They say if you are sea sick, to look out toward the horizon. Or perhaps, focus your gaze out at one stationary spot as your boat bobs atop the waves. That is great advice for someone who only suffers a little upset stomach. But if you are truly SICK from the motion of the ocean, you are in the fetal position in the bottom of the boat, eyes glued shut in misery, just surviving from moment to moment. I know the difference only because while whale watching a few years back, I was the person who still had the wherewithal to look out at that horizon while my son, Eddie, was rendered immobile in the bottom of the boat when epilepsy still racked his brain and vestibular system.
They say to “trust the Lord” and to put your “hope in the Lord” when life tosses you around in a similar way. But what is usually meant when kind people say these things is “Trust in miracles, pray for healing, believe that God will make it better.” Some of us know all too well that when you are in the bottom of the boat, these are false hopes.
Over the last 10 years, my view has changed about the idea of HOPE. Because children have epilepsy and are never cured. People get cancer, receive excellent medical treatment, they are prayed over diligently and still, they die. Families are torn apart by mental illness despite their best efforts and most heartfelt pleas to God. Does this make God cruel and heartless when it seems like he doesn’t hear or answer our prayers? I don’t believe so. I believe that He is good, even if life’s circumstances aren’t. He never changes. There are so many things I don’t understand about the mess of chronic illness in the lives of people.
But one thing I do know: God is more concerned about healing our hearts than he is about healing our bodies. Too often, well meaning people want to hope and pray away sickness and never understand that there is something to be gained in knowing God and his heart for us both in sickness and in health. Since we have grown accustomed to engineering our prayers around avoiding suffering or struggle, there are things about him and there are things about ourselves that we never learn.
I let myself stay stuck in the bottom of the boat for a long time. There have been wonderful times when the waves died down a bit, and my husband and I could breathe and look out again at a clear horizon. But inevitably, storms churn up and we find ourselves holding onto each other for dear life. I know that numb feeling of hopelessness, dead ends. A parent who watches their children suffer over the course of years with little reprieve, is clinging to primal prayers. At times, that was all I had. That andfistfuls of anger when I was constantly let down. But while parents do everything in their power to help their child from a medical standpoint, there are no guarantees and most often the miracle prayed for never come. When you are in the thick of it, you just have to keep your head down and get through the day, get to the next appointment, soothe the child, make dinner, etc.
When you live with chronic illness in your family, you can’t afford to hang your hope on getting better. Most often, very little in your circumstances will change. Sometimes they do and bless that wonderful day, but you can’t live inside that hope, or what I now consider hope as “Wishful Thinking.” No, that will not do at all. You have to live and cope within your current reality. I made the mistake of hanging my hopes on every new doctor, therapy, medication only to be grossly disappointed – a feeling akin to being kicked in the stomach. You become a yoyo with your hopes set so low and set upon transient things. You are the person stuck in the fetal position in the bottom of the boat, faith and emotions tossed around on careless waves. Would I change what I did to help my children? Absolutely not – But I would have done it with a major paradigm shift.
We have this hope as an anchor for the soul, firm and secure (Hebrews 6:19)….
….this God who is an anchor for the soul, He is that stationary object on the horizon…He alone is hope. It took years to fully realize that when I used to say my “hope is in the Lord,” I really had a bunch of wishful and hoped-for contingencies attached to that phrase. My focus became healing my kids instead of knowing God. But here, in this place, I can peek out of the boat (while I white-knuckle it’s splintery side). I can’t be a good parent, nurturing brain-sick children while hanging my hopes and prayers on nothing more that wishful thinking. I don’t have a choice if I want to be strong and resolute for their sake. I can stand firm even as the world around me crumbles. Maybe when my faith is perfected, I will stand up in the boat, get out and walk on the water toward that setting sun. For now, to be a solid parental force, loving my children through extreme circumstances, my focus has to be that Unwavering Presence on my Great Horizon, simply remembering daily:
“He will go before you and will level the mountains; He will break down gates of bronze and cut through bars of iron. He will give you hidden treasures, riches stored in secret places, so that you may know that He is the LORD, the God of Israel, who summons you by name.” (Isaiah 45:2-3)