When you are a kid you think that adult life is so grand, or at least I did. But now that I am squarely in the middle of adulthood I am realizing that life as an adult is a moments of joy and sorrow sometimes within the same moment.
I was also under the misconception in my younger years that mountaintop moments and deep valley moments happened at some distance from each other. That there were a number of steps between sorrow and joy. I have learned in my adult years that is not true.
Our family is currently walking a journey of joy and sorrow. We are anxiously and excitedly waiting for the arrival of our baby in July. Our journey to Heath party of four has been filled with unknowns, waiting, and sorrow. With each passing month we grow more confident that we will be able to hold this blessing in our arms. We have a scan at the end of the month to find out if we will be split evenly boys and girls or if the boys are going to continue to dominate and it will be 3 to 1 boys to girls. Peter wants a brother, Joe and I want a baby. We are making plans and dreaming dreams. We are prayerful and hopeful about what the future holds.
At the same time, our sweet, kind, resilient, fun-loving, 6 year old boy has progressively over the last 7 months lost most of his vision. His vision has gone from needing glasses to be corrected, to his glasses being something he wears to protect his eyes but not really correct his vision. His hands and his ears have now become his main tools and senses to see the world. He has retinal degeneration. His vision is now 20/350 and 20/600 and continues to worsen. At a Low Vision Doctor appointment we were given a drawing of both his retina’s. The area of his retina that is functioning is the size of the tip of my pinky on a 8.5 x 11 picture of a normal retina. There seems to be no cure to what is happening and no real answers as to why and if/when things will go completely dark. He can still see some, things just need to magnified (like times 16) and the lighting needs to be bright (read 3000 Lumens). Somedays he can see more than others. A few months ago he could see some of my facial features (my ears, my mouth sometimes) now most days he cannot.
He will be learning Braille in school, he will be receiving mobility and orientation training. He will likely add a white cane to his way of seeing the world. Joe and I learning to navigate parenting Peter in a way that helps him feel secure in the midst of an ever changing situation. We are trying to parent him in a way that Peter doesn’t see his vision loss as something that will hinder him. While he may not get to live his dream of being a monster truck driver (a dream that was not all that likely even fully sighted); he can still be an author, a scientist, a cook, a builder, and a soccer player. It may look different, it may take some tools that other do not use but it is possible. It is my goal that I hear my little boy giggle and laugh each day. Even though his eyes don’t function properly they still light up when his smile is genuine and real. We do not want to allow Peter’s vision problems to take away from his childhood, his happiness, his joy.
Even in the midst of an unknown future, diagnosis, and prognosis; we are still grateful. Peter is otherwise healthy. We can still hear the sound of his laugh. He is not in pain (except when he bumps into things or people he didn’t see.) Other friends do not have that same luxury or blessing. While his vision fading he is a growing boy with no other major health issues. Other friends cannot make the same claim. So while we struggle at times to know how to best navigate this new world we are in, with things like IEPs, Braille, ABLE accounts, and such, we are also thankful to hear the sound of Peters laughter, hear him playing the piano, or drumming on just about any surface. We are living in a time where moments of joy and sorrow meet regularly.
Adulthood, parenthood, ministry, and life are not always easy. But we were not promised easy. We were promised presence. And we are have felt God’s presence with us this entire journey. In the moments of joy and in the moments of sorrow; in the moments of fear and in the moments of relief; in the moments of laughter and in the moments of tears, He has been there with us.
Say a prayer for us as we navigate these next few months. Our families, our church family and the school have also been very helpful in this journey. But there is still a lot to be figured out.
Until next time – There are some benefits to your 6 year old not seeing so well. The toy aisle at Walmart is a lot easier to get through now. J
