I’m never quite sure how to respond to questions about Henry being our first child AND sporting an extra chromosome. Is the question geared towards the extra time and effort for appointments, therapies, and forward progress? Or is it on the experience as a whole? How did we do as new parents with extra in... Continue Reading →
The internet is down?!
It happened. A rainy, messy day. The internet was down. My hotspot was not working. We made it to lunch before the meltdown. The blocks, books, balls, cars, puzzles, and magna-doodle had been played out. We even made a fort.
Is it hard always taking him to the doctor?
And today is post op day 6. I can 100% tell you that I'd rather have a whole extra year of newborn care with feedings and changes at all hours of the night than to do postoperative care for another week. We are beyond exhausted. He's cranky. He's sore. He's clingy. He whines. He cries. He's pitiful. He refuses to eat much. When he swallows he does an exaggerated gulp and cries.
Aren’t you worried y’all will never have a real retirement or time alone again after having a child with Down Syndrome?
My thoughts never really went to the topic of alone time. That almost makes me giggle. There will probably almost never be a time for any mom to have “time alone.” I even think about myself and my own mother. If I’m within 100 feet of my mother I will follow her everywhere and no bathroom or door has ever stopped me. Maybe that’s more a daughter thing. We will see.
How do you find community support?
I thought it would be hard to find real life non-online community support. I had never known anyone with Down Syndrome and I assumed it would be very hard to find families and resources. I was nervous about meeting others. I still didn't want to be swayed in my determination that Henry would be uniquely him. Unlike anyone else. I didn't want to see limitations... I wanted to see limitless possibilities for him and I was afraid meeting people would damper my excitement.
Do you guys ever see each other?
A job is just how you sell your time. An employer buys your minutes, hours, days...Our days here on earth are numbered and we sell them to the highest bidder until we are 65. That’s if we are lucky.
Where is your son with milestones?
There is a very wide age range that can be seen with hitting typical milestones- for instance, children with Down Syndrome can begin walking from 12 months - 6 years of age. I cannot tell you the typical range for any milestone nor do I want to, but we are proud of our son's milestones. All we focus on once he has mastered one milestone is what is the next developmental milestone- not a timeline based on his age. Every child has a different journey with their development and will end up at the same finish line.
Do people with DS all look alike?
I see James and I in him daily in his features and expressions. He can make some extreme facial expressions that are without a doubt exact replicas of ones his daddy and uncle make, and sometimes I can’t help but laugh. We never ever wonder what the boy is thinking. I’m almost positive he’ll never succeed in poker.
Like a lot of us, I've always carried nervousness, anxiety, worry, and fear in my gut. My stomach will never fail to go into total anarchy anytime I have any of those feelings. I get sick when I worry. Physically sick.
Will his options be limited to special ed?
The myth is that segregated special ed programs are the only option for kids with Down Syndrome. Kids with DS typically do best in an inclusive learning environment, and typical kids do best when they learn about diversity, kindness, and friendship at an early age. Inclusive classrooms teach and benefit all kids.