Let me back up just a bit. In May, most of you know we welcomed a new, precious foster baby into our home, McCrae's half-brother who we named Luke.
Isn't he just darling?!?
I know right?!?!?! Like how could he even GET any cuter????
Towards the end of July, I noticed Luke wasn't following us with his eyes as he should. He would look right at you when you were talking to him, but as far as tracking you with his eyes.... not so much.
How could he get cuter??? Oh that's right, put a tie on him. ;)
The first week of August, Joey and I went on a 7-year belated honeymoon. It was a wonderful trip, but it ended in a serious car accident that took us a several weeks to fully recover from. (See... I TOLD you that July and August were eventful. haha. No worries, we're fine now, we have a new car, all is well. I'll share all of that story another time.) In August, Luke was staying awake for longer periods of time, and when he was awake he was more alert than he had been before. So I started playing with him more, and just out of my own curiosity, conducted a few "tests" on him. I would use the flashlight app on my phone and move it back and forth in front of his eyes to see if he would look at it or follow it..... he didn't. I would take a musical toy with flashing lights and move it back in forth in front of his eyes to see if he would follow it and he would.... a little. His eyes would move a lot and if I held the toy still with the music playing he would look more in that direction, but if the music stopped his eyes started moving around like he was looking for something again. I would also turn our bright recess lights on in the dining room and purposefully take him out of his dark bedroom in the morning or evening and go stand directly under the lights to see if he would squint like babies usually do.... he didn't.
Based on my "educated" opinion... I wasn't sure if our little guy could see. Like, at all.
I didn't tell anyone this for a long time. Until I finally told my friend Amanda that I was afraid Luke was blind. It was the first time I'd actually put those words out there into the universe. The night before Luke's 4 month well-check, I sat Joey down and told him my fears and concerns. I knew I was going to have to tell Luke's pediatrician everything so we could start getting some referrals to specialists and figure out what was going on.
The next day, I told the pediatrician everything, let her look at him for herself, conducting nearly the same tests I had done (albeit with more professional looking equipment), and just like I had predicted, she immediately referred us to an ophthalmologist and ordered an MRI for him.
He fell asleep like this in his bouncer. Isn't he adorable?!?! And look at that red hair!!! Just like mine... Oh how I hope he keeps it!!!! *fingers crossed*
I took Luke in to the ophthalmologist (do you realize how long it took me to be able to spell that correctly... O.o) who dilated Luke's eyes and performed several tests. The doctor said Luke had very poor vision and that the back of his eyes weren't healthy. This is a genetic thing passed down by his birth mother. He said he wanted to see Luke again, but this time at the hospital to do an exam under anesthesia. As he started wrapping up his stuff, and getting ready to leave, I mustered the courage to ask him the two hard questions.
"Can he tell the difference between light and dark?" I asked quietly.
The doctor shook his head and said, "No....... I don't think so."
"Is it reparable?" I asked.
Again, the doctor shook his head and said, "No..... I don't think so."
I left the doctor's office stunned. I have never been around a blind person, I don't know what they do, how they do what they do. I don't know the first thing about raising a blind child. I cried as I drove home, looking at everything that Luke would never get to see. Thinking about how he would never see his wife walk down the aisle, never see the gorgeous sunsets that God gives us. How would I explain to him what the color blue is?? And why momma thinks snow is just so beautiful??
Just typing this brings tears to my eyes that pour down my face...
I got home to find Joey had been crying as well. But this hadn't happened to us, it happened to Luke. There was no reason for our tears, except the sorrow and mourning for a life that Luke would never have.
The next appointment was the MRI. Since he is only 4 months old, they had to sedate him in order to do the MRI. I watched as the put an IV in his tiny veins, put heart/BP monitors on his chest, and beamed with pride as he took it all like the champ he is! Only crying a little when they stuck him and then settling down as soon as they would let me hold him again.
Some quick cuddling after they put in the IV and before they wheeled him out.
They wheeled him out of the PICU room and away he went to be put under sedation. He was already awake when they wheeled him back an hour and a half later.
Smiling, and hungry. I fed him and after another hour of monitoring his vitals, they let us go home. A week and a half later, I finally got the call about the results...
Luke's MRI showed that his optic nerve had not fully developed in the womb. Which means, his condition has been this way since before birth. I still don't know if that's a good thing or not. I guess to him it is. I asked the pediatrician if there was anything to be done... she said she'd done some quick research and had some ideas but would talk to the ophthalmologist again to talk things out. But there was something else...
Luke's MRI also showed a "bright spot" on his pituitary gland. I asked what that meant and the pediatrician said she didn't know, it wasn't her specialty. But she was going to refer us to an endocrinologist for answers. I googled it, of course, and discovered that the pituitary gland controls hormone secretion of nearly everything in your body... body temperature control, growth, sex stuff. We have an appointment with an endocrinologist in Lubbock next month where hopefully we get more answers, but of course, it will also mean more questions.
That's the thing about this. Everyone wants answers. The caseworkers want an official diagnosis, but we don't have one yet. Joey and I want to know what we can do about all of this, but we don't know that yet.
Right now, this information that I've just typed, that's all the information I have. There's still so much left unknown. We're still coming to terms with how this is going to make life so different for us. One evening as we sat out on the patio and talked about things, Joey said he was glad that the other boys were so close to Luke's age because they will be able to watch out for him at school. I sighed and said, "Ohhh honey, Luke isn't going to go to a regular school. He'll have to go to a special school somewhere. But I don't know where, or how, or anything... But Luke is going to have a very special life that will be different from anything we've ever known."
I don't know where Luke will go to school. I don't know if we have to send him to a school of the blind and not get to see him all the time. I don't know if the doctors will figure out a way to repair all of this. I don't know how to explain this to Luke's 1 and 2 year old brothers. I don't know what the endocrinologist will say and if it will be good or bad. I don't know anything about what will or might happen. But there are a few things I do know:
I know I love this little boy with everything I have, and am so thankful for God bringing him to us.
I know that he will have the love and support of a large number of people that he wouldn't have gotten had his mother not abandoned him.
And I know that while I will be his eyes, he will be the one teaching me to see.