Kailynn, 6 (Wasilla, AK) | cerebral palsy

KAILYNN, 6 (Wasilla, AK) | Cerebral Palsy

written by her mother, Italia

photographed by Laura Stennett Photography 

Finding out we would be expecting a baby girl was one of the most exciting yet nerve-wracking times of our lives. After the initial shock wore off, we began imagining what her life would be like: what her interests would be, which sports she'd like best, if she'd look more like me or my husband, etc.

My pregnancy was smooth sailing besides the everyday morning sickness. I was scheduled for an induction on June 12th, but my water broke the night before. After fourteen hours of labor and 45 minutes of pushing, we were blessed with our beautiful baby girl on June 11th, 2010.

For the first few months, everything seemed fine, but when Kailynn was around four months old we noticed she wasn’t reaching the milestones she should have been, such as holding her head up and rolling over. Her body would go from floppy to stiff and we noticed her eyes would cross or one would turn inward.

When we took her in for her checkup and told them our concerns, they referred us to a pediatrician. From there we were referred to a neurologist, who then diagnosed Kailynn with cerebral palsy (CP).

Cerebral Palsy is a congenital disorder of movement, muscle tone, or posture.

Once we found out she had CP, we went about finding her a good eye doctor to figure out what was going on with her eyes and when we did Kailynn was diagnosed with infantile esotropia, which is inward turning of the eyes, basically. Once she was diagnosed, we then took the steps to correcting them. We started with patching the eyes a couple times a day and when that didn’t work we decided to correct her eyes with the surgery offered.

Before we were able to get Kailynn's eyes corrected, an MRI had to be done to make sure there wasn’t extra fluid in her brain. There wasn’t any fluid so we were then able to have her eyes fixed! Shortly after that, she was fit with a pair of glasses for astigmatism in both eyes. After we had her eyes corrected, we started getting her into physical and occupational therapy. She started to progress and we began to learn what we needed to do at home to continue Kailynns’ progress. We did lots of at-home work-outs, basically :)

Recently this year, we tried Botox (Botulinum toxin) in her ankle and calf, which helped relax the tone in her foot to help her practice standing flat-footed in her Ankle Foot Orthosis (AFO’s) with a walker. We plan to continue this course of treatment and any others we may come across from which we feel Kailynn will benefit.

Right now in Kailynn's life, she is mostly dependent on us for just about everything. Basically, anything you do for yourself, she needs done for her.

Kailynn is currently in first grade and is thriving. When I first found out she had her disability, I automatically thought she wouldn’t be able to live a normal life, but she has proven me wrong year after year. Just getting Kailynn into a public school and around her peers has opened up so many windows for her, such as speech therapy and vision therapy. 

Kailynn has been able to be involved in Special Olympics bowling and she went skiing for her first time, too. She loves going on the four wheeler and playing outside. Music is one of her favorite things and she absolutely loves other children. Every day she teaches me something new on this incredible journey we are on and I look forward to all the days ahead: setting goals, reaching them, and then exceeding them.

As a mother of a daughter who has CP, I would say the most difficult thing is the emotional turmoil I am constantly going through as I watch my child fight and struggle to perform her best to be better than her best. Bringing her to social events and knowing that she is cognitively and socially aware at the level of her peers, but just lacking the ability to physically do the things they are doing, is really hard.

When Kailynn was brought into our lives, it completely changed everything for the better. She has taught me how to love, how to be patient, and how to fight through our trials with a positive attitude. Overall, she has taught me to never give up. I don't know where I would be without Kailynn. She is my life, she is my love, and she is my hope.

What I love most about Kailynn is her spirit/enthusiasm and her will to want to be independent. She’s a warrior to me because she’s overcoming her disability. She fights with all her might to be successful, all the while keeping a positive attitude of "I will never give up". She does this all with a smile. She is aware of her progress and is proud of herself for all of her achievements.

The advice I would give other parents is to get informed. When I found out I was pregnant, I was 19 years old and living in a small town without the resources to learn about CP, to learn what options there are, and what is available. There are so many ways to get information these days with the Internet, books and other parents who are going through a similar journey. Don't be afraid to open up and talk to people joining the groups that are offered so you don't feel like you are alone. You aren't alone - just remember always you are not alone!

Kailynn's mother uses the Cerebral Palsy Family Network Facebook page to read about others' experiences