Defining "Normal"

Shawn calls him “Astro Boy” when he’s all strapped in. At first sight I thought it resembled a strange torture devise. Benjamin knows it as his movie time place. I know it as his “Super Stand.” At this present time, our family knows it as “normal.”

When Benjamin’s Child Development Specialist first recommended a Super Stand sometime before his first birthday, I couldn’t quite envision what she was referring to. She explained that it was very important for Benjamin to have a way to be held in an upright position in order to develop proper posture for future standing and walking and to give him the opportunity to bear down with weight on his feet and legs. Though he was a big boy overall, his feet seemed to be lagging behind. She explained that the body needs weight on the feet to send the message to the bones to grow. Otherwise, the human body will actually take calcium from the bones that are not being used much and send it to other parts of the body. She also said that it’s important for his digestive system that he be placed in an upright position more and more, especially since our son has a bad tendency of spitting up. So, she helped us make the proper connections, had measurements taken for Benjamin’s equipment, and filled out the necessary paperwork to make a requisition to his Medicaid Disability. Thankfully we were approved, though it was several months before his Super Stand actually arrived.

By this time we had just recently moved into our new home. Benjamin had just learned to remain in a sitting position by himself. He had already received ankle braces (known as orthotics) for use throughout the day but most importantly for when he would be in his stander. The significance of these did not sink in for me, however, for several more months. They left red marks on his feet and ankles, and he seemed so uncomfortable that I did not have a very strong resolve to make him use them much. By the time I realized how important they are for Benjamin to develop proper foot alignment and ankle strength that will set a life-long course for his posture and walking stance, it was time to have new ones made. They only recently came in.

Any way, back to the stander…A gentleman delivered the large contraption to our home and showed us how it is to be properly used. He helped us make the necessary adjustments for Benjamin’s current size and taught us how to make future adjustments. I probably looked like I was a deer trapped in headlights as he told us more than once, “I know it looks intimidating, but it’s really quite simple.” “Simple” was the last word in my mind at that moment! How simple would it be to strap my 15-month-old into this device every day and listen to him scream?! We were encouraged to start Benjamin out in small increments with the goal of increasing his time to at least an hour a day, though it didn’t have to be all at once. Knowing this would be important for our son’s development and thankful that such an expensive piece of equipment had been provided for us, we pressed forward. I have to admit, though, that in some ways this large and awkward piece felt more like an intrusion in both my house and my heart. It was difficult to hear Benjamin’s cries of protest and see his tear-streaked face as we tried to familiarize him with this brand new experience that must become a part of our “normal” life. It was painful that he would even need such a seemingly drastic intervention when other children his age were up and running around. After some rocky first attempts, though, we discovered that our son seemed to forget, at least in part, about the awkwardness of the stander when we played one of his favorite baby movies. Soon his cries of protest evolved into occasional cries of impatience while I strapped him in, so eager he was to watch Vinko the Bear and D.J. the Dinosaur from Baby Geniuses, and later Rachel from Baby Signing Time, Elmo from Sesame Street, or Ta, Dee and Ed from Musical Baby!

What felt so intrusive and so foreign has now become a part of our daily routine. Benjamin watches a movie in his stander every morning while Mommy gets cleaned up, and he watches another one or two throughout the afternoon and early evening. Overall, he averages around 1 ½ hours of stander time every day. Instead of tears, I see smiles as I push the hydraulic lever to raise him up while telling him, “We’re going up, up, up!” or later “Down, down, down.” Benjamin has accepted his stander as part of “normal” life and has no concept of how “abnormal” our routine would appear to the general population. While I still have this awareness, the stander is now part of “normal” life for me as well. I’ve nearly mastered the art of maneuvering the bulky piece from behind his crib’s headboard out into the living room and back again, though the patches of chipped paint at the bottom of the doorway reveal my many less successful attempts. Benjamin’s orthotic braces are becoming “normal” too. He’s not to the point of being able to wear them all day, but he no longer fights me when I fit them on, though he doesn’t necessarily like having to sit still during the process. During the first drawn-out attempts while he cried and fought and I felt like I was all thumbs, I just kept telling my son (more for myself than anything), “We have to get used to these. It’s part of life now, and that’s just the way it’s going to be.” We’re beginning to adjust much better, and I can see the improvements the orthotic braces are making in his ability and stamina to remain in an assisted standing position.

These unusual interventions are never what I pictured, and they’re not necessarily easy, but that doesn’t mean they are not good. I’m realizing more and more that so many of life’s disappointments spring from the stem of unmet expectations. I have an expectation for what “normal” should look like; when that expectation is not met, it is easy to feel hurt, angry and/or offended. It’s easy to feel like I’m “missing out” on something I felt the “right” to have. However, am I really missing out, or do I just need to alter my expectations? What should my expectations look like anyway? Life is uncertain; God is unchanging. Life (in this age) is fleeting; God is eternal. He is the same yesterday, today and forever (Hebrews 13:8). He has promised to never leave me or forsake me (Hebrews 13:5). He has promised that His love for me is unconditional; nothing can separate me from His love (Romans 8:38-39). He has promised that His goodness and His mercy will pursue me and overtake me if I will allow Him access to my heart (Psalm 23:6). Maybe my expectation should be to love Him and trust in His love for me no matter what I’m faced with in my circumstances (Proverbs 3:5). Maybe my expectation should be in His goodness and eternal wisdom that I will probably never fully understand in this life (Isaiah 55:9). Maybe my expectation should be in the glories of the age to come and not in the sufferings of the present age (2 Corinthians 4:18). I say “maybe,” but I know it’s true.

Yet you, LORD, are our Father. We are the clay, you are the potter; we are all the work of your hand (Isaiah 64:8). He has us all in process, and each one’s process looks different. Some steps are delightful, and some steps are painful. Will we yield ourselves to His process, or will we insist on our own way and grow hardened if we do not receive it? Will we allow the disappointments of our unmet expectations in life beat us down or will we allow Him to use these things to shape and mold our hearts as He sees fit? One of my greatest prayers is that my heart would stay tender in Jesus’ hands. The inner response of my heart towards Him in trust and love no matter the circumstances is what He’s after. This is the only thing that will truly give me the strength to stand.