What Would it be Like to Watch Your Child Go Blind?

Our Blind Adventures

This appointment is taking way too long. I don’t know what possessed me to take all four children to an ophthalmologist appointment for Davis and Ashlyn that day. It was my first big trip out of the house since having Clint two months ago, and I had probably given myself a pep talk about how I could do hard things or something. Six-year-old Davis and five-year-old Ashlyn had been in glasses for astigmatism and strabismus for a couple of years, so this was a routine check up. I should be given a medal for this, as the Doctor told me again that he would be right back. I dug desperately in my diaper bag for anything to quiet the kids, and pulled out more goldfish crackers hoping to stave off full blown meltdowns. Now another Doctor is coming in. I was confused, but not nervous or scared. I was just an exhausted mom, ready to get out of there.

The Doctor looked timid, like he was afraid to talk to me. That’s weird. And while I’m juggling children in my arms, he said something about making an appointment for the Retina specialist. My mind wasn’t processing his words, and I had no idea what Bullesye Macula Dystrophy meant. He said that there was something wrong with the retina, but that he didn’t want to elaborate until there was a second opinion. I nodded my head, it was the only thing I could manage to do.

I made the long drive home, it was one of those drives that you don’t know how you got there, auto pilot I guess. I of course told my husband what I knew, and then went searching on the internet for answers. The internet can be a terrifying place when you are looking for medical answers about your child. My child, his name is Davis, and he had already been through too much. We had already been through too much as parents. It was through the internet that we discovered his first medical complication. He was just two weeks old when I noticed that he was breathing rather loudly. He was diagnosed with Laryngomalacia a short time later. I had to watch my baby labor to breathe. I could hear him from across the house it was so loud. Oxygen tanks were brought to the house. I remember when we took him out to a little cafe’ and people would stop and stare at our little baby all covered in tubes. Sometimes I resented it, sometimes I didn’t. I mostly just tried to be thankful that he was getting the oxygen he needed. At three months old, he was admitted into Duke Children’s Hospital to undergo a procedure to fix his epiglottis. It was successful and we were so happy when the oxygen tanks were picked up. We naively thought our troubles were over, that Davis would thrive and develop typically. But then there were the well child appointments that I came to dread as it became obvious he wasn’t progressing like he should. Those milestones that other babies were conquering, were elusive for Davis. Therapy through early intervention became our life.

Our Blind Adventures

During that time we welcomed a little girl to our family when Davis was only 11 months old. Ashlyn was a bit of a surprise, and certainly it was challenging caring for two little ones so close in age. She was a joy though, easy going, calm, good sleeper, and happy. Which was such a blessing considering she had to be taken to all of Davis’s appointments. Davis wasn’t crawling or walking at that point. He was also huge, so it was quite the workout getting him and Ashlyn in and out of the car and into the double stroller. I loved so many of the therapists he had. They were a source of information for me, and I could tell Davis was making progress in some areas. He was diagnosed with Sensory Integration Disorder, and continuously told that he was Developmentally Delayed. Oh the false hope that label gave us. I understand now the wisdom in waiting to properly diagnose, but at the time it gave us false hope. We allowed ourselves to believe our son would catch up, and we explained away all of his difficulties. It was so easy to do. I remember reading about a boy who was Down Syndrome. The article explained how he would stay at the cognitive age of 6 for the rest of his life. It just kind of hit me in the gut, and I knew it would be the same for Davis. I finally admitted to myself what I already knew, what Doctors were unwilling to tell me. That was the start of a long process of accepting that my child was intellectually disabled, and what that would mean for him, for us. Our friends and family would continually encourage us, and calm our fears. I took some comfort at the time that our other children were progressing typically. Brock was born three years after Ashlyn. He was a mama’s boy from the start, and we were all so in love with him.
As time went on, Ashlyn started showing signs of speech delay. She didn’t talk like the other kids, and my concern started to grow. Although she had met every milestone within normal range, by the time she entered kindergarten it was obvious that she was globally delayed. How could this be? She had seemed fine until the age of 3. But from that point on she was always behind her peers, and the gap continued to increase year after year. One intellectually disabled child was difficult, but two was overwhelming. Still we had many reasons to be optimistic. Within this time period we had moved to three different states, and we were always blessed with good friends who accepted our little family and was there for us through it all. We were blessed with teachers, doctors and therapists who explained things, helped us find services, and showed genuine care and love for our kids. Davis and Ashlyn were involved in swimming lessons, and enjoyed playing just like most other kids. Davis has always had behavior problems, so its never been easy, but there was always reasons to be happy and enjoy our life. Exactly two years after Brock, we had Clint, our final baby. This kid came into the world with a zest and zeal for life which is something we still enjoy about him today. He has provided our family with much needed comic relief, and he and Brock became the best of friends. When Brock was around the age of three, he started showing signs of speech delay. He also suffered from severe separation and general anxiety. Of course we were worried about what this might mean, but thankfully with the help of the therapies through early intervention he made great progress in all areas.

