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.
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.
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.
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.
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.
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.
I still am not a salesman. I will never be the person who tries to push products. It's not me. It'll never be me. I won't show up on your doorstep asking if you are satisfied with your vacuum, encyclopedia collection, or even your health even though that is my passion. I am the person who will share my journey and I'll be 100% honest about it too. Success or failure and positive or negative- I will share.
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.