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by Casey Adams (Arkansas)
October 2017

Casey’s son Kolt has CHARGE syndrome.

Kolt lies on a quiltOh my tiny love…I am unable to simply demonstrate my love for you. Our story, saturated with so much pain, fear, grief, twisted with responsibility, hope, faith, and finally love, has so profoundly changed me.

You gave rise to a love I didn’t know existed. Real love. True love. A love that has no expectations. A love that sustains, even if it is not reciprocal. A love that is neither biased because of what you have to offer, nor prejudiced for what you are incapable of sharing. A love that is absolute. A love that has no regard for cajolery. A love that is unwavering.

Kolt touches his cheekI think understanding and TRULY believing that you were merely sent from God, for me to care for while you serve your purpose here and until he needs you home, allows me to exist as a mother differently. I can love more freely, because I am not bound by fear.

I imagine this is how Christ intended for us to love everyone. I imagine, this, is how Christ loves me.

Some memories still evoke immense physical agony instantaneously, but what torments me is the guilt of not knowing how to love you in the beginning. I only knew how to be one kind of mother. The kind who caresses, rocks, swaddles, and snuggles her baby. The kind of mother that sings while she soothes her baby. The mother that gazes into her child’s eyes as she nurses. The kind of mother that enjoys playing patty cake and making silly faces to her baby just to see them copy her expressions. But you never needed that kind of mother. When I rocked you, you cried. When I tried to caress you, you pulled away. When I would sing, you couldn’t hear me. You couldn’t hear me so you didn’t look at me. 

Kolt and his older brother sit on the sofaI couldn’t nurse you, so instead I mixed formula, though I never had to worry about waking up in the middle of the night to feed you because you were on a pump 22 hours a day that took care of that. Instead, it beeped all night because the tubing was kinked. I didn’t have to be the mother that had to worry about you crying in the night because you were hungry—instead, I would wake up to find you wet. Along with all your clothing, bedding, and the floor because the tubing had come undone and the milk continued to flow. When your nose was stuffy, I didn’t have to be the mom concerned because you couldn’t suck your bottle and breathe through your nose at the same time. Instead, I learned how to replace your G-button at home so we didn’t have to keep making the two-hour drive to the hospital in the middle of the night. When you had a cold, I didn’t have to be the mom that complained because you coughed all night. Instead, I ran catheters down your nose and past the back of your throat to suction out the mucus that caused you to turn blue.

 In a million other ways I was new to this kind of motherhood. We have come so far, my tiny love. I can’t imagine that the struggles and pain have not strengthened my love for you exceedingly. I am blessed every day to be given more time with you. I am grateful that I get to try again tomorrow, that I get to try to be better and to be just the mother that YOU need me to be. I trust that our struggles have purpose in this world or the next. If I leave this life today, I can say I knew the most pure love.

CHARGE on, my sweet love; Momma loves you.


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