I am not special

There’s this saying that goes around “God only gives special kids to special people”. I’ve read it and  heard it during this journey with Cri du Chat Syndrome, and I have to say that it drives me a little batty for a number of reasons. I’ve started and stopped this blog post a number of times over the last few months because I sometimes can’t get the thoughts in order but I’m gonna give it a go here today.

First of all, I’m not special. I’m really not, particularly in the way that this quote intends. I am a mom who is committed to her kids, always tired, sometimes frustrated but overall, pretty darned happy. Sound familiar? I have a child that was born with Cri du Chat Syndrome but that doesn’t automatically qualify me as special. If you had asked me before Eli was born if I could take care of a child with exceptionalities, I would have said “Sorry, but no thanks”. At the time, I would have thought that I “didn’t have it in me”. In reality, I just didn’t understand the whole picture. I, like many, subconsciously looked at people with any type of disability with a bit of pity mixed with fear. It pains me to say that now, but it’s true. I didn't realize it at the time but, even though I would have said that I was an open and empathetic person, I actually saw people who were differently-abled than myself for what they couldn't do. It’s not a proud realization but one that I feel is important to share because, if I felt that way, I know that other people may feel it too. I know now how wrong I was and I’ve learned so much from being around and learning more from many different people with different diagnoses. Thank goodness I see a much more full and real picture, but that was something that was learned (and is still being learned), not innately in me already.

Secondly, I’m a big believer in universal energy, in the amazingness of human biology. I don’t believe that one entity chose me as Eli’s mother. I believe that Eli was conceived and that the little cells that would become him rapidly multiplied and developed. I believe that the spontaneous deletion in the small arm of Eli’s 5th chromosome just happened, because that’s how it works sometimes - sometimes there are deletions, sometimes extra chromosomes, sometimes multiple copies. These are part of the wonders of human biology. I believe that Eli is exactly who he is supposed to be, similarly to any person born with any kind of naturally occurring attribute. I believe that as his mother, it is my job to honour him, celebrate him and give him whatever he needs to thrive. There is a huge comfort for me in that. I don’t think he was chosen for me but I am damn glad that I am his mama.

 

{Come with me on a little tangent for a moment….The thing is that we are all on this human spectrum of neurodiversity with different abilities and disabilities. Some of these have been researched and have a name, like Cri du Chat Syndrome. Unfortunately, the society that we have created doesn’t honour and celebrate this diversity, far from it (tangent within the tangent - the statistics of ending pregnancies after a fetus is diagnosed with any number of syndromes is staggering and, while I would never want to take away a woman’s right to choose, I also think there is a huge opportunity to share more truthful, positive and well-rounded information so that the mother can make a more informed decision). This can make it so difficult for people of many different abilities to take part in day-to-day life, whether it is in the workplace, the education system or on the bus. I have seen a few instances where a business has celebrated diversity and included individuals in the workplace and I think we are only just beginning to scratch the surface of what promoting neurodiversity can add to our life experience. How the hell can it not add to it?!?!  I look at my little guy and see pure, beautiful, amazing potential. I don’t know what his path will be but I know he is going to contribute to the awesomeness of the world around him, just as his sister will. So there!}

 

I’m going to be bold and say that it is actually dangerous to imply that only “special” people who have been “chosen” can handle/deal with/raise “special” kids. It may seem harmless but it allows for a general idea that people who have exceptionalities can’t fit in with the general population who weren’t “chosen” and that they can’t be accepted for who they are by those around them. It continues the “us and them” division where what we really need is inclusion and recognition that everyone has something to contribute whether it’s a new way of learning, a different way to communicate or a hearty and joyful laugh.

I’m not special and you don’t need to be either. Do you need to be open to growth and understanding and willing to accommodate situations to allow for inclusion? Yes, of course, but that just makes you a decent human being. We need to stop looking at what people (ALL people) can't do and focus on what they bring to the table, to the world around us, to our experiences in this life. It will make our experiences so much more full in so many ways.

It needs to be said that I am not speaking as someone with a disability but as the mother of a child with exceptionalities so I feel I need to tread lightly sometimes. This is my experience in a way and in another way, it’s not. It’s actually not about me at all. It’s about advocating for my child and being an ally for those with any kind of disability.

I will finish by saying that this is definitely not to trivialize the experiences of parents of kids with exceptionalities, especially those with children who are medically fragile. Certain instances can be absolutely devastating and require a strength that goes way, way beyond normal parental experiences, or any experience I have ever faced. There are struggles and heartbreak and questioning and anger. There is also immense beauty in the triumphs and the rising up to meet whatever comes down the path. The specialness comes in facing it as regular parents who just absolutely love our kids for who they are, doing everything in our power to protect, support and lift them up - something I know we are ALL capable of.

 

Love and light,


Leah