To My Special Needs Child: I Knew Our Lives Would Never Look The Same As Anyone Else’s, But We Picked Up The Pieces

“Mothering Different. When you were pregnant, did you daydream of all the plans you had for your child? Did you dream of all the firsts? First steps, first words, the first day of school?

Did you imagine sports on the weekends? Did you wonder who they would be? I did. Were all those dreams and plans wrong? Mine were. When the day came for us to meet our baby, I knew. And at that time it broke me into a million pieces.

I knew for the rest of our lives our dreams and plans would never look the same as anyone else’s. But you know what? We picked up the pieces. We had new dreams and we made new plans. We no longer dreamed of the firsts.

We dreamed our baby would make it through surgery. We dreamed of living life outside of hospital walls at home with our baby. We dreamed of the little milestones our baby might meet and we celebrated them because even though it’s not a big milestone to you, it’s a mountain to us.

We wished for our baby boy to grin, and he did! We hoped to one day find a treatment for our child’s seizure disease. We adjusted and began to see our new dreams come true one by one, slowly but steadily.

What happens if they don’t? That’s fine as well. Regardless, we continue to daydream. Mothering in a Novel Way That’s all I know right now. I can change a trach, insert a g-tube and deliver tube feedings, perform CPR, perform physical therapy, perform a range of motion test, and draw up and administer meds through the g-tube.

When my child is brought back for yet another surgery, I know how to put on a brave front. I am fluent in my child’s silent language. Because I need to be my child’s voice, I know how to advocate.

I know how to find joy and miracles in the little things that are often overlooked. But most importantly, I know how to love a special little baby with my whole heart, and give him the life full of adventure he deserves.

I know how to love different, how to embrace different, how to see all the differences, and know that it is beautiful. And though my baby is no longer physically here, I’ll live every day for him to make sure he lives on through me.

THAT is Mothering Different. And it’s an honor.”

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