Meet Skylar

Skylar is an amazing 7 year old who is about to celebrate her 8th birthday. She is the love of my life and has brought me more joy than I could ever imagine. Skylar was born with a very rare birth defect called Schizencephaly. In the past 7 years, she been diagnosed with seizures, failure to thrive, cerebral palsy, profound development delay, dysphagia, multiple food allergies, central adrenal insufficiency, cortical blindness, and hydrocephalus. She’s had multiple surgeries for her VP shunt and recently had a VNS placed for her seizures. She’s been in and out of the hospital her entire life. She does not talk or walk, she is unable to sit independently, and she requires 24 hour care. However, she is the happiest girl in the world. Despite what she has been through she is continuously laughing and smiling and she has a laugh that will melt your heart.

Skylar might have challenges but that doesn’t stop us from doing things. She’s part of a special needs cheerleading squad and a special needs dance class. She’s played softball and has been part of a few 5ks and has also been part of the Arkansas Angels Pageants. I’ve always had the mentality that if she can do it and she feels up to it than we are going to do it. I don’t let her disability define who she is or what she will be part of.

I’ve raised Skylar by myself. I’ve been a single mom since the day that I had her. She has been my entire world since the day she was born. My life has revolved around hospitals, teacher’s meetings, constant emails, texts, and phone calls back and forth to nurses and therapists, more ER visits than I ever wanted to imagine and more doctor’s appointments than I’ll ever have in 5 lifetimes. My life has revolved around her in almost every aspect and I wouldn’t have it any other way. Being around her makes everything better. No matter what kind of day I was having I knew I could come home and her smile and laugh would turn any day into a perfect day.

For the past year, I have been faced with the challenges that one day she won’t be here. I had always thought that Skylar might not live as long as me but I still imagined her growing up. However, over the past few years Skylar has really struggled and I was faced with Palliative Care and now I am faced with Hospice. These are two words that when they were mentioned to me it knocked the breath out of me. I wasn’t expecting it either time and it hit me like a ton of bricks. I knew that Skylar was having bad days and I knew that she was struggling but I never thought that it was precursor that she’s having disease progression. I have done things that I never thought I would have to anytime soon. I have picked out a casket for my daughter and picked our burial plots and planned what type of funeral I would want for her. I wanted to get everything out of the way so that my main focus could be spending time with her. She has wonderful days and the bad days are pretty bad. It breaks my heart every time she has a bad day but I am thankful that she is having more good days than she is bad. I’m terrified of what it might be like when she starts to progress and what my life will be like without her in it. The fact that she’s been the biggest part of my life for so long I’m not sure what my purpose is besides being Skylar’s mom. Right now my biggest concern is making sure that I spend every second that I can with her and making sure that however long she has left on this earth that I make it the best that it can possibly be. I hope that she’s here for years and years but I will cherish any and all time that we have together.