When you are a parent of a child with severe disabilities, you have to accept the fact that your life journey is going to be much different than most people’s and that you are not in control of circumstances. Those two truths are much easier said than lived-out, but they are crucial to living well.
Same Lake, Different Boat is a book that puts the right words to so many truths that I have learned in that past eleven years since my daughter’s birth. A reviewer, with whom I agree, says of Stephanie Hubach’s book: “Concisely written, personal in tone, she provides a solid basis for tearing down judgmental barriers and building effective communities among people with different needs. A must read for anyone interested in learning about loving and caring for “normal people in an abnormal world.”
Here are my favorite parts:
Much of our 21st century life is organized around denying the reality of life’s difficulties. We can surround ourselves with material comforts that give us the false sense of security that, maybe, life is not so difficult after all. We can create an illusion of control that, perhaps, we really are the masters of our own destiny. However, when the reality of disability strikes, neither a thousand trips to Wal-Mart nor unlimited funds in a retirement account can insulate the blow. When disability strikes a family, it is the startling splash-of-a-bucket-of-cold-water-in-the-face that reminds us that, indeed, life is difficult. And we are not in control. (Hubach 99)
Whether we recognize it or not, we all have implicit expectations about our future that reside in our minds. Maybe they are expectations of what our children will be like, what our jobs will be like, or what our retirement years will be like. The onset of disability requires a realignment of those expectations. The accompanying sense of loss is quite genuine, and the waters of grief can be deep… The focus of a family facing permanent disability is not to rebuild life as it was, but to redirect by building a new life that incorporates disability into it. Embracing reality for what it is frees up a family to make all necessary adjustments for successful living. Denying the reality and seeking only to regain what was lost is an exercise in futility that leads to increased grief and prolonged frustration. (100-101)
When we recognize that God is in charge [and that He is good all the time] we don’t have to try to be in charge. Surely, we have individual responsibilities, and that is an important part of embracing reality, but we are not ultimately responsible for outcomes — God is… This is the reality of biblical faith — that life is hard, and God is good — and that God has the power and the desire to work all things together for the good of those who love Him (Romans 8:28). The beauty of embracing reality is that even though life is difficult, reality is not all negative… Making our peace with difficulty frees us to find beauty in the ashes too. When we stop focusing on the difficulty and start focusing on God’s goodness, we discover manifestations of it in many places. (107)
The life affected by disability is a marathon, not a sprint, and it requires the engagement of others who are willing to run the race alongside — mile marker, after mile marker, after mile marker… Disability is not like cancer. You can’t get to the other side of it… But in the relentlessness of disability is also found a hidden gift, a potential measure of God-reliance that empowers the ability to go the distance. (165)