As I work through Sam's new diagnosis in my head and in my heart, it brings to the surface so many thoughts and feelings. I want to begin this post with another post from fellow blogger Pia at http://www.thecrackandthelight.com/.
Hello?
New teacher, or therapist, or doctor?
Is that you?
Oh hello…I just wanted to chat with you a second. To caution you. Or warn you.
Please, tread carefully. You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well… you see that heart?
The slightly broken, definitely bruised one?
Yeah, that’s my heart. My slightly-broken, definitely-bruised heart.
Now, I realize that as you look at me you might see…a confident parent… or an angry parent…or a happy-go-lucky parent…
You might think that I understand everything… or nothing…… or that I have all the experience in the world because I have done this before… or that I know the rules… or that I don’t know the rules and that is for the best….
You might believe… that I am high maintenance… or overreacting… or maybe neurotic… or disengaged and uninterested… or that I don’t really care… or maybe I care too much…
But regardless of what you see, what you think, or what you believe, this is what you should know:
I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if the wounds are healed, or healing, or fresh and new.
This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don’t speak, in judgment or not, my heart is out there.
Some of “us” parents… the ‘special’ ones… can be a pain in the ass. I know that. WE know that. But we are fighting a fight we never planned to fight, and it doesn’t end. We don’t get to clock out at the end of the day. We don’t get a vacation from it. We live it, everyday. We are fighting without knowing how to fight it, and we depend so much on you to help us. We have been disappointed, by you or others like you. And we are disappointed in ourselves. We are your harshest critics. We are our own harshest critics too. We are genuinely fearful, and driven, and absolutely devoted. And we also know, we need you. So please, be careful with us. Because as hard and tough as we may look outwardly, our hearts are fragile things.
When I read Pia's post, it spoke volumes to me. Sam has been given so many labels and in all honesty there are probably a few more we could tag on. His medical history has not been an easy journey. But through it all....I am and remain Sam's mom and I will never guess what God's plan is for Sam. I have tried, but I have been proven wrong each time. My job here on earth with this wonderful little boy is to love him unconditionally, believe in his abilities and NEVER EVER PUT LIMITATIONS ON HIM! When I choose to limit what I do or how I work with Sam, when I do things for him instead of allowing him to do them on his own, when I buy into the labels he was given and allow them to determine the things he will not do, when I don't take the time to figure out how best to show, teach, and explain/work with Sam....I AM DISABLING HIM.
Do you hear what I'm saying...this is my internal battle with myself. So as Sam's doctor, therapist or teacher...now you know where I am coming from. I don't accept a minor hearing loss as okay, I don't accept teaching one form of communication at the expense of another okay, I won't accept the statement, "Sam will probably never be able to....." fill in the blank. Because if I do, if this is my belief...what chance...what hope does Sam have??? We will reap what we sow. God tells us that.
Give our kids a chance to show you...to teach you as they are teaching us. Don't ever give up on them, don't compromise and take the easy way out. What if Einstein, Walt Disney, Helen Keller, Charles Schwab, Nick Vujicic (http://www.attitudeisaltitude.com/) mothers would have given up on them...where would we and they be today? Before you talk to me about limitations, modifications, medication...look in the mirror...picture someone of authority, a professional saying this to you about your own child, a child you love and believe in with all your heart...and then come talk to me.
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Powerful post that I need to share on my blog and social media sites! Sue - you continue to inspire me with your grit and determination and on days when I want to cave in and hit the easy button; you inspire me to jump the next hurdle along with YOU!
ReplyDeleteHugs, Prayers & Love -
Stacey