Meet Ana

I’d like to introduce my daughter, Ana. She is my inspiration and the reason I decided to start this blog. Ana’s full name is Anakalia, but we call her Ana for short. She was born on December 9th, 2016 and she came into the world facing some pretty big challenges. Ana was born with a very rare spinal anomaly which caused her to be paralyzed from the waist down. Her condition is called congenital scoliosis. Now I know, some of you may be thinking, “I know what scoliosis is! I had a friend or a cousin with scoliosis in middle school, they had to wear a brace for a few years, it wasn’t that big of a deal.” The kind of scoliosis you’re thinking of is called adolescent onset scoliosis and it’s much different from congenital scoliosis. Honestly, I wish there was a different name for Ana’s condition because it is so different from what most people understand as scoliosis. Approximately 4 in 100 children have adolescent onset scoliosis, whereas only 1 in 10,000 newborns are diagnosed with congenital scoliosis. The basic difference between adolescent onset scoliosis and congenital scoliosis is the formation of the vertebrae. Ana has two vertebrae that formed incorrectly in the womb. Her T7 and T8 vertebrae did not form all the way and are therefore called hemivertebrae, because they basically only formed halfway. As a result of these two hemivertebrae on top of each other, the top vertebra slipped off the bottom one and actually dislocated her spine. Because of this dislocation, she has a compressed spinal cord which resulted in paraplegia. When we hear that someone is paraplegic, it’s common to think that they can’t move their legs at all, but that’s not necessarily true. Paraplegia varies from person to person depending on their spinal cord or brain injury, and most paraplegics can actually improve their function over time. Ana is no exception. As a baby she couldn’t even turn over on her own until she was about nine months old. Now she is two and a half and she is able to pull herself up into her walker and walk all over the house on her own. Her upper body strength is amazing, and she continues to grow and develop in lower body strength every day with the help of her physical therapist.

This blog will document Ana’s journey through her physical challenges as well as my own journey in parenting a child with differing abilities. Even though she is only two and a half, Ana has already taught me so much about resilience and determination. As she gets older she has begun to realize that she is different from other kids, and has vocalized some of this frustration. As a mom, it’s hard to watch your child suffer with difference at such a young age, and know that it’s something she will struggle with for the rest of her life. I know I’m not the only mother out there struggling through this, whether your child has a disability or not, at some point we all struggle with supporting our children through feelings of disappointment and loss.

After Ana had a particularly hard week a few weeks ago in coming to terms with her physical differences, I was feeling pretty down and did some journaling. This always helps me to get at what is underneath my feelings and identify ways in which I can change my thoughts or behaviors in order to change outcomes. When it comes to Ana’s struggles, I feel like I’ll take one incident that happened, and I’ll multiply it by 1,000. I’ll start imagining all the times that she will feel different, all the times that she will feel left out, all the times she will have her heart broken, and the weight of all that grief can become so heavy. Sometimes I feel like I’m not a strong enough mom to be able to deal with all of the pain and heartache that she will experience over the course of her life. I feel like there’s so much I need to teach her. I need to teach her to be resilient and strong, to know herself, to have healthy self-esteem, to truly love herself and to trust herself no matter what other people think or say. When I think of all of those things, it just feels so daunting, and I’m not sure if I have the ability or the capacity to do all of that. But even though I’m not sure I can do it; I’m not sure I can be the mom she needs me to be; I know I have to try. I have to try for her, because she means the world to me. If I can attain even a little bit of this wholehearted parenting thing, then I can give her a few more resources with which to tackle this crazy life. Follow our journey if you are looking to cultivate a little more resilience, love, hope and faith in your families and relationships, whether you are raising kids with differing abilities, able-bodied children, or fur babies. I hope to give you some strategies to cultivate connection and trust while sharing our struggles and challenges with you.