The Most Meaningful Help Given Us

June 2021 | Question of the Month
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The most meaningful help given us

In his first year of life (and even the months leading up to his birth), we were in and out of the hospital for Kimball a lot. That was tough in and of itself. But we also had a struggling toddler and it was just short of a nightmare. I’ll never forget our saintly, elderly neighbor I’ll call Susan, who volunteered to care for Wendy while we soldiered through those months of hospital visits. 

When Kimball was a few months old, and after a longgggg day of helping him battle another cold, he vomited. It was clear he wasn’t getting the air he needed (thanks to his teeny tiny nasal airway). In a panic, Juston threw together a hospital bag while I called Susan; Wendy was in bed, and the last thing I wanted in that moment was to drag her out of her safe bed and through a hellish night at the hospital with baby brother. 

As Susan pulled up in her car, we jumped into ours, only to hear the engine sputter and struggle to turn over. It was one of those almost-laughable moments of terror and exasperation. We sheepishly explained to the couple coming into our home to save the day, that we also needed a way to get to the hospital. They graciously gave us the keys to their car, and we sped off towards the hospital where Kimball was admitted. 

The memory of this helplessness, fear, and humiliation isn’t a particularly pleasant one. But it does illustrate the need for saintly friends and supportive family. I truly don’t know how I would have survived those horrible moments without this woman. 

Although others may never fully understand the extra work (physically and emotionally) that goes into being the parent of a child with medical complexities, most people get that it’s tough. And a lot of those people want to be helpful! 

In this response to this month’s question, parents shine a light on things that have been most meaningful and helpful to them in their journeys. 

**A big thank you to all who contributed! Head here to answer the current question of the month.

"An in-depth question about my child (e.g., who he is-- personality, likes and dislikes, what's going on in his life). It's not a physical action, but an emotional support. Parents love to share stories of their children! For me, it helps to feel my child is seen for the awesome kid he is!"

—Shannon W.

"Aside from the amazing support that my parents have always given my husband and me, there was one woman in particular that I will never forget. When Beth was just home from the NICU, a woman from church (a doctor), came over to train on how to care for her. Then, every Wednesday night, she came for three hours to care for Bethany Grace and my son so Todd and I could get out of the house together. She was an angel and made a tremendous difference in our lives."

 

—Kristin E. (Special Needs Moms Blog)

"Just listening and not judging is so amazing! I swear people looked at me like I was one of those moms that intentionally made my kiddo sick for attention. "

—Carrie K.

"A break..."

—Stephanie M.

"A hug. I’m not really a big hugger but 6 years ago I was riding the hospital elevator in tears while my then newborn was in the NICU. A stranger got on and asked if she could give me a hug. She hugged me and said she didn’t know what was wrong but that everything would be okay. It was such a simple gesture but it sticks with me all these years later."

—Laura W.

"Childcare."

—Amanda S.

"Someone who volunteered to learn how to use my daughter’s medical equipment so they could babysit."

—Katie P.

"A friend of mine is a nurse and offers respite whenever she can."

—@debnielsen7387

"My elderly neighbors will take my kids to the park to give me a break for an hour. 🙏🏻"

—@ashnik517

"Remembering something about my child's diagnosis and trying to empathize. Also, just listening."

—@libby.525

"When he was a newborn, my mom came over every day to watch him while I showered or napped."

—@abbiexmiller

"Telling us they will take the kids so we can go to the hospital (when I didn't even have to ask 😉)."

—@strentheningbyfire