I've never ...
talked to her,
hugged her,
heard her laughter,
spent the day with her,
met her at all!
BUT ... I LOVE HER!
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| {She's absolutely BEAUTIFUL!} |
I met Laycee's mother online while looking for something to help protect Jocelyn's Mic-Key button. Laycee's mother's name is Valerie and she is a pediatric RN who has been fostering/adopting children who are gastrostomy fed for many years. She currently has two children with g-buttons, one of which is Laycee, and her
Belly Buttons are washable, reusable and
almost make having a gastrostomy fun.
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| {My dear friend Valerie and her amazing kids} |
Valerie is a remarkable woman ... REMARKABLE! She is a woman that I admire and respect. She endlessly loves, gives and treasures her children. She has lost children along the way and with their lost, she also lost pieces of her heart. She often refers to Laycee as her "heart" and indeed she is ...
Laycee quickly becomes anyone's heart!
In Laycee's case, to know her, is to absolutely LOVE her!!!
Laycee is witty, sarcastic, honest, artistic, genuine and funny! Like I said, I've never actually met her, yet I know these things about her to be true.
Even at only 19 years-old, Laycee is a superstar with having her own webpage and business called
Laycee Originals. Despite all of Laycee's health struggles, her mission is to make people happy ... to make the world
smile!!!
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| {Laycee with some of her artwork} |
Here is some information about Laycee:
"Laycee was born with a congenital diaphragmatic hernia (meaning her diaphragm did not form completely, allowing her organs, including her liver to move up into her chest). This particular defect occurs in approximately 1 out of every 2,500 births. Only 50% of infants born with CDH will survive to go home and, many of them will have health problems throughout their lives. Because of her CDH, Laycee's lungs did not develop and, in order to save her life, she was immediately placed on ECMO (a heart-lung bypass machine). She remained on ECMO for a total of 21 days. During that time her hernia was repaired and, unfortunately, she suffered a massive stroke destroying a large portion of the left side of her brain.
The prognosis for her neurological outcome was grim. One physician even went so far as to say, "She will just stare at the walls."
Laycee proved to be a fighter. She learned to walk and talk by the age of 3 and, with the help of a wonderful teacher, she learned to read. Her academic skills are limited; however, she has the confidence and the spirit of a lion.
Until approximately 2 years ago, Laycee could not write or draw. She performed most of her school work either on the computer or verbally. One day, she presented her Mom with a picture. It was a face....crude, but a face nonetheless. From that point on, her artistic endeavors took off. She began drawing everyone she knew and, with each portrait, her skills improved. At this time, Laycee has drawn over 800 portraits ~ all the same, yet different. She draws them according to specific information provided by the subject.
Her artwork is currently displayed in medical clinics throughout North Texas (including Wichita Falls, Grapevine, Fort Worth, and Dallas).
Please join us in celebrating this amazing person and her beautiful spirit. Although she has struggled with serious health issues since birth, she sees life through innocent eyes and with a pure soul."
We even had the pleasure of Laycee drawing our precious Jocelyn.
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| {Honestly one of my most favorite pictures!} |
Right now, Laycee is struggling with her dysautonomia, which is a dysfunction of the autonomic nervous system. In Laycee's case, her dysautonomia causes her at times to have a great deal of difficulty regulating her heart rate, her blood pressure, her glucose levels and her temperature. Certain things can exasperate her dysautonomia such as an illness or an infection which she is already more prone to contract than another child.
Yesterday morning, Laycee's heart rate was 20, she had no blood pressure and Valerie could not awaken her. Laycee's dysautonomia seems to be progressing/worsening as blood test and xrays proved no infection. After IV fluids and meds, her vital signs have somewhat improved and was sent home. She continues to require additional IV fluids, IV medications and close monitoring.
Valerie wrote yesterday that her "heart is being torn apart," and even with everything that my own family has went through and continues to endure, I hope to never feel the desperation, fear and pain that she is experiencing right this moment.
It was gut-wrenching to read how Laycee only spoke a few words yesterday which pertained to her desire to "not go to Heaven yet." NO mother should ever have to hear those words uttered from their child's mouth. Those thoughts ... that reality ... should be the furthest thing from a child's mind, but sadly in Laycee's world ... in Laycee's reality ... from what she's been exposed too ... its not!
My friend Valerie does understand the need to prevent her daughter from suffering and has said "if she says she is ready to stop, I will stop."
How do you "stop" as a mother?
How do you do that??
I'm writing today about Laycee, and her mother, because they have a very special place in my heart. I love them like they are family, and it absolutely breaks my heart to learn about Laycee's present condition and to read how my friends heart is "heavy" ... is "breaking" and that she worries about "what the darkness will bring."
I wish I could take all this away from Laycee and Valerie ... but no one can! Its not right, its not fair!!
Below you will find Valerie's request from yesterday.
This is my prayer, my wish, my desire for her and Laycee.
If you feel it in your heart to do so, please join us in this request...
"If you wish to pray for her, meditate for her, speak with a higher power for her...that will be greatly appreciated. I do ask that you only wish for her to pull through and be the strong young woman she is. I am not ready for anyone to ask for "God's will." This child is my oxygen...without her, there is no me."
All my love to you Laycee & Valerie!
