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So much we pray in so few words

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We lean over the pack-n-play travel crib in a dark room at their grandfather’s house. August is a newly minted seven year old whose past two weeks have been filled with swimsuits and slabs of sunscreen. We’re on an extended trip to the east coast, where the sun shines hot in the summer and grandparents and aunts and uncles seem to be waiting in every town in the mid-Atlantic states.

It’s afternoon. He’s followed me and Ace into my room where the crib is. He wants to help. I swaddle his baby brother and he sings with me a silly lullaby, the same one he sings to Ace when he cries in the car. Go to sleep, my zoodle, my fibbity fitzy foo . . .

“Mom,” he whispers. “I want you to pray for Ace.”

“Okay.” I lay his brother down inside the crib. “What do you want me to pray for?”

August, who faces scary dreams on a regular basis, asks first that I pray that Ace won’t dream at all. (“I don’t want him to have a bad dream. And if it’s a good dream, then he might be sad it isn’t real.”)

And then he adds, “And pray for his Down syndrome.”

“What should I pray about his Down syndrome, buddy?”

“Pray that it won’t hurt him.”

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When Ace was born 12 weeks ago, Chris and I weren’t sure how to tell our boys about Down syndrome. They’d never known anyone with DS. How could they understand what it would mean for their baby brother, what it would mean for their lives? When we were given Ace’s prenatal diagnosis I wept first for them, for the responsibilities they’d have to hold, for the challenges they had never asked for. How would it feel to hear some kid in their class make fun of their little brother? Which of them would feel pressure to care for their brother when Chris and I one day can’t?

We’d been reading a children’s book about Down syndrome. So when I told the older boys about Ace’s diagnosis, when I took Amy Julia Becker’s advice and described DS as being something that would make Ace really good at some things (most flexible member of our family!) and in need of help in other things (“Crawling and walking might be harder, but we’ll cheer him on and help him learn”), the boys weren’t afraid at all.

In those early weeks, when other parents at August’s school would ask about how Ace was doing as I walked my first grader into class, August would tug on my sleeve (“Mom, tell them about the Down Sin Drum!”), excited. Something was wonderful and important about his brother.

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We haven’t faced the hardest things yet. Ace was born with a healthy heart. When he was 10 days old I held his six-pound body as cardiologists strapped electrodes to his tiny chest. I sat beside him and stared at the screen while the fluttering tree of his heart’s chambers swayed from side to side. Such beauty inside him. A heart that worked.

When August asks me to pray for Ace’s Down syndrome, I think first about how grateful I am for that healthy heart. Then I think about the blood tests Ace will have every six months. It’s the possibility of blood diseases that keeps me up at night.

Then I think about how it will feel to watch my friends’ babies develop typically, while my Ace struggles to sit up, or crawl, or say his first words. I worry that Ace’s speech will be difficult for the world to understand.

I think about how much I love words, how I want Ace to be able to read books and write his own stories. I think about how gentle and loving he already is, and how afraid I am that despite all the love he has to give, the world will fail to love him back.

Pray that his Down syndrome won’t hurt him, my oldest son says.

There is so much we ask in so few words, Lord. Such depth to this prayer.

My seven year old leans over the crib and says, “Have a good nap, sweet baby.” And I take a deep breath. So many deep breaths lately. So much weight for so small a life.

That it won’t hurt him. We pray that it won’t hurt him.

 

 



  • Alicecrumbs

    I remember my sweet 3yo telling other children who asked why his big brother couldn’t talk: “he’s got dancing drum”! It’s hard some days, isn’t it? The fear and the concern for the rest of your children. Our boy with DS is 9 now and his speech is coming – he told me happy birthday, he asks to come when one of us is dashing to the shop. He imitates peppa pig and sings to uptown funk. The steps are slower, but the journey’s still good.
    Sending love.

  • Christa Mason

    I have a tear rolling down my cheek as I think of all the concerns you face. God gives us these beautiful gifts full of mysteries to be discovered, and some of them are wonderful and beautiful and some of them tear at our souls. As I read each worry I smiled as I remembered my cousin in her younger years with DS, she was carefree and STRONG. She graduated this year still both of those things. I think of my coworker whose 22 year old son with DS comes to work for the last hour of the day, he wears his headphones and sings as loud and off key as I have ever heard. I just want him to come to my room and do that, I covet his ability to just belt it out. I also think of the sweet boy that has gone to school with my son all through elementary, my son was his peer helper and it was such a gift to see the teachers know that Coop had too much energy to just sit and enough heart to love on someone else in his class. I pray for Ace too, pray that his joy is contagious like his mommy, pray that his brothers are always protective and proud like the siblings of the kids with DS that I know, I pray that he is healthy, I pray that as the mysteries of all of your children are revealed that you see that both the wonderful and the terrifying are gifts from God. I love you Mama Monk and I can not wait to see all of the joy your sweet little boys bring to your heart, and to others! Just another Africa….

