Where to begin…
First of all, I want to say I am so grateful that God has blessed Slade and me with a beautiful baby boy named Ryker. What a wonderful gift! As I’m writing this I’m sitting in the floor watching Ryker roll around and play and the only thought that comes to mind is perfection…sweet, sweet perfection. He is cooing and smiling, such a happy baby. I often catch myself watching him and wondering what he’s thinking about and what God has in store for him.
On October 21, when Ryker was seven weeks old, he was diagnosed with Ocular Albinism and nystagmus. According to NOAH (National Organization for Albinism and Hypopigmentation) Ocular Albinism is an inherited condition in which the eyes lack melanin pigment causing reduced visual acuity and sensitivity to bright light. Nystagmus is the involuntary back-and-forth eye movement of the eyes. Ocular Albinism (OA) sounds a lot scarier than it actually is and it is important to remember that it is not a disease of blindness. Ryker will see. He will be legally blind but he WILL see. It takes babies with OA a little longer to develop their sight so at the moment (at 4 months) the only thing we know he can see is light. He doesn’t follow objects with his eyes although recently we have started noticing him focusing on some objects. While this has only occurred a few times we are very encouraged and excited about this. So what may seem as a small milestone for some is a BIG victory to us.
Like I said above OA is inherited. My dad also has OA and I carry the gene. This is something I have known since I was very young. Because of the way the disease is inherited we knew if I had a little boy he would have a 50% chance of having the disease and if we had a little girl she would have a 50% chance of carrying the gene and passing it on to her children. Slade and I never questioned having children. It is something we prayed about and had such a peace about.
I would like to take this time to brag on my dad. Despite the fact that he is legally blind he is a great carpenter, college educated, drives, traveled Europe, hunted and played sports when he was younger and much more. He hasn’t let his disability hold him back. I would say if anything he used it to help motivate him and give him the drive to accomplish everything he has set out to achieve. He is the most determined (and stubborn) person I know. I think knowing what kind of man my father is and seeing what he has accomplished helped us know that if we had a little boy with OA that he would be okay.
Obviously, if it was my choice I wouldn’t have chosen for Ryker to have this disease and we know because of the disease there will be challenges he will face. But the way we look at it is that while we know he will face hardships because of the disease, it isn’t something that should keep him from reaching his goals. The bottom-line is with or without the disease he is a HEALTHY, happy little boy. What else matters? Will he ever be a fighter pilot or a racecar driver? No, but honestly as a mother I don’t want him to be those things anyway…too dangerous! There are a few things that OA will hinder Ryker from doing/becoming but not much. I know someday he may be made fun of because his eyes move back-and-forth or he has to sit at the front of the classroom but Slade reminds me that if it wasn’t his eyes/vision it would be something else. I have to remember I can’t control every situation Ryker is in or protect him from everything but as a mother it doesn’t mean I won’t try. I would like to share a quote from a mother whose son also has OA. It sums up how Slade and I approach this situation. “The bottom line is I am the mother of a son; a diagnosis doesn’t change who he is or who he wants to be. It changes how I as a parent, find the opportunities for him to get where he wants to be.”
There has been a lot of confusion about Ryker and what he faces. Again, Ryker will see. The question is not if he will see but how much vision he will have. We pray that our son will have the best vision possible with OA which is 20/60. We know that God is in control and because of that nothing is impossible.
I think the hardest and most hurtful part of it all is that some people that knew about the possibility of us having a child with OA didn’t think we should have children. Hurtful things were said. I’m still struggling with forgiveness and resentment and I believe it will be something I will continue to struggle with. It’s hard to see people love on your child after they thought you shouldn’t have children because they may be “flawed”. Looking at him now (he’s sleeping now…so peaceful) and I can’t imagine my life without him. He has already been such a huge blessing to us since he was born just 4 short months ago.
Slade and I would love for you to join us in praying for our son. Our prayer is that he will embrace his condition and never let it define him or become an excuse, rather that he will use it to motivate himself to accomplish all that God has in store for him. We pray that he understands that God has a plan for his life. Something I hold on to and pray that someday Ryker will understand is that God doesn’t make mistakes. We are all God’s creations. We are all different and unique and we all have our individual battles we will face. That’s life.
I want to use this blog to share our journey, the ups and downs, the milestones Ryker achieves, and the victories we experience.
