3-26-2013
A Mother’s Love
I remember how I felt on the day my daughter was born. I had just given birth to the most beautiful baby in the world, when I looked at her face I felt my heart skip a beat, and I fell in love deeper than I had ever felt before in my life. Sure, I had loved before, but the love I feel for my children is different. I remember having a conversation with Nikki shortly after Anabelle’s birth. Nikki’s face would light up and her eyes became misty as she would describe how she was in love with Anabelle. I would tell Nikki, I know dear, and that is how I feel about you.
As Anabelle went to her pediatrician checkups, it became clear she wasn’t progressing as a normal baby should. Nikki was breast feeding and the baby wasn’t having trouble sucking, so the first thing they did was try to supplement feedings with formula to see if that helped. As Anabelle continued to look malnourished with poor coloring, it was apparent something else was happening. A geneticist, GI specialist, among many other specialists, ran test leading up to her diagnosis of Zellweger Disorder.
We were at Children’s Hospital, where we would spend Thanksgiving, when the geneticist brought us information about her diagnosis. When I read it, I kept thinking, oh my God, surely this is a mistake…but no mistake. Nikki went proactive doing web searches, locating support groups to ask other Zellweger mothers what worked well for their babies. Nikki came to me and said she read an article on research in Amsterdam with positive results treating children with Zellweger and she wanted to take Anabelle there. I asked how many patients were in the study. She said three. I told her that wasn’t a large enough control group for valid results, but she didn’t care. She was a mother, who was desperate to save her child. I can see how easy it is for a vulnerable person to be taken advantage of. A mother who loves her child will do anything and give all she has for her child. I know because I am this way.
At the time, Anabelle was readmitted to Tulane Medical Center with a severe viral infection after just surviving Sepsis. Nikki and her partner had been called by Anabelle’s team of doctors for a family conference and were told they did not expect her to live much past a year old. Nikki’s mind won’t accept the prognosis. This was the onset of her first break. She had never had any mental illness prior to this episode. My heart aches for Nikki. She is currently being treated for this and your prayers are needed.
Anabelle has been doing well. Still a little problem with her bowels but still gave lots of smiles today. A cold front came through, the air was cool, but we went for our walk anyway. It was my therapy today as I worried about Nikki. I just walked and cried. Not boo who make a scene cry, but silent tears kept leaking out my eyes.
Anabelle stayed up late again. I think she is getting her days and nights mixed
This is Anabelle awake at 1AM. Her little tummy is not feeling well. We tried the dark Karo syrup 1:1 ratio Karo syrup to water to see if we could get results from her bowels. Thank God she finally got relief and now is sleeping.
I am exhausted and going to bed as well. Thanks for all the prayers and love shown.
Good night
September 23, 2018
The picture shown is not the original picture from the blog, but it is one taken during that month on a late night. I try to keep it as close to the actual documented time as possible. I was beginning to learn how we treat mental illness in our country. It is such a sensitive subject no one likes to mention it. I understand this, because dealing with my own depression has opened my eyes. When you are open with your feelings, bias, ignorant views put you in a vulnerable state. I have learned so much and continue learning. I don’t feel change can occur without open discussion and honesty. Nikki had a lapse of insurance coverage that seems to have affected her receiving adequate care from the medical system. I swore I would not let the neglectful and inexcusable poor treatment go unnoticed. We were barely able to keep her alive during her illness. We were not able to keep her safe and it changed our family dynamic. The burden of her care was shifted from the professionals that took their Hippocratic oath lightly, to our family. Treatment that was needed to stabilize her was not given, but instead she was discharged early, dividing a family that had little knowledge of how to manage her illness. To complicate it, at the same time trying to care for her terminally ill child. We are not alone in this plight. According to a study by the National Institute of Mental Health as documented in online article “Mental Illness and Homelessness: Facts and Figures posted July 31,2017, there are over 500,000 people homeless on any given night (an extensive study by the U.S. Department of Housing and Urban Development) with 20-25% mentally ill,” written by Mingu Kim’18 staff writer, hcs.harvard.edu. The depression I felt came from the hopelessness of trying to keep my daughter safe while trying to get her help in a medical system that failed her. We are lucky she survived. It can happen to any family at any time. That is why our story matters. We should not go on as a nation that does not take care of its vulnerable citizens.
Jacqueline/Maemo
