Daughter of Member Bonnie Johnson
“We are all just walking each other home, so put one foot in front of the other and watch for the angels who walk among us”
What I’ve come to realize is, as I learn my new normal, my daughter learns her new normal; as I grieve over the loss of my daughter who I knew for 37 years, my daughter grieves over the loss of “self.” At the same time, we are learning a “new normal” mother/daughter relationship.
Brain injuries are murderers, for while they allow you to keep your intelligence, cognitively and physically, you are very challenged; if not broken and vulnerable to the wolves. My daughter is broken.
On October 22, 2012, our sky fell. I died inside as my daughter lay in a coma blown up twice her petite size. When she woke, she was paralyzed from the neck down. She couldn’t speak. Thankfully within a month, she was moving; a few weeks more, sitting up. I was the lucky one when I picked her up to put her in her wheelchair, she was no longer dead weight. She just stood up. Before this, within a couple of weeks, her voice came back. It was very slurred yet she was talking. Today her slur is doing so much better though she hates it. Who could blame her?
I had lived in Hawaii at the time of my daughter’s injury in southern Cal. The first time we spoke all I heard was a long whisper: “Maaaaaaaa…” I crashed after the call, fell to the floor as if hit by a semi, never to be the same. Once I was cleared for a new diagnosis of epilepsy I was allowed to go to Cal. It was six weeks after my daughter’s injury. I left a whole apartment, all my belongings, knowing I’d be homeless once I got to California. I had $175.00 in my pocket. I didn’t care. My daughter needed me. I needed to be there for my kid.
I was with her each day at the hospital from 7 am to 830 pm for seven months. I cried every night in the gym as I laid my body down on a mat along with 300 other people from all walks of life, all with different levels of sanity; myself included.
When I finally reached the hospital, my daughter was twisted up like a pretzel, her face with the look of a toddler. She had a huge smile but not hers. It was the smile of a baby’s. How could this be? My beautiful daughter?? A wonderful mommy of a four-year-old son? How could this be true? A gorgeous woman with a huge heart? How? NO!
It’s been five years now, a lot of pain during this time period, many mistakes too as I had to wing it. I had to learn a crash course of TBI’s. I hid from reality. It was too much loss; too much reality. I was lost and exhausted. It was too hard. I stuffed my grief so to be able to take care of my daughter. The pain slipped through the cracks though, causing chaos and more pain. I had unpleasant awakenings plus depression and fear. My daughter grieved with such severe depression. My beautiful daughter will never be the same.
We did have many many moments of unbelievable laughter; PBA or not, it was fun. We felt stoned. We were not.
I took care of my darling daughter for two and a half years as I was sworn at, kicked, bit, slugged, and abused verbally and hurtfully. My daughter had never said a swear word to me in her life. I believe if she was able to walk those first two years, we’d both be dead. She soon turned her abuse on herself. She would punch her face. Hard. She’d pull out locks of hair, scratch her face bloody and scream, “Please mom kill me.” I’d be holding her, to keep her as safe as I could, as we waited for the paramedics. I got pretty battered up myself. I didn’t care. It was so painful emotionally.
I had been taught to walk out of the room when she went into a rage; come back a few minutes later with a different subject. Because of the short term memory loss, my daughter would forget almost immediately what she had yelled at me about. Soon she caught onto this though and it just pissed her off. It was different when she turned her rage inward. My daughter wanted to die. I wanted to die.
After a year, I was told I too had two brain injuries. I said, “Thank God I’m not crazy,” for that’s how I felt. I knew something was wrong. I didn’t know it was two brain injuries though.
Five years prior, I had fallen on my right eyebrow shattering the whole right side of my face, which now has Titanium plates. I have one holding up my right eye. I also died twice from two cardiac arrests. Along with epilepsy, I was a mess, trying my best to be the “wonder woman mother” as both my daughter and I were destroyed. I just kept working on keeping us above water. Slowly I sank. In my mind’s eye, I saw myself, with one hand, hold my daughter above the water as I was already below the surface.
My daughter is now in a different state. I haven’t seen her in three years. She’s in a TBI REHAB. Hopefully, she will be coming home soon; not soon enough for she needs her son; her heart. I need my daughter; my heart. I haven’t the funds to see her. If I do a Gofundme, I lose my SSDI. I just want to hold her. I just want to hold my kid.
I’m very angry. I’ve lost my faith. I live in anger, hate, and depression something as a kid I worked so hard on not becoming when I was a young adult. Baby steps. It has to be all about Baby steps. Anything larger than that is sure to bring destruction.
Friday I talk with my kid. I’m so excited but it’s never long enough. We’ve been through the wringer in so many ways for five years.
A month ago I fell on the same side of my head I had five years prior. I had a severe concussion. I said to the doctor, “Please be honest, I have another brain injury right?”
He said, with his head held down, “Yes, I’m so sorry dear.”
I’ve really noticed a difference this time compared to the last two times; both cognitively and physically. Yet I would still change places with my daughter in a NY minute!
TBI’s don’t take away our smarts. My daughter is so intelligent she gets to FEEL ALL HER LOSSES: loss of being a daily mommy, loss of all her friends, including two of 26 years. She gets to FEEL the loss of feeding herself, dressing, showering herself plus because of the weakness in her back she isn’t able to walk. For now. She gets to feel the loss of independence, loss of making her own decisions, loss of being able to go to school to be an RN she would have been. My daughter gets to feel the loss of work, loss of driving. With severe tremors, my daughter lives “as if” in a straight jacket. I agonize over my kid’s agony. We live in a Stephen King novel.
I feel as if I am in the middle of the street; suffocating, and no one can see me dying.
My mom came from the Holocaust. I use to say she was the strongest woman I have ever met. I must say now, it’s my daughter who amazes me with her determination; thrive to work on herself getting better. Her strength and her class are endless. She’s so very strong. While growing up she never thought she was. After the injury, now she knows how strong she really is.
I’ll Never leave my kid; I’ll never give up on her. Despite Anything, I will always advocate for her. Better days ahead, I pray, as I suffer from intense grief along with my own cognitive struggles from three TBI’s. Baby steps.
I see you, my love. I feel you, my beautiful daughter. Your pain is understood by me. I’ll never leave you. Your heart is still intact. Your intelligence is still intact. Your beautiful smile will never leave you. Your heart will always soar.
Our connection is undeniable.
Please wake up.
As I learn my new normal, as my daughter learns hers, while I grieve over the loss of the daughter I knew for thirty-seven years, my daughter grieves over the loss of “SELF.” At the same time, we both are learning a “new normal” mother/daughter relationship.
-A MOTHER’S LOVE-