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To the new parents of a child with special needs

Dear new parents of a child with special needs,

I saw your Facebook post. Congratulations! The way I see it you had two deliveries yesterday: One was bringing your baby into this world. The other was telling the Internet that your baby is different. Both require deep courage. You delivered graciously and with joy.

I’ve been thinking of you all night. I got up to breastfeed my baby at 3:40 am. He’s back asleep in his crib at 4:15, and I can’t go back to sleep without writing you. I’ve been a parent for seven years, but my experience in this new world of special needs is small. I’ve been doing this for almost six months and I’m still fumbling to understand how I feel about my baby’s diagnosis. But I can’t go back to sleep until I tell you a few secrets. The kind you write each other about at 4 in the morning. You’re parents of a newborn. You’re up anyway, right?

Here’s what I want you to know:

1. 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. I don’t have to decide if I am happy or sad, thrilled or overwhelmed. I get to be all at the same time. Parenting our 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 fear begins, only that they wrap around one another. Sometimes it’s hard to distinguish my anxiety from my joy. Sometimes it’s hard to distinguish 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, like I do, 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 parent ever wants 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.

 

2. Just because your baby has different challenges, it doesn’t make you a saint. Good grief, I refuse to count the amount 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 for loving my child sounds a little like this: “You are amazing for being the mom of your child! I just couldn’t love your child!”

I assure you, that sucks. But, also? 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.

The reality is that 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 are 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 seek it out.

 

3. Relearn the definition of a blessing. Often sweet people will call my baby a blessing. And most of the time when they use that word they mean something close to rainbows and unicorns. They mean my baby is an angel who will always bring happiness.

Sometimes it’s hard to hear that (despite my baby being as adorable as an cherub), because Ace is just as human as any other child. He may be sweet but one day he’ll complain about dessert and TV shows and picking up his room, just like his brothers.

In order to receive their words with grace I’ve been teaching myself what blessing really is:  You know the story of Jacob and God struggling all night in that mystical wrestling match.

I’m making that my parenting mantra. This journey will be hard, for us and for our children. Blessing is hard-won. It is being set apart. Jacob wrestled all night and demanded a blessing. You know what he got? A lifelong limp and a new name. Also? Legacy. He was the father of a great nation.

Blessing is not for the faint in heart. It is always accompanied by suffering. I’m learning to embrace the struggle. I won’t let go until God blesses me.

And when the acquaintances say blessing without acknowledging wrestling, I don’t have to be angry. I just reinterpret their words for myself. If I can hear the truth in every easy phrase dished out for shallow comfort, I will survive this. You will survive this.

 

4. Every parent suffers. Your suffering just showed up early. Most babies don’t struggle to breastfeed because of low muscle tone, or illness, or the formation of their mouths.  Most people don’t have to send their newborn into surgery. I’m sorry your first days of parenting are extra hard.

But, here’s the truth: Every parent suffers deeply. Whether you suffer at the beginning or later. Whether your suffering is over the rebellion of your child, or the fear for their safety, or your own daily parenting failure, being a parent is always hard. It is always beautiful and miraculous and heartbreaking. Your heart is breaking a little earlier than most. I think that’s what people mean when they say you’re special. Or they say they admire you. Or they say your child is a blessing.

What they really mean is that you’re learning the secret earlier. What they really mean is that your wisdom is something they wish they had, but they don’t want to suffer to get it.

I wonder if you can rest in that. Your suffering has shown up early and it will keep showing up. But that braid of love and sorrow? The third strand is wisdom, friend. It’s there already, woven so tight you may not recognize it yet. You don’t have to. Right now you just get to receive. Receiving sounds passive, but it’s not. It’s the work of labor, of delivery. It’s the work of bringing a child into this beautiful and dangerous world, cleaning his body and holding him tight.

Do you remember that Mister Rogers song? . Sometimes I sing that song for Ace while I’m changing his diaper or we’re playing on the floor, and I remember the panic that rose up my throat in those pre-natal diagnosis days, and in the hospital after his birth, when I’d let myself think through what his Down syndrome would mean for our lives. Sometimes that panic still shows up. Sometimes I am so afraid for the future that I cannot breathe.

But what I’m trying to say, six months in, is this: I mean it. I like him, I like him, I like him, exactly as he is.

I receive my child. I won’t let go until you bless me. Pray these things. And hold tight, dear ones. This is a wonderful, dangerous season of wrestling. Don’t let go until you’re blessed. Until your name is changed. Until you come out limping.

 

With love,

Micha

 

 

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  • So beautiful.

  • james aydelott

    Beautiful, wise, poignant, and strongly affirming.
    I am so grateful you shared. Thank you.

  • sara ostransky

    Micha, thank you for doing the work of finding words for the varied deep feelings of your soul. It’s like opening a shade so I am able to see what you see through your window – and at the same time see the things I see through my window in a new light with deeper understanding and longing. Thank you, thank you.

  • Katie Fox

    Micha, you don’t know me but I am in the Christ Church writing group in Austin, so we have some mutual friends. I am actually reading your book Found right now. I am the mother of a special needs child by adoption (whose full diagnosis and scope was unknown at the time we brought her home) and one of my best friends just had a baby with Down syndrome, right around the same time as you. I just want to say: thank you. Your words are rich and true and I hope that many will read them and be blessed.

  • Beautiful post as always. Many parents will benefit from your insights here. It’s especially gracious of you to seek out the good intentions of those who say questionable things. A few weeks ago a complete stranger came up to me at church, looked at my son, said “Autism?” and gave me some suggestions/websites/information about cures, treatments, etc. Whoa!!! I was kind of shocked but I know she was demonstrating caring & a real passion to help. You’re right, we’re all just doing our best, both with our own challenges and those we see others struggling with. Blessings!

  • kate

    This is powerful and will offer comfort to many who are in similar shoes. You have such grace, for yourself and for others. The Holy Spirit shines through this post. How meaningful, thank you.

  • Beautiful

  • I have read your words but never commented, I couldn’t resist this time. I don’t have a special needs child but so resonated with what you said about suffering. Yes, every parent suffers. Thank you for saying that. It’s comforting for me in my own parenting process.

  • The Lucky Few (Heather Avis)

    Perfect!

  • I’ve been on this journey for five years now, consider myself a writer, and have struggled to put into words exactly what you have here. Simply perfect. xo

  • This is lovely and grounding. I will share it with those who need these words. Blessings!

  • Lara Suleiman

    I struggled with conflicting feelings upon hearing of my daughters Down syndrome diagnosis as well. So strong of you to put it in such beautiful perspective while you were still going through the grieving process. I am also a freelance journalist. Will follow your amazing work.

  • Jerilee Preston

    Micah, I am always thrilled when I see a blog post of yours show up in my inbox! I am a little ahead of you on this journey of raising a child with Down syndrome. My daughter is 2 years old now. Your writing has been such a blessing to me. I feel like you reach into my soul and express so eloquently what is buried there. Thank you for sharing so beautifully your journey.