When you have come to the edge of all the light you have known and are about to step out into the darkness, FAITH is knowing one of two things will happen, you will have something to stand on or you will be taught how to fly.
Hi! My name is Jacob David. My journey began during the 22nd week of my mama’s pregnancy. I was diagnosed with spina bifida and hydrocephalus during an ultrasound and it was then that the craziness began!
I was born in Rochester, MN on August, 8, 2002. I spent 17 days in the NICU. Mom and Dad took me home only to return a few short weeks later. The doctors discovered I had a severe case of meningitis, which also infected my blood and the ventricles in my brain. The infection was so severe, I stopped breathing a few times on September 22, 2002,and almost died. I also developed abscesses in my brain. If this wasn’t hard enough, my mom and dad were told I had calcifications on my brain and that most of my brain was missing. I was given a 0 % chance of surviving. If I did survive, I’d be in a vegetative state. It was the hardest thing in the world for my mom and dad to go through, but their faith in God is what led them to make the right decisions for me. God literally worked a miracle through me since there is no medical reason I am alive!
As a result, I have epilepsy, but have been seizure free for a long time, cerebral palsy, Arnold Chiari Malformation, neurogenic bladder and bowel, tethered cord and syrinx in my spine, and extreme developmental delays. I also have cortical visual impairment, which means my brain has problems processing what my eyes see and auditory processing disorder, which means I am considered deafblind. I don’t do a lot of things like other 13 years olds do, but I do a lot of things the doctors never thought I would, like smile, laugh, and interact with others. I love to jabber A LOT and do many silly things to make people laugh at me or to get out of doing work. Pretty smart huh? I don’t have sensation below my knees, I am unable to roll, crawl, or walk. I even got a goofy shaped head out of the deal, but it adds to my charm I think!
I have had 21 surgeries so far. I have a feeding tube. I had a bladder augmentation and a Monti procedure which placed a stoma on my belly to catheterize my bladder through. I also have a MACE stoma in my belly button to flush my bowels. I had my Chiari Malformation decompressed. I nursed until I was 19 months old. Unfortunately because of the Chiari Malformation, I began aspirating on food and now have a GJ tube, but my goal is to someday return to being an eating machine!
I was in the Birth to 3 and preschool programs, and graduated from Viking Elementary. Now I am in the 8th grade at Holmen Middle School. I have PT, adaptive PE, speech, vision, and adaptive technology. I go to school all day. I LOVE IT! I also have lots of doctors and nurses in La Crosse and at Mayo Clinic, Rochester, MN who think I am pretty cool!
I live with my mama Karla. My daddy Dave went missing Sept 22nd, 2012, 10 years to the day that I almost died. I have 2 bubbas, Michael who is 22 and Devin who is 16. I also have an adorable nephew Zayden who is the cutest 2 year old ever! I also have a baby niece named Anastasia. My brother Michael has a wife Emma who I love SO much! My family knows I am a special gift from God, and He has given them the strength to take care of me! Please come back and join me on my journey!
On November 20, 2015, Jacob completely his earthly journey. He was 13 years, 3 months, and 13 days old. All of his brain complications eventually caught up to him, and his brainstem shut down after the pressure in his brain was too much for him to handle. May the joy he brought to all of our lives never be forgotten!
Philippians 4:13
I can do all things through Christ who strengthens me.
Journal
Sunday, March 6, 2016 5:36 PM CST
It's been way too long to have not posted here, but I don't think there are many people reading anymore. At least the ones who are, can know what is going on.
Jacob earned his angel wings on November 20, 2015 at 5:58 PM. It was a beautiful passing. Jacob had a shunt surgery the week before to repair a blockage and was doing okay that week. His right eye was turned upward and I knew things weren't good there, but the doctor said to give it time. Thursday, I had gone to an appt and then over to my boyfriend Tim's when I got a call from the nurse. She needed to call 911. Jacob's oxygen went extremely low, and he was intubated at the house. He got to the ER and then was flown by helicopter to Rochester where Mayo inserted an emergency drain into his brain. His lateral ventricle in his brain herniated and put pressure on his brainstem. His pupils were already fixed and dilated and he was in a coma. There was a slight gag reflex, but no other reflexes were left. It was time to let my boy fly.
Oh what an amazing journey this has been. Saying I miss him doesn't even scratch the surface. He was my sidekick, the other part of me. I was his voice, he was my anchor. He was the reason we all smiled. He was the one we fought so hard for and boy, did he fight to live. I can see the scene in heaven of Jacob running to Jesus asking him if he did a good job. Oh you sure did Jacob.
Things are not the same and won't ever be again. We are starting down a new path with kids who are grown up and no more medical ICU in the house. 3 days after Jacob died, my granddaughter Anastasia Kaylynn was born. Emma missed the funeral. Anastasia is beautiful. Then there's Zayden. Man, that boy has his grandma wrapped a hundred times around his finger!!! Devin's a junior, working at Chuck E. Cheese and got a car. He is the kindest, sweetest kid. Michael and Emma are currently living here to help out. We all get along great. It feels good to be surrounded.
Love to everyone. Let me know you stopped by. Grief is one thing I know too much about...first Dave and now Jacob. One day at a time....
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