  • Bronwyn

    You are raising three beautiful boys. The strength is already showing in August. He is living out the faith in God he knows makes all the difference. Thank you for sharing your heart. Praying for little Ace, God’s tender love, protection and anointing to do the works, prepared by His Heavenly Father beforehand, for him to do.

  • so tender and beautifully written. My prayers for your family. I know your words inspire all of us!

  • Kelly Stanley

    Beautiful. Praying that lovely, deep, layered, weighty prayer alongside you.

  • Liberty

    Thanks for inspiring tears … Praying for your particular concerns and for my four boys that the alcoholism won’t hurt them more than it already has…

  • Precious

  • pastordt

    I, too, will pray that lovely line. Thank you, August. Thank you, Micha.

  • Oh, friend. Such beauty here amidst the heartache. I cannot wait to hold Ace and read him stories and cheer him on as he grows into all he will be. xoxo

  • I’ve been rereading this all day. My son Samuel, who has Down syndrome, will be two in a few weeks, and this piece resonates with me in a way that few things have since we got his prenatal diagnosis. Thank you for taking the time to write it and thank you for sharing it. Also, your August sounds like the sweetest, most beautiful little soul! What a lovely family you have!

  • Tamara

    So, Alex is the 5th of our children. We didn’t know prior to delivery he would change the course of our lives in so many wonderful ways– beyond what anyone could imagine. If you asked me what I remember the day we found out….I would tell you: I was alone in the hospital the day after Alex was born while my husband had gone to retrieve the other kids from school. We were waiting the results of blood tests taken a day prior after a nurse noticed Alex had a straight line across one of his tiny hands….a common marker for someone with Ds….but some typical people can have a straight line also and he didn’t have any heart challenges so maybe he didn’t have Ds (is what I prayed/hoped). A nurse came into my room and told me (while I was still alone) the test was positive….Alex had Down syndrome. She didn’t stay long and I wept in the silence of my room after she left. I called my husband, told him to take the kids to my mom’s house and come back to the hospital ASAP. Well- my husband didn’t take the kids to my moms (a decision I later came to appreciate so so much) but rather sat at our kitchen table and told 10 year old Averi, 9 year old Addie, 7 year old Eston and 3 year old Emma that their brother was born special- a little different but in a good way. He tried his best to explain what Ds was and what it would mean to our family as he loaded them all in the car with him to come to the hospital. When they got to the hospital, it was Averi (10) who came through the door 1st and to this day…..11 years later….I can remember her words like it was yesterday: “Mom, don’t worry, it’s ALL going to be okay. We are going to love Alex and we will help with what ever we need to do.” I cried far more then compared to when I was given the news. How could my 10 year old be soooo wise? She was right. Alex is thriving today. He plays baseball with his classmates, goes to the same school all my other kids attended, is in cub scouts and just loves life. I wish I had a crystal ball on that day so I could have seen what I have seen now…..I would have smiled and not cried at all. The ride is a little more challenging and different…but not impossible by any means so take it a day at a time and cherish the wonderful things Ace is going to bring to your family. Averi is now about to take her MCAT for entry into med school: Studying to be a doctor to help those with Ds- medically and via research. Addie is a junior in college studying psychology and special education. She has been working on getting the 1st post secondary education program for individuals with intellectual differences approved at her college. It would be the 1st of its kind in the state of Texas. The things my children have done on their own to demonstrate their love for not only Alex but to advocate on his behalf….supporting a campaign in high school and wearing t-shirts that addressed the word retarded: “Spread the word to end the word”…..all because they care and love their brother. They see his ABILITY way before they see the ‘dis’ that many others see in disABILITY….and for that we are so grateful and blessed. They understand the meaning of unconditional love b/c of Alex. So, take a breath and enjoy your journey. I used to pray after Alex was born that God would make him smart– even though I knew the ‘intellectual challenges’ of Ds I knew God could do anything and He could help Alex. God did make him smart….smart enough to teach the rest of us what God’s unconditional love really looks like. 🙂 Much love and encouragement – The White 🙂

  • Jerilee Preston

    Micha thank you so much for sharing this beautiful prayer and such priceless moments with your sons. I have just recently discovered your blog. This post cut right to the core of my being. I have a two year old daughter with Down syndrome and so much of what you write resonates with me. I wept as you described so elequently what I feel about her and my two older children. I will also be praying that Down syndrome won’t hurt them.

  • Beth Davis

    This hit me so hard today. Although my child doesn’t have DS, she was born with a brain condition (Agenesis of the Corpus Callosum). There were so many questions & so much fear of the unknown. We have had developmental delays, but she has progressed beautifully. She has definitely defied her odds & has achieved so much more than many doctors ever hoped. We’ve have prayed so much & so hard for her. What you say is so true…”so much we ask in so few words”. Our girl will start school in August. Again, so much fear. I will remember you & your sweet boy. We will be praying right along with you. I was so touched by your post. Thank you.