Update 4/12/21: Today marks three years since my brother died. While my grief has evolved, I still miss this boy so much. Below is what I wrote a year after his death.
In just a few days, it will be a year since the hardest day of my life.
Losing my brother was absolutely one of the hardest things I’ve had to go through. Charles James Geheren died on his 13th birthday. It was very early in the morning. My mom was asleep in his hospital bed in our living room. My father was asleep on the couch. The hospice nurse was in the other room. I was holding his hand, talking to him and pressing the Morphine drip as needed to make sure he was comfortable in his last moments.
The house was eerily quiet. There weren’t any of his machines beeping. It’s something we all lived with for nearly 13 years. Charlie had a series of very severe medical issues. It’s a miracle he lived as long as he did. His twin brother died shortly birth according to medical records.
Charlie’s story is one of perseverance, strength and incredible love. I’ll start from the beginning.
Charlie was born as Martavien Day at John H. Stroger, Jr. Hospital of Cook County on April 12, 2005. The Illinois Department of Child and Family Services said in a report that he was born extremely premature at 26 weeks. Records show he was 1lb 12 oz. at birth. Later in life, we would nickname him “lunchmeat” to explain to my other brothers how little he was at birth.
He was abandoned by his mother at the hospital. DCFS records said “his biological parents have a history of substance abuse, homelessness and domestic violence.”
Records also showed six months earlier the state received a call saying Charlie’s birth mother was using drugs while caring for one of his siblings.
“It was indicated by other reporters that the minor (Charlie’s biological sibling) was not being properly cared for and that the family was homeless,” the reports said.
The parents were indicted for:
- Substantial risk of physical injury/environment injurious to health and welfare
- Inadequate clothing
- Medical neglect
Needless to say, it was awful conditions. The state took custody of his sibling in January. Our family actually had the chance to meet that child and he is a beautiful, thriving and healthy young boy with an incredible adopted family.
His parents had a long history of substance abuse. The state records show his birth mother’s drug of choice was believed to be heroin. Immediately when we was born, Charlie was in heroin withdrawal. The American Academy of Pediatrics research outlines a number of symptoms linked to neonatal drug withdrawal. It’s awful.
He was placed in foster care, then a medical group home, then to the hospital for surgery, then back to the medical group home until October 26, 2005. That’s when my parents, Mia and Bill, went to pick up who would become my third brother and the light of my life.
My parents don’t take enough credit for what they did by taking him into our household and what they would do for him over the next 12 and half years. They are both saints.
We discovered a lot when he came into my family. The drugs and premature birth did a number on him. Charlie was born with 95 percent brain damage. With that came quadriplegic spastic cerebral palsy (he couldn’t sit up or voluntarily move his arms). He was also diagnosed with cortical blindness, reflux esophagitis, a collapsing esophagus (which led to a trache being put in so he could breathe), a benign tumor, chronic lung disease, failure to thrive, microcephaly (what has been made famous with Zika), sleep apnea, a severe milk allergy and he had a hole in his larynx.
Most of this stemmed from the brain damage. Actually, upon researching his medical history, I learned there’s actually a diagnosis for all this: Perinatal Hypoxic-Ischemic Encephalopathy.
Perinatal hypoxic-ischemic encephalopathy (HIE) occurs in one to three per 1000 live full-term births. Of affected newborns, 15%–20% of affected newborns will die in the postnatal period… The outcomes of HIE are devastating and permanent, making it a major burden for the patient, the family, and society. — Journal of Biomedicine and Biotechnology
Needless to say, it was a miracle he survived.
Now, you must be thinking to yourself, how could he make such an impact on your life with so many challenges? Here’s how:
I wrote these down these three things when exploring my grief in the last year.
- Never stop smiling
- Always show unconditional love
- Stay strong
This is his legacy. He couldn’t verbalize these three rules to me, but they stayed with me.
A few hours after he died, I told our local newspaper this:
It’s so true.
Never stop smiling
Charlie did this constantly.
He would laugh and smile whenever there were loud noises, ESPECIALLY when my brothers (or myself) were being yelled at by my parents to go clean our rooms). That I think was his favorite. He would just belly laugh in the corner of the room. He was always so happy. See the left photo.
When I got the call that Charlie wasn’t going to make it, I hopped the first flight home from Sioux Falls, SD to Chicago. A quick 15 minute drive to the hospital, and I was in his PICU room at Lutheran General Hospital. He heard my voice and smiled. That will stay with me forever.
Always show unconditional love
No one listened to me more than Charlie. Sure, he couldn’t verbally respond, but he was my bud. He would listen to me vent as a kid, be a shoulder to cry on when I was sad and even was the first person I told was gay. I figured it would be pretty easy to tell him first. He embodied what unconditional love is and his smile told it all.
Up until the very end, he was stronger than anyone. With as much damage to his brain, it was actually challenging for him to die. Huh? I know, it’s a confusing statement. When he was pulled off the ventilator, it was expected he would die pretty quickly. That’s not what happened. It took all afternoon, evening and into the next day. The hospice physician said it was likely because his damaged brain stem had been fighting all his life to survive and it wasn’t going to give up quickly. She told me that if it were her or I in this situation, we wouldn’t have held on that long.
Charlie was up against the most challenging circumstances possible for a human being. He couldn’t breathe well, he couldn’t see, talk, hold his head up, eat or walk. But he was strong. He never gave up. He rarely showed he was in pain. He just lived life.
The day after Charlie died, my family went to his school. A lovely girl in his small classroom with special needs wouldn’t stop raving about how handsome Charlie was.
She also told me, “never forget he will always be your brother.”
At his memorial service, the funeral home was packed with former nurses, teachers, doctors, therapists, neighbors, family, friends and even his classmates. It was beautiful.
I learned that day how impactful this little boy was on so many people. I thought it was just my family who he touched, but I discovered pretty quickly that I was wrong. Strength defined that kid and it impacted others.
So, on April 11, 2018 at 11:59 p.m., we decided to celebrate that strength and gather in the kitchen to prepare a makeshift celebration for his birthday. It wasn’t just any birthday, it was the entrance to his teenage years.
We sang happy birthday.
My exhausted mother who was up for at least 48 hours, maybe more fell asleep in bed with him.
I talked to him. I didn’t really know what to say, except: “I love you” and “it will be OK.” Over and over again for hours. Until all of a sudden I realized one key fact, I said “Charlie, now you will get to see your twin brother. Isn’t it interesting how you entered this world with him and you’ll leave it with your other brother next to you?” and then he took his last breathe… holding my hand and he was gone.
The loss of my Charlie Bear has been very hard on me.
I felt guilt. I missed a lot of his last few years being away at college and the beginning of my career, but I got to be home when he needed his big brother the most — at the very end.
I also felt an intense amount of grief. I found some good books, went to counseling, decorated his grave for Christmas, lit a candle at Notre Dame Cathedral in Paris for him, leaned on my family and friends and just cried… a lot.
However, as this first year wraps up and I continue to move forward I take great pleasure in knowing he had an incredible life with an amazing family and team of caregivers. I couldn’t be more thankful for my parents in all this. If they didn’t foster and adopt this little boy, I don’t know where he’d be and I really don’t know who I would be. Charles James Geheren shaped me. He gave me empathy and that reason to smile everyday.
I will never, ever forget him, and I hope you don’t either.
I miss you, Charlie bear.
Your big brother, Michael.