Earlier this month, we featured Ally’s Perspective, a fictional story written by a 9 year old girl to help cope with her dad’s deployment. Kristin is Ally’s mom, and offers her perspective on being a military family with a special needs child.
“When you become a military spouse, you know “going into it” that this life might take you to live in exotic places – perhaps overseas or in Hawaii – and a downside might be that you’ll often live very far away from family. You’ll know that your military service member will often be away from you and your children for long periods of time, but you won’t truly know what a six or nine month separation feels like until you have to do it for the first time and you don’t realize how difficult it is to explain the concept of time it to a toddler or a Kindergartener or even a third grader until that moment happens to you. Throughout your life as a military spouse, you’ll encounter numerous events that you never thought you would have to handle alone and you’ll pat yourself on the back for those you accomplish singlehandedly – like putting up a live Christmas tree by yourself – and you’ll probably curse the high heavens for those times you feel like “this isn’t fair” – like dealing with rats in your garage… You’ve probably heard the phrase “life is a roller coaster” and yes, it’s full of ups and downs. However, life as a military spouse is like an EXTREME ride on a roller coaster – full of the highest highs and the lowest lows.
As a Navy spouse for over eighteen years and the mother of two daughters, I’ve had my share of highest highs and lowest lows. However, one of the most significant events in my life occurred when my second daughter was born in December 2004. My dream of having another “perfect” baby with a button nose, rosebud mouth, and the proverbial “ten fingers/ten toes” vanished in an instant. You can imagine my shock when my youngest daughter was born with a bilateral cleft lip and palate and just two fingers on each hand and two toes on each foot. I remember crying, “Why? Why? Why? What’s going on? What happened?” to everyone in the delivery room. Between the emotional strain of labor and delivery and the shock of our newborn having multiple birth defects, my husband actually passed out in the delivery room and the spent the next three days in ICU having suffered a traumatic brain injury. My daughter spent a few hours with me before she was taken to the NICU so they could monitor her vitals and attempt to feed her. Three out of four members of my family – myself, my husband, and my newborn daughter were all patients at the same hospital. My oldest daughter was three and a half at the time and was being cared for by family members at home. I was the first to be discharged from the hospital after her birth. As I exited the hospital, leaving my husband in the ICU and my daughter in the NICU, I could barely comprehend how our lives had changed so dramatically in the three days since I had walked into that hospital with my husband at my side and my daughter in my belly. The highs and lows of those three days imprinted my mind forever.
In the weeks that followed, we learned that Allyson had a genetic condition called Ectrodactyly-Ectodermal Dysplasia-Clefting Syndrome (EEC Syndrome). This syndrome is characterized by missing or irregular fingers and/or toes (ectrodactyly); abnormalities of the hair, nails, teeth, and sweat glands; cleft lip and/or palate; distinctive facial features; and abnormalities of the eyes and sometimes the urinary tract. My husband eventually recovered from his head injury and returned to flying status fifteen months after Allyson’s birth. Our “new normal” life had begun.
A few years later, Allyson’s vision began to deteriorate due to unexpected complications associated with EEC Syndrome. By age four, she was legally blind and now reads and writes in Braille. However, Allyson is a remarkable girl with a spunky personality and a lot of determination. There’s nothing that she thinks she cannot do! She’s had more than thirty surgeries (I’m not exactly sure how many because she’s asked me to stop counting them!) over the past nine years and has endured more tests and doctors’ visits than most people see in a lifetime.
As a military spouse and as a mother of a child with special medical and educational needs, both experiences are full of “high highs” and “low lows” which sometimes conflict with each other. When I was asked to write this piece, I was full of ideas about which angle I should take and how I could offer wisdom to other spouses who had experiences similar to mine. I wanted to write something witty and insightful; something entertaining, yet poignant, and I struggled to make this article sound “just right.” Then…last week happened and the theme became clear: high highs and low lows. Here’s our story:
Last week, my husband was due to fly home from his nine month deployment aboard an aircraft carrier. It was unexpected that he was offered the opportunity to come home on the early detachment two weeks before the ship pulled in. We decided that we would surprise our daughters (ages 12 and 9) and not tell them about the early homecoming, just in case something changed at the last minute. Obviously, this was a “high high” for us! However, the day before he was scheduled to fly home, there was a chance he wouldn’t make the flight because high seas were preventing liberty boats from taking sailors off the ship – potential “low low”. He ended up flying home early and he made a video announcing his surprise that I played for my daughters just hours before he was scheduled to land. The shock on their faces was priceless and I’m so glad we were able to pull off the surprise! For military families, a reunion after a long separation is one of the most special experiences we get to enjoy… adding the element of surprise just sweetens the deal!
Four days after my husband’s surprise homecoming, Allyson was scheduled to have eye surgery – a routine procedure that she’s had several times – to treat glaucoma in both of her eyes. Obviously, this surgery was scheduled before we knew my husband would be home, so Allyson and I made the 500 mile roundtrip alone to Baltimore, MD for her surgery. Nothing unusual occurred during surgery and we returned home to my husband and older daughter that night. The next day, Allyson complained that her vision was blurry, but I thought nothing of it since she was just one day post-op. When she came home from school the day after surgery, her vision wasn’t any better and she was having a lot of difficulty navigating the familiar environments of our home and at school. Even though Allyson is legally blind, she is able to see details of objects up close and is so comfortable in her familiar environments that sometimes we “forget” that her vision is limited because of how independent she seems. We became alarmed when she told us “I can’t see” and it was obvious that she had suffered a significant loss of her functional vision. She had never experienced this side effect during previous surgeries so I called the doctor who suggested we return to Baltimore for tests to rule out anything catastrophic. We had hit a new lowest low… and right on the heels of our highest high just a few days before. Allyson and I made the trip to Baltimore once again two days after her surgery to hopefully find answers to this new problem. While many years have passed since Allyson first lost her vision and we’ve dealt with that pain, have accepted it and have moved past it, this was a real blow. She was acutely aware of this change in her vision and how it limited her ability to do all the things she’s accustomed to doing. Our spunky and determined girl was now frustrated, sad, and sullen. The return trip to Baltimore ruled out any significant changes to her eyes that might be causing this “new” vision loss. We’re now in a ‘wait and see’ and ‘hope that this is temporary’ mode… it’s definitely put a damper on life as we knew it and we wonder about the new challenges that might lie ahead for Allyson. As the week has progressed and we’re on vacation with family over Spring Break, there has been little improvement to Allyson’s vision. While we didn’t sink to a new lowest low (we came close), the thrill of homecoming just a few days ago has worn off as we’ve been dealt another card that makes us ask “why?”
This past week was our example of how military families and families with special needs children have to adapt and it illustrates how our lives are often turned upside down in an instant. Does this happen to other “typical” families in our society? Sometimes… but I think you’ll find more frequent occurrences of highest highs and lowest lows in military families just because the nature of the lifestyle we lead and because of the uncertainty that accompanies this lifestyle. You’ll find high highs and low lows in families with special needs children because you spend so much time working and trying to reach certain milestones or overcome specific obstacles that the majority of your time and energy is focused on a single task. When a special needs child eats without gagging for the first time or is able to sit up unassisted or speaks the first intelligible word – that’s a huge victory worthy of a celebration! When you combine the military family with the family with special needs children, you have the unique opportunity to witness both extremes of highs and lows… and even in the same week!
My best advice to others is to celebrate what you have today because you can’t change yesterday and we don’t know what tomorrow will bring. Embrace the roller coaster in your life and grin ear-to-ear as you hit the crest of the highest highs and hold on for dear life during those deepest lows. Neither one is everlasting… there’s always next week.”