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| The day Malakai arrived - 08/08/08 - moments before his secret was revealed and our lives changed forever |
So, as any respectable Type-A Personality with an additional Virgo streak will tell you, I have blog posts lined up, ready for publication... But I'm going to have shelve the post planned for today because as life would have it, I have a serious case of 'gotta-share-what's-on-my-mind-right-now-alitis' (please excuse the spelling on that one).
Since Malakai's birth and diagnosis, our lives have changed exponentially. And not just in terms of the time and money we spend on Malakai's therapies and doctor's appointments, sleepless nights and constant planning... It is our life-long commitment to do everything we can to let his light shine brightly in the dark spaces that hide between notions and concepts of 'worthy and unworthy', 'success and failure', and ultimately understanding more deeply with every moment that all life is worthy - deeply, profoundly and incredibly worthy.
I have in the past been approached by people brave enough to ask the question, "How does it feel? To have a child with special needs? How does the whole experience feel?" Sometimes it comes from a friend, mostly from a stranger, and on the odd occasion from someone who themselves are facing the possibility of a diagnosis.
The truth is I have never had an unequivocal answer - it changes over time, as any journey into parenthood changes, but perhaps the easiest way to describe being a parent of a child with special needs is ask that person to do something to their perspective that will dramatically alter the way the see the world around them. Walk around on your knees for a day looking up at everything, or stand on stilts looking down, or put on very thick glasses that magnify everything - whatever it is, do something that will profoundly change the way in which you perceive your 'everyday' world.
This is how it is feels raise a child with special needs - a profound change in perception. It is not horrible, or ugly, or unfortunate - it is just different.
Then, imagine trying to chat to your other mommy-friends about their children and their day-to-day happenings when you know that your perspective is utterly different to theirs.
Your problems are different.
Your dreams are different.
Your perspective is different.
And you can never ever change back. You can never un-learn the new way in which you see the world - it is with you for life, and for those reasons you will always see things a little differently than the rest of the world.
Is this a bad thing? No, I don't think so. Is it sometimes lonely? Yes, for sure.
I agree wholeheartedly with you. It is different and it can be very lonely. And you're right again -- there is no same answer to give when asked how it feels to have a child with special needs. And there should not be one same answer because each child is an individual anyway.
ReplyDeleteThere are fleeting moments when under stress I wonder what my motherhood would have been like if Gabe was not born with Ds. But those thoughts are not unlike being a 48 year old woman trying to wear a 20's-something outfit and hairstyle. It just doesn't belong in my thinking process. Perhaps pure acceptance of knowing you can never ever change back to the "before" is what makes this free fall into special needs motherhood powerful? It's against the "norm" and as Gabe's mom, I'm reaping the joy and challenges that ANY mom is? Not sure...but I cannot go back to the woman I was or the life that I had thought I would have as mother.
Sometimes, I think the strongest root in my role in advocating for Gabriel to be seen as a person first, is for society to see ME as a person first. Once that relationship is born, how can one deny that our journeys are that different.
Thank you for your comment Lee!
DeleteI agree - it's like swallowing the little blue pill (from Alice in Wonderland), and boom! You can't ever go back. But it doesn't make it bad or wrong or horrible - just different. For me, the easiest way to describe it is a profound change in perspective, because of the beautiful journey we're on, but also as a means to survive and thrive on the journey. Old perspectives do not serve me or my son, and so I have to discard them.
It would be nice to find out if other mothers of kids with special needs feel the same way about perspective?
Hi LOren, I never realised that Barefoot parenting is your blog! I have often wondered how to explain to others. One thing I know: I HATE- sympathy!!!! Anyone who Pities us for having Kallen and continues with it, will no longer be a friend. I too stare at people with disabilities, but now it is with admiration, because I realize how hard those people work to accomplish things. Lately with Kallen starting school, it tires me to have daily struggles to do things and be creative and constantly work against his stubbornness, knowing, when we have a break through, that that's not the end of it and that there won't be time to relax, because tomorrow or just a little later, it continues and will do so for a long long time. In our little family of 6- with our 4 boys, we concur mountains like Kilomanjaro and Everest on a regular basis. The work and preparation- many times emotional and psychological, is THAT hard and exhausting, BUT accomplishing a milestone or new goal, is also THAT rewarding......if not more. We have learned to set small goals.....Kallen has taught us to celebrate...with exuberance....and joy, whether little things or big things...we celebrate. I totally agree with you that I hope that we may change people's perspective. I am glad that I am who I am today...because of Kallen. I sometimes wish for life to be a little easier, but never wish my life to be just what it was before him!!! Life was definitely to tasteless!!!I love the new aroma of our life!!!!!!
ReplyDeleteThank you Karien for your comment!
DeleteI agree that 'pity' is a terrible thing, and actually does the opposite of what the person dishing it out thinks it will - it hurts more than it helps. But, then, I've learned also to take it from where it comes and try not to let it annoy me too much...
As for our journeys - I agree with you wholeheartedly that life now has a beauty and meaning it never had before. I would not swop our life for anything else, even though it may be hard at times, and tiring much of the time, it is also rewarding, precious and amazing.
Keep sharing your thoughts and maybe we can start a little 'community of sharing' here in SA?