My Superhero: A KBG Journey

My #HonestMotherhood intro to our life and journey through the diagnoses of KBG; an ultra rare genetic deletion syndrome.

It’s easy to share our motherhood journey when the days go well, and even when they are filled with the ‘regular’ daily struggles of raising tiny humans with huge emotions and growing personalities. But what about the BIG stuff? The GIANTS. The things that people can easily misunderstand and misinterpret?

(Over) sharing, particularly on social media, is certainly not my go-to in life and maybe that is because we see its negative effects everywhere. Yet, writing and putting feelings and experiences into words, is. And perhaps worse than oversharing, is suffering in silence while paralyzed by fear of the unknowns that come with vulnerability.

Showing the beautiful amongst the chaos is something I have felt called to at various stages in life. While I endeavor to do it, it does not necessarily come easily, however. I am also aware that finding ways and words to accurately depict and communicate the ever-growing gratefulness and never-ending love, of motherhood along with the simultaneous collision of struggles that come with this inherently important position is not just challenging for me, but many others as well. Sometimes, we must simply plunge into the unknown bravely — in hopes we can help light the way for others.

Being My two beautiful girls (Willow and Eden) mum is my greatest joy, treasure, and honour — Yet, with the unexpected parts of ourselves being revealed in our children (showing up to throw curve balls in our plans and expectations) along with the unique individual make ups of each child, learning to parent well is challenging to say the least! (If you have kids, you already know haha) and…. It is a great responsibility.

Learning to mother through special needs and disabilities is a path I never imagined I would be on. It is a path harder than I could ever have known, and it is an extraordinarily, special role to have in life.

Eden is the most remarkable, strong, brave, little girl I have ever known. She was born with a wildly powerful determination. In fact, her birth was against all odds and her fight started even before she entered this world. She has continued to defy odds since conception and has proved to be an overcomer time and again from then until now.

Within the first few years of Eden’s life there were challenges as she struggled with physical pain in her body and certain unusual developmental markers. There came many suspected diagnoses as we investigated, however none were official until last year.

In March 2022 at the little geneticist’s office at McMaster Children’s Hospital, alone with Eden (pandemic struggles, and a story all on its own!), the doctor walked in and uttered three confusing letters that I never realized would have such a powerful impact on life: KBG.

We came to understand that KBG is one of the rarest gene deletion syndromes in the medical world and affects one both physically and developmentally in ways that are not yet fully understood. For Eden, it is not inherited, but “De-Novo”, or “random” as experts put it.

Our girl has Super Powers:

Over the past year and a half since the diagnosis, I have gone through various mental phases. Self blame and questioning of all kinds of course. Is there anything I COULD have done to prevent this? Is there anything I DID do to cause this? Is there anything I SHOULD have done differently?

Next came thankfulness that it wasn’t something “worse” (many tests came back negative that would have been life-altering to an even greater degree). There was the denial phase, that ignoring it may make it disappear. ‘Maybe this really won’t affect things that much at all!’ ‘Maybe she can live her life without even knowing!’ ‘Maybe no one else will ever know!’

The desire to protect her from labels and stereotypes (to make sure she is never put in a box) was gnawing and desperate. I know that Eden is beyond any boundary that can be placed on her, but will others? Part of me (still) wants to keep her bubble wrapped in our own protected world where all she knows is that she is perfect, and truly a superhero!

Sometimes we can easily forget that facts and truth are not always at odds. The fact is that Eden has been diagnosed with a super rare condition. The truth however is that she was born for something bright. There is no doubt in my mind that every single miracle and obstacle she has overcome is because of her destiny. The fact cannot deny the truth, and the fact does not need to be ignored for the truth to prevail.

With this idea of honest motherhood often mulling around in my mind, I’ve found myself jotting down many notes about this journey our family is on with Eden. One thing I know for certain is that when I have felt a calling to share something with a web of words, it doesn’t relent in pestering me or filling up my mind space until I begin to let the words escape. Through this next phase of life, those words may be plentiful, and the stories may keep on rolling.

I never imagined that this would be my story — that I would be the mum of a superhero. Parenting through special needs and disabilities can truly challenge you in the most peculiar and unusual ways. The daily obstacles can sometimes feel crushing, but the breakthroughs feel world changing. The strength I see in her eyes as her light shines, and she fights, is deeply inspiring.

Some days I feel totally inadequate to help her — but I know without a doubt that I was handpicked to do this with her, and that we will face every challenge together, and that we will conquer every single one too.

So, as I continue on this often-wild ride of motherhood with my two warrior princesses, my beautifully curious and courageous Willow and my brave wild-flower superhero Eden, I will share more of our stories, in hope that other mamas find strength and comfort within my words, while searching in the quiet moments that happen between life.

I hope that stumbling across my journey and experiences offers hope and a perspective that beauty and the challenges can, in fact, intertwine to create a masterpiece of life.

I can’t promise it won’t be messy or ugly at times — This role is HARD. But often, right before our eyes are the most rewarding and wonderful opportunities we could ever be given