It has been some years now since my life was so profoundly changed. I often wonder if I could reach from where I am now and write a letter back to myself then, what I would say.
What do I know now that I didn’t know then? Is there anything worth saying at all? I find that yes there is, and if I could write a letter to myself it would be gentle and strong at the same time, but oh, what a weight it would carry.
Yes, you are sitting in the parking lot shivering under a warm December sun trying to work the keys within your numb fingers to find the ability to muster the strength to drive home. You’ve just left the office where your son was diagnosed with significant life long special needs. Yes, this is enormous! People will want to comfort you and tell you that it is not, but it is. In YOUR life, it is. Stop apologizing for that right now!
Your pain and mourning for the “ordinary as milk” dreams that were lost today do not mean that you love your son any less. In fact, I promise you that you are going to find that it means you will love him with an intense fierceness. You will find tenderness and softness you never knew you had, and you will change as you grow. You will become harder. You will be the most fragile that you’ve ever been. You will learn that you have within you the strength to carry a daffodil safely through a hurricane. Accept your pain.
Because it does get better! Oh, don’t ask when because it’s such a process. Some days you’ll be up on top of the world and find you’ve not thought about IEP’s or neurologists or therapy for days and the next you might find yourself weeping at the video someone else posts of their child’s first Pop Warner game. Special needs like your son ’s like having a target in sight and just missing slightly wide of the mark, achingly close but just slightly off. It also means watching other children pass him by. However, longer and longer strings of days will come and go, and you won’t feel this first overwhelming blot out a sense of white.
You will learn the language here! All those long strings of acronyms that mean everything in the special needs world will be immediately converted to your brain as you read them! It will be an incredible second language you will speak. It’ll be like slanguage! You will start making choices and plotting a course navigating a land that you will begin to understand. And even more so it is also true that someday you’ll have real advice and help and hard-won experience to pay back out into the world, all that help that was so freely given to you. It is Greek now, and that feeling of the tick-ticking clock is deafening in your ears, but it does begin to come.
You will make mistakes. You will choose the therapy or a therapist that will not pan out. Oh, and yes you will. You will too try gf/cf diet; I’m sorry to say. You think you won’t, but you will. But, it will be in your own time. When it doesn’t work out, you’ll just be so glad that you finally put the idea to rest. Some things will help that you would never have imagined would. You’ll be happy. You’ll be pissed. Some things will help and then stop, and you will have to pry away your hold on them and move on to the next. Nevertheless, you will move on! You will tuck, roll, rise again, and find yourself moving through!
And, yes, you will lose some friends. Some of those losses will be brutal. Others you will pre-emptively cut out. Family too will cause pain. You will discover that this world does discriminate, and your heart will break, it will break messily and sometimes embarrassingly publically. But you will also see the spirits that will touch your life with their goodness and even though you will not want to, you will have no choice; they will make you believe again.
Keep watching for these light-bearing spirits, they are everywhere. I promise you.
You will make a new breed of friends in special needs support groups. They will become some of the best friends that you may never even meet face to face! You will learn an entirely new level of strength and companionship born of reaching out, and you will gain volumes from the people that you would not have otherwise met! You will lean on them, and they will lean on you. You will trade ideas, and you will emulate the best of what you find, even if only secretly. You will wonder how it is that you ever survived without them. The laughter you will find with them will be some of the sweetest you have ever had!
Your kid won’t turn out how they said. I cannot stress that enough. He is just not what they said. They forgot to measure love as medicine, they forgot God, and they forgot the power of never giving up. As far as happiness, purpose, and “reaching him” go, they got it flat out wrong. Get it through your head right now, that degrees behind names and white coats don’t make a crystal ball. And they don’t make up for your son’s personal destiny and design by God.
You will alternate between seeing the disability as something that takes away and fighting it with all that you have and softly embracing it. You will even find that somewhere along the way you will stop seeing the “lack” and start seeing the “perfection there”. You will lower your expectations and be surprised to have them blown away again and again. You will travel, do, and give anything to give the very best, but eventually, it becomes less about the label, it becomes about celebrating the child you have.
You will not be as pissed at the magic and butterfly people anymore. You will utter the words I wouldn’t change anything. You will say one thing one day and evolve the very next. You will become completely comfortable with that. Your ideas and beliefs will be fluid; they will shift and slide, and you will become so much less rigid. You will find yourself not fighting the process. Yes. You will at times be the leaf floating without resistance down the stream. The river will be turbulent, but you will find moments of inner peace.
It is going to be hard for these first few years. I will not lie. The disability is deciding how hard and how fast it wants to set in. You are going to be very overwhelmed. It is going to look very hard. You are going to cry yourself to sleep and have tears soaking your pillow many nights because you will be exhausted by the behaviors and the need for hyper-vigilance and the safety concerns. He will not sleep these first few years, and neither will you. You will need to see to your health and wellbeing because you will find that the stress of staying on top of his safety and needs takes a very heavy toll on you.
You will question if you have what it takes. You will at times wonder if this is what you want to do. You will weep when you realize that you never had a choice. Your love for your son was born long before you had a choice. You will be tired of your very bones and back. You will question yourself and your worth again and again. He will deserve better than what you sometimes gave. You will not ever quit, though. Not even once. Still, sometimes you will wonder if you both will survive.
But, you will. Days will come when you will catch yourself very quietly saying to yourself “Look at him…he’s happy and well at this moment. He is comfortable with his place in the world, exactly as he is. He is not afraid or overwhelmed. He’s come so far!”
To get there, you will have to change course many times. You will not be who you meant to be. You will still cuss blistery blue streaks under your breath. Reese’s Peanut Butter Cups should be written as a prescription, but still are not as of yet. You will eat way too many of them anyway. You will sometimes check out on reality TV, and cut down to the minimum that is required of you. You will be thin. You will be fat. You will be fit again! You will make mistakes. But, equally, you will surprise yourself at how often you are instinctively right.
Your idea of what a hero is will change. You will become a thin/fat-/fit again Amazing Race watching Reese’s huffing hero once in a while! Nevertheless, a little boy will become a hero in your eyes every single day.
You will look into his eyes some days, and you will see for yourself that every step has been worth this moment in this parking lot. You will say, “All I want is his happiness.” You will understand that in a way that you could never have understood if your dreams had worked out in the ordinary way you had planned.
All you will want is his happiness! In addition, when you see that, yes, this is exactly what he is in some moment that is coming; you will celebrate inside your soul with the same intensity that you have ever cried. It will break out across your heart with the bright, warm softness of the rising sun.
Your heart will still sometimes break it’s true, but the sweetness of the milestones and the victories, those too you will get to feel over and over again.
Start the car—and drive away. And hold on girl, you are in for a hell of a beautiful ride. It will not be easy, but it is infinitely worth it. You are going to make it away from here. You all will. I promise you that.