CMV Spotlight: Katie and Kaden
Welcome to Sunshine and Shattered Dreams! I am so
glad to have you.
My world for the last few years has been advocating. The only
story I have been sharing is mine, which is not the only one out
This year, I have decided to use my platform to shine a light on
the warriors who fight CMV and the parents who advocate
Samantha: I'm so excited to have you, to share your story. Please introduce yourself and your child. Tell us a little about your
Katie: My name is Katie and I’m 34 years old. My 14 year old son, Kaden, has cCMV. We live south of Seattle, in Graham, WA.
Samantha: Before your child’s diagnosis, had you ever heard of CMV, how much
did you know?
Katie: I had no idea about CMV. I hadn't heard my OB say anything about it while I was pregnant.
Samantha: How did your journey begin? What was going through your mind?
Katie: I moved back home with my mom near the end of my pregnancy. I needed a new OB so I made an appointment and was seen. The new OB was very concerned because at 7 months I had lost about 15lbs and was really sick, so they set me up with a non-stress test. Not long after beginning the non-stress test they unhooked me and said to drive immediately to the hospital to be induced. I headed into Albuquerque, NM to have my son. I was being induced because they saw how small he was, my blood pressure was shooting up, his was
going to low, and there wasn’t enough amniotic fluid. I was in the hospital for 3 days without any progress so they decided on a C-Section.
Kaden was born on January 1, 2006 weighing 3lbs 10oz.
He needed oxygen after he was born, was too small for his gestational age and his cry sounded like a cat meowing, so they took him to the NICU. One of the doctors did a random CMV test and it came back positive on his second day. That started our CMV journey.
All of the NICU doctors came over the next time I was in to visit him. They brought dividers to make a more personal space outside his isolette to talk about what I could expect for his life. There was nothing good... no walking, talking, seeing, hearing. They kept going and going with the list of disabilities he may experience and I just zoned out. I sat there holding him and staring at his face... I couldn’t hear them talking anymore. Then they asked if I had any questions; I had a million questions but couldn’t ask them, I was too afraid. So I said no and hoped I would learn more when I googled it at home.
Samantha: Tell me a little more about Kaden's conditions associated with CMV.
For his age, how is he developmentally?
Katie: Kaden has been very blessed! His early years were incredibly hard but the older he is getting, the better he is getting. He has sensorineural hearing loss on both side and uses bilateral Cochlear Implants. He has cortical vision impairment (CVI), periventricular leukomalacia (PVL), brain calcifications, had brain bleeds at birth, microcephaly, seizures, tremors, non neuro typical ADHD, sleep problems, mixed muscle tone and visual & hearing disturbances. He hears and sees things that aren’t there. He was listed as failure to thrive (FTT) at birth and eventually needed the assistance of a feeding tube (Ng’s, PEG, MicKey button). He vomited constantly and has slow motility due to the muscle tone. He had food aversions and has been tested for Autism but since he was trained to lip read since he’s deaf, he didn’t qualify. He pronates and used AFO’s until he was 7. He used an adaptive chair for many years.
He is developmentally delayed but since he’s 14 they no longer keep track. Kaden has
frequent muscle pain and doctors have said he will have arthritis in a few years. Despite all that, Kaden has been in karate for the past 5 years and is currently a black belt. He also started playing soccer a few years ago and was playing with the local soccer league. He made his middle school varsity soccer team and scored the most goals of their
Samantha: What has been the hardest moment for you as a mother?
Katie: Kaden has been through a lot of painful medical things. He’s had 6 surgeries, I’ve lost count of medical tests and procedures, and was in therapy for most of his life with PT, OT, and Speech. All of those are hard to watch as a mom, but for me, the hardest thing is to watch him struggle mentally. When he sees things other kids are doing at his age and he struggles, he thinks it’s because he is dumb. He gets lost in how hard everything has been for him but I don’t let him stay there long. I want him to associate those things with strength, adapting and overcoming. He has done that flawlessly but it come with a price he doesn’t let many people see.
Samantha: What is your greatest hope for Kaden's life?
Katie: My greatest hope is that he continues to overcome and he grows up knowing he has purpose. I want him to know that God made him different and that’s okay; different doesn’t mean wrong or bad. I also hope he is able to inspire others to do the things they think are impossible.
Samantha: This journey through special needs parenting can feel extremely lonely, even when we know we aren’t alone. There is often no physical closeness to a mother going through something similar. Where do you turn to fill your cup? How do you take care of yourself?
Katie: When Kaden was little, I was a single parent in my early 20’s. I didn’t have many friends and was pretty much alone. I was so set on making sure I did everything he needed that I forgot about myself. Around 2011 I realized that I had severe depression and after seeing my doctor was prescribed an anti-depressant. There wasn’t much I was doing other
than taking care of him because he needed help 24/7. When his health started to improve I started taking photos with a little camera I had. I continued and got pretty serious about it in 2017 and now have regular clients!
Samantha: A life filled with hardness can teach us some amazing lessons on love, kindness, empathy, and joy. What are some lessons that you have learned through your journey that might be helpful to a mother who has just begun?
Katie: Kaden has taught me so much; he has taught other’s as well. He’s taught me to celebrate all the small victories. I never thought watching someone eat food would bring me such joy or seeing someone walk with no help would be an inspiration. He’s taught me to never give up and to keep trying. Kaden has a special light about him that encourages the
people around him.
Samantha: What is a quote, scripture, prayer, or piece of mediation that you would like to leave us with today?
Katie: My favorite passage in the Bible is John 9:1-3 NIV.
“As he went along, he saw a man blind from birth. His disciples asked him,
“Rabbi, who sinned, this man or his parents, that he was born blind?”
“Neither this man nor his parents sinned,” said Jesus, “but this happened
so that the works of God might be displayed in him.”