When Life Doesn’t Go As Planned: Stef

I had the privilege of hearing Stef share her testimony/story at SALT Retreat last fall. I talked to her a little bit in between sessions and as we got talking about sharing our stories she said something that I have never forgotten, “It’s not for attention, it’s for connection.” She has been through a lot with the loss of her son, and more recently, IVF and a miscarriage.

Stefanie has suffered depression, anxiety, PTSD,  pain and loss silently more than once, but after her son died of a congenital condition at ten months old she promised to make something good come from her grief. With a heart broken open she threw out her fear-induced silence and vulnerably shared a difficult journey of healing.
Even after such a nightmarish trial she achieved the happiness she knew Heavenly Father meant for her. Life hasn’t been free of trial since then, but she learned so much about her faith and strength that she has navigated subsequent trials from a more hopeful place. Because after all, hope heals.

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Everything was going according to plan, college, marriage, kids. That is, until our first son, following 3 girls, was born. His pregnancy, like the others, was horrible but otherwise normal until he was born unable to move.

An infant, so tiny and even more helpless than most without the ability to move, was already moving our family toward more love and closeness. We struggled to comprehend what this might mean for our family and grew closer over prayers and frequent visits to see the newest member of our family those first few weeks in the NICU. But when I was alone with my thoughts, the familiar team of anxiety and depression began making their comeback.

Despite Brody’s weight gain and therapies multiple times a week in the first months, his ability to move continued to digress. The uncertainty of his future life relentlessly chipped away at me at a rate faster than I could combat. God made himself known as much as possible. There were silent walks hanging my head, face shielded from strangers beneath a hat, while He sent my favorite sunny rain to help wash away my tears. Earthly angels about His errand came to my aide with wonderful messages of hope and tangible support of dinners and babysitting, but when Brody stopped eating, my despair spiraled into depression.

It was then I experienced my darkest hours. I tried to focus on all the blessings we had received to that point, there was elation every time I met his eyes and felt the strength of his trusting spirit, but it was met with fear. I was falling deeply in love with a child and I wasn’t sure he would stay long on this earth.

With no new information at doctor’s appointments, we opted for a g-tube and decided to have extensive genetic testing. The results would take weeks but would most likely give us a diagnosis and therefore prognosis of what to expect for Brody’s future. The appointments became fewer and farther between to which I was somewhat grateful. This allowed us an opportunity to work toward accepting our new normal and find moments of joy.

On Brody’s six-month birthday we sat in a foreign hospital room. As we waited to meet a doctor for the first time we struggled to connect with my husband on Facetime – all so he could hear our biggest fears spoken,

“His condition is degenerative, life-limiting and terminal.”

The day after Brody was diagnosed, I made truth of a statement I had uttered many times, “I just want to stay in bed all day.” I slept that day away sometimes cuddling Brody, sometimes letting my family step in to offer his care. Once the day was over, I knew there was nothing left but to take that first step out of bed, and then another and another.

Now we knew. Brody would be physically and mentally limited, and may only reach adolescence. We began a new set of expectations. We learned to love and appreciate every moment with him.

Brody lived 4 more months and passed away at home 6 days after his 10-month birthday. Though his funeral was hard, I felt so much love and hope in those moments. He had helped us grow strong enough to be the ones available to comfort others. We knew where Brody was, we knew he was with his Father in heaven in a perfect body.

Heavenly Father stayed close through my grief. Enough faith remained firmly within me that I knew I would be ok eventually. That thought carried me back into public places such as a drive-thru or a grocery store. As I slowly reintroduced myself to the fast-paced world around me, I was so bare that I saw humanity in its rawest forms.

Here I was, living the unimaginable and I was just a number in a crowd. Or was I? If I looked closely, could I tell what other people were going through? Not usually. Perhaps their timid smiles hid difficult circumstances just like my own. I saw people differently, and I began to thank them as best I could for their simple acts of kindness toward me…though they knew nothing of what I was living. I called this extra effort toward gratitude, #brodymoves. It meant I could do hard things and still be grateful.

God continued to put caring people in my path but I also had to learn to move forward on my own. Though I didn’t recognize it at the time I began a journey of self-reclamation. I questioned who I had become, my spirituality, physicality, my purpose. Where would I find those things again?

I fought to regain every piece of what made me who I was, every ounce of what I believed. I fought for the presence of a will to continue better than I had been before.
I cried, begged God for permission to quit, and thought of ways I could leave this life without giving up on my family. My answers all started with two things, “look inward, look upward.”

I was guided to things from my past. Who had I been? Who would I be now? How would I merge the two people before this life event and after this life event? Old yearbooks with pictures, signatures, and comments reminded me of my old self. It had to be within me somewhere. How would I bring it out and continue building on it?

Physicality would be the first thing I would fight to reclaim. If Brody wasn’t able to use his muscles, I should honor mine. I should use my physical abilities to fight toward the first step of reclamation. I would take back my body, and take it to a peak condition I knew was possible but had never achieved. I would use my muscle to fight for my life – to believe for myself that I was this “strong” that people were using to describe me.

I reluctantly started sharing my journey to healing on social media. I wondered if it might appear as if I was somehow exploiting my son for attention, when a pleading prayer resulted in my answer, “It’s not about attention, it’s about connection.”

My hope is that those who find this account or any other helpful, supportive community will know they are not alone.

I wish I could tell you in person it will all be ok. But the next best thing I can do is share my life and joy as an example of overcoming that darkness.

I know it will be ok. No matter what happens, no matter the torment we have been through or might soon go through. It will all be ok. You can find the powers that need to be present in your life. You will, and maybe already have, feel opposite ends of the spectrum for every emotion but I promise you your trials can turn into the most beautiful hurt. They can transform wreckage into building blocks to help you climb to a place higher than you have ever before experienced.

Heavenly Father honored me with 10 borrowed months caring for one of His chosen angels and continues teaching me through my son’s short, impactful existence.

It has been my pleasure to share with you all here, and I wish you a meaningful journey of this life ahead, as for me I will continue my journey to live well after loss.

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