a normal Saturday… shiya pushes a stool over to the counter and drinks salad dressing from an old bottle that was waiting to be rinsed out ayrie and shiya play doctor which involve ayrie leading shiya around the house by a string around shiya’s neck which is, apparently, a stethoscope more to come 🙂
MEEI doesn’t have the nicest facilities (failed elevators, impersonal hallways, old bathrooms) but Ayrie loves it! Check out Ayrie posing in the hallway: Notice his bandaged IV site that he held up gingerly all week. By the time he was discharged it was almost as though he had forgotten how to use his hand!
i always know that ayrie’s voice is about to be completely gone when I am driving and I can’t hear him talking to me in the back seat. I try so hard to hear him but even when I try to read his lips in the rear view mirror I can’t always understand what he’s saying to me. often he has to repeat things 4 or more times. but bless his heart, thankfully he repeats himself over and over again without showing frustration or annoyance. last night we were driving…read more
sometimes shiya get confused about where he ends and ayrie begins! Recently he was looking at a photo of Ayrie and repeatedly calling him Shiya. Sometimes when Ayrie is hiding he says ‘where’s shiya?’ and every time I ask ayrie to do something, shiya does it two as though by addressing ayrie I am also addressing him by default. if only ayrie could appreciate how doting his little brother is!
ayrie told me “you are my whole mom in the best world!”
As you may or may not know, my son Ayrie is 3 years old and has as aggressive case of Recurrent Respiratory Pappilomatosis (RRP) and has had 15 surgeries in 17 months to remove benign tumors from his larynx. We have tried all of the treatments available to us in two major cities, and decided to travel to Boston to meet with Dr. Hartnick to try an experimental but promising new treatment. If the treatment is successful, we will slow the growth of the tumors on Ayrie’s vocal cords, lengthen…read more
Ayrie and I were lucky to spend a few days in New Hampshire after his surgery in Boston. We were even luckier to be able to connect with a lot of friends and family. It would have been perfect if Shiya had been there with us!
it’s amazing how quickly it happens! today we were on campus so I could show everyone where my new school building is and we stopped for lunch. the boys were making a mess and not staying in their seats and I was getting soooo frustrated. sometimes i want to enjoy my lunch, you know? but in the back of my mind i was also feeling thankful that this was my biggest worry at the moment… their age-appropriate behavior 🙂 we also went to the farmer’s market today. what a great…read more
my two companions, hope and normalcy. no matter what happens or how far they stray, they always come back to me.
Emily told me that she thinks it really hit Shiya today that Ayrie and I aren’t here and he’s unsure about what’s going on. I guess he climbed up to the highest point on the playground and yelled out “MOOOOMMY!!!” And at JC Pennys he was knocking on all the doors calling out “Ayrie, where are you?”