I need your help in changing the way the world sees anyone who is different. The words that are to follow are important, and stringing together the appropriate letters to convey what is in my soul right now, feels just about impossible. Writing from my heart can be painful, but it’s 100% real, and real is what I always strive to be.
A few days before Christmas 2016, we went for a second opinion and more information regarding Luke’s cortical dysplasia/cerebral palsy. Our previous neurologist transferred out of state and we had made this new appointment with a very reputable doctor last Winter, waiting a year to see her. Going into the appointment I wasn’t worried. I already knew Luke’s diagnoses and challenges but I wanted a clearer picture, a better understanding, and to discuss some concerns.
So tonight, I want to share with you, and the world, that I have a son, his name is Luke. He just turned 3 and he is so perfect and so beautiful that even now, I still can’t believe he really belongs to me. He makes me believe in God and in miracles. He lights up my entire world…and he has autism.
And although this isn’t shocking to me – I have known in my heart for quite some time – I still have moments of shock. I know in a few days the sting will wear off more fully but what won’t wear off, is the overwhelming sadness and fear for those in this world that are tormented because of their differences. This is where my heart has been sitting since last week. I can’t talk about it without tears. Even as I type this, I can barely see through them all.
I’m not sad for Luke, I’m not sad for me, for our family – Luke is amazing just the way he is. I’m sad for the people in this world who are so closed-minded that they will never see the beauty in someone with a disability. Until you spend some good quality time with Luke, you may think he is a typical toddler, and in many ways, he is. But he struggles – interacting with his peers is extremely upsetting to him – so he doesn’t do it. He has meltdowns. His left hand frustrates him, his left foot isn’t as stable and causes him to sometimes fall or appear very clumsy. Transitioning can be absolutely unnerving for him and he has difficulty expressing and communicating. He is impulsive and at any given time an object could be on a trajectory for your head (unintentionally). He sometimes needs to repeatedly spin in circles (I would barf) or throw himself into hard surfaces – maybe even you.
I could tell you more about Luke’s challenges and things he struggles with, more of his quirks, but instead, I want to tell you who he is.
Luke is capable of giving the best and most amazing hugs and kisses ever. He has a great sense of humor and can make a room full of people laugh. He absolutely loves adults and is extremely engaging and a total sweetheart; everyone who meets him, loves him. He sees beauty everywhere – and he makes sure you see it, too. He is polite, he is caring, and so very sensitive. He is the best and biggest helper. He ALWAYS knows where the sun and moon are at any given time. He has amazing hearing, and tells us when aircraft is approaching long before we can hear or see it. He loves music and has some pretty fancy footwork. He is very bright and super inquisitive to the point of driving me mad most days! He has an absolutely incredible memory. I could go on and on…These are Luke’s gifts. Nothing of which to be ashamed, or to hide, they are uniquely his.
Most simply put, Luke is love.
It’s not disability that robs us. What robs us, are our minds and the negative thoughts we house in them. Each of us is a vessel through which either love and positivity flow, or, negativity and sadness. We have the choice every day as to what type of conduit we will be to each other and to the world. And as long as I am on this earth, I will do my damdest to be sure Luke will only know love and acceptance.
As you’re reading this, you’re perhaps thinking that I have it all together – that I’m so positive – and you’d only be half right. I am positive. I worked for that and earned that many, many years ago in my childhood. It’s who I am, and I thank God, because I never would have made it through without that thought. But having it all together? No way.
This last year has been extremely stressful and challenging as I kept silent in my heart what I knew about Luke, until we received a diagnosis last week. We are challenged daily by his behaviors. I have searched and researched, for every possible activity and experience to give Luke, so as to help him – our nights and weekends have been consumed. I’ve spent so much time at his daycare to help him better interact, his classmates now call me “Mommy” and it’s totally possible that if you were to peek in the window, you’d see me holding someone else’s child, or wiping their nose, or reading them a book, or just plain handing out hugs and giving knuckles. But I don’t mind any of it.
While I haven’t had much time for myself lately, it’s okay, because my son only has one shot at being helped early. Now is the time for the big push. He has made some great strides in the last few weeks and we know it’s from supports my husband and I have sought and have been providing both ourselves and through therapists. Now he will have access to even more and for that, I am so relieved and thankful.
So no, I don’t have it all together and this is not the least bit easy. I have a lot to learn. It’s not as cut and dry as heart surgery (but thank God it’s not heart surgery, again!) I am exhausted most days, cannot sleep most nights, and am often times the primary parent caring for Luke when he is struggling. He and I have a very strong connection that is different from that of he and his Dad. Being able to calm Luke comes very naturally to me and while it’s not always foolproof, most often I can at least desecalate and stabilize, and bring him comfort.
If I can ask one thing, please, educate your children, educate yourself. Talk to your children about the beauty of a world filled with differences. Kids are perceptive; they know when a child looks differently, acts differently, or talks differently. And maybe one other thing – stay connected to the people in your life. If someone drifts away, there may be very good reason, but perhaps not one they are able to, or can share at the time; don’t assume, don’t judge. Your text, phone call, offer to go to lunch or grab a coffee, will speak volumes to them, and could very well be the thing that gets them through some pretty challenging moments.
Remember that this life isn’t about YOU. This life is about others. What joy can you bring to someone else. How might you ease their discomfort. The measure of a life well lived isn’t in the loud displays, accolades, and self-seeking recognition. It’s in the quiet moments when you choose to be a conduit of love and pure acceptance to someone else and no one else knows – it’s between giver and receiver. We can all strive for this, every day.