Lily's Journey

For as long as I remember I have wanted to be a mom. I knew when I first started college that I wanted to marry young and have my kids soon after, which I did. We were so beyond excited, scared, and nervous for the arrival of our first baby, Lily. When she was born our whole world changed and the love that we immediately felt was indescribable. Never in my wildest dreams did I know I could love someone that much.

       As Lily grew older she was delayed with every milestone by about 3 or more months. Nothing has ever been easy for Lily, besides smiling and being the most lovable child on earth. By the time her first birthday came around she was a very timid little girl that was terrified of people she wasn’t with everyday. We noticed early on that Lily wasn’t talking or doing typical things like most kids her age, but just figured she would eventually because she had been late with everything else. She didn’t even walk until she was 16 months old so we had good reason to think her time will come.

      By the time Lily was a year and a half we still had no words, no waving, pointing, able to hold utensils or any of the other little things kids do. We always had to be very careful with how Lily approached a room. We couldn’t overwhelm her with walking into a crowded room because then we couldn’t calm her down for the rest of the night until we left. One day when I was home just playing with her I realized that Lily was lip and tongue tied, so we took this on headstrong and got it taken care of immediately. Nobody around here would do it so we found someone who would in Ohio and took her there. I just knew in my gut this had to be why Lily wasn’t talking so I was super excited! The dentist who did it said we should start hearing words within a month, unfortunately that didn’t happen for Lily. It started to become more apparent that there was something going on.. something not quite right.

      No matter what we do, Lily chooses to play by herself. If we get down to play with her she will go away and find something else to play with. When other kids are around she always stays in the corner and plays by herself so she can avoid them. We decided to start Lily in daycare so she would have to get used to new situations and kids. This helped tremendously. We were asked a couple of times in the past, “Have you thought about getting her checked out for autism?” and I ignored it. Being a first time mom I didn’t want to believe that anything was wrong with Lily. At this point Lily is now two years old and nothing had changed besides her developing a few really weird habits that we thought were just “Lily.”  

       Another question that we were asked was “Do you think she can hear?” and we truly did because she would dance to music and would come for that. Music is different though than us just talking. It’s a whole different pitch of sound. We decided to take her to Cincinnati to get her hearing checked after another failed West Virginia doctor visit. She now wouldn’t turn or respond to many noises at all. Sure enough she had about a 50-70% hearing loss and needed tubes to drain the intense fluid build up. This was the answer! She couldn’t hear and that’s why she didn’t talk! Wrong.

       After her tubes were put in we went back to Cincinnati a few weeks later for a 3 hour appointment where a psychologist, SLP, and doctor checked her out for a true diagnosis. This appointment consisted of Lily doing her own thing with how she lives her everyday life. They tested Lily with different things to see how she would respond. After we left that appointment, we went to the ENT to find out we were going to be getting her tonsils and adenoids removed and one of her tubes needs replaced. This is happing the 26th of this month. Shes having this done because Lily has an 80% airway blockage. 

       We went back to Cincinnati a week later to hear the gut wrenching results. As the doctor came in the room I was already ready to break down. Lily has moderate Autism Spectrum Disorder (ASD). The whole time I had to pretty much look at Lily and not the doctor to keep myself from crying. Looking at her helped me remember it didn’t matter what she had because she is my baby and I will always love her unconditionally. It is just a label, its not WHO she is. Our perfect little girl was just hit with the “A” word. I was broken. She sat there the whole time smiling and babbling to her hands as she does when she is happy. If you know Lily, her smile is contagious because her eyes shine the entire time and it makes you smile watching her. We call her hands her “best friends” because they are the only ones who understand her lingo. (Video attached shows what I am referring to with this.)

       Having a child with autism made me realize that my whole world just changed and it just felt like it came crashing down. That life I dreamed of had completely just turned upside down. Everything was about to change. She needs so much help, more than we can give her. We can’t just sit back anymore and think she will grow out of that habit. Thinking about the future hurts. “Will she ever talk?” “Will she be in a regular classroom?” “Will she be able to make friends?” “Will her teachers understand her and her needs?” The struggle makes us stronger though and I wouldn’t change that little girl for anything. I break down almost everyday right now crying and asking God “Why?” What I believe though is that he knew Michael and I could handle it. We are a very strong couple who do everything far and wide for our kids. Michael is the BEST dad to Lily. We do everything we can for her in the way we believe she should be taught. We don’t pick her up every time she has a tantrum. We tell her no. We teach her right from wrong. We work through the things together and don’t let them come between us.

       Now that we have a true diagnosis we have to get Lily help. A TON of help. We need all the help we can to do this because as you can see she has and is still having a lot of medical help. We will do fundraisers through my business (LuLaRoe) and anything else we can. She is going to be starting in an ABA program very soon to help her conquer the world. We would be so thankful if you chose to be a part of Lily’s journey by helping fund her. Her autism journey has been a part of her forever, but the daily intense therapy is just starting. As you can see Lily has been to many medical appointments already with more on the way. Hearing about Lily’s autism was scary enough, but one of the main fears are the finances that comes along with it. Families with autism can spend nearly 40-60k a year on all of the assistance. We want to say thank you to all of the love, support, and many prayers our family and friends have reached out with already. I never thought we would be in this situation, but we will do anything we have to for Lily and want to be able to give her all the help possible. This is our first fundraiser for Lily and we would be beyond blessed if you were able to contribute to our little girls future and past. God’s got this and will work his magic through her.  Until then, we will push as hard as we can for our little girl. We love you all!