Parenting is always challenging, but the challenges reach new heights when you are parenting a child with disabilities. It shifts the foundation of a family and adds unimaginable complexities for everyone involved. From unmet milestones, activities that you must avoid, and even denied experiences, all because of what your child cannot do. Some days I don’t know if I’m doing this right, as I’ve learned that my path is never seen as a straight line. The hindrances that come with raising Bella have hit our family hard, however the challenges make the triumphs even sweeter. What is labelled as a weakness is accompanied by an amazing strength. And this is what I continue to learn every damn day.
This quote recently popped up on my IG feed, and reminded me how raising Bella has radically changed the texture of what motherhood is. While driving to work eating my breakfast in hand, I’m going through my mental to-do list of the emails and phone calls I have to make to ensure that Bella’s appointments and therapies are up to date. During the day I wonder if I remembered to sign Petie’s agenda and remind him to pack his library book, while I’m squeezing in some time to catch up on a funding application for an adapted equipment Bella requires for her daily living. From spending my evenings cleaning up in the kitchen and making lunches, I’m also clocking in an hour or two updating Bella’s IEP and programs to ensure that everyone who has a hand in her education is in sync. There are days I cry in sadness and brokenness as it is always hard letting go of the picture of what I thought motherhood would be like. Some days I feel helpless and alone, but in the midst of chaos and doubt my children’s smiles always remind me to keep my chin up. I got this.
Today is Mother’s Day and for this post, I would like to showcase five moms who live and breathe it. I am proud to have these moms as my friends, as I’ve always looked to them for support, advice, and a good laugh. They have taught me that being a mom isn’t a one-size-fits-all outfit any woman can put on, nor is it a defined role I hold with set requirements and expectations. Being a mom is about being compassionate. Not only to be compassionate with others, but most importantly to be compassionate with myself.
~ Kara, Mother to Sebastian & Tallula ~
My daughter only calls me Mom when she’s frustrated. Otherwise, it’s Mama. And when it’s Mom, the emphasis on the ‘o’ is big. I don’t mind. In fact, sometimes I have to bite my lower lip so I don’t smile. Her words are music to my ears. Words I’d not heard the first years of motherhood. Words that came at me in sounds or a computerized voice from an iPad or eye gaze communication program from her big brother. When I tell him “I love you,” He smiles back at me, vocalizing. That’s how he says “I love you” back, and it feels good. He’s just turned 12 and has cerebral palsy, which brings with it a host of other diagnoses that mostly only matter on paper; though their effects alter our everyday life decisions, from when to wake up to what game to play after dinner.
I became a mama a week before Mother’s Day, in the US. Except my son was born in the UK, where Mother’s Day had already passed a couple months prior. What a super amazing time to become a mother, right?! I didn’t even know that it was Mother’s Day. In fact, I didn’t even know what day it was because one was rolling in to the next, much like the current pandemic situation. Except the reason then was different. My son was in the NICU, neonatal intensive care unit. He had narrowly survived through his birth. On my first Mother’s Day I’d just been discharged from the hospital, after a shorter stay than my son. As I was boarding the bus to return during visiting hours, my phone buzzed in my pocket; it was a good friend from the US, the first to wish me a ‘Happy Mother’s Day.’ I was taken aback. I didn’t have my baby in my arms, I didn’t know what day it was, but the gesture was sweet and thoughtful. I swallowed hard to fight the tears and flashed a fake smile that she couldn’t see through the phone.
Motherhood is hard. Full stop. Whether your child has a disability, additional needs, or not. It requires us to give a lot of ourselves, while still remembering ourselves. We change completely. Motherhood has changed and shaped who I am today. Being a mother to my son, Sebastian, has brought me onto an entirely different journey than I’d ever dreamed. The best part, aside from getting to know my son and the way that he interacts with the world around him, are the people in our community that we absolutely wouldn’t know without him being who he is. His birth has shaped every decision that came after.
When I love, I love big. Before I became a mom, I had no idea how big that love could go.
~ Aneka, Mother to Micah & Gabriel ~
Being a mom has made me realize that I'm a lot stronger than I thought. I've never considered my myself to be a pillar of strength of any sort. I just lived my life as normal as can be, but after becoming a parent I realized that as a mom, I possess an inner strength that makes whatever I put my mind to is possible. It's tough being a mom at times, I'm constantly giving of myself and I'm always last in line, but at the same time, it brings me so much joy and happiness. The love that I have for my boys is a love that I've never experienced before. After having my first son I remember being so engulfed in the identity of a mom that I almost forgot about other aspects of myself. I decided to push myself to try new things and make have new experiences. I ran my first 10k (something I never thought I could), tried horseback riding and took moments for myself. My youngest son Gabriel was born last year, we were thrilled, then life threw us the biggest curveball. After only a few days old Gabriel became extremely ill and almost didn't make it. We found out that he had a rare genetic disorder and needed a liver transplant. Having a child who was ill and there was absolutely nothing that I could do was devastating and during that process of about a year, it was extremely difficult at times. Looking back at that time there were definitely times where I didn't know how I made it through the day but I had to be strong for both my boys. Going through the process of taking care of a child with medical and developmental issues has been challenging and full of uncertainties. I know that my son's walk in life will be different but I'm ready to take it on and face whatever is in front of us head-on. I know this because of my faith in God and the great community of friends and family that I have around me.
