In medical literature, babies with Trisomy 18 are "incompatible with life." Our precious son, Aaron, defied the odds, not only living, but thriving and loving his life. He passed away 13 years, 6 months and ten days after his birth. This is an effort to share his joy in his journey. Like the little purple pansy, he was tiny, but strong and still brightens his corner of the world.
When Aaron was born, before he was born, we decided that we were not going to do anything "heroic." We didn't want to "torture" him.
But when he was born not breathing, we knew we had to try to resuscitate him.
Quickly brought around, our little guy was transferred to the NICU where he let us know exactly what was and what was not okay.
Arterial lines? Feeding tubes? Labs and echos? No problem.
A diaper change? No thanks! I seriously told my one-day-old baby that those were just part of life and he needed to suck it up.
And so time went on. After a harrowing day six and seven of life where he chose this life over death, he improved steadily and came home at 16 days old.
And so life continued...
1 Year Old
Two Years Old
Three Years Old
Four Years Old
Five Years Old
Six Years Old
Seven Years Old
Eight Years Old
Nine Years Old
Ten Years Old
Eleven Years Old!!!
The past year has brought a lot of new experiences and challenges. A pandemic and lock-down. School at home, and then back in the classroom with many precautions, including severe restrictions on where he could have suctioning and other life-saving cares.
Nurses who wear masks the whole time they interact and no church attendance for him.
Looking forward to being able to get his vaccine, hopefully this fall.
Aaron's heart and lungs continue to deteriorate. We pray they can hold out much, much longer. He sleeps more than before, but he loves to interact with family and watch movies.
He loves science and books and art. Isn't much into writing though. You know, kinda like most fifth and sixth grade boys.
Mostly, he's ours, our son, brother, grandson, friend, teacher. He is as much our ministering angel as we are his. Maybe more.