Perspective is Everything would have been the initial title for this blog post but late last night just before falling asleep, something nudged me—A Mother’s Perspective felt more suitable. I’m not the most eloquent with words but somehow within this space I’ve become somewhat of a storyteller.
It’s been 10 years since my son’s diagnosis. Ten years of journaling, thought processing, post it notes, phone recordings and months and months to fathom the way I want to share a synopsis of my side of things. This isn’t about my son. This is me speaking from the heart.
Upon receiving the diagnosis, there was an indescribable rush of sadness; Minutes had passed but it felt like hours. Silence. No words could be exchange without tears. “It’s the grieving stage.” someone said to me—as if it even mattered. I felt completely lost and uncertain. Family and friends were so supportive and always there to listen, which helped greatly, but no one really understood what it felt like. I wasn’t even sure I understood how I was feeling about it. There were moments of denial.—This can’t be? Is this really what’s going on? Is this really necessary? Does my kid really need this? And then came the feeling that consumed me the most of all, fear. Fear for the future. Fear of what life would be like. Fear, uncertainty.
At first, I was numb, scared, anxious and disconnected. Constantly, overwhelmed by the amount of information at hand—all the this and thats. Our days left like just go, go go….go to speech therapy, go to OT…let’s do this and let’s do that….books, diets, schedules….Please don’t misunderstand me, the support system of professionals and their help is invaluable and it guided us to have some structure, especially in the first year but as his mother, in it all, I felt that my son and I lost our connection.
I’d hear people saying different things about his diagnosis. Some just threw their thoughts and opinions out there, without the slightest consideration of the repercussions. I was criticised about my parenting. I was judged for not doing something according to a book or something deemed as ‘the right way’. I doubted myself as a mom time and time again. Some made me believe that feeling love, empathy, belonging would be unattainable, hard to teach….and that broke my heart more than anything else. Then, a small moment in time changed those thoughts forever. Shifted something in me. A peak moment describes it best.
I was at home with my son and I remember feeling overwhelmed. So, I went to my bedroom, closed the door and I sat on the floor quietly crying. I didn’t want my son to hear me or see me. I just needed a moment to myself to work through whatever was happening. So, I sat there for a few minutes on the floor and cried and cried. Shortly after, his little hand knocked on the door and with his little voice asked me, “Are you okay mom?”. Then and there hearing him, my heart bursted. There it was, love and empathy just behind that door. I opened the door, hugged him and held him for a moment. “Don’t be sad mom. Everything is going to be okay!” That’s all it took to bring me back to life.
Somewhere, somehow I had forgotten to trust my instincts, to believe in myself. In that moment, I knew that I no longer wanted to let fears define our family. I listened to my instincts— slow down, there is more to this. I listened to God and I became the person/mom I was meant to be. It was an awakening to start moving in another direction. I trusted the knowing in my heart that there is a life to be lived beyond a diagnosis. Eventually, I came to understand that my son’s diagnosis became a wake up call, a blessing in disguise.
At first, I felt that I had to be the good mom and I made sure that I followed protocols and text book guidelines to the T. I felt like it was up to me to fix everything. Daily programs with set times where placed. Sticker charts for good behaviour were made. OT activities at home.—I was constantly checking things off a list.
There were moments when I asked myself, “Is this what motherhood looks like?”. I felt more like a full-time caretaker rather than a mother. I guess it’s a fine line between the two; but which one comes first? Did it matter? After reading many, many books, articles and listening to podcasts about parenting, life, goals and well-being….it all came down to one thing, how we (parents, moms, dads, people….) perceive and approach matters. It always starts with work within. I was tired of feeling insecure, I was tired of being shadowed by other people’s opinions, I was tired of being criticised….I was weary of that mindset. I wanted to make memories with my son, not check things off lists.
I started letting things go. I told myself that I could not control what people think or what people would say. I’d be criticised regardless of how hard I tried or what milestone my son achieved. What I CAN control is how I feel about it. So, I picked myself up and started putting all the scattered pieces of myself back together. I educated myself more. I read more books. I asked more questions. I tried to find the right tools that would benefit our family because let’s be honest, it’s the parents that spend the most time with their kids.
