I've been a little nervous about this day for a while now! I knew Jacob needed to have his eyes checked (even though we knew he didn't have cataracts), and I knew it was going to be a nightmare. Nothing could have prepared me for how hard it was though. Thank goodness Wayne was able to go with me because he literally had to hold Jacob's face down and pry his eyes open for Dr. Metz to take a look! And what do you know, they looked great!! Shew! I was beginning to dread the mere thought of two in glasses.
Then it was time for Grant's appointment. It's been three months since he got his glasses. It's a new life now. I was just talking to someone today about how "normal" he is. For whatever reason (I guess because it's not often you see someone so tiny in glasses) people seem to think he might not be able to do the things other babies can. That is so not the case! This little fella is doing great. We just have a pair of glasses to add to his firsts in his baby book. :)
With that being said, we have been a little worried lately. His eyes have started doing this vibrating movement a lot. I spoke with Dr. Metz about it a couple of weeks ago, and he felt safe to wait until his scheduled appointment to come in. His nurse noticed his eye movement today, and then he did. He told us that although this isn't something that happens all the time with a cataract baby, it is a normal side effect. Where his cataracts were positioned in his eyes completely blocked the communication between his brain and his eyes. Now that they have been removed his brain has had to learn to do something (see) that it never knew it could do. Long story short... The vibrations are not effecting his vision, but it is something that will be there for forever. He did say with time it will get better and eventually only be noticed if really looking for it. He also said that Grant should be seeing