On November 18 2009 at 4:02 am William Alan Bartosch was joyfully welcomed into our family. He weighed in at 7 lbs 9 oz and 20 in long. We were stunned to discover that he was born with Trisomy 21, or Down syndrome. We love him unconditionally from the top of his toe-head to the tips of his toes. We know that this diagnosis will not define him. He is a happy, healthy little boy that just happens to have an extra chromosome.
Follow us on this unexpected and exciting journey as we learn how to live life Will's Way.
Will had a great weekend at the lake! He really had fun playing in the lake this year especially now that he can walk. Papa even made a slide for the seawall that Will and his cousins enjoyed. Here Will is having fun in the shade on the raft and in the baby pool.
Will and Lillian are 'sharing' the sandbox. Not sure why they have to be in the sandbox to play with it, but they both insisted on it! They are not necessarily enjoying each other's presence:)
Will's ear tube surgery went well today. He got two new tubes. He was grouchy and wobbly afterward but after he drank some juice and ate some veggie straws, he fell asleep watching Signing Times. We hope these are his last tubes!
Will can say 'Dada' and 'Mama'. He says 'no', 'more' and 'all done'. You wouldn't know them if you heard them but Ron and I do. Especially when he pairs it with the sign. But Will's first, official, intelligible word is 'hot dog'. I am thrilled but can not believe this is his first real word! Since Ron and I are moderate vegetarians (meaning we don't eat a lot of meat) this is ironic and also a little sad. I swore my kid was not going to eat hot dogs and chicken nuggets everyday, but since he really only eats those, veggie burgers and nutella sandwiches, I guess I shouldn't be surprised!
I am a bit late in posting about Mother's Day but I did want to make note of what a nice and memorable day it was. I got some nice gifts and spent a nice day with my mom and family and Ron's mom for a bit too. I think it is nice to be honored on Mother's Day, but I think Will deserves some of the thanks as well.
Will made me a mom. He made me a different and yet better person. And since I am currently reading Kelle Hampton's book 'Bloom', it is hard not to use some of her words here. He has opened my eyes and expanded my world. He made me an advocate and helped me to be more patient. He has challenged me and stretched me to my limits at times, but ultimately made me stronger.
Some people talk about losing their identity when they have kids, but I feel like I became more of myself. He made me see things in a different way. When Will was born, it became much clearer to me what is REALLY important in life. And that everything is a matter of perspective.
It is hard to believe that such a ornery little boy can do all that...but he did!
For the most part I would consider us a 'normal' family. If there is such a thing. Like the woman on the World Down Syndrome Day video said, 'Normal is a setting on a washing machine'. We have typical days that one has with a toddler, with all the typical struggles. We just have a few extra hurdles. For instance, we spend a LOT of time at doctor's offices. Mostly for check-ups...not because Will is sick. Which also means we spend a LOT of time in the car on the way there for the record. He regularly sees his pediatrician of course, but also a speech therapist, endocrinologist, ENT, audiologist, opthomologist, goes to both the Cincinatti and Columbus Ds Clinic for check-ups, is waiting to get into the pediatric dermatologist and is starting up occupational therapy again soon. So since it is part of our life, I thought I would share some recent pictures of Will at the ENT.
Waiting patiently but not happy about being here. When Will sees tables with paper and adults with white jackets he knows what is up. Just getting him weighed is a struggle!
Poor cousin Lillian gets dragged along too. Will and her are 'sharing' the book.
Lily won! That girl can hold her own!
What happened next I have no pictues of, but I can tell you it wasn't pretty. The ENT had to scrape and suck out both ears, while a nurse and I held him down as he screamed bloody murder! I was sweating and my heart was racing, not to mention breaking. In the end, the doc couldn't even get his right ear tube free of gunk and so he is going to have to get a new set of tubes anyway:( He screamed so hard he has broken blood vessels all over his sweet little face. And afterward as I was comforting him, he looked up at me in between sobs and mumbled something very matter-of-fact and then went back to sobbing. I am not sure what he said but I am almost certain there was a cuss word in there!
Will is one tough little guy though. He endures more than most adults would. Plus the frosty afterward always makes it better:)