The last two years have been the most consistent, best childcare we've had since we lived in Denmark. We've went through our share of sitters for the boys. We considered reformatory school after not one, but both boys got kicked out of separate childcare settings. After yet another bad experience, we tried recruiting childcare through the local university.
And we hit the jackpot. We found a nursing student who was comfortable with Teddy's history of seizures (which is why he got the boot from one daycare provider) and his disabilities. She was willing to come to our house to watch the boys, which meant they had a safe, familiar environment. She was agreeable to taking them out into the community to parks, the children's museum, etc.
Throughout the last two years, she's watched Teddy reach milestones we weren't quite sure he would hit. She's encouraged his progress, reported his new accomplishments to me and taken pride in his skills. Teddy's face lights up whenever she enters our house, addressing him as Mister. Teddy routinely tries to leave with her at the end of the day, wanting to continue his fun with her.
She's been one of a handful of people who've successfully watched our boys in the evening and has become familiar with their bedtime routine. She's administered Teddy's anti-seizure medication, monitored his temperature and ensured his safety ... as much as possible because, after all, he is Teddy.
She's played games with AJ. She's endured hundreds of questions from AJ, along with tantrums for saying no to his use of tablets or television. She's played outside with the boys at different parks. She's taken them out to eat (no easy feat by yourself). She's fed their love of ice cream (literally).
She's taken Teddy to the waterpark by herself, lugging him and an tube up the slide multiple times and redirecting him from the deep end of the pool, which is of course his newest fascination. She's recruited another friend to accompany her to the waterpark, so she could take both boys.
She's always been willing to help out when we needed it, whether for me to escape to work or for us to escape using respite. She's been flexible to come early and stay late. She's taken Teddy to his horse therapy appointment an hour away, with AJ in tow. She's taken AJ to gymnastics class with Teddy in tow.
She referred another amazing person to us who became our second childcare provider. Combined, they provided my mom with the support she needed (during finals week of all times) to watch our boys for a week while we were in the Virgin Islands. They made that experience doable for my mom, which means another trip without the boys remains within the realm of possibility.
Yet, she had the audacity to graduate from college, pass her boards, become a RN and accept a pediatric nursing position across the state. I'm so happy to see her pursuing her dreams and know she'll be a terrific nurse for any children she encounters, regardless of their needs.
At the same time, I had a hard time not crying yesterday when she left our house for the last time. She made the day as special as possible for the boys, taking them to AJ's favorite restaurant (Buffalo Wild Wings) for lunch and then to the store to pick out goodbye gifts from her. I can't help but think of the Dr. Seuss quote:
“Don’t cry because it’s over, smile because it happened.”
Now, to brace myself for our other sitter's last day next month ...
This is our family's journey with the rare PIGN genetic disorder Multiple Congenital Anomalies-Hypotonia-Seizures Syndrome 1. When our son was diagnosed in November 2015, we were told he was the 15th documented case in the world. We've discovered more affected individuals since, but it's still an extremely rare and unknown condition since its discovery in 2011. Our hope is to create awareness of the disorder and foster a sense of community among those affected by the disorder.
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