Friday, September 14, 2012

I Once Was Blind But Now I See

When our sweet son Barrett was born we noticed right away that his pupils were not in the center of his iris and were also not perfectly round. We asked the Dr, she said it was fine but we got the feeling she didn't totally understand the question. At his 2 week appointment we asked again, this time she understood, agreed and gave us a referral to a Pediatric Ophthalmologist. After a few hang ups and delays we finally had his appointment on the 5th. Unfortunately Cody was gone so I went alone. The kids thankfully both were very well behaved (almost) the entire time for me :-) We met with the tech who took a look at his eyes and then started the dilation process. Because Barrett is so small they had to use a lower concentrated solution drop several times over a half hour to get the needed results, so we waited watching Nemo until it was time. Dr Arnold made a wonderful first impression and I truly feel that Gods hand was involved in getting Barrett in with this Dr.
Anyways he tested Barrett's eye pressure by tapping his eye many times with what looked like a fat pen. He assured me it didn't hurt (he had put numbing drops in his eyes) and Bear didn't seem to mind at all but it kinda gave me the creeps. Then he proceeded to look into Barrett's eyes with many different lenses and lights, from a ton of angles. He would give numbers or words to the tech but other wise remained quiet and focused. After some time he clicked on the lights and reached for a model of the eye, for the first time I felt afraid... I had known that there was a chance he had big problems with his eyes but hadn't aloud myself to think about it and get caught up in all the potential problems until we had an actual answer. Well now it was time for the answer and I wasn't prepared to deal with it yet! "Barrett has something called Corectopia in both eyes." I nodded, I had looked up this word and all it really meant was the displacement of his pupils, which I already was aware of. "This doesn't actually affect his vision." I felt relief flooding through my body, but before it could reach my finger tips (the ending point of all emotional rushes ;-P) he went on to say that the same muscle that had "pulled" his pupils had also pulled and dislocated his lenses and this was greatly affecting his vision. My heart sank, my eyes burned and I wanted to be any place else and hear anything else but what I knew he was going to say.
Because Barrett is looking through his lenses as an extreme angle he is pretty much blind except for some blurred vision for about three inches in front of his face. The solution to this problem is eye surgery to remove the lenses. *deep breaths* they do have artificial lenses that can be put in but Dr Arnold said this was not the right choice for Barrett, instead after the surgery we will be starting contact lenses! Oh my word, contacts on a baby! Have you ever tried to even suck boogers out a babies nose? They sure don't like you in their space thats for sure. Oh well thats a bridge we will cross when we come to it :-) Barrett's eye issues can be associated with other genetic traits and syndromes, so before we move forward with the surgery Dr Arnold wants us to see a genetic specialist first and get the full story of whats going on with our son. He would like to see Bear get his surgery before he is six months old though so we are looking at that in the near future. Until that time our little guy will be wearing glasses to help him see and to prevent any further damage to his eyes from straining, and to create healthy and correct pathways with the brain since his brain is doing all that kind of development right now.
Today we went to pick up his glasses, and thankfully we both got to be there. Barrett got really mad as she started sliding the glasses on his face but once I got him to calm down and open his eyes we witnessed one of the most beautiful things ever, sight! My little boy blinked wide eyed staring straight ahead then turned and looked right up at me... even now I have tears in my eyes thinking about the look on his face when he not only heard and felt me, but could see me! He looked at his daddy with the same wonderment, again my heart about burst with joy for him. No parent wants their child to have to have glasses but I praise God that there are glasses to help my child see, it was such a beautiful thing... We are so thankful that even though the road may be a little rough our son can have good sight, not perfect but good, he will get to see life :-) But our journey, our fears and the waiting is far from over and we would covet your prayers as we go through this as a family. Barrett's genetics appointment will be mid October, the first one will be fairly basic and most likely lead to many more. There is a chance that he only has dislocated lenses, however it is very common for this to be associated with several genetic disorders, some not such a big deal, and others a very big deal.
We have decided that the best thing for our family is to continue moving forward as if it is only Barrett's eyes and not get caught up in all the possibilities, otherwise we could be spending months in fear and worry and thats not what the Lord wants for us, or from us. As we get answers that are sure and concrete we will continue to share them with everyone knowing that the support of friends and family can be such a source of strength in difficult times. We fully trust that the Lord could keep this "problem" simple, but we also know He can use all things to His glory and we trust in His plan. As you think of us in the coming weeks and months, or see a picture of the darling baby in glasses ;-) We would love your prayers. Prayers for the Drs as they continue to do testing and look for answers that they will make the best choices for our sons future, that they wont miss a single thing and that they will be patient and kind. Prayers for us as parents because as much as we wont be pursuing the scary facts we are still
afraid, we are sad and worried for our son. We don't want anything to take from this amazing time with our children and this stage of life. Pray that we make the right choices as well for Barrett and that we can be strong and brave as we are advocates for him. And of course pray for our sweet little Bear. From the day he was born Barrett has been a little more needy, wanting to be held and snuggled close. His favorite spot is having his face snuggled into my neck (or boob lol) he wants to feel safe and close. We truly feel that this has been due to his sight. Pray for healing and continued health.
We will continue to bring updates to this blog as we go forward with our feelings, updates and dr appointments and we really are thankful for your support through all of it. This might be a bump in the road or it might be a turn up a long and steep hill, no matter what we put our trust in the Lord.
Romans 12:12 Rejoice in hope, be patient in tribulation, be constant in prayer.

3 comments:

annamae said...

Such a handsome little guy! Love that moment he got to really see you guys! I asked for prayer for you all at my women's group and one of my friends reminded me of Psalm 139: 13-16 " For you formed my inward parts; you knitted me together in my mother's womb. I praise you for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes swamy unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there were none of them."
God created Barrett before you even had a thought of him. He was knit together in your womb by the hands of God. A God who makes wonderful things! Barrett is perfectly formed just as God intended. He may not conform to worldly standards of " normal " or " perfect" but he is perfect. I have seen God glorified through you guys and Barrett already, I can only imagine what he's going to do in your lives and the lives of those you meet because of and through this. We love you and continue to pray with you and praise God for how he's already begun such a great work in Barrett's life! 

jeffl7 said...

Emily, thank you for taking the time to put this into words. You are a great writer, and though early on I expected most of your writing in life would be fiction, I am most captivated by your non-fiction.

Thanks for allowing us to peek into your family, your heart, and your hopes and fears.

We are so grateful to have you in our life.

A.Tilley.Girl said...

I got teary eyed reading this. You are a beautiful writer and are so raw and honest about everything. Barrett is the sweetest little man and looks adorable in his little glasses. I will keep you and cody and willow and barrett in my prayers as you continue on this journey. We love you guys and miss you tons!!!