His legs hurt most of the day. He said “They hurt pretty bad too…..but like I don’t even know what that means anymore…..” I looked back at him in the car and he had his head down and then looked up at me in the mirror and did a great fake smile. Rheumatology is supposed to reach out to me from Lurie Children’s Hospital to set up an appointment. I checked on that today. There may be something more to his testing positive for the ankylosing spondylitis gene. It all fits perfectly when we looked it up and discussed it with his local doc and his oncologist. Pain sucks no matter the where or the how. It just sucks.

by | Aug 30, 2021 | Updates From the Road

from Life with our little Super Hero Adler Bear https://ift.tt/3aDpcoP

by | Aug 30, 2021 | From The Road

from Life with our little Super Hero Adler Bear https://ift.tt/3mIhpzn

by | Aug 30, 2021 | From The Road

from Life with our little Super Hero Adler Bear https://ift.tt/3jtcQXy

I wrote this 6 years ago. I read it and I am crying. He’s so amazing still. Still. Thankfully, still. 🌈🌈🌈🌈🌈🌈🌈 My friend Carrie took this picture of Adler at school during lunch. She works at the school. I sometimes have to take a moment and look at him and through all of the PAIN and disease and really look at him and remember that I made him. He grew inside of me. He was made out of love and is being raised in love as well. For those that don’t know I wasn’t supposed to have a baby because of my heart but we wanted just one and look at him!!! This is Adler Bear Carris, our son! The boy who has a great laugh, an electric and contagious personality and who is one cool cat. He wants to go to Paris with me to sit on Jim Morrison’s grave and then to London to see anything David Bowie when he is 18. He wants to be Picachu from Pokemon for Halloween and loves bright colors and dreams about walking on the beach and loves superheroes. He also wants hair like Jimi Hendrix and has a pretend band called Hot Molly. He has imaginary friends but now real ones too at school. He loves his bed and sleeps with about 20 animals every night. He loves video games and wants to be a dancer, singer, artist or doctor when he grows up. And I don’t care as long as he does get to grow up!!! He loves puppies and kitties and babies of all kinds. He loves the moon and the sun alike and to be pushed on the swings. Uno is his new favorite thing and he he has probably 10-15 lava lamps!! He has better grammar than most adults I know and he adores poetry. He loves to eat green olives with a fancy tooth pic and calls me his best friend in life. He loves incense and hippie soap and he doesn’t like to wear pants!! He just loves so much stuff. He loves life and we love him for that. So, he is sooo much more than a kid with cancer, hydrocephalus and adrenal insufficiency and chronic pain……he is a little boy with a big heart, smart mind and flowing spirit. Bold As Love!!!

by | Aug 30, 2021 | From The Road

from Life with our little Super Hero Adler Bear https://ift.tt/3judwfg

I wrote this 6 years ago. I read it and I am crying. He’s so amazing still. Still. Thankfully, still. 🌈🌈🌈🌈🌈🌈🌈 My friend Carrie took this picture of Adler at school during lunch. She works at the school. I sometimes have to take a moment and look at him and through all of the PAIN and disease and really look at him and remember that I made him. He grew inside of me. He was made out of love and is being raised in love as well. For those that don’t know I wasn’t supposed to have a baby because of my heart but we wanted just one and look at him!!! This is Adler Bear Carris, our son! The boy who has a great laugh, an electric and contagious personality and who is one cool cat. He wants to go to Paris with me to sit on Jim Morrison’s grave and then to London to see anything David Bowie when he is 18. He wants to be Picachu from Pokemon for Halloween and loves bright colors and dreams about walking on the beach and loves superheroes. He also wants hair like Jimi Hendrix and has a pretend band called Hot Molly. He has imaginary friends but now real ones too at school. He loves his bed and sleeps with about 20 animals every night. He loves video games and wants to be a dancer, singer, artist or doctor when he grows up. And I don’t care as long as he does get to grow up!!! He loves puppies and kitties and babies of all kinds. He loves the moon and the sun alike and to be pushed on the swings. Uno is his new favorite thing and he he has probably 10-15 lava lamps!! He has better grammar than most adults I know and he adores poetry. He loves to eat green olives with a fancy tooth pic and calls me his best friend in life. He loves incense and hippie soap and he doesn’t like to wear pants!! He just loves so much stuff. He loves life and we love him for that. So, he is sooo much more than a kid with cancer, hydrocephalus and adrenal insufficiency and chronic pain……he is a little boy with a big heart, smart mind and flowing spirit. Bold As Love!!!

by | Aug 30, 2021 | Updates From the Road

from Life with our little Super Hero Adler Bear https://ift.tt/3aDpcoP
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