by Lacey Buchanan, mother of Special Kids child Christian Buchanan, blogger, and leader of 250,000+ online fans
Why do I run?
From the moment I found out I was pregnant with Christian, I was madly in love with that sweet little baby inside my womb. He was my and my husband’s first child, we had almost miscarried him at 3 weeks gestation, and he had fought and held on. We were so excited and thankful that we were going to get to hold our sweet baby and see him grow. If you have children, you know that feeling of wanting to give them the world. You want to do everything in your power to give them every opportunity to be the best they can be.
When you, as a parent, are unable to give your child something they need, it’s a feeling that can only be described as a stomach-turning, nauseating feeling of helplessness and desperation.
That is how I felt when Christian was born and I realized the magnitude of the needs that he would have. Christian was born with a medical condition that has only been documented between 50 and 60 times in medical history. To say that it threw up for a loop is a beyond and understatement. His conditions are Tessier cleft lip and palate with micropthalmia. What that really means is that Christian is missing parts of his face, skull, and mouth, including his entire palate and both eyes. Christian is completely blind and has undergone seven surgeries in his four years on this earth. Some have been minor surgeries such as ear tube placement, and others have been huge and very dangerous. Because of Christian’s defect to his mouth, he was not able to nurse or take a bottle when he was born. By four days old, Christian underwent surgery to place a feeding tube in his stomach. That was the first of many more surgeries to come on Christian’s journey. Juggling Christian’s medical needs, appointments, medical equipment, and all that it involved was a tremendous job in itself, but there was much more to it than that.
There was also the social aspect of having a child with special needs.
It’s something no one talks about. It’s like the big elephant in the room that no one wants to mention, but I certainly don’t mind opening up a dialog and taming that elephant. Christian’s birth defect is noticeable, and people stared, and whispered, and spoke up rudely, and at times, I almost felt as if we were a side show in the grocery isle. I felt as if I was always on the defensive, having to be on guard to protect Christian from nay sayers and doubters, from wandering eyes and those who didn’t know that it’s not okay to talk rudely about your disabled child right in front of you. It was utterly exhausting trying to constantly ward off the barrage of attacks that we received, whether it be over Facebook, at the grocery store, or at a doctor’s appointment.
Along with Christian’s medical needs and all the social issues we dealt with, there was also another area that we had to focus on and yet found myself totally unprepared for, therapeutic rehabilitation. Because of Christian’s blindness, he just can’t learn the way other children learn. It is estimated that upwards of 90% of everything a child learns in the first year of its life is learned through vision. Since Christian doesn’t have vision, I had to find a way to replace that 90% of things he should be learning in ways that he could understand, by touch, smell, and sound. Let me tell you, I was clueless. I only knew how to function with my vision. It was a daunting task to know that Christian needed so much, and there was so very little that I could give him when it came to that.
When Christian was four months old, I began taking him to Special Kids for therapy services. Christian absolutely flourished under the care of his therapists at Special Kids. He walked about two years before he was expected to, and in fact, he graduated out of physical therapy, meaning he had reached the maximum of developmental milestones that Special Kids could teach him and was ready to move on. In speech and occupational therapy, Christian consistently met his goals and learned new skills literally every single month. His therapists made it fun for him by choosing games that would encourage him to learn the skills he needed, such as putting together puzzles or climbing through tunnels. He thought he was playing, but he was actually developing and growing each week under the care of his therapists. They were giving him things that I could not, and to a mother, that is priceless.
I knew from the first time that I walked through those doors at Special Kids that this was where God wanted us to be. For once, I felt “normal” (whatever that is), at least, I’ll say, that I felt like we belonged, like I wasn’t the one everyone was staring at and taking pity on. When I first walked in, I was shocked because I had gotten so used to being looked at like I had a horn growing out of my forehead, and it just didn’t happen that time. People smiled at me, they spoke to me, they didn’t avoid us like we were contagious, they didn’t whisper about Christian behind my back, and I came to learn of the comradery that Special Kids creates, although I felt it before I ever knew what I was experiencing. We were all there for similar reasons, we all had the same fears and worries for our children, and we were all in it together.
The therapists were no different. Never have I had anyone so dramatically devoted to Christian’s well-being outside of my own family as Christian’s therapists.
It was a surprising but welcome change to have someone so in Christian’s corner and in my family’s corner. I had gotten so used to getting confused or disgusted stares, that it literally took me by surprise when I would bring Christian into a therapy and his therapists would genuinely seem as if they were happy to see us. Those may seem like small things, but to a mama who is hurting and just trying to make it day by day and do the best she can in being thrown into a difficult situation, it was a God send. It was the encouragement that I needed to be able to hold my head high and say “We will not hide who we are.” It was what gave me the confidence I needed to stand tall and hold my ground when it felt as if the whole world was pushing against me. That nauseating feeling that I talked about earlier, I don’t experience that any longer. Having the opportunity to watch Christian grow and flourish over the last four years has been a joy and a blessing because I know that he is getting exactly what he needs.
So why do I run? I run because every single child with special needs deserves what Special Kids has given Christian. They deserve the opportunity to grow, flourish, and thrive like Christian has. They deserve to be uplifted, loved for who they are, and have the opportunity to reach their full potential. They deserve to have people in their corner who will fight for them, carry them when they need it, and also push them to be their best when they need it. Why do I run? Because THAT is exactly what Special Kids does, and THAT is who they are. I run so that Special Kids can continue to change lives.