Now Autism 

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.

To The Mom Stressed and Worried About Her Child’s Health

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Dear worried and stressed Mom,

I see you. I see you smiling and hustling and bustling through life. Going to work, working from home, in the grocery store, running the roads, the parks, stroller in toe. Happiness and laughter, but with a slight twist of hesitation. I see the shadows lurking in the corners, ready to stomp across the sunshine in your eyes. The imminent gray that grows and swells, and in a moment, will envelope your happy – if you let it.

I see you going about your day, responsibilities and regrets. Worries if you are spending enough quality time with him. Phone calls to doctors and therapists can wait – but they can’t…I see you pulled and stretched, molded and shaped in directions of choice and directions of fear. Like warm, pulled putty in a toddler’s hands, you’re thin, drooping and sagging. Good, bad, insensitive and well-meaning remarks – they all cling to you, lost in the sticky sea of your soul, they become a part of you. Don’t let them become you.

I see you late at night, wearily standing at your kitchen counter, drawing weekly meds. You wait until he sleeps, for this disease has robbed enough of your time together – you will give no more. While most have a junk drawer, yours is chock full of medical supplies and drug interaction pamphlets. I know what’s in your head – with every pull of the plunger, filling a vial higher and higher, flick of the syringe – this isn’t fair.

Doing this isn’t fair. Being here isn’t fair. This life is sometimes so unfair. So full of hurt you can’t explain unless to another who has also been there. You hurt for your child, although they know no different – you do. And you weep inside and out for what they must endure. You weep because you feel helpless, powerless and you must watch them endure.

I see the pain behind the smile. It lurks in the words of positivity you often speak. You can’t fool me. I know you. I know your scared, overflowing, joyful and broken heart. I know it has no bottom for that dear one you adore. I know it stings. I know it’s sore.

Momma, I feel you. I feel your heartaches, your nausea, your headaches, your sleepless nights, the hesitation in your step as you drag yourself forward because –  THERE. IS. NO. OTHER. WAY. I feel the desperation in your longing – the day you pray will come – when worry of health and sickness will wither away, wash away. Please – take all this away.

I hear your heart stop when the doctor enters the room with results. When a fever is never just a fever, a cough is always something more, weekly therapies, visits to specialists and the ER are your normal. I know the staggering halt that encompasses your entire being. When the world stops revolving and begins spinning, spinning, spinning, out of your control. I know you want to make it stop.

I smell the sweet victory when you can overcome that fear – fight the foe with all that is in you, and then nestle tightly in the quiet moments where the intoxicating scent of your child’s head, the stroke of your finger along his soft and fleshy cheek, holding tiny feet in the palm of your hand, is the elixir of all that is right, and good enough, to always bring you back. Back to carefree, worry-free, stress-free. Even if only for a little while.

I see you there. Soaking in every. precious. moment. Because we know too well, Momma, another one of these is never guaranteed.

I see you playing with him, chasing, tickling, giggling, loving. Wholehearted love. Fierce love. Love that defies anything this messed up earth could bring. A love that fights, hopes, and a love that stings like no other when you find you are helpless to the illnesses and diseases beyond your control.

I see you struggling to keep it all together, Momma. Fighting back the tears, the lump that grows in your throat that you never let out – can’t let out – are afraid to let out. I see you change the station because you simply cannot listen to “that” song – not today, not now. Maybe not ever. I see you congratulate a new mom, and I also see you cry in secret as the pain of your own losses, missed opportunities and anger over a cruel disease, overtake you. I know the guilt you will feel – for everything. For being too much, too little, not enough, wanting more, having more than you believe you deserve. For wishing your child never had to endure life living this fear. That you, wouldn’t have to live this fear.

I know that sometimes when you cry it comes out of your eyes, but sometimes, many times, it just stays in your soul.

I see you strong, Momma. I see you now. I’ve seen you in the past and I know I will see you again. Please listen to me. Read my words. Take my words. You are stronger than you know. You have more fire and feist than a pen of wild bulls, because this is your baby – your heart, your soul. When you feel weak and fragile, like you can’t even make it to your pillow – trust. With all that is in you, trust, and keep your faith close. Power comes in times like these. Strength comes in times like these – where in that brave, costly, intentional action of the heart, pure love wholly lives.

I know you, Momma. I hear you and I see you, and we never need words to speak what we know of each other in our hearts. Your worry is my worry. Your fear is my fear. My strength is your strength – so take it. When you are running low and weary from the fight, press on. When your chest is heavy and you can’t breathe, see the beauty in front of you, pour your heart into the joy that is before you. Hold that baby tight and carry him through…and I will carry you.

Peace be still, Momma. Peace be still.