Ryker's Story

Real Talk

Its been months since my last real post. Lately I have been feeling the stress of Ryker's syndrome, family challenges, and overwhelming to do lists. I was talking to Parker a couple of nights ago and he suggested that I stop being a fake positive all the time and just be real. Express my feelings and not to bottle them up inside until the point of explosion. So I have decided that my goal for this year. Its time to use this blog like I always meant it to be. My way of coping with the trials that I am faced with and the overcoming triumphs that I have in coping with those stresses. I have been following many moms that are raising special needs kids and I am finding that I am not the only one out there feeling the way I do. Like I told Parker, I love my son. Ryker is the best thing that ever happened to my family, but I hate Ryker's syndrome. Yes, I understand the syndrome is what makes Ryker special and different. But is also makes my life so much more hard. You know because of Ryker's syndrome we get a happy kid. Someone who just doesn't care about anything. He is always happy over the smallest things. I am grateful for that. I see other special needs kids that have behavioral problems, or more severe medical problems, and yes he has is fair share of struggles, but I could always be worse. I admire those parents that have a far more severe kid then mine. So what is there to complain right?/ To those parents, I want to give them a hug and tell them they are amazing and making a difference. There are times I wonder why Parker and I were chosen to be Ryker's parents. What was the reasoning? That's definitely going to be one of the first questions I ask when I die. I feel like sometimes I am still in denial when it comes to Ryker's syndrome. Like, its just a phase or he will become normal someday. But the days that I realize its not going to change are the hard ones. Imagine your worst trial God has put in your path. You go through it and it sucks, but when you overcome it you have a sense of relief. Like, "I got this!" Give me another one! I am still waiting for the sense of relief. It never comes, and most likely it won't ever come. I am struggling I guess with just accepting it. Ryker is special needs and I need to just accept he will always be different. Who wants to be part of the norm anyways right? Think of swimming in the ocean. The storm is raging and you are drowning. Fighting for air, suffocating, and the only help you have is the small empty fishing boat floating away. The more you get closer wishing you could get in, the more scare you become because who is there to help anyway. Its hard to open yourself up to help, its hard to open yourself to those around you when you feel like a lost swimmer isolated and lonely. I am finding the lonely side of being a special needs family. We can't do many things other families do. Taking Ryker in tight public places is nerve racking. If someone is sick, Ryker gets it. And when Ryker gets it we are really stuck at home for two or three weeks because he always gets an infection from it. Let's talk preschool guys, oh my goodness am I super stressed about that. Ryker doesn't have the tools to help him communicate or realize danger warnings. If someone bullies him, he will just take it and not cry to say a word. Finding the right school that will do his therapies so he can learn to crawl and walk. Yikes!! I am probably being too over protective, but I didn't fight this hard for him to survive to get lost by the way side of school. I am a former educator. I know how it is. Scary!! Anyway, we just plucking at it. Keep on fighting and pushing forward. That's all anyone can do. Miracles really do happen. Ryker is a miracle and I know we will make it through the tough days as well.