The Day I Stopped Wishing for My Children to “Stay Little Always”

OK, I’ll confess. I’m a sappy mom.

I like to keep old baby videos of my daughter on my phone so I can sneak a peek at her tiny face whenever I want.

And one of my favorite chores each season is going through my children’s drawers to pack away too-tiny clothes. I remember where my son wore each outfit and how he loved those faded blue fleece sweatpants. I used to cry when I did this, basking in the nostalgia of days gone by.

But not anymore. Now I celebrate it. In fact, I can never cry over growing up or growing old again. Not since we were told our daughter was going to die.

bucket loads of hope

At 11 weeks old, my beautiful baby girl was diagnosed with a rare genetic neuromuscular disease called Spinal Muscular Atrophy, type 1. The prognosis is unbearable. Most children do not live to see their first birthday, and there is no cure.

We were told she would lose all ability to move and eat, and later breathe. She would never sit up or hold her head. Sickness would be our worst enemy.

For weeks following her diagnosis, I stared endlessly at my daughter and couldn’t imagine how she’d die. Would her heart fail her? Would she simply stop breathing? Would I know when it’s coming? Would she be in any pain?

As I rocked her to sleep at night, crying and praying, I was haunted by a bubble romper hanging up across the room. It was pink and monogrammed. I had paid too much for it, but couldn’t resist the idea of her chubby legs crawling away from me during her six-month photo shoot.

Now, it mocked me.

Why did I assume we’d have that much time? Why did I spend so much on an outfit she might never wear?

The thing about raising a child with a terminal diagnosis, is that we no longer have the privilege of planning for the future. But we also don’t have the privilege of fearing it. All we have is the present. And hope – bucket loads of hope. It’s as necessary to our survival as water or food.

mom and daughter Today, my daughter is 19 months old, and she continues to defy the odds of her disease. She sits up in her special chair and giggles at her brother. She throws toys on the floor and breathes just fine.

And not only did she wear that pink monogrammed romper, but I continue to occasionally dress her in expensive and impractical baby clothes just because I can.

She’s alive.

And God willing, she will grow up. 

So moms, kiss those cheeks and wipe those bottoms with love. Clean out your baby’s drawers each season with thankfulness, and marvel at how much they’ve grown. Usher them off to kindergarten and post those pictures with pride.

But please don’t cry tears of sadness. Just cry tears of joy.

Growing up is a gift.

Jenny is a West Texas girl who married her best friend and Baylor sweetheart, Chris, in 2005. She spent her 20s running marathons and traveling as a writer and photographer for a global ministry, Buckner International. In 2012, she and Chris became parents to son Miller and in 2015 to daughter Emmeline, who was diagnosed with a rare neuromuscular disease, Spinal Muscular Atrophy (SMA) – type 1. Now Jenny lives in Burleson, Chris’ hometown, and focuses her time on caring for her daughter and helping other families of medically-fragile children. Jenny loves Jesus, family, good coffee and wine, meaningful conversations, musical theater, shopping, and porch sitting. And an occasional run, or walk. Whatever. (Photo courtesy of: Uneartherd Photography).


  1. Wow…what an amazing perspective. Thank you so much for sharing it! She is just as gorgeous and incredible as her mommy.

  2. What a wonderful and expressive post, Jenny! Love your ability to be honest and forthright and your thankfulness and great faith shines through. God bless you and yours as you continue your journey

  3. Thank you both! Writing this out (and sharing it) was a vulnerable process. Our life has been so radically changed in the past year, but I count it my privilege to be E’s mom and to tell our story so that it might bless someone else. Life is too short not to enjoy and appreciate each moment, and celebrate every step along the way!

  4. Jenny! You are an inspiration. Every time I see a picture or post from you I am challenged to pour out compassion, patience, thankfulness and love. You are an amazing mother and you are a display of grace. Thank you for sharing your journey and for being a woman of God! I am sharing your post with friends today.

  5. What an incredibly beautiful perspective on celebrating LIFE! Your sweet, brave Emmeline will continue to be in my prayers. Thank you for sharing this with all of us.

  6. Thank you for sharing. My son does not have a terminal illness but a chronic condition. I never cry for him to stay little, I always only cry out of joy at how far we came. I never thought we could come so far! Thank you for articulating so eloquently the feelings I have. I will be thinking and praying for your sweet family. Enjoy those beautiful littles!

    • D – Life sure can change fast, and once it does your perspective changes on everything! I’m pretty sure I look at every situation now in a new light. Thanks for the prayers.

  7. My sweet friend, I love you dearly and I’m so thankful for you and the relationship that God has led us into. Sharing the struggles and triumphs with you is a blessing. This post is amazing and beautifully written! May God bless all the children and the parents that take care of them! Love you!

  8. I was diagnosed with cancer last year, and I think my parents took it harder than anyone. I’m 42 and they’re almost 70. My dad insisted on coming to my appointments with me – my husband offered, but my dad insisted. You never stop worrying about your kids, I guess. ❤❤

  9. I also know what it’s like. My daughter was diagnosed with SMARD (Spinal Muscular Atrophy with Respitory Distress). She was diagnosed at 8 months old and we were told she wouldn’t be lucky to see her first birthday. Well today she is almost 4 years old and thriving!!!

  10. Thank you so much for sharing your story!

    I am a student at the University of Indianapolis and I am studying to be an occupational therapist. For one of my research classes we are looking into parents of children with a terminal illness. I was wondering if you would be willing to answer a couple of questions via email about your experiences as a parent going through something so extremely difficult. Thank you for your time. I hope to hear from you soon!

    – Marisa Kitt


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