We are continuing Shelly’s story. If you haven’t read the previous parts, you can read it here, here and here.
In this chapter, Shelly is working part-time and is the proud mama of two little girls. Her oldest, Kinley is under the care of a geneticist and her diagnosis is still unknown. In addition, Kinley is also getting therapy to help with her developmental delays. Shelly’s youngest, Kami, is a newborn.
For a while life moved on as expected. Kinley was getting her services. Kami was doing well. While Shelly continued to balance work and family. So far this chapter was routine. It wasn’t easy but manageable. But as with all stories, one chapter ends and another must begin. Unfortunately, the next chapter begins with another plot twist.
Another plot twist
Kami’s sleeping, which was once a blessing, was now worrying. She was sleeping way too much! Additionally, she wasn’t responding to her name. Neither was she making eye contact. In fact, she wasn’t engaging with the world at all.
One of the therapists who was working with Kinley began to voice concerns about Kami’s behavior.
Sure enough, when Kami was tested, she was globally delayed. She now qualified to receive state funded early intervention services, like her sister. Kami was around 11-13 months when she began receiving services.
For Shelly, this meant therapists coming to her home six times a week to provide services for the girls.
Kami’s diagnosis
Because of their experience with Kinley, Kami was taken immediately to see a geneticist. Once again, getting a definitive diagnosis would take many years. As a matter of fact, Kami was 11 years old when she got her official diagnosis.
In the meantime, she was classified under pervasive developmental disorder (PDD) and autism spectrum (AS). Later she would also be labeled with intellectual disability and impulsivity. In addition to testing positive for the TRIP12 gene variant.
The common thread in Shelly’s story
It’s safe to say Shelly could’ve never predicted all the unexpected twists and plot turns in her story. Those early years with the girls were hard. Shelly was learning to balance work and the needs of her growing family. Her life during this time was filled with therapies, testing and sleepless nights.
The question that comes to mind reading Shelly’s story is, how did she do it? Her plate was pretty full. She was a mom of two girls with unique needs. She was also a wife and working part-time outside the home. That’s a lot to have on one plate! Yet I didn’t hear any anger, resentment or bitterness in her story. Yes, there were moments of frustration. She even had moments of physical and mental exhaustion.
Yet, when I look at Shelly’s life I don’t see a person marred by all the twists and turns of her story. Instead I find a woman who’s filled with joy. I find a strong, loving marriage filled with mutual respect and admiration for one another. I also find two girls so loved and supported by their parents, they’ve grown into happy, confident young women.
Shelly would say all the credit goes to God, and she’s right. It was her relationship with Jesus that provided the firm foundation to withstand all the unexpected twists and turns. It’s because of Him she has hope, peace and joy.
The village
In addition to her hope in Jesus, Shelly also has a concept called village on her side. It’s a terms she repeats often. So much so, it’s woven throughout her story like a sparkling, shimmery ribbon. In fact, when I asked her how she managed it all, she said, “it takes a village”.
Having personally experienced a village, I know exactly what she means. Having a group of people come together to support you makes the struggle a little bit easier. It’s comforting to know you’re not alone. There are others around you, cheering you on and watching out for your best interest.
But in urban (and suburban) America, how many villages does one see? Or how does one even create a village?
In the next post we’ll learn what Shelly did to create her village.