this is motherhood {too}: an SMA type 1 journey of loss, grief and faith.

December 12, 2013, This is Motherhood Too, 5 Comments


This is motherhood, too…

That’s what this is supposed to be about, right? What motherhood is to me?  I can tell you that motherhood is not at all what I thought it would be. As little girls, we believe that our mothers are upbeat, positive, indestructible superheroes.

That was my perception….until I became a mother myself.

For me, motherhood has not been rosy and wonderful. Sure, there are many beautiful, incredible aspects of motherhood. We speak about the joys of motherhood, yet barely mention the hard moments—those filled with pain, heartache, anger, and frustration.  Why would we? Not every mother goes through this kind of pain, so it makes sense to tuck it away. At the same time, I am not the only mother to experience this. This is simply my unique story of motherhood up to this point.

This past year has been filled with some of the most difficult moments of my life.

Being a mother is hard.  No one told me that I would have to watch my child struggle for breath, and fight for his life for as long as his little body could bear. No one told me I would lay awake at night, tossing and turning, agonizing, dreading the moment I knew was coming—when the last breath of life would leave his tiny lungs. No one told me there would be very dark days where I couldn’t muster up the strength to get out of bed. No one told me that panic would rise to the surface, catching in my throat, as they brought out the tiniest white casket, so beautifully adorned with blue and white flowers. The casket that was holding my infant son.

Being a mother is heart-wrenching. Having to explain to my three-year-old daughter that her baby brother is in Heaven with Jesus; taking her to his grave on his first birthday; having to answer the innocent question “How many children do you have?”; having to watch all of my other sweet friends as their children play together, while my child plays alone—all of this makes me feel deep pain to my core.

Being a mother often made me sick to my stomach. Not having the ability to “fix” my son’s muscles made me nauseous. Feeling his limp arms, legs and neck each time I picked him up, watching him spend his short two months tethered to an oxygen tank as monitors screamed out alerts. It literally made me sick.

Being a mother makes anger well up and burst forth fast. As I watched one of the local hospitals fumble around in confusion when my tiny baby needed oxygen, I was angry. When I first got the confirmation that my son did, in fact, have a genetic condition that would likely end his life, I was angry. When I think about the years that my daughter will spend without knowing the irritation—and laughter—a little brother can bring, I get angry. My husband and I are forced to make hard decisions about having more children, or not, and this makes me angry that we even have to make these choices.

SMA type 1 storyAnd yet…

God spoke directly to Mary and told her: do not be afraid. Marythe  mother of our Savior, the mother who watched her Son writhe in agony, the mother who witnessed her Son suffer—she was told to have no fear. She listened to this command.

Just as God promised to take care of Mary, He has also promised to take care of me.  That doesn’t take the pain away, but it does reassure me that there is more to this life than I can comprehend.

What else is motherhood to me?

Motherhood is joyful.  Watching my daughter grow into a little person with her own personality and sense of humor brings endless smiles. Listening to her make up silly songs as we ride in the car; watching her eyes light up as she sees something new and wonderful; hearing her talk about her “Baby Beau” and how she knows he is not only in Heaven, but is also “hiding in the bushes”, (her version of the flowers that sit on his grave). Losing a child has allowed me to savor the moments with my living child, and really appreciate the brilliant little being she is.

Being a mother is purposeful.  I have been given the great task of continuing my son’s legacy. I want to open myself to others and allow them to see my pain and suffering, all the while continuing to praise my Father God. It has been laid on my heart to help other mothers as they go through trials similar to mine.  It is now my purpose to draw those around me—my husband, my daughter, my friends—closer to Jesus so that we can all be with Him one day together. 

Will I do things perfectly? Absolutely not. Will I stumble? For sure.

I know, even in the darkest moments, that God is looking down on me and saying “well done, my good and faithful servant”, and my sweet boy Beau is looking down on me too, for he’s nestled in the Father’s arms. I’d like to think he’s watching me and whispering: that’s my mama, and I’m so proud of her.well done good and faithful servant

Written by Hayley, ed. by Michaela.

This is from the collective writing project: this is motherhood {too}. Do you have a story you’d like to submit?


  • Reply Amanda January 6, 2015 at 6:19 PM

    I like to think he’s watching you and proudly saying that’s my mom too!

    Thank you for sharing your story and your honesty. I hope this message finds you ….since this post is a year old.. There is someone in nj who has you and your family in her prayers. ❤️

  • Reply Laurie Gerg's December 13, 2013 at 12:57 PM

    Dearest Hayley,

    Beau is beyond gorgeous. He is absolutely adorable. His soul is so visible in his eyes, alert, right there in the moment ready to soak everyone and everything up. He is a people person, clearly. I think I even see a profound sense of humor in him. Oh, baby girl, tall woman of God, I am deeply sorry for your loss of your baby boy Beau. He is perfect. The Lord comfort you and your husband and daughter. You are a very good mother. Very good indeed, one who is worthy of more. Bless God. Bless you, sister.

  • Reply Jill Young December 13, 2013 at 9:46 AM

    Love and miss you all so very much. I wish we had the blessing of meeting little Beau in person! I know this time of the year is a hard one and for that, I’m so sorry. Hang in there. Keep giving the glory to God! Give little S a kiss from us!

  • Reply jack nash December 12, 2013 at 6:21 PM

    Well done Hayley, I am so sorry for your loss of little Beau… I love the name!
    A very healthy perspective and future ambition… to share and help with others in pain. Thank you for your honesty and openness… may God continue to establish you and your family in His purposes.

    • Reply Hayley December 13, 2013 at 8:05 AM

      Thank you for your kind words Jack. Blessings to you this holiday season!

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