~ Janice, Mother to Emma & Matthew ~
Being a mom is the most incredible and toughest job that I have. It brings out the best of me, worst of me, tries my patience, pulls on my heart strings and takes my breath away.
Being a mom of a child with very complex special needs adds (in my opinion), a very complicated layer to all the feelings that are already there. I have felt fear, grief and heartbreak like I’ve never know, while also experiencing immense joy, relief and what I consider to be miracles that have been completely overwhelming. It has made me not just a better mom, but a better human being. A human being that feels genuine compassion, empathy and unconditional love. And being a mother to Emma has given me the strength and drive to support other children with special needs and their families, in whatever capacity I can.
As I watch my son sit patiently during his sister’s multiple Sick Kids visits and other appointments, help to give her medicine when she needs it, and take care of her in whatever way he can, I understand the importance and weight of my role and responsibility. As I watch my kids play together without a care in the world, and laugh so loud that the sound travels through every room, my heart feels full. And at that moment, the struggles, diagnosis, tests and unknowns, takes the backseat to pure happiness. #mykids #myworld
~ Christine, Mother to Drew, Emma, Rachel, and Rosie ~
Being a mom (Mum, in my world) has fulfilled my greatest dreams. It's all I knew with certainty that I wanted to achieve in this life. There were struggles to become pregnant and I had to face the reality that it may never happen. But it did, x four.
Now it is time that is not certain. As the mum of four kids with a maternally inherited, congenital neuromuscular disease (no, I did not know) I can say that this is not the parenting journey I expected. Is it hard? You betcha. Would I trade it? No. Trachs and gtubes and wheelchairs and nursing and PSWs and ICU stays aren't typical Mom's arsenal but it's what we've got, and it's how we roll. I am so glad that these kids have me as their Mum. I'm the one that gets to hold our shit together. I'm their primary caregiver, the breadwinner, their advocate, and I get to feed their hearts and their souls full with love that can only come from me. I consider this a position of privilege and I couldn't be more grateful. Even once they're gone I will know that I did my very best by them all out of the deepest love imaginable. There is nothing greater than a mother's love after all, of that I am certain.
~ Anita, Mother to Maya & Nahla ~
Being a mom has taught me what is really important in life.
Being a mom has made me realize that I am stronger than I thought.
Being a mom has inspired me to keep going when things are beyond hard.
Being a mom to a special needs child has brought me the greatest joy and the greatest fear of my life. When my 1st daughter was born, I was thrilled at her arrival, and then terrified of the unknown, even to this day. Maya has complex medical needs, is non-verbal and requires 1:1 support 24/7. Taking care of her and ensuring her safety is hard and has become my full-time job; there was no choice. We've been in the hospital more times than a child should be. We've been sleep-deprived for more than a decade and counting. From the minute she is awake till the minute she falls asleep, we chase after her, keeping her safe. And we will continue to do this for the rest of our lives on earth, and for as long in hers as we possibly can.
It's hard not to feel envious of other "normal" families where a trip to the park or grocery store is a mundane task, but for us is an epic outing. It has been a decade long journey of massive lows and some rare highs to finally appreciate the joy in raising a child with special needs. In the beginning, I too read "A Trip to Holland" and countless other articles/people that spewed the virtues of raising a special needs child. But, to be honest, it was too soon. I had to grieve the expectations lost, accept the situation and then move on. And it takes a village to move on...in our case, an incredible network of extended family and friends so dear they are family. We would have broke early on without our village.
Now, I can truly say, Maya has taught our family to appreciate what matters in life. Each morning she wakes up smiling, we know we didn't have to make an emergency trip to the hospital that night. Each day, she shrieks with pure joy when loved ones come to visit. Each day we pick her up from school, the moment she sees us, her body cannot contain her physical happiness. You can see it radiate from her eyes, wide smile, and every ecstatic movement of her limbs down to her fingertips. Every time you feed her something yummy, she runs around the room and cheers. Emotions are raw and unfiltered. Joy and happiness are exhibited its purest form.
And there has been no greater joy in my life than seeing Maya with her sister Nahla and the special bond they share. Although younger, Nahla has been Maya's biggest fan, supporter, advocate and protector. She cares and interacts for her special needs sister in a way we never could. Many times, as a parent, I have felt immense guilt in all the things we couldn't give or do with Nahla because of Maya's condition. But, I now realize Nahla has become the incredible person she is because of Maya. And those "things" are simply not as important.
Maya has taught us unconditional love, and to enjoy each day for what really matters.
Thank you Anita, Aneka, Janice, Kara and Christine for taking the time to open up your world to my readers. You continue to inspire me to be compassionate in my words, in my work, and in my will. To end this post, I would like to share a documentary that was created by Accessible Media Inc. (AMI) called Our Community, Different Is Beautiful. This past fall, Bella and Petie had the opportunity to part of the the Holland Bloorview, Happy Soul Project 2020 #DifferentIsBeautiful calendar photoshoot. The Happy Soul Project is championed by a beautiful soul, Tara McCallan. I’ve been following Tara for many years on social media, as her honesty and quirky outlook on raising a family of 3 (including one of the lucky few) has always inspired me to thrive in the beauty of our differences. I finally had the opportunity to meet Tara through her Happy Soul Project, and was beyond delighted to contribute to this documentary. Please take a moment to learn from this mom as she shares her wildest, saddest, happiest, most challenging and most rewarding parts about raising a child with a disability.
