All children enter into this life with an abundance of needs, some more challenging than others. Lily, entered this world with her own unique set of challenges, she had 22q duplication deletion, Cerebral Palsy, and Shone’s Complex. But nothing held this little girl back. I spent several hours interviewing my friend, Tiffany, about her beautiful daughter, Lily. We did a lot of talking, laughing, and crying as we talked about Lily’s good times, challenges, and how inspiring she was to others.
“Lily was one of the greatest things that happened to me,” said Tiffany. “I had never been a mother before, so, everything I needed to learn to be a good mother to my first newborn was just like everybody else. I just had to do some things differently with my little girl. Instead of using a bottle to feed Lily, I used a feeding tube. I’m not saying that it was easy taking care of Lily, we had our challenges. When we brought her home, I just made the decision to “put on my big girl pants” and do it!”
Tiffany and her husband, Jeff, saw Lily for more than her disabilities. They were determined to see that she experienced many things outside of her challenges. The first time they took Lily hiking, they decided that they would go on a short hike first to see how things went. The short hike turned into a full hike up Adams Canyon in Utah, all the way to the waterfall at the end of the trail. Lily rode in a baby backpack carrier on the front of Tiffany, who also carried a backpack on her back that contained Lily’s special equipment.
“Lily smiled the whole time,” said Tiffany, smiling at the memory.
Lily had birthday parties with her many friends and she attended their birthday parties too. “It was fun to watch Lily and her friends interact together. I feel it’s very important that both healthy and special needs children interact with each other regularly. They need to be mixed together so they can learn and grow from each other. Children should never be “put into a box” and separated from each other. The only thing they learn from this is to look at everybody differently. That is never a good thing.”
Lily wasn’t able to walk by herself, but this didn’t stop her parents from letting her experience the same things as other kids. “I knew that she danced in her heart,” said Tiffany. “I made her a dress up box full of fun princess dresses and tutu’s to wear and we would play dress-up and dance.”
It was Tiffany and Jeff’s focus to see that their little girl experienced many things in her life outside of her challenges. Even though Lily couldn’t eat candy, they dressed her up and took her trick or treating. I remember the first time they brought Lily to my door one Halloween night. She looked adorable in her costume and smiled while her dad cuddled her in his arms and held out her trick or treat bucket for me to fill with candy. I don’t know who was more excited, me or Lily.
Her favorite things to do included: rolling around the floor, playing with toys, and getting kisses from her dog, Bosley, that never left her alone. She also loved playing rough with her dad and cuddle with her mom. Most of all, she loved smiling at everyone she saw.
Tiffany mentioned that it bothers her how people act when they are around a special needs child. “I understand that some feel uncomfortable and may not know what to say or how to act,” she said. “But there is no need to feel this way.”
Tiffany’s advice to others when they see a special needs child are simple:
- Don’t ask what’s wrong with the child. Instead, ask how old they are or what they like to do.
- Realize that the disability doesn’t define who they are.
- Don’t be afraid to say hi. Lily loved it when people talked to her.
To the parents of children with disabilities she gives this advice. (Personally I think we all could use this too.)
- Don’t let your child’s challenges stop all of you from living your life.
- It’s okay if your house gets messy.
- Don’t try to take away all of the obstacles, they help us grow.
- Everybody has limitations and at times they are going to be uncomfortable. It will be okay.
- Strive to be better, but get away from the idea of having perfection, because perfection is crap. If you can’t do it, scratch it off the list.
Lily radiated joy (Joy is also a nickname she was given) in her short but very fulfilling four and a half years on this earth. Her mission here was always meant to help and teach others around her the value of pure love, joy, and happiness. “Her words didn’t come out of her mouth, but our hearts spoke to each other,” stated Tiffany. “Lily was a warrior and she taught me to be one too.”
Advice to everyone
As I drove home I pondered what Tiffany and I talked about. Lily left a beautiful legacy for all those who came in contact with her. Her legacy taught others to not let their challenges in life hold them back. When the challenges come (and they will), stand up, brush yourself off, and try again!
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