Now back to the appointment when Davis was six. Those three days we had to wait to see the Retina Specialist were the longest of my life. It’s a special kind of torture, life seems to hang in the balance. Before the appointment we had scoured the internet for any information we could find. There wasn’t a lot on this specific condition. We knew though that if he had it, it could mean blindness which was terrifying. The specialist looked into Davis’s eyes and then faced us. I truly feel bad for Doctors when delivering this kind of news, it has to be so hard. And yet, I could see that he had learned to detach himself from the pain his words would cause. I don’t blame him, he has to cope too. I remember holding my husbands hand, hoping this had all been just a big mistake. When he said that yes, Davis did have Bullesye Macula Dystropy, my heart sank and I of course started to cry. He went on to explain that Davis would probably experience only mild vision loss, mostly central but that he would keep enough vision to to get around ok. With that, some optimism returned. I remember thinking, so he wont be able to drive, he probably wouldn’t be able to do that anyway, I think we’ll be ok, I think we’ll get through this fine. At least he won’t be totally blind.

I downplayed the diagnosis, never one to be the center of attention, I was happy to let people know that it was better then we thought it was going to be. I warned them we might notice a few changes, but not much. We were asked what were the chances that our other kids had the same eye disease, and from what we understood, the odd were one in four. The doctor made it sound as if the chances were very low that any of them would have it. Genetics were never my strong point, and naively I accepted that what he said as fact. I don’t even think I considered the possibility that any of my other precious children could have this disease too. Something that I had bought into was the thought that we had reached our trial quota. Surely God wouldn’t give us anymore to handle.

One Sunday a few months after Davis’s diagnosis, he ran into church without holding my hand like six-year-olds do. I see him run right into someone. I immediately apologize, and then I see him run into something else. Even though we were anticipating some change, it was upsetting seeing it happen, and we decided it was time to get his vision tested. It’s bad. Instead of mild vision loss, he was losing his eyesight completely. The fragile hope that I had nurtured and coddled was shattered.

Have you ever wondered what it would be like to watch your child go blind? No, I hadn’t either. How can you possibly prepare yourself for something so traumatic? First he was running into everything. Then he couldn’t find the toys he was playing with on the floor. Next he can’t see the TV (being intellectually disabled and ASD this was and is what brings him the most happiness, and calms him down). And maybe one of the very worst things, he can’t see my face anymore. You know that special bond you feel when you look deep into your child’s eyes, you smile, and you just know they can feel the depths of your love? For me that was gone. I would take his hand and put it on my face, desperate for him not to forget. He couldn’t see me smile anymore, he couldn’t find his way independent anymore, he couldn’t play on the big toy at the park without help anymore. When he rode his big wheel, it was constantly veering off to the path. Heartbreaking doesn’t begin to describe the pain. Deep searing pain that makes you feel that you are being cut in two. I also remember the joy in witnessing him start to figure out the world around while blind. Using his other senses to compensate for what he couldn’t see. As deep as my pain was, my joy and happiness in his successes were just as vibrant. How proud we were when he mastered knew skills. As we watched him try so hard to do even the simplest tasks we were so proud. I came to appreciate the new perspective of life this gave me. It helped me not to get so hung up on the unimportant things. To find happiness no matter our circumstances.

