We have had a lot on our minds the last several months. It is something that we have shed some tears over, prayed about, and probably talked more about with each other than anything else. It is something that is constantly on our minds and that I feel can be shared now that we have more information.
When Karrington was just a week old, I noticed that her eyes were different. The shape of her pupil was not round and I immediately starting doing my own research online. I quickly found that there is an eye condition called coloboma. It is so rare that not a lot is really known about it. Only 1 in 10,000 people have this condition where the eye does not fuse together when the eyes are developing in the womb. This leaves a hole in the eye which often is only cosmetic only affecting the iris. However, Karrington is one of the very few whose eyesight is effected with the coloboma going into her retina in one eye and her optic nerve in the other. After seeing two different pediatric opthamologists, at 8 weeks old and 7 months old we know that she is legally blind in one eye. She may very well be legally blind in the other eye as well or may have slightly better vision. It is something that we will find out in the future, and continue to pray about daily. Unfortunately, there is no cure for coloboma. There is no surgery that can be performed and glasses will not help the eyesight in any way.
I try not to ask myself why this happened too often. I try not to let my mind go there because I don’t know the answer to this question. I like to think that someday Karrington is going to be someone that influences and impacts the lives of many. That because she was born with coloboma and is visually disabled she will somehow have the power to do more good with her life than if her eyes and eyesight were normal. It is hard for me to grasp that she has a medical condition that only affects 1 in 10,000 people. The fact that it is so rare, something I’d never even heard of, makes it seem almost unreal sometimes.
So far, we have not been effected by having a baby that is legally blind. She is just 8 months old and is able to do what most babies do. Again, this makes her diagnosis not seem real. But, I would be lying if I said I didn’t picture what our lives might be like in the future. I know we have many challenges ahead. I have a daughter who more than likely won’t be able to drive. She will need an aide in school. She probably won’t be able to do activities like sports as she grows older. I think about little things like taking my daughters to the movie theater to see the latest Disney film. Will that even be a possibility? Will she be able to go to a movie and enjoy it and laugh about it with her sister afterwards? How will she react by not being able to enjoy these little things in life that the rest of her family can enjoy? How will she cope? These are the things that I think about late at night when I can’t sleep. It is hard not to get ahead of myself and instead take things one step at a time.
It is easy to get caught up in these things. To worry. To see all the downfalls. Here I am, a photographer. A visual person, taking pictures of people for a living. My career is completely engulfed by what I can see and how I see things around me. I’m taking photographs of my little girl every month wondering if she’ll ever be able to look at these photographs of herself and see them. To really see what she looked like. The answer is I don’t know. The doctors have told us that she can see movement and sees objects, but will not see details.
One thing I’ve learned in the past is that worrying does not do you any good! Worrying about the future is not going to make Karrington see better. It is only going to take me away from the joy of being her mother, right now in the present. Instead, I am trying to focus on what we have going for us!
- Things could always be better, but they could always be worse. What a blessing that Karrington has some sight! She might not see well, but some vision is certainly better than none at all. Instead of focusing on the fact that Karrington is legally blind, I’m focusing on the fact that she is a lovely, happy little baby. As far as we know, she is healthy little girl that certainly has challenges ahead, but seems to have an easy-going personality that I hope will keep her from getting down in the future.
- My relationship with God has become stronger. I’ve always had faith and a relationship with God. However, this relationship has grown so much. I pray like I never have before and have asked others to pray for Karrington. What a relief this has been. To put something in God’s hands and put your trust in him completely. A weight truly has been lifted off my shoulders and I know that even though I have a lot of tough times ahead we will be able to get through it.
- Karrington has a LOVING big sister. I’m so thankful for Reagan and the fact that she will watch over her little sister in the future the way she already does now. She has a personality that will include her and protect whatever comes her way. If another child makes fun of her because her eyes look different or her eye crosses, I know without a doubt that her big sister will protect and nurture her.
- I’m even more thankful for Reagan and all that she can do. I don’t know why things have to be taken away from us to appreciate them, but I’m thankful that she has her sight and is able to do all the things that she can because she can see!
- One of my cousins made the remark that blindness has been around since the beginning of time and how many resources there are for the blind. This is so true! I know we will be given plenty of information and help regarding how to raise a child that is visually disabled. The fact that we will live in a time with new types of technology that include electronics that are voice activated and new inventions such as a driverless car give me hope that in the future my daughter will not be limited in what she can do because of her visual disability.
- Karrington was able to see a fantastic doctor at UC Davis for her eyes. It was a long process to try to get to see a doctor there, but we were impressed with the office and how everything is run there! Karrington will see another doctor that specializes in pediatric opthalmology in regards to genetics next month as well to see if any other medical conditions may be present. Sometimes, those that have coloboma in the eyes have kidney problems as well so we are getting her checked out. I feel so good about the fact that she is able to see not one, but two different doctors at UC Davis who so far seem fantastic!
When we’ve told family and friends about Karrington, one thing we hear is that she is lucky to have us as her parents. I really don’t know how to respond to that, because as parents I think we all try to do the best we can for our children. To give them the best life possible and prepare them for the future. What I do know is that even though I have a baby that is legally blind, I would not trade her for anything. We will find perfection in her imperfections. We may have many mountains to climb, but how wonderful will it be when we reach the top and see all that she can do and has accomplished. Being told your child is legally blind hits you like a ton of bricks. It’s not something that I was prepared for. However, one day I think we may just look back on this and realize that the news wasn’t as awful as it seemed at the time. She will continue to enrich our lives and make us appreciate and enjoy things we took for granted previously. I can’t wait to see what she does in the future. We just LOVE and adore her!
8 months old
