There is something that I never discuss, and I sit back and think about all the millions reasons why I don’t speak on the topic is because I do not want to come across as being ungrateful and or that I wished for a different life or for a different child.
I have always been the mother that just keeps going, I generally do not talk about my feelings, or even show any of my insecurities and my vulnerabilities. I have a huge reputation as being a strong independent woman who can handle just about anything. The truth is I have never learned how to be open with my feelings, it was never taught, so I have gone most of my life living in this world just staying quiet, taking it day by day. To be honest I struggle just as much as any other mother, the future scares me, and there are nights where I just pray for God to please help me with my grief.
Last night was no different, last night I prayed because I had a fleeting thought that overcome my mind during the day of what life would be like if Leah spoke, what if she didn’t have autism? I couldn’t stop my mind from thinking of how much my life would have been different, I had a totally different imagine of my beautiful 9-year-old daughter came in my mind as she was smiling talking in full sentences and just beaming full of light. I couldn’t help myself and started to daydream of our life would have been so different. The sound of her voice was etched into my mind and the giggles and pointless conversations, the back and forth talking…. Then it hit me, like a ton of bricks! I am grieving, and it comes and goes and this time it hit me hard. It is really unsettling the feeling of loss and wishing that things could have been different.
I remember when Leah was younger, I would cry myself to sleep because I was so scared. She was so young; she was my one and only Leah. We knew we were not going to chance it and have more children, the genetic doctors from Seattle Children’s advised us not to have more children. So, I knew Leah was our gift, she was the little girl whose future was unknown but most importantly she was mine. I struggled in private though the years of when she was younger, we started intensive therapy that was basically 7 days a week with speech therapy in Seattle, along with numerous doctor appointments in Seattle. Years I never felt like I was an adequate mother, because I was always questioned by doctors and specialists about her food, behavior, can she do this or that, learning how to communicate through PECS, Sign Language, one-word utterances.
To me that was motherhood, I was learning a whole new lifestyle, learning something that did not feel authentic because I had to learn it and become good at it myself. It is truly hard, but that was my life. During those years, I knew it was in Leah’s best interest to keep doing whatever I could possible do so when she gets older, she could live a somewhat functioning life. I had to have that drive, motivation, that commitment to hold myself accountable to do the unthinkable of driving countless hours in traffic for that 50-minute appointment once a week then twice a week if I had to. We never took a break, when there were openings, I would ask for it. I was the parent that went to the UW Autism Center on Christmas Eve and New Years Eve because that was the best time to go because there were openings.
I have and will never question this type of dedication I have on helping Leah. I do not write these things to receive accolades or to be told I am the best mother. But to me this life that I never ever envisioned, this is not what I wanted.
I would have loved to have those toddler meltdowns, those first word memories, a baby book filled with pointless things, the preschool experience, the first day experience. Knowing what school was like, who she talked to, who did she play with at school. I sit back and think I missed out on a lot of things, and I know I will in the future.
For now, there is one thing that having a child with Autism that has helped me, without it my life would not be what it is today. If Leah did not have autism, we would not have Leah’s Dream Foundation, her story would have not been shared, my personal story would not have been known. I think writing this , was last nights prayer was answered, I wouldn’t have written this if I didn’t have the fleeting thought of what life would have been like if Leah was able to speak, and what if she didn’t have Autism.
I hope this can help someone who may be going through a hard time, please know you are not alone, none of us are. We are all in this together, there are days that are better than others. Reach out to someone share your story, because I can almost guarantee there is someone who can relate to you in some way.