On February 22, I found out I was pregnant with baby number two. I looked at the test not knowing how to feel because my oldest daughter was 9 and I didn’t expect to ever have a second child. The pregnancy was normal and as my sweet girl grew bigger and bigger I knew she was going to be a spit fire. She kicked so hard you could see every kick and I remember feeling her and imagining how it would be when she was born. I will never forget holding her for the very first time and looking at my gorgeous blonde hair, blue eyed princess. The first few months seemed so normal. She had the sweetest smile and made the cutest little noises and I would sit and imagine all her firsts.

When she was six months old we started noticing that she didn’t pay attention to lights or follow us like kids her age do and her doctor suggested therapy. We started with physical therapy and they noticed she had a lot of tightness in her neck which caused a flat spot on her head and we learned she needed a helmet. I was so scared and that was the first time I felt like a failure as a mother, like I had done something wrong. The more we got into therapy they noticed that she didn’t track lights so we had to see an eye doctor and he ran us around for months. We eventually found a new eye doctor who automatically diagnosed her with CVI (Cortical vision impairment). I went home and when my kids where in bed I read every article I could find on CVI and my heart broke for her. I had no idea how to help my little, but I was determined to fight for her.

When she turned two and a half, she was diagnosed with Hypotonia, another diagnosis I knew nothing about. I went back to the books to learn everything I could and the more I read the more my heart broke because how could I help her when I didn’t even understand it myself. She wasn’t pulling up or even trying to walk and now I was learning why. We were referred to a neurologist when her doctor noticed how behind she was on developmental skills and that’s when we got the next diagnosis, global developmental delay. I listened to the doctor talk, but it was like my head was spinning.

That night when my kids went to bed I sat in my living room and cried. I became so angry with God that my child was being hit with diagnosis after diagnosis and she wasn’t like all the other kids her age. I knew I was wrong for being angry but I couldn’t fathom how God had let this happen. As time went on I sat with my mom and talked, cried and tried to understand why this was happening. How was my beautiful little girl struggling with so many things. I remember wanting all the milestones for her, wanting to see her first steps and hear her say momma, but it wasn’t happening.

Our neurologist sent us to a genetic center and they did all kinds of tests but nothing came up right away. Then they decided to do a Whole Exome Sequencing. After six to eight months we got the call that she had a genetic disorder called GRIK2. They explained it the best they could but said it was rare so there wasn’t much information on it. I researched, joined groups and finally met other parents with kids with similar experiences. I still learn more everyday but it is still so scary. I remember calling my brother one day and just crying and telling him how I was so scared and sad and how I hated this for Haley. I will never forget what he said to me. He said Haley is a happy beautiful little girl, her life is perfect and she is happy. She doesn’t realize her life is any different than anybody else’s. I still struggle with the things I’ve missed in her life.

In past two years she has started making eye contact and giving me real hugs. You never know how special those moments are until you think you will never have them, and I will never take them for granted. We were told she may never walk but when she took her first step I remember the feeling of overwhelming joy. Even though she still walks like a toddler at six years old I am beyond thankful that we get those wobbly steps. She makes noises and a few words but I still wish every day to hear her talk. There are so many things that she can’t do yet and I would be lying if I didn’t say it is so hard to not have those moments. I had seen parents with Children with special needs and I wondered how it must feel but I could see the strength they had but could never imagine how it felt. Now I am one of those mothers and you don’t have a choice but to be strong even though sometimes I still stand in the shower and cry wondering why this is still happening.

That being said I couldn’t be more thankful that God made Haley mine. She was blessed with an amazing older sister who thinks she is the best thing since sliced bread and an amazing group of therapists, aunts and uncles, cousins, grandparents and a precious babysitter who loves her like her own and is so patient and kind with her. I am not sure what the future holds for my sweet Haley but I do know I will spend the rest of my life being her biggest supporter, her caregiver, her voice till she can talk, but mostly her mother.