Dr. Nicole Julia: Can you share with us the beginning of Charolette’s journey?
Hailey: While pregnant, we received Charlotte’s diagnosis of having Trisomy 18. We were told repeatedly that we should not expect to meet her alive or if we did, that we would have minutes and if we were lucky hours. We were told that we should choose hospice care, but being the warrior she is, we brought her home on hospice care with no intervention. As days went by, we realized this girl had every intention of fighting and, after a month, ended up in the hospital due to pneumonia and failure to thrive. After a month’s stay, Charlotte came home with oxygen, a bi-pap, and a feeding tube.
Fast forward two years and Charlotte is the sassiest little two-year-old you may ever meet. Although she has many specialists, therapists, and works with Early Intervention, her smile never leaves her face, and she shows growth in the smallest of ways. We are still slowly working on moving through small milestones, but each day she shows us something new and is not afraid to let us know what she loves and what she does not!
Dr. Nicole Julia: What are Charolette’s best strengths?
Hailey: Charlotte’s biggest and best strengths are her personality and fight. She is the happiest and sassiest at all times, and although she cannot verbally let us know, her emotions and wants shine right through. Along with that, Charlotte is one to fight and prove that she deserves the same as everyone else. She has had some scary days, but every time she finds a way to fight through and prove the doctors and everyone else wrong.
Dr. Nicole Julia: What does Charlotte love to do?
Hailey: Charlotte loves anything with music and immediately reacts with a smile when any type of music is played.
Dr. Nicole Julia: What has your daughter taught you?
Hailey: She has taught me that doctors do not know everything and that the little things matter most. She has empowered me to let go of the things that we cannot control, and that everything will work out the way it is supposed to.
Dr. Nicole Julia: What do you want the word to know about Charlotte?
Hailey: I want the world to know that Charlotte defies all the odds, and working at her own pace to meet her personal milestones is perfectly fine. I want others to see that it’s okay that she doesn’t meet the same milestones as many other children because if she did, she wouldn’t be Charlotte.
Dr. Nicole Julia: What is your mission as you advocate for your daughter?
Hailey: My mission as an advocate is to show others that although she may have differences, she deserves the chance to find belonging amongst everyone. She is worthy.
Dr. Nicole Julia: What are some of your favorite resources as a parent?
Hailey: Early Intervention is one resource that has been amazing since we have begun. They help us with therapy, and with many other aspects of Charlotte’s care, where we may need guidance. The other best resource is finding other families who have a deep comprehension of what you are going through. From them, I can learn, speak to, and lean on someone that truly understands.
Dr. Nicole Julia: I always like to end on this question. What does inclusion mean to you?
Hailey: Inclusion means allowing everyone, no matter who it is, to be part of this everything meaningful in this journey we call life. Everyone deserves to be given love and has a unique purpose in being here. No one should be able to take that away.
You can follow Charlotte’s journey on social media here.
