The Hogan Clan: Another shift in our world

I have sat down to write this post several times over the last week and have struggled to share where we are in life. I think there is a part of me that hopes that things not talked about will just cease to be reality. One week into a new reality in our household has proven that hypothesis to be false. So…here it goes.

A week ago, I took Sidney, Keyan, and Abagayle to their bi-annual visit with the pediatric ophthalmologist. McKenzy graduated a year ago so the three girls, myself, and our dear friend Grandma Greta went for what is always a very long afternoon of appointments. Because much of the eye development happens in the third trimester of pregnancy, which our girls missed out on, they are at risk for vision issues and these appointments are vital for the girls. Ironically, that very morning, the health department had been into the classroom at school to do a vision screening and all three of the girls had failed…..just the thing they needed to tell Miss Sidney! She was a nervous wreck about failing a test. So, I wasn’t surprised that Sidney needed to have her glasses prescription tweaked to get her seeing clearly again. Abagayle too needed a little tweaking and in fact the doctor suggested putting her in bifocal lenses to reduce the strain on her brain and allow the brain to process things better. “OK” I thought, “if it will help her focus and learn easier, let’s go for it…we can do this!” And than it was Keyan’s turn.

I noticed right away that she was not answering the questions correctly during the initial exam and as the doctor continued to work with her, I noticed that she wasn’t able to see the letters on the computer screen at the end of the room. She only saw one green light instead of two and when checking her depth perception with some goofy glasses and pictures that should jump out at her, she was not answering the same way that the other girls did. I started to get slightly concerned but I told myself that she just needed to have things tweaked and she would be back in business. That is why we were there right? We had noticed that her vision was different but again just thought that she needed a change in her prescription. However, as the appointment continued, it was quickly clear that something was going on and it was undoubtedly not good. From our understanding at this point, the blood vessels of Keyan’s retina are thinning. That means that the retina is not able to get the proper oxygen or get rid of the waste cells efficiently. We do not know why it is happening now, although we know that she is at risk for retina issues because of her health history. Normally, the issues do not normal surface until later in life. Right now, we can not get clear answers to our questions as to if this will keep progressing, or if there is anything that can be done to stop the wear on her retina. We have an appointment with the retinal specialist March 13th and are hoping for more answers and guidance to this new problem.

Please understand, that Keyan has always been severely visually impaired but in the last three to six months, her eyes have taken a drastic downward spiral. She is now legally blind in her left eye and the right eye is not far from it. Needless to say, we were completely caught off guard. Looking back over the last few months, we can see the signs that things were changing. Keyan was falling more often, she was sitting even closer to the TV than normal. She wouldn’t “drive” her own wheel chair in unfamiliar settings. She was easily frustrated and at times irritable which is not her normal personality. She has been getting closer to people to talk to them and has been running into things in her power wheel chair. All of these things could be explained by a hundred different things, but we now know it is because she is not seeing as well as she once did and is not feeling as confident about her surroundings.

It has been a hard week for me. I am still crying on a daily basis. Since finding out, we are hyper-aware of the differences and it is heart breaking. I cry not because of what it means for me, but I cry for her. When she asks me if the sidewalk goes up or down, when in reality, there is no slope to it, I choke back my emotions as I answer her. When she tries to play a game on the computer and finally sits back with a heavy sigh and simply states, “I can not see,” Paul and I lock eyes and scramble to figure out what we can do to help her. We have already started making different accommodations where we can. I now tell her about changes in the terrain in order to help her feel more confident, and make sure that someone is holding her hand when we are not at home. We have ordered new contact lenses for her and a pair of reading glasses to help ease the strain on her “better” eye in hopes of retaining the sight she still has. We do not know what the future holds for her eyes, but we are trying to grasp this new reality with strength and endurance….it may be a long road.

A road…that just seems so unfair. I struggle with feelings of anger…SHE doesn’t deserve this. She doesn’t need one more thing to make her dependent on others. She doesn’t need another struggle! I hate it! And yet, that anger has to be channeled into advocating, learning, and planning for her. I know that Paul and I can do this, I just don’t want to. My head is spinning with things that we need to do and look into and yet the reality is that there is very little that can be done at this point. I hate the journey of going through the process. I hate the time that it takes, and I hate the not knowing. You would think that I would be used to it, but the reality is that this has knocked my feet out from under me. So, today, I keep taking deep breaths as we start putting our world back into some order, we are more thankful than ever for the sight that we have, and we ask that you keep our precious little Keyan in your thoughts and prayers. I know that as she continues to face the world with less sight, she will do so with that big beautiful smile and joyful attitude that has carried us all through some very dark times.