Life with Luke

In just 10 days, Luke will be five. Life with Luke has been good, but hard. We love him dearly, and wonder at how he functions in his world of autism. He is doing well. ABA therapy has been perfect for him. But it's done. As of mid September, Luke will have no more funding. Everything we've attempted to do keeps landing us at the same response: I'm sorry, Mrs. Edwards, but Luke's birthday falls two days short of the cut off, so we will no longer be able to provide these services. Just two days. And we'd have one more full year of intervention. Now we're on our own.

I want to homeschool, but how? Will I be able to give him what he needs? What about my other kids? Have I given them what they need while so much focus, time, energy and money has gone into their one sibling? Can I really homeschool all of them successfully?

When I speak with those working with Luke, I find it hard to know what I believe anymore. I was convinced that I knew what I would do this year. But now I don't. Maybe I'm fooling myself to think I can give him the best education (not just academics) here. Am I being selfish in continuing my push to homeschool him? Or any of them?

Luke has challenged me in so many ways. I struggle with guilt over my negative feelings about his autism - how many days have I just wanted to scream, "Why can't you just be normal?!" The early hours from a year ago, when Luke would get up in the middle of the night and not go back to sleep - nor would he allow me to - or when he would wake up at 4 or 5 am ready to be up for the day, those were moments I didn't know how much longer I could hold onto sanity. The behaviours towards me, the stimming, the need to protect and intervene with my other children....so many times I would want to just sit down and cry. Why God? Why us? Why him? I can't do this anymore!!!

Yet I have. We all have. He's communicating now. Not perfectly. Never without flaw. But I think we're all coming to the realization of who we are as family with Luke part of it, not separated. Sometimes it's literally because we have no choice. This is who he is. This is where he's at. And we are the people God chose to surround him with.

It's hard. Hard to explain to Cole and Brett why Luke responds the way he does. But you know, they don't really question. They know better than I how to just accept him the way he is. They are his protectors, translators, therapists, and friends.

Autism means alone. So does death. We are grateful that he does not act like many, and seek out isolation. He does want to be with us. To enjoy life along side of us.

Luke means "light", or "bringer of light". And so he is. We're learning every day countless lessons in unconditional love and tolerance and compassion and kindness. We don't always respond the way we should - patience runs out, minds are tired, emotions worn. Yet he always gets an apology, a hug, and a reassurance that, yes Luke, we do love you. In spite of all these challenges we face, in spite of all of your own personal challenges, you are loved, and very much wanted.

So we're continuing our fight to rescue him from this horrible disease of the mind. It takes hold and holds tightly captive those we love so much, often for a lifetime. We will continue to fight for freedom for you, Luke. Whatever it takes, we'll try, inasmuch as we can. Forgive our failures, when we are caught up in our own limitations, mentally, emotionally, and physically. Keep fighting, Lukie, we know you can do it. And we'll pray. Pray for God's grace to cut through the fog that holds you down. For you healing, and your recovery, in every part of your being. God designed you as you are, as He does us all, but never does He intend to leave us as we are, or to fend for ourselves. You are not alone. Life is for you.

Twinkle On.