If you had asked me what I thought motherhood would be like when I was expecting Lucas, I would have painted a picture that looks nothing like my current reality. Like most parents, I probably envisioned Lucas as an only child, but SURPRISE! While I was exclusively breastfeeding my little miracle conceived through fertility treatments, I found out I was pregnant again! I envisioned my home brimming with books and endless questions. I imagined myself patiently answering the curious inquiries of my articulate two-year-old.
Fast forward two years, and my life with my son is… well, it’s quite silent. As someone who loves to talk, analyze, and explain, this silence is overwhelming. Lucas was diagnosed with Childhood Apraxia of Speech, and his condition is considered severe. Essentially, he struggles with motor planning; he understands everything and knows what he wants to say, but there’s a disconnect in his brain that prevents him from using the muscles in his mouth to form words. He’s trapped in his own mind, yearning to express his thoughts, feelings, and desires but unable even to call my name. This often leads to him resorting to miming, pointing, and grunting, which can be incredibly frustrating, sometimes to the point of tears. My heart breaks a little more each time I witness his distress or despair when he gives up trying to communicate.
The future feels uncertain. I’ve consulted numerous pediatric neurologists, developmental specialists, and speech-language pathologists. They all affirm that his cognitive abilities are above average and that he is not on the autism spectrum (a fear that initially loomed over me since apraxia can often be misdiagnosed). Yet, the unanswered questions linger heavily: Will he ever speak? When will that happen? Will we understand him? Should we continue to teach him sign language? (We do use signs.) Should we explore an iPad communication app? How will I know if he can read? How do we approach potty training for a non-verbal child? Can he attend a regular public school? Will he need special education, or can Montessori work for him? Will he make friends? How much therapy does he require? Will insurance cover it? Can we afford it? What causes this condition? Could my other child face the same challenges?
There are also the everyday questions that I wish I could answer: What ice cream flavor does he prefer? Would he rather have milk or water? What’s his favorite color? Is he feeling okay? Is he scared? Why is he crying?
I don’t want to make this sound like it’s about me—my life revolves around Lucas. Sometimes I have to remind myself to ensure my younger daughter, Mia, gets her own experiences, like music classes or playdates, since she often tags along to countless appointments with Lucas. Sadly, I worry that she’ll be a grade behind him and may have to advocate for him, since he won’t be able to voice his needs to others outside our family. Those thoughts bring me to tears for both of my children—because while they have each other, Lucas will have to forge his own path in a world that can be daunting and intimidating.
Despite this, we find joy in our home. I’ve discovered a fighting spirit within myself that I didn’t know existed. Most nights, my husband finds me deep in research, searching for the right doctors, treatments, schools, and options for our children. After particularly tough days, he might find me sobbing on the bathroom floor, trying to shield my kids from my despair. On those nights, I feel a profound connection with Lucas, understanding just how isolating and heartbreaking it can be to cry out for help without being understood. But the next morning, I pull myself together, wash my face, scoop up my kids, and shower them with hugs and kisses until they’re giggling and pushing me away. I remind myself that I am resilient—I will discover a way forward.
A few things give me hope. I’m fortunate to have a circle of amazing friends who support my family and know how to make me laugh or join me for a stiff drink when needed! My husband is incredibly likable (I, on the other hand, am a work in progress!), and Lucas has inherited that charm. He has a silly grin, adores babies, and is quite the sharer—qualities I can’t take credit for! I also have a wonderful neighbor, Jessica, who gets my sarcastic humor and enjoys a good drink. Her son, Max, is six months older than Lucas and is a verbal dynamo, chatting away in complete sentences. Despite their differences, Lucas and Max have formed a beautiful friendship, with Max often guiding their play and helping Lucas feel included and understood.
I also consider myself lucky to excel at many aspects of motherhood. I can breastfeed like a pro, whip up meals that would impress anyone (my friends are often envious!), and handle two kids with ease. I adore children and have taught countless kids to read. From finger painting to play dough, I can create all sorts of fun activities. My teaching background and love for kids have prepared me for this journey. My dad once told me before Lucas was born that I was destined to be a mom, and I wholeheartedly believed him. Now that I am a mom—Lucas’s mom—I realize that everything in my life has led me to this role. No matter what challenges lie ahead, I will find the best way to support my child.
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In summary, parenting a child with Childhood Apraxia of Speech presents unique challenges, but it also fosters resilience, determination, and a deep love within the family. Amidst the silence, there is joy, hope, and a commitment to finding the best path forward for my children.