I Didn’t Know it Would be This Hard to be a Mother



I didn’t know it would be this hard to be a mother.

I remember the longing I felt for the joys and trials of motherhood. I desperately wanted to lay my hand on downy-soft baby heads, kiss them while they sleep, and marvel at their tiny bodies as they softly breathe. I knew there would be hard days, but I had no idea just how far beyond myself those days would take me.

I couldn’t imagine days when we haven’t slept for more than a few minutes at a time, for weeks on end, while we fight off sickness, battling with all we have to stay out of the hospital, trying to spare our older children from more trauma. I couldn’t understand the pain of seeing your child struggle just to breathe, helpless to fix it, so worn from it all that you walk away from the coughing fit that turns him purple for a few moments because your heart has actually become calloused toward it. You can emotionally survive no other way.


I didn’t know that I would fight just to stay. Visions of serene beaches with people to serve me, things that had never taken up any space in my imagination, invade my mind. I battle very real, very selfish thoughts that I never want to take care of anyone else again.

I didn’t know that in moments of deepest exhaustion and helplessness, I would actually think the forbidden and unspeakable thought – this hell would be over if you actually did what I so fear and fight against every day.

Thoughts intrude my stoic resolve, betraying my selfishness and the darkness that makes me cling to my Savior tighter than ever. Thoughts like these take me down emotionally, leaving me sobbing for days in shame and horror…

During a visit a while back, I whispered my secret to my dad, so betrayed by my own mind. So ashamed. He put on his pastor-hat and with deep compassion talked to me about the damn devil who puts thoughts in our minds and then stands back and points his accusing finger at us for them. The devil? Really? OH YES. Hell, yes.


Recognizing that the thoughts are lies from the pit of hell doesn’t make them go away when you’re stumbling through your days and nights and someone has the audacity to suggest that you’re too busy to be a good mother. Should you really sign up to lead a Bible study and expect your children to go to church on Wednesday nights? Is it a good idea to go to a mom’s group that has become a life-line to keep you sane? Is it a good idea to sign your daughter up for two activities a week?

Satan has more voices than one. He will accuse you in your own thoughts and in the words of others who have no idea what they’re saying and how it cuts.

How can you write a book and a blog about how good life can be with a child who has Down syndrome, stand before crowds and beg them not to abort their baby with a disability, but think these thoughts? You are a fraud.

No, Satan, you are a liar. (Read John 8:44.)

I didn’t know how hard it would be, but I also didn’t know how God would hold up my weary arms in marvelous ways.

I couldn’t have imagined Kristina, the quietly tenacious helper who takes tube-feeding and breathing treatments in stride and stands in the gap for me. Not only does she help, but she prays. I couldn’t have imagined the love that could bubble up in my heart for my husband as he takes care of the babies in his own way, building his own relationship with his children, sealing their hearts to his and my heart to him. I couldn’t have imagined a tender mother-in-law who shows up to change diapers and read stories and hug me tight. I couldn’t imagine how my heart could grow as I learned to lean on others and what that would teach me about how to lean on the Lord.


I couldn’t imagine how the great need for Jesus would invade every aspect of my being and lead me to know my Savior in a way I don’t think I could understand any other way.

With the most tender thoughts I can convey, I also shout from the rooftops – I couldn’t imagine how the smile from a baby, one that goes all the way down to his toes, could strengthen my resolve to get up, wash my face, and stop feeling sorry for myself. I couldn’t imagine how happy I would feel when he pulls himself up to stand for the first time. The first time he pushes himself up to sitting. The first time he rolls across the room. The first time he showers me with slobbery baby kisses.

I couldn’t imagine how deep the joy would go, down into the dark and selfish places I try to hide, helping me open the windows and let the light in.

I’m teaching my older children the 23rd Psalm. “The Lord is my shepherd. I shall not want… Yea, though I walk through the valley of the shadow of death, I will fear no evil, for Thou art with me.”

Charlie asked me this morning what the shadow of death is.

ECMO. The shadow of death is ECMO, Charlie.”

We have walked through the valley of shadow of death more times than I care to recount in the last couple of years. But God has been with us. We are walking through very hard things, but His rod and staff, they comfort us.

