Hello, my name is Keneisha. I reside in Lancaster, Pa. with my two children Nashawn and Chaiyoni. I cannot forget our newest member Nova! Nova is our 9 month old teacup Yorkie.
When I found out I was pregnant, before I knew the sex, I was scared. I was unsure if I wanted to continue with the pregnancy; I lost a son on June 6, 2008 due to aspirating in his sleep. My son was only 3 months old. His name was Jachai. I tried performing CPR on my own son even when I knew he was gone. Losing a child is something that is indescribable! It changes you; can’t say for the best or worst. But for a long time I was angry, and depressed. I became a workaholic to ignore the pain. Just when I felt like I could move on, 7 months later I lost my brother due to being a victim of homicide. So, to find out I was pregnant in Nov. 2009 I was nervous…anxiety kicked in. Instantly the thought of abortion came to my mind, and adoption. But something changed my thoughts. I seen my baby on 3D/4D ultrasound and I knew this child would bring back happiness into my life. She was the reason to live.
On July 26, 2010 my baby girl was born. My beautiful baby girl came into this world yelling, with a head full of hair, and big brown eyes. Since I lost my son and brother, I wanted to honor them. My mom and I came up with her name. My son’s name is Jachai and my brother’s name is Kenyon. With us combining their name, hers is Chaiyoni; it is pronounced (Ky-yauhn-ee).
When you think your life is starting to go in the right direction, things are looking up for you, it’s not. I used to take Chaiyoni and Nashawn to the Boys & Girls Club after school 3 days a week. One day an America’s Best Eye Associate came in and gave all the kids free eye exams. Whether or not your child passed the exam, they gave all the children vouchers to go into their office. So, I made an appointment for the kids there. At this time Chaiyoni was 6. One by one they go into the room to have their eyes checked. The lady asks me, “has she ever worn glasses?” I reply, “no she has not.” She says, “we want to do more further testing with her.” At the end of the appointment the eye doctor says she will order her glasses but wants her to do a follow up with an ophthalmologist.
Again, I make another appointment. Again, they do the same tests and the same question is asked, “she never wore glasses or complained?” I reply “no she has not.” The ophthalmologist says to me, “I will put these drops in her eyes, wait a few minutes and i want to show you what i see.” He asked me to look in the microscope. He said, “do you see this string under her left eye?” I said “yes.” Then he says, “I’m no genius but I believe your daughter has Marfan Syndrome, have you heard of it before?” He goes on telling me all of these things I need to do, and as he is going on talking, I am trying to fight back my tears. He asked me to go back into this small waiting room while he changes her prescription for her glasses. As I sit in the waiting room, I am googling what is Marfan Syndrome? Google: People with Marfan syndrome are tall and thin with long arms, legs, fingers, and toes. I’m digging deeper and deeper as I am waiting in the waiting room. Immediately I called Chaiyoni’s family physician.
I go home and I am still doing research about this Marfan syndrome. I start to cry. I make a post on Facebook and ask for prayers. My sister in Christ inboxes me and tells me to take I go home and i am still doing research about this Marfan syndrome. I start to cry. I make a post on Facebook and ask for prayers. My sister in Christ inboxes me and tells me to take Chaiyoni to Children’s Hospital of Philadelphia. First, we have a conversation with her family doctor. She wanted to refer me to a cardiologist in my city. I told her “no, I want Chaiyoni to get into CHOP.” She says, “If you can’t get in, I can make this call to the one here.” I wasn’t trying to hear her. I told her “look nothing against you being her family doctor, but after losing a son and feeling like my voice was being overshadowed, I have to make this decision on my own.” And a week later, my mom and I were on our way to Philadelphia. They did the exam, including measuring her arms and height, looking at her fingers and feet, etc., and told me Chaiyoni had signs and symptoms. They did the genetic testing, and we got our results back a few weeks later.
Chaiyoni was diagnosed with Marfan. Once again, my anxiety kicked in. I started to think about my son Jachai.
My mom looked at me and said “Keneisha, this is where your faith kicks in! Do you trust him? Keep praying, keep fasting, keep reading your bible.” I kept telling myself, “have faith as small as a mustard seed.” Although, I doubted God and asked him “why me?” The doctors tell me Chaiyoni has all these restrictions: no contact sports, no instrument that requires you to blow in it, wear this, less sandals, more sneakers, make sure she still continues to do kid things but make sure she don’t do this and etc…I found the Marfan Foundation website, and from there I found the Marfan syndrome support group. I have gained a connection with others who are going through something similar to my daughter. This has allowed me to have a peace of mind. To let me know that I am not alone. And there is a big Marf family out there. I have made great connections.
I can’t promise to fix all of my daughter’s problems she will face, but I can promise her that she won’t have to face them alone. I am on this journey with my daughter, from childhood to womanhood. I could not be any happier and honored to be her mother. I thank the Lord for blessing me with 3 amazing children. Although my son’s life ended so sudden, he’s our Angel watching over us.
Thank you listening to my story, my journey, our beginning!
