I hope my kid defies the odds. Beats the statistics. Exceeds expectations.
I can’t be alone in this. I mean, I might be… but I don’t think I am. If we’re talking ‘typical ‘ kids, I KNOW I’m not alone in it. We all want/ expect/ drive our kids to be their best. But when it comes to a non typical kid, there’s an unspoken thing that hovers in the air like smoke from a nearby campfire… you aren’t supposed to wish things were different for this kid. You aren’t supposed to want to “fix” them or change them. You embrace the journey just as it is and work with what you have. And I can agree with that to a point. But I just know. I mean I KNOW I’m not alone.
I have a dangerous hope that Thaniel will defy the odds. And I can’t seem to shake it. I cannot bury it in the propaganda of acceptance no matter how hard I try. I say dangerous hope, because if I’m wrong. If all my pushing and working and effort results in an unhappy and stressed out little person and …. here’s the crap…. a disappointed mother, then my hope was a reckless thing.
Unfounded Hope leaves you unguarded.
I don’t feel like my hope is unfounded. I feel I have seen examples of kids with Down Syndrome that have broken the sound barrier. College grads, entrepreneurs , business owners, artists, writers, actors, speakers… These shining few who stand out like Sirius the dog star against a backdrop of unbelief. So I sense that my hope in Thaniels ability has merit. And yet it still fills me with guilt that I harbour it. I don’t tell anyone what I’m aiming for when I run thru the alphabet with him. I don’t say that what I’m hoping for isn’t that he will master it before he starts school and therefore will keep up with his peers, but in truth , my hope is that the letters will jump out and grab his imagination and he will write a book that will rock the world. But can you see how this secret hope has me wide open and vulnerable?
You never know. But… you kinda know.
Hope begins with disappointment.
When it comes to hope in my own life, my gloves are always up. That wasn’t always the case. I know it couldn’t have been. We just don’t start out that way. How do I know? Because I have held my trusting open newborns in my arms and I know they don’t even register the concept of ‘hope’. They don’t have to. Everything they need and want is a sure thing. There is no time at their start that they are left wondering if their needs will be met. None.
Hope is a concept that’s born from disappointment. From that one time that things didn’t go to plan and so you ‘hope’ they go better next time. You were let down this once and so you ‘hope’ to be held up from here on out. As infants , my children had no reason to ‘hope’ . They knew.
That all starts to change when I start slipping. When I don’t rush to answer every call. When I don’t give in to every want. Hope begins with Disappointment.
Hope ends with disappointment.
If you let someone down enough times, eventually they will stop hoping things will change. They will come to expect that you will continue to fail them. I think that may be the case with Down Syndrome? I think in the beginning we didn’t hope. We thought we knew that these kids weren’t capable of anything other than the basics of life , if that, and so we didn’t hope for more. And then of course we saw our expectations met, and we didn’t risk hope for anything else.
Who , I wonder , was that first reckless soul ? That warrior of hope who looked at their beautiful T21 baby and said silently in their heart ” You can do it” . And then pushed to see it happen. Who swam against the waves? Who were the first few who didn’t see with eyes, but felt with their whole selves that possibility was a seed and you just had to plant it?. Whoever you were… Thank you. Shhhhh, I feel the same way. My boy is going to sing, despite the fact that you can’t yet understand him. My boy is going to play music, despite the fact that he can’t read the notes yet. My boy is going to write, despite the fact that he can’t grasp a pen yet. MY BOY IS GOING TO FLY. Despite all the odds. Because I have this dangerous hope.
Hope, the double edged sword.
In my own life, I see hope as a knife. It scares the daylights out of me. If I were to walk you back into my childhood and bring you with me through to this day; you would no longer hope for me either. I cling to things like grace, but I have little use for personal hope. Experience has taught me to guard my heart and keep my gloves up.
I joke with the people around me … things like “If it’s out there It’ll happen to me” and I laugh after I say it. But I believe it. Neutropenia means that every virus, infection, sickness.. is coming for you. I want to be fierce…. what I am is weak.
I laugh off references to my personal life.. the fact that no man has ever been faithful to me.. that I am constantly left alone… and I treat it openly with a shrug and a ‘whatever’ attitude. But my soul is curled up in the fetal position because the truth of the matter is I am always alone. I let go of hope long ago. Because it hurts to hope. It costs too much to hope.
Every Time a doctor proposes a raft of tests and I begin to think that they may chase down an answer and I may see a light at the end of this tunnel… I’m left alone. Every time a man says he will stand beside me and walk through the stuff and I give in, even an inch… I’m left alone. Hope is the knife that slides in and leaves me bleeding every time.
So now what?
You know, and I know, that I can’t stay this way. If you’re like me, you know, and I know that you can’t stay that way. This isn’t living. This isn’t the way it was supposed to be. SO WHAT DO WE DO? We cannot go back and erase or change what’s happened. We can’t repair the breech. We can’t restore expectation…. or can we?
My soul, wait thou only upon God; for my expectation is from him. He only is my rock and my salvation: he is my defence; I shall not be moved. In God is my salvation and my glory: the rock of my strength, and my refuge, is in God. HOPE in him at all times; ye people, pour out your heart before him: God is a refuge for us. (Psalm 62)
… I remember those words from the Psalms. My expectation is on you oh Lord. There isn’t a man on the planet that I can rest in like that, and I don’t have to. I hope in God. If I am left alone, I am not alone. If I am torn to shreds, I am not without a healer, If I am disappointed, I have this trust in you. If I meet with storms, I have a refuge. Oh man!! that’s good!! And so when I wake up and my first reaction is to shut it down, I remember who holds me, and I answer from that place .When I want to put my gloves up, I remember who my defender and rock is and I open my heart up a little more and with a grateful heart I hope. I hope. I hope. I hope!
We have this hope as an anchor for the soul, firm and secure. It enters the inner sanctuary behind the curtain… (Hebrews 6:11)
Today I am so broken. You see. You saw me yesterday so laid low that looking up was costly. I can’t even see past my own pain today to glimpse the hope I have in you. But I know it’s there. This hope that enters the inner sanctuary of my life, behind the curtain of who I pretend/profess to be. There I find my hope. And it’s in you. You see how I want Thaniel to be more. And I don’t know. Maybe that’s your plan, maybe it’s not but I have hope. For him and for me. My hope is frail and it’s flawed and it sometimes resembles more of a life jacket than a banner flying proudly… but Father I cling to you! only you! you alone are my hope and expectation. Keep me here. In this place of tender resignation. I have nothing but you. I need nothing but you.
God I ask for those around me that are empty of hope. May they reach and find in you a firm hold.
I love you Yeshua.