My story begins here, My mother, 19 years old, at six months into her first pregnancy has been concerned about the movement of her child, there’s no movement at all, and her sister-n-law just gave birth to a still born baby girl. Her doctor assures her that her baby is indeed alive and growing ,and that she would give birth to a healthy baby not to stress out, it would only cause more problems. At delivery ,my grand mother at her side ,my mother gave her last push. My grand mother ,instead of a look of joy had a look of shock, in panic she covered my mothers face with the sheet covering her face so she couldn’t see as I was rushed out of the room.
I was born with Congenital Hip Dysplasia, Double Congenital Knee (patellar) Dysplasia, and Duplex Kidney Disorder. Through manipulations, and serial casting for treatment I was sent home ,without hope from the doctors that I would ever walk.
It did work! My mother still today talks about one of the best days of her life was when the last casting was coming off and the Doctor warned not to have false hope that my joints would most likely return to their original state. After my legs stayed in position for several hours they sent me home. My mom says she never saw before or since a baby so happy when I realized later that night that I could move my legs the first time since my birth, I was eight months old. I continued towards progression, learned to walk, then run,and I was deemed a miracle baby.
This is when my Kidney disorder came into light ,and the procedures to correct the defects, which is another story of it’s own ,and for another time.
Without any medical coverage somehow throughout the years I am getting regular check-ups ,but my hip and knee joints are treated like anyone else’s who have had a normal birth. I was not seen by a doctor ,or had x-rays during growth stages. At this point in my life my conditions were neglected.
It all came back when I signed up for the high school track team. Got my approved physical with no restrictions. The coach told me to first try the long sprint because I have really long legs. A third of the way through something very painful in my left knee and hip happened it felt like my whole leg just seized I couldn’t move my hip or knee joints ,and I hit the ground hard ,but still wasn’t taken to a doctor to see what happened. Some times I think that my mom wanted so bad to believe the miracle, that I was normal she didn’t honestly believe that there was a problem or issue to give attention.
Still in high school ,but not running track lol, I started my first job at a fast food joint. Between going to school in the day and work at night most mornings I was waking up to extreme stiffness in my hip and knee joints. This time I was seen by a health plus, which told me that it was juvinile arthritis to take nsaids every day. I was not given an x-ray.
As a young adult I had many jobs none that wouldn’t totally effect my life. It was all I could do, go to work, and come home in pain and try to do everything I could do for relief until my next shift. The pain led me down some wrong ,long ,and hard roads.
I got married ,and quit trying to work to focus on starting a family. I had two children, and stayed at home. The pain was there but I could manage with it, taking rests through out the day. I started having good and bad days, then it seemed like changed to bad and worse days.
The pain, in my body and mind. All the things my children ask me to do ,and get “I can’t baby”. When I walk my hip and knee joints do what I call “jumping”. Both of my Patella’s (knee caps) are fractured due to misalignment and grind ,and my hip is very close to dislocation with every step. I soon will undergo several surgeries to correct my joints because of growth are misaligned. I can’t do all the daily things that a homemakers and mothers do for their family , and I can’t work. I have tried to get help from social security without prevail. Daily life is so hard to get through for me between my conditions, and the hardships of having low income. I wish I could do so many things and ways to provide for my family. I have little to no support from my family, they still want to believe the miracle they dismiss, and avoid me when I’m suffering. Sometimes I wonder how much it would help me to have their support. I am now having depression stem from all the above. It feels great just to share my story. I am frightened of what comes next in my life ,if a wheelchair before my children are grown is in the future. Above all else I will not lose my hope ,and want for healing.
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