There are a couple of sayings we hear as special needs parents. One is “God only gives special children to special parents.” Another is “It takes a special parent to raise a special child.” Best of all is the simple “I could never do what you are doing! You are a super mom!”
Now, I can appreciate these statements and have come to understand the well-meaning behind them. But I am here to tell you that this is all a ruse. The secret is out… I am not special..
I am simply just like you. I think, given the opportunity, that most people would be able to step up to the plate to be a caretaker. Even if it is not your child, imagine your parent or sibling getting sick. You would step up and help out without question and it would simply become part of your life. How many times have you heard someone has given up their path in life to take care of another? They are not any more special than they were the day before. They are simply accepting their responsibility and altering their path to accommodate it.
Believe me, I was just like you before Z’s diagnosis. No one told me I was any more special than the next person. I wasn’t solving world problems or even caring about my neighbor that much. I can admit today that I was selfish and lacked for nothing. I could be described more as the “baby chick” versus the “mother hen” in my group of friends. Other people took care of me and I am so thankful for them every day now that I am on the other side of the coin.
Then one day, I learned my child was special. One day I shared that news and suddenly I became “special”. One day you are pregnant imagining the child you will have. How they will achieve great things, love others and one day rule the world. The next day you are welcoming a very different scenario into your life. You have found that your bundle of joy may only achieve small things, they may not be able to properly express love and ruling the world is going to take great effort.
But you have this bundle of joy and you make things work. You step up to the challenge because, bottom line… you have to. There is no question that this is now your path and you make the necessary changes to accommodate this bundle into your livelihood. You may have to quit your job or alter your occupation. You may have to move to an entirely new city that can provide better services and affordability (did you know it costs quadruple the amount of a typical child?). You may even have to modify your home to accommodate a disability.
But you do all of these things with the grace you don’t think is possible to have. You are hurting inside but you learn to hide that for the sake of others. This is your new life and you are going to master this new life (because that is what you do).
As the years go by, you might be required to become more “special” than you ever thought. The gap between your child and their peers begins to broaden and you become alienated from family or friends who aren’t keeping up with the changes in your life. You learn to love your job for what it is, love your city for what it can give you, love your life modifications. Because that is what you do.
There will be days that you don’t feel special. That you feel downright bamboozled from the life you should be leading. Your own gap between you and your peers begins to broaden. They may receive promotions you cannot take. They may move to cities you could never live in. They may see their own children ruling the world from the start. But you keep going because that is what you do.
You see.. We are not special parents. We are far from it, let me tell you. We have bad days where we aren’t excited about the small steps as they only remind us how far we have to go. We have bad days where we get upset with our kids despite the difficult life they are living. We have bad days where the envy and jealousy of typical families takes over and engulfs us in grief. We have days where we wake up grumpy and take that out on others. And we definitely have days where we forget our teaching moments, allow screen time and let our kids run wild so we can get through that chapter of the new book we started and finish that glass of wine.
We have days where it simply sucks. But we keep going. Because that is what you do. Now, if you still want to call me “special”, I will not stop you. As I said, I have grown to understand the intention behind it. I know it is your way of acknowledging my fate and appreciating your own. My hope is to inspire you to become that “special” person in someone else’s life.
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Tilted Axis 