A year later Ashlyn, then 5 years old, was having her routine eye appointment. As crazy as it may sound, the thought that she had the same eye disease never entered my mind. I was numb as I left that appointment, calling Jarom to tell him that we needed to see the Retina Specialist for Ashlyn. They told us it would be a few days before we got in. I was in complete panic mode and told them we had to be seen right away. When I explained about our situation, they had compassion for me and got us in right away. I had called all of our family, begging for prayers, hoping we didn’t need them. Please this can’t be happening. So there I was in the waiting room. with my beautiful precious daughter, barely holding it together. After it was confirmed that she too would lose her eyesight, I took her to the car and just sat there. I kept trying to dial the phone to let Jarom know. It took me several tries to finally do it. My hands were shaking, my heart racing, and I felt like I was going to throw up. It was literally the hardest thing I’ve ever had to do. Hearing my strong, good, loving husband break down in sobs over the phone is something I’ll never forget. It felt like I had caused his pain, and it is something that still haunts me today. I was scared and disconsolate, and I didn’t know how we would ever recover.

Jarom’s mom came over to the house as soon as she heard to take care of the kids. Neither of us were in any shape to do so at the moment. I have to admit that seeing my husband doubled over in despair frightened me. So many fears were rushing through my mind. I was angry that he had lost control. I wanted him to comfort me. Grief is selfish you see, and we were both grieving in our own way, unable to help the other. I guess you could say I was the stronger one at that moment, but really I was just better at putting off the pain. Until later. Grief won’t stay away no matter how strong you are, it takes everyone eventually. I used to pride myself in my strength, I thought I was the type of person who could handle anything thrown my way. But my world had stopped. I felt like the dead among the living. I remember marveling that cars were driving by our house, or that neighbors were going for a walk. I didn’t understand how they could be going on with their lives. Silly I know, but it felt so real at the time. I don’t know if my faith was shaken, or if it ever was in danger, but I was starting over. Everything I thought I knew about life and God had to be relearned. I would never be the same person again. I think all great trials do that to a person. You look at your life in terms of before this happened and after. I remember falling to my knees and silently yelling why? I don’t understand! Nothing makes sense to me. I won’t say that I wasn’t ever angry at God. But it was only for a moment. As I would kneel in prayer, I felt the impression come that it was okay to be mad, that it was part of the process. An all knowing and loving Heavenly Father patiently listened to me as I shared with him my confusion, sorrow, and frustrations. I felt an increase of love from him pour down on me as I continued to seek him out day after day, sometimes hour by hour. Priesthood blessing were given, family fasts were held on our behalf, cards were sent, phone calls made, and meals were lovingly brought. The support we were given was incredible. We have never been alone throughout this whole experience. We have the best family anyone could ask for. They support, help, show compassion and understanding. They love our kids unconditionally. They loved us even when we were hard to love. I appreciate them more than words can express.

I would compare that time in our lives, as well as the several years to follow to waves in the ocean. Part of the time it felt like I was floating on a wave, relaxing in the brilliant sunshine, feeling the cool comfort of the water, peaceful, breathing. The next moment I was being engulfed, sucked under, pounded on the ocean floor, and left gasping for breath. The expression “I’m barely keeping my head above water” was how I felt a lot of the time. It wasn’t just the blindness that had caused such tremendous stain, but it was the intellectual disabilities of two children, with Davis also being diagnosed as autistic as well. We had Brock who was still experiencing challenges due to his speech delay and anxiety disorder. There were always meetings (either School or Doctor) there were always problems. It was and is truly exhausting.

We ended up moving to my hometown were I had grown up. It’s an agricultural town where everyone knows everybody, and there were deep roots there that we thought could be beneficial to us. Also the school the older two had been attending wasn’t meeting their needs. My parents had built a new home on their farm, just down the road from their old one. We moved into their vacated home and enrolled the kids into school. Within a week, the school district had hired one on one paraprofessionals for both Davis and Ashlyn and a vision teacher was assigned. Within that year they both started learning how to use a white cane, and stated working on braille. Because of their intellectual disabilities, this has been challenging for them to say the least, but they are each learning to their ability. We have been so blessed to have amazing paraprofessionals and a fabulous vision teacher. They have all gone above and beyond for the kids, helping each of them stretch and grow and learn.

