As I approach my truth from an entirely different perspective, I’ve realized how much I overcame from the beginning. The very beginning. I had always known that I had survived inside my mom even after she lost my afterbirth during her 6th month of pregnancy. This is also known as Placental Abruption. I’ve always known that it was suggested I may be born physically and mentally handicap. I later learned what my dad and grandma had been told by the doctor. I’ve always known that I was lucky to have been born into this world at all. There’s an overwhelming sense of peace in learning what I hadn’t understood before in the “could have been or should have been” aspect of me. I always knew I was different from all the kids or adults I had ever known. I’ve always been quite quirky. My mom had always referred to me as perfect. She would say it to me over and over again as I grew and she would tell others that I was as well. It was a standard no one could live up to. In my 20’s I told her to stop saying that to me. I never had any leeway for mistakes and my personality type while A became mixed with other types and traits. My mom and I were extremely close when I was little and my dad was a hard father. I was always held to expectations I never thought I could reach. Both of them couldn’t have raised me any better. I love them for that. I was born seemingly fine, outside of any hard defects and was full term. I was a forceps delivery. I understand now why she told me how perfect I was. I would tell my “different” baby that too. I knew I was born with arthritis and ailments of the neck/spine, but I really didn’t know myself different in that aspect because being born a certain way becomes you. I’ve always had hearing loss, but again because I’ve never been able to hear any other way, I don’t know it to be unusual. My tone of voice as well as the tones I hear are unique. The only time I can tell my hearing is off a little is dependent on frequency and vibrations around me. Sometimes I get louder when sounds are louder. My own voice becomes distorted in my ears by pitch around me. Second grade or about 6 years old is when we learned about my hearing loss. Before that while in the first grade and at another school, I can still vividly remember having to go to speech therapy because I didn’t talk right, or pronounce words correctly. I was a little slow. In that I mean that I was delayed in some learning abilities yet I was also extremely bright at the same time. I was wearing glasses in my second grade photos. I woke up one day in that same year and never needed them again until prescribed for the second time when I was in my early 30’s. I was reading well by the time I was 5 and writing poetry and stories by 7. My ability to walk when I first began was a bit off. I didn’t know that until I listened to my mom tell Dr. Ed Glaser of Sole Supports and the Gohl Program while in Tennessee a few months back. I can still remember my pediatrician always messing with my legs even when my sister didn’t get her legs tested? at our checkups. I’ve always been drained of energy. I’ve always slept too much. My normalcy wasn’t consistent, but neither was my little impairments. Tiny jerks, dozing, sudden lapses, momentary confusion, knowing to go left, or being directed to, and starting to go right. Breathing has always been a problem for me. Not because of any direct lung issues but because of forgetting that I’m suppose to.
This past week I had another Pulmonary Function test. I was asked if I was born premature, I said no. The question was asked in regards to Central Sleep Apnea and the high amount of central events that my last sleep studies revealed from 2012 and 2013. 51 in an hour. The events aren’t recorded as an episode unless one doesn’t breathe for either 6 or 10 seconds at a time, I can’t recall at the moment which for certain. I had 28 Obstructive events in the same hour. I was placed on an Auto Servo Ventilator by RESMED/Philips. The exact model is here. I quit using my breathing machine some time ago, after my decline in pain management.
I’ve had the aches and pains all my life, but I couldn’t show it. I learned to disassociate myself with anything disabled because I was able. So I held it.
It’s been quite a journey and all I know for certain is that I am product of fetal brain damage, I haven’t been able to breathe since inside my mother and I doze/dream/sleep/awaken different than most.
My mom didn’t do anything wrong in her pregnancy in regards to each reason that can cause CP. There are only 2 that would apply to her as a cause. 1. Multiple pregnancies (carrying more than one baby) and 2. Injury (as in a car accident, etc).
In a recent Facebook post I said
Twinkle VanFleet
“I never believed that disabled children (as you will) should be treated and raised disabled. I believed that they should be nurtured and supported to thrive, loved. I believed that they didn’t need the world on them to judge them. I believed from somewhere deep down inside that “and I posted this to my own son when he was diagnosed finally with a birth defect” I said “Go on as if you never knew you had it”. As I get closer to my truth, I understand why I have those beliefs in me. And I’m okay that.
You’re baby can’t crawl? Don’t put the toy closer, make her/him reach for it. I promise you, most babies will. You’re teenager need a wheelchair, don’t! As a parent you want to ease them, you’ll also cripple them further. You’re kids can’t play sports? Yes they can. It doesn’t matter how slow they are, might be, could be,, it matters that they are playing with everyone else.
I’m not talking about the babies that had to have the wheels in the first place. Had to. Feeding tubes, hard physical/mental. I’m talking about everyone who becomes disabled as a result of not just the illness but the parents who bring them up that way. I was blessed. So blessed that mine didn’t. And I never knew. I didn’t want to know, as it lingered inside me, but you know what? I came up from places no kids will never be. Most babies born like that, or I was, haven’t ever reached my potential. Lauren Wood you were a hard daddy, who loved, but didn’t ever let me be anything other than what you believed me to be, Melody Wood Tresca you are a loving mama, the both of you did right by me. I love you for that.”
I never could see/feel things that most others did. Ethnicity, lifestyles, people, color, differences, etc. I didn’t know if that was natures blessing on me, compassion, or…
One of my friends said to me not long ago, she was telling me about her husband and physical changes, hair. I’ve known them for a long time, I’ve met them in person, and have seen them live. I never realized that he was experiencing what she was describing. I never saw that even though it was right in front of me. To be honest, I had to go pull a recent video to see.
I’ve always loved learning, I can’t get enough. I’ve always loved teaching and passing on what I learn. The last 6 months have been healing on so many levels. I started to want to force people to dislike me because I never really felt accepted right, wrong, or indifferent. There always had to be something I had done wrong even when all I knew was that I hadn’t.
I don’t think it would have made a difference that the world knew my brain is faulty. The problem wasn’t with me it was with humanity, judgement and perception.
Life, love, liberty, lessons,
Faith, trust, intense, impressions,
Hope, laughter, healing, rain,
Cleansing, blessings, clearing pain.
©2017 Twinkle VanFleet
“The placenta nourishes a growing fetus. If it is compromised, such as in placental abruption, the unborn baby may be deprived of oxygen. This can cause stillbirths, premature births, or future growth problems. Oxygen deprivation can also cause brain damage, including cerebral palsy.
When a baby’s brain is deprived of oxygen during pregnancy or birth, parts of the brain may begin to die. This sort of brain damage can result in developmental problems, motor skill issues, and other symptoms of cerebral palsy later in life.” http://cpfamilynetwork.org/placental-abruption/
To be continued
PDF- https://www.gstatic.com/healthricherkp/pdf/cerebral_palsy.pdf
Cerebral Palsy Guide https://www.cerebralpalsyguide.com/cerebral-palsy/
What is Cerebral Palsy https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Hope-Through-Research/Cerebral-Palsy-Hope-Through-Research
Definition of Cerebral Palsy http://www.cerebralpalsy.org/about-cerebral-palsy/definition
Fetal Asphyxia https://www.ncbi.nlm.nih.gov/pubmed/9683410
RSD Advisory- Where Chronic Pain & Depression Collide 