For a 7-year-old, Skylar Stone has an impressive resume: She dances and cheers, participates in races and pageants. And she does all of this despite her physical and mental special needs.

Skylar was born with a rare neurological disorder called Schizencephaly, and has developed seizures and hydrocephalus. She has a VP shunt that diverts excess fluid away from her brain, and also lives with a gastric feeding tube (or G-tube).

Skylar’s mother Lindsey, a Clinical Research Associate for University of Arkansas for Medical Sciences (UAMS), learned while she was pregnant that Skylar would have special needs. “We all thought that she would be born with Hydrocephalus. When she was a few days old, she had an MRI and it was discovered that she had Schizencephaly,” Lindsey says. “It was a very difficult time. I had envisioned my life as a parent very differently, but God had other plans for me. She doesn’t walk or talk, but she has touched many lives with her courage and strength.”

Lindsey spoke with Little Rock Special Family about how she and Skylar live without boundaries and appreciate the little things:

Little Rock Family: What is Skylar like and what does she enjoy?

Lindsey Stone: Skylar is the strongest person that I know. No matter what she goes through she always has a smile on her face. She is always laughing or smiling, unless something is wrong or she’s sick. She is the one who reassures me that she will be okay. She loves being around other children. They always seem to help her and put a smile on her face if she’s not feeling well. Kids seem to be drawn to Skylar as well. They treat her with such kindness and try to make sure that she is taken care of. She loves music and watching cartoons. She loves to dance and cheer, and take art and music class.

LRF: What is a typical day like?

LS: Our day is pretty busy. I get up and get ready for work, and then I get Skylar ready for school. I change her clothes, give her medications and get her ready for the bus. I go to work while she goes to school at Davis Elementary. She is currently in second grade. After school, the bus takes her to a friend’s home—they have become her adoptive grandparents. I am so thankful that I have them in our lives. Typically, I will pick Skylar up and we will go to dance or an activity at the I Can! Arts Center. Once we are home, she gets a bath, medications, and then Skylar and me have our mom and daughter time. I am able to sit with her and hold her, and I enjoy every minute of it.

LRF: How do you make time for yourself as a busy single mom?

LS: I have great family and friends that are willing to help me when I need it. Skylar’s grandparents are very involved in our lives. They are the best support that I can ever ask for. They have been there for me through everything and through some of the worst times. I couldn’t have made it through a lot of it without them.

LRF: What is the most difficult part of raising a child with special needs? And what are the joys?

LS: The most difficult part is watching her struggle and be in pain. It breaks my heart watching Skylar go through everything that she has. I want to do everything I can to protect her and keep from her any pain, but it goes with being a child that has special needs. The joys are watching her do things that they said she never would—listening to her laugh and seeing her smile.

LRF: Skylar has had multiple brain surgeries and has been in and out of the hospital—how do you cope with seeing your child in pain?

LS: You hope that over time it would get easier, but that’s not the case at all. I struggle with making the right decisions for her. I don’t want to see her in pain, but I also want to do what is best for her. I want her to thrive and have the best quality of life that she can. With that comes the pain that she endures from procedures and surgeries. Being a parent of a child with special needs, it becomes your way of life. You are used to waiting in doctor’s offices for hours at a time, waiting in the ER for 6-8 hours, sitting in the OR waiting room hoping that the surgery goes well, or spending weeks in the hospital.

LRF: What have you learned since becoming a mom to Skylar?

LS: Skylar has taught me to never underestimate anyone. She’s taught me to appreciate life and never take things for granted. Parents with typical children know that their children will walk and talk, but when your child is not expected to do anything and they laugh for the first time it brings you a joy that you can never imagine. I have learned to celebrate every accomplishment. No matter how small they might be, they are huge to me and always worth celebrating. She has taught me patience—a lot of patience!

LRF: How has she surprised you?

LS: She’s such a strong little girl. She hardly ever complains. She smiles and laughs. The biggest success that I am most proud of is when she said “mama.” She only said it once and she may never say it again, but it was the sweetest sound I’ve ever heard other than hearing her laugh.

LRF: What are your favorite moments with her?

LS: My favorite moments are hearing her laugh. Her laugh can still bring tears to my eyes. It’s like she’s trying to reassure me that she’s doing just fine. Some of the best times happen when we are at home, just sitting and spending time together. The alone time I get with her is priceless. I also love to watch her dance and cheer. It means so much to see Skylar up on stage during a dance recital. I never imagined that I would see my daughter be a dancer.

LRF: How did you become involved with the I Can! Arts and Resource Center?

LS: When Skylar was in daycare, one of the moms told me about I Can! Dance. I just knew that Skylar would be too disabled to participate, but they assured me that she would love it and she has. Since then, I have been determined that if Skylar can participate then she will. There are no boundaries. I want her to be able to do everything she can.

LRF: How would you encourage other families who are raising children with special needs?

LS: I’ve found how important it is to get involved with a support group. It’s nice to have people to talk to that know exactly how you feel. Skylar is currently in palliative care at Arkansas Children’s Hospital and the time that she has left is unknown. But I will appreciate every moment that I have with her. I would assure other parents that God has a purpose for their life, and never take it for granted. He has a special place for children with special needs,and they are sent here to make a huge impact. Just because God gave you a child with special needs doesn’t mean that you have to limit their life to what they can do. Strive to bring out their best and never accept that failure even if you are told a list of things they might not ever accomplish. Always believe that they can do anything and they just might surprise you.