A Mother Shares Her Daughter’s Suffering

She was only 3 days old. We knew something was off: her breathing a little labored, her body a bit limp in her mother’s arms. But her vitals were within range and the experts on the phone said everything seemed all right. What could be wrong with my granddaughter?

The Wonder of What’s Coming

My daughter, Carina, gave birth to a baby girl last June. In the months before her baby was born, Carina would sit in her rocking chair beside the waiting cradle, filled with the wonder of being a mother. She was preparing for something as close as her own body, yet far from her experience. The parenting books she read as she rocked could not presage or prepare her for what was coming.

If the darkness of 2020 could not be redeemed, it could at least be brightened by the impending arrival of this precious child. A month before Callaway True arrived, I wrote an article titled: My Daughter Shares in the Wonder of Being a Mother.

Carina and I had planned for me to be in the birthing room, a scenario that enlivened us both. However, weeks before her due date, we learned that extra people would not be allowed in, thanks to the Covid-19 threat. This loss felt huge as I wanted to be there to help my daughter, share in her experience. But we adjusted to the fact that I would see her baby at home, a mask on my smiling face.

The Onset of a Mother’s Suffering

The first time I saw Callaway, day 2 in her life, she was a typical infant: sleepy and learning to nurse. Carina was also sleep-deprived and learning to nurse her baby girl. Visiting on day 3, I noticed our Callaway still seemed quite sleepy. Her mom was struggling to get her to eat. Typical newborn and new mother stuff, right?

Luke, Carina’s husband, was just learning the ropes too. He was excited and exhausted by his new role as a dad. None of us in the family who met Calla those first few days had an inkling of what was to come. But, by day 3 she just wasn’t looking right. Her chest heaved slightly and her limbs were getting droopier.

By mid-afternoon on that Saturday, it was obvious that Callaway needed some medical attention. The emergency room staff at Vanderbilt Hospital confirmed that our girl was in trouble. By evening, she was admitted to the Children’s Hospital with a suspected infection. After many tests and expert opinions, the doctors determined it was a genetic condition threatening baby Callaway’s life. Ammonia was flooding her body and brain.

She almost didn’t make it. Methylmalonic Acidemia (MMA) is a rare genetic disease in which the body can’t break down certain parts of proteins. This leads to a build-up of toxic substances and a metabolic crisis. Calla couldn’t safely digest her mother’s milk.

The Suffering of Wondering

Stress and trauma filled the subsequent days. The suffering of this small family intensified with a long week in the Pediatric Intensive Care Unit. This led to 3 more weeks in the hospital. They endured their hospital experience without any friends and family allowed inside. We could only support them from afar and in brief visits outside.

On one of those first days in the PICU, Carina asked me to gather a few things from Calla’s nursery at home. As I entered the bedroom, I lamented to see the rocking chair beside the empty crib. I feared Carina would never again hold her daughter here.

Thankfully, after weeks of wondering and suffering, that little family did return home again. Those shell-shocked and exhausted parents began the long journey of caring for their daughter and living with MMA.

The Sharing of Suffering

For 7 months now, I’ve witnessed Carina’s suffering because of her daughter’s suffering. From the daily needle injected in her leg to the manufactured low-protein formula she must be fed, Calla puts up with a lot. The drugs, the physical therapy, the upset stomach, the feeding tube. Yet, she and her parents have risen to meet the obstacles. They press on through the hardest experiences of anyone I know.

Carina posted an update recently, describing how she’s learning to bow down, to accept their suffering:

So I’ve been doing a lot of bowing…. Trusting I don’t have the full picture. Gratefully and gradually releasing control, as it’s the only choice to make in this moment. I bow, and my chest loosens for a moment. I bow, and a joy in my (our) present suffering shows up. I bow and remember that this is Callaway’s story, Callaway’s life, not mine, and it’s my job to keep making the best decisions that exist for her until she gets to pick up her suffering and decide what she will do with it. I bow, and I get to keep living my own life with my hands as wide open as possible.

AND Carina’s arms hold Calla close as she rocks her to sleep these days. In the room with the crib we feared she’d never sleep in, I, too, have the pleasure of rocking and holding Calla. I am privileged to share, with my daughter and her daughter, all of our suffering and joy.

Visit CaringBridge for the latest update about sweet Callaway!