Dear new parents of a child with special needs,
I saw your birth announcement. Congratulations! The way I see it, you had two deliveries yesterday. One was bringing your baby into this world. The other was publically sharing about your baby’s extra needs. Both required deep courage. You delivered graciously and with joy.
I’ve been thinking of you all night. I got up to nurse my baby at 3:40 A.M., and I can’t go back to sleep without writing you. I’ve been a parent for a total of seven years, but my experience in this new world of special needs is small. I’ve been doing this for almost eight months, and I’m still struggling to understand my own feelings about my baby’s diagnosis. But I have learned a few secrets—the kind you write each other about at four in the morning. (You’re parents of a newborn. You’re up anyway, right?)
Here’s what I want you to know:
You’re Going to Weep
When my child was born, I wept. Some of my tears came from a place of love, and some from a place of fear. And I’ve learned I don’t have to categorize those tears. Parenting my child with special needs will mirror the human experience. It will be wonderful, and it will be painful.
I’ve learned to think of my grief and my deep love for my baby as a braid woven through my chest, pulled tight. I don’t have to know where the love ends and the sorrow begins, only that they wrap around one another. Sometimes it’s hard to distinguish my anxiety from my joy, my love for my child from dreams that have been lost.
I simply know this: The love I felt when I first saw my baby is not diminished by my sorrow. Love is never diminished by pain. They have always lived equally together as long as parents and babies have lived on this earth.
If you need permission to cry, here it is. You get to cry because your baby is beautiful and particularly yours. You get to cry because this diagnosis is hard and no parents ever want their child to suffer. And you get to cry because your baby cried all night and you’re tired. Which brings me to my next point.
People Mean Well
Just because your baby has unique challenges doesn’t make you a saint. I refuse to count the number of people who have told me they admire me for being Ace’s mom. It’s nice of them to say that. But saying that I’m special sounds a little like this: “You are amazing for loving your child! I just couldn’t do it!”
I assure you that hurts. But no one who says this means to hurt me. There are people who think my husband and I are special for loving and raising our baby. That’s because our child’s diagnosis is frightening. And it’s also because loving Ace is changing us in beautiful ways.
Most people simply don’t know what to say. So when their words are painful or trite I’ve learned to tell myself that they’re doing their best. What they want to say is, “This thing you’re doing is hard.” If I let their fumblings come to me coated in grace, I will hear their kindness. The compassion is in their eyes if I’m willing to see it.
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