Our Blind AdventuresIn 2011 and 20012, both Brock and Clint were diagnosed with the same eye disease. This disease has taken the vision of all four of my children. They cannot see, but they do have some light perception. It’s been an incredible experience watching my children take on their challenges. Brock (10) is determined, persistent, organized, mechanically inclined and responsible. These traits have helped him excel in Braille and become the designated “oldest child” who helps all of his siblings, even his six foot tall brother who is five years older then him. Its been fun to watch him take piano lessons, swimming lessons, and even learn to ride a bike. He is a train lover, and can spend all day in the playing room setting up all sorts of tack configurations. But his favorite thing is hanging out with his Dad and going metal detecting.

Clint (8) is fun, happy, full of life, imaginative, and creative. His dimpled smile wins the hearts of all who know him. He keeps us laughing and enjoying life. He tires out his Dad and anyone else who will wrestle with him. He is always on the go, and very athletic. His love for dinosaurs is unmatched and spends a lot of his time playing with his collection. He can tell good stories, and makes friends easily. He and Brock really balance each other out with their personalities and I’m so happy they have each other.

Our Blind AdventuresDavis (15) loves children’s programs on TV like Spongebob, Toy Story, and Santa Claus. He watches Christmas movies year round, and thankfully there is a Santa App that lets him talk to Santa often. He is the UFC’s biggest fan, he likes all the fighters, but Chael Sonnen is his very favorite. He likes to memorize the commentary and say it while he watches. He adores all of his cousins, grandparents, and aunts, uncles, and friends. He especially love going to church to sing the hymns and pass the sacrament.

Ashlyn (14) loves being a teenager and wants to share her excitement about that with everyone. She loves Our Blind Adventuresmusic, especially Justin Bieber, and pretends to call him all the time on her phone. She loves her Build-a -Bear teddy bears, barbies and jewelry. She is still the sweetest, most precious girl I have ever known. She is happy for the happiness of others. She is generally always in a good mood, and shares her love for all around her. Unfortunately she and Davis have had more challenges as they’ve gotten older. Both were diagnosed with a Epilepsy. Thankfully medicine has been able to keep them under control. Ashlyn’s speech started to deteriorate a couple of years ago. It’s very difficult to understand her, similar to a slurred stutter. It takes a lot of guessing on our part to communicate. She also has a tremendous fear of falling, and that has debilitated her movements. Walking is at a snails pace. All these things we continue to work on hope for progress in the future.

It is my privilege to be their mom. Of course it hasn’t been easy, but the reward has been greater then anything else I can imagine. I am thankful for the person they have helped me become. I often think because of them, this is how my life has changed for the better. Patience in abundance, love without measure, and most importantly, helping me turn to Heavenly Father and Jesus Christ more fully. I have been taught about Jesus from the time I was little. I was baptized a member of The Church of Jesus Christ of Lattter-Day Saints at age eight. I spent time studying the scriptures, going to church and seminary. I had a testimony of Heavenly Father and Jesus Christ. I had tried to live the things I had been taught, and to keep the commandments. I’m thankful for that foundation. Without it, I’m not sure how well I would have gotten through the coming battles. I learned to rely on the Atonement of Jesus like never before. I learned what faith really meant. Neill F. Mariott said, “In order to have a healed and faithful heart, we must first allow it to break before the Lord.” My heart had been broken time and again, and He was there to put it back together each and every time. He has been the constant and sustaining presence in my life, and I will sing his praises forever. I know He is resurrected, and that after this life is through, they too will be made whole and perfect. I can’t imagine a greater gift.

Our Blind AdventuresMy journey is ongoing, I’m sure I have much yet to learn. I’m excited for my future and that of my kids like never before. This is the best time to be alive if you have a disability. My husband is such a strength to me, and has shouldered the burden and carried the load with me. He is an incredible example of service and compassion to those around him. He is a great father to the kids. The thought of doing this alone is inconceivable, and I’m so thankful he has been by my side through it all. We are still a work in progress, but we are getting pretty good at being united in our struggles and working through them.

Written by Tina. This story appeared first on Our Blind Adventures.