I wanted to stand on own two feet again. I wanted to be empowered. I wanted to be a role model for my son. I wanted to start feeling good inside and out. I wanted to make memories with my family. So, I made it my priority to take care of myself physically and mentally so I can therefore be more present and whole.
“You can’t pour from an empty cup. Make sure you’re filling your cup first so you have something to pour into others”
It’s a healing journey and mine began when I visited my family in Canada. We were staying at my sister’s house and I remember sitting in her sunroom, enjoying a nice cup of cappuccino when suddenly I stopped and realised that I felt a compelling sense of tranquility. I looked over at my son as he was playing with some blocks and he also seemed more calmer, more grounded—he loved staying at my sister’s house. It was my sister’s choice of the natural tones, cosy feels, minimalism that created this tranquility and I was sure that my kid was feeling it too. I needed to feel this sense of calmness in our home so, that’s where I started. The slightest changes that were made, had such a positive impact on our well-being. Our home became what I wanted it to be—welcoming, cosy, calm, our safe space. Within our home, we created little habits and slowly we found our connection. We got to know one another. Peak experiences within our home became the foundation of our connection, our relationship. (Interior Edit Vol.2)
The sense of carefreeness which exists in the Mediterranean lifestyle and an appreciation for the slow life has made a profound difference in our life. There is a set of unwritten rules when it comes to this way of life—Wednesdays and Fridays are for legume dishes. Sundays are family days. Coffee time is a sacred moment. If you can pick it, then it’s good for you. This way of life has reshaped the way I eat and has inspired me to live a life more accordingly to the seasons. Coming from Canada, it was hard adjusting to the rhythms of life here, now having learnt its effects on the overall wellbeing, I wouldn’t want it any other way. It’s grounded me. It’s reconnected me with nature and I value far more the simple things in life.
Through it all, I’ve discovered many aspects of myself; new found joys. I’ve become a hummingbird as Elizabeth Gilbert would say! I take great pleasure into making beautiful meals for my family. I look forward to waking up in the morning and give myself time to just sit and enjoy my coffee before I start my day. I’ve been reading more. I seek those little daily rituals that spark joy so I can the best version of myself.
It’s not an overnight fix. It takes time, patience and a lot of inner work. I’m forever grateful for that awakening moment in my life—it not only changed me, it changed everything.
“If you get the inside right, the outside will fall into place.”
-Eckhart Tolle
Altering the mindset of Am I? to I am was my turning point. If I would have told my 31 year-old self that this is our life, I don’t think she’d believe it. But here we are and life is beautiful! Time and time again I say that my son’s diagnosis was the best thing that ever happened to me. I’m not the person I used to be. I am more sure of myself. I am more confident as a person, as a mom. I overcame my fears and I allowed myself to just be and live in the moments.
I once heard this mother on instagram say, “Our children express what we suppress.” When I first heard this quote, it scared me because I didn’t want to believe it to be true. But it also drove me to look into to what she meant by it. Here’s what I perceived, the moment I worked on myself and figured my own things out, my kid started changing. The more confident I got, the more my kid became independent and more sure of himself. I’m no longer afraid of what comes next. It’s the now that matters. So, this is my why friends. This is why I do it all. My kiddo is my why. I thank God every day for choosing me to be his mom.
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Journal exerpt 20/10/2022
I am a good mother. I am able to make our family what God wants us to be. I am strong. I am the mother I want to be. Taking it one day at a time. Feeling hopeful is hard but within me I had to believe that there was more. God is always there. “
Be transformed by the renewing of the mind”-Romans 2:12
I didn’t want to live a life of worrying and what ifs and letting others find solutions for me–I wanted to find solutions and challenge myself to the CORE so that I can be the role model for my son
I have a life just the way I imagined it because I knew inside me it existed. That was my goal. I had to find my authentic self to be the mother that my son needed. I had to find her and sit with her and be patient with her so she could come to the surface and be that woman/mother that transformed her life into what she believed it was in her heart and in her soul. God put those thoughts in my heart so that they may bloom and exist.