I used to be bothered by those who didn’t give me enough credit. I wanted to prove to them that I was enough. I allowed my thoughts to swirl around ways to impress them or just get them to notice me. Those days are gone and I’m grateful. Hard things have shown me who I am and what I’m made of. Sometimes I want to run away, but I’m still here. I wanted an easy way out, but I’m learning that the fight sends my roots down deeper.

I didn’t know how hard it would be, but I also didn’t know how hard I could fight. I imagined sweetly sleeping children, ignorant of the fire they could light inside me to burn away the darkness in the corners of my heart and flood them with light and grace.

Grace, grace, God’s great grace.


It covers a multitude of sins and lights up the darkest of days. God’s mercy is new every morning. He rescues me in the weariest days. He frees from the fear of man. He sets me free to praise Him.

The complications of Down syndrome can be hard, but so can many other things that mothers face.

A perfectly healthy child can have a near-drowning accident that leads to cerebral palsy, stealing the spark from their once-shining eyes. Some mothers desperately struggle to breast-feed their children through undiagnosed tongue and lip ties while they bleed and battle infections, just trying to give their child what seems right. Some mothers fight just to get their children to eat enough to keep them out of the ‘failure to thrive’ category and they have no idea why. No one offers them feeding therapy or solutions. They’re told that their child will eat when he or she is hungry and they cry alone at night when they realize that their child actually won’t eat. Some mothers scour parenting books to try to understand their child and how to parent him, only to be told he has ADHD and needs medication, finding out much later that he actually cannot hear correctly. Some mothers battle anxiety in their children, wondering what they did that the precious, adored daughter doesn’t feel safe. A perfectly healthy, bright, athletic teenager suddenly wants to sleep all the time, feels dizzy and nauseous, and her grades drop drastically while her parents wonder if she’s depressed or on drugs – only to discover she has a rare condition that has no cure. Another mother wonders what’s different about her baby who doesn’t act the way her other ones have acted. She asks doctor after doctor, struggling to understand why, only to find out years later that she has a sensory processing disorder that affects everything about her life.

Motherhood is hard, and these are just some of the stories I’ve heard. We do battle for our children every day. No one tells us what it’s like to struggle and fight, exhausted and ashamed and afraid.

No one tells us how the careless words of someone you look up to can cut your heart right out when he casually tells you to pull out the feeding tube because babies eat when they’re hungry and you want to scream, “NOT MINE!” but he’s walked away and is already talking to someone else. There your heart lies on the floor, cut out and bleeding, and you have to pick it back up, put it back in, and sew your own chest closed.


No one tells you how badly it hurts when you’ve tried everything you know to do to provide a safe and loving environment for your children, looking them in the eye every day and making sure you connect with them, hovering over them as they eat and play and sleep – trying to balance it all out so they have a healthy, happy childhood – and then… Then something comes out of nowhere like a wrecking ball and tears through your carefully constructed world. When the things you’ve been working so hard to keep from them – anxiety, displacement, abandonment – hit them all at one time and there’s nothing you can do about it. You have to choose to let that ball tear through their world because you have something even more important to do somewhere else.

When the priceless treasures you have nurtured every day with more care than you’ve ever given anything are suddenly knocked to the ground and your hands are so full that you can only pray, no one tells you what that does to your soul. No one tells you what it tears from you when you have to let someone else who couldn’t care nearly as much as you do pick them up, dust them off, and try to help them out. No one tells you how your heart takes a beating when you’re finally able to focus on them again, but they no longer want your attention because they’ve learned to live without it and now they’re just annoyed. No one hears the screams in your soul.

But God. God and His tremendous grace, mercy, forgiveness, and love.

God had your children in His hands the entire time you thought they were in yours.

God loves them more than you ever possibly could. God has been there the whole time and He still is. God has allowed them to find their independence. God is the one who sent those loving arms to lift them up when yours were full. God lets you know that you’re going to be okay and so are they.

All is not lost.

Anxiety can be soothed.

Displacement is temporary.

Abandonment is a lie.

And you feel the rush of angel wings all around you, lifting you back up to your feet, healing your broken heart, and returning the smile to your face.

No one ever tells you how hard motherhood is, but no matter how hard it gets, there is a God who wants to help you through it all. There is a God who understands the situation better than you ever could. There is a God working behind the scenes to protect and soothe and heal and deliver and make a way where there seems to be no way. Trust in Him.

Thanks for taking the time to read to the end!

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