guess is those judging never knew the ”feels” that you are experiencing.
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I know all the ”feels” of changing your entire life to accommodate the needs of your child so that your child can be whole and healthy—so that your family can be whole and healthy.
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I know all the ”feels” of life through the eyes of your other children—fear coupled with jealousy of their sibling’s condition. Mama, it truly does add another real and difficult layer to tread through an already complicated circumstance.
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I know the ”feels” of celebration and triumph when your child’s condition is treated, and he/she begins to thrive. But even through triumph, Mama, you are always on guard knowing that the condition is still there and could quickly reappear.
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I also know the ”feels” of a very real and loving God who sees me, shows up for me, goes before me, goes behind me, comforts me, strengthens me, calms me, equips me, calls me by name, and never fails me. He’s been beside me through every step of our journey, and without this journey, our family would have never experienced the depth of His nearness, love, and abundant mercy.
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Sweet Mama, when you feel exhausted, overwhelmed, afraid, anxious, hurt, worried, ill-equipped, and unseen as you navigate through the stormy and dangerous waters of life mothering a medically-fragile child, never once doubt that you are very seen by God. Cry out to Him, and His abundance of strength, grace, and mercy will pour out upon you so that you can then continue pouring out onto your child.
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Zephaniah 3:17 tell us, ”The Lord your God is in your midst, a mighty one who will save; he will rejoice over you with gladness; he will quiet you by his love; he will exult over you with loud singing.”
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Dear One, know GOD IS IN YOUR MIDST. Allow Him to be the quieter of your soul. And on the days that you feel hidden and that no one else understands the rocky path that you are walking on, know that God is walking down that path before you, behind you, and beside you. . .always singing over you as you go!

Much love ❤️,

Macki

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The picture above was taken after my daughter’s first massive seizure which lasted over 10 minutes; she then went unresponsive for well over an hour (each minute she didn’t wake up seemed like an eternity.) I snapped this picture after we left the hospital, and I had a quiet moment to reflect over all the emotions of the day. I never wanted to forget how overwhelmingly grateful I felt to the Lord that my baby was still there in my arms for me to hold ❤️❤️❤️