The Bedtime Story I Rewrote for My Son With Down Syndrome
Happy birthday, Kaleb! Every birthday a person experiences is special, but I’m not sure one has held so much significance for me as your first birthday. In some ways, I feel that it’s my birthday, too, since it signifies the beginning of my own transformation.
I think back to this past year filled with all the tears, heartaches, prayers, cuddles, hope and love. I am reminded of our bedtime story, “I Love You, Stinky Face” by Lisa McCourt. I read it to you each night while you sit on my lap nestled against me. Yes, it’s the one that you try to hold and turn the pages while I’m still reading. At least once or twice during the story, you will turn your little head to watch me with your big beautiful eyes as I read.
I love that book. It’s a very cute story. The other night while rocking you and giving you a few extra cuddles, I read the back of the book. The back of the book speaks to the unconditional love of a mother. In the book, the mother’s love is tested. This year has tested us, but I hope you have always felt reassured of my love for you.
It also mentions that the illustrations with their calm colors and pictures can make the scary stuff seem not so scary. I can vouch that you made what would seem scary and downright impossible seem not so scary. So while I read, I must admit a revised version comes to mind — our own special version of the book.
“I love you, my wonderful child,” said Momma as she tucked me in. But I had a question.
But Momma, what if I were born a very tiny preemie? Would you still love me then?
“If you were a very tiny preemie, I would sit by your side so you wouldn’t be alone. I would begin to learn the language of the NICU, so I could better understand your needs and I would say, ‘I love you, my very tiny preemie.’”
But Momma, but Momma, what if I were connected to monitors and had to live in the NICU instead of going home with you and Daddy?
“My heart would be very sad and look forward to bringing you home, but I would come spend each day with you in your temporary home. And if you came with monitors, I wouldn’t mind. I would learn to handle all of those monitors as I pick you up and hold you tight and whisper, ‘I love you, my precious NICU baby.’”
But Momma, but Momma, what if I came with a diagnosis of Down syndrome and an extra chromosome you hadn’t expected. And that extra chromosome meant I would learn things in my own time and way?
“That extra chromosome might catch us off guard, but we would work to figure out this journey together. As you show us life from a different perspective, I would work to be the mother you need and make sure you have every possible opportunity. That chromosome would only confirm what I already knew — that you’re simply extra special and uniquely you. And I would say, ‘I love you, my perfect child with Down syndrome.’”
But Momma, what if I came with oxygen and monitors and even ate my food through a tube in my stomach?
“Then I would give your breast milk through a tube if that is what you needed. And I would learn to handle your monitors and oxygen needs, since you’ll need them to grow big and strong. And I would lay you in your crib and say, ‘I love you, my sweet baby, accessories and all.’”
But Momma, but Momma, what if I had to have heart surgery that made you feel as if your heart was the one that would break?
“Then I would hold you tight until it was time to hand you over to your medical team. I would be worried sick, but I would let my heart break if that meant yours would be fixed. And afterwards I would say, ‘I love you, my little heart warrior.’”
But Momma, but Momma, what if my future was a scary unknown that sometimes makes you cry with worry?
“Then I would look right into your eyes and say, ‘I love you, my child.’ Because my child you are more than your medical file. You are my child, and every life is a big scary unknown. That is why we take it one day at a time and enjoy what we have today.”
But Momma, what if my first year made your heart have cracks in it from breaking in ways you never thought possible?
“My dear, those cracks are not really cracks at all, but rather stretch marks from where my heart would grow in ways I never thought possible. Those stretch marks would be created from new-found love and respect for your daddy and brother, medical professionals, fellow parents and you. Sure, it would feel at times as if it were breaking, but I would gain a lot more than I originally perceived as lost. I would kiss your chubby cheeks and say, ‘I love you, my mighty miracle.’”
Today, I am so happy to celebrate your birthday and the first year of your life. You did it, Kaleb.
I love you, my wonderful child. Happy first birthday!
Inspired by “I Love You, Stinky Face” by Lisa McCourt.
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Amanda is a professor, writer, and founder of the nonprofit, Mighty Miracles Foundation. However, her favorite titles are wife and mother. She is the mother to two boys. Kaden, is a sports crazy, baseball obsessed, kind hearted, old soul who is six year old. Kaleb, is their ornery and stubborn three year old who has shown since birth he was writing his own rule book. Kaleb was born at 28 weeks at 2lb 2oz and a birth diagnosis of Down syndrome diagnosis. Since he has also added cerebral palsy to his medical file. Kaden teaches the Dickinsons new life lessons as he continues to grow and enter new stages in life. Not to be outdone Kaleb is determined to show life from a different perspective.
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