Friday, October 4, 2013

Luke

Hi y'all! Yet again, I promised you an update weeks ago, and yet again, I've put it off far too long. I was going to provide you a fun update about all the fun things that happened to us in July and August (and believe me, a LOT happened) but right now, it's time to provide you an update on something different. Something that is a big life-change... so big I have no idea how big it's going to even be. But I'm ready for it, whatever it is. 

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????


When we got Luke, we noticed his eyes were crossed but everyone (family, friends, doctors, caseworkers) said not to worry, most of the time eyes will correct themselves around the 3 month mark, and if not, there's a simple procedure the doctors can do most of the time to correct it. No big deal. So, I listened to everyone and didn't worry. I honestly thought the problem would not fix itself, but I trusted that there would be a simple procedure done to correct it. Nothing to it. Plus, Luke was 5 weeks early (as near as they could tell), so this could just be something related to that. No worries. So we waited, and just enjoyed all the cuteness of this new little boy. Life was quite an adjustment with now THREE little boys ages 2 and younger (yeah... it's quite a madhouse I can assure you) but we were hanging in there and life had developed a new (albeit crazier) routine for everyone. 

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. 








11 comments:

  1. God has a plan....always remember that...I'll be praying.
    Debbi
    -yankeeburrow

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  2. Regina- With all the unknowns I do know one thing. he is the luckiest boy in the world to have a mommy that loves, cares about and fights for him everyday. You are amazingly strong with great faith. Just know there are a lot of prayers for all of yal just like in the case before! Love you!
    Lindy

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  3. What a beautiful little boy. No matter the outcome, it is in God's hands, and God knew he would be in good hands with you. ~Kimberlee

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  4. I am praying for you as you and Joey come to terms with this the challenges Luke will face. I want to reassure you that he won't necessarily have to go to a blind school. Like Joey said, he has amazing big brothers who can help. You can take him to workshops and get training on how to navigate in a sight world. My cousin was blind and while I was sad that she couldn't see the colors I find beautiful, she found beauty in how we would describe things. She once told me words were almost as beautiful as she would imagine the actual colors would be. She also played all the game shows and chewed me up once side and down the other one time when I told her what the word was the players were describing! LOL She told me there had to be one reason she was blind and it was for the game shows! LOL

    You are amazing parents and Luke is very blessed to have you. I love you both and admire you so much!

    Love,

    Lorie

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  5. (((((HUGS))))) I am definitely praying for you and the whole family! Thanks for updating us, too. I think about you often- especially this afternoon when I saw Frankenberry Fruit RollUps! :)

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  6. Regina, I know we have never met but I know you family in Colo. and well Calif. now. You said you were crying writing this, I too was crying while I read it. My main first 3 thoughts were, God knew when he gave you this BEAUTIFUL, AWESOME CHILD that you and Joey would keep him and love him, no matter what. You would just not put him back in the system because he was "broke" and last I wonder if you know of or read about Helen Keller. This brave smart women has inspired me since I was young. Since she was young the medical fields have learned so much more. I will continue to say prayers for all of you. I know for a fact that when my "family" here sees Luke if they have not as of yet. He will be overwhelmed with hugs and kisses and just plain love. Thank you for sharing.
    Betty Wray

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  7. sorry I forgot my email is wray64@msn.com

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  8. Oh you! This was such a heartbreaking BUT encouraging post. THANK YOU for being so selfless and not giving up. For loving this little guy despite his imperfections. Praise Jesus for Luke and so glad for promises like, "We are His masterpieces". Luke is certainly God's precious masterpiece :)

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  9. Oh Regina, I had tears rolling down my face. The unknown must be so scary and overwhelming. Luke and your family will be in my prayers but despite the outcome I know he is one very lucky boy to have you as a mother!

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  10. PS. I'm pretty sure that's a doll in the first picture and not a real baby LOL He is beautiful!

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  11. Hi Regina. I just read back to this post about Luke. I want to mention something, and maybe it will help. Luke is a bright, beautiful, loved little boy - who happens to be blind. He is going to grow and develop in amazing ways, and he will "see" things differently than others, but he will see - and you will have many times where you will question his blindness. As he grows, it will be hard to let him explore, and get hurt, but the same things you do for sighted children, you need to do for him - he will learn best, and be strongest, by you and your husband letting him just be a happy, beautiful boy, who happens to be blind. It's a big adjustment - for you. For him, it's just normal. If you only treat him as a normal boy, that's how he will be. Congratulations on your beautiful family, Regina, you have worked hard for this! I have been praying for you for a long time, and it's amazing now to see answers to those prayers!
    Be blessed, sweetie, God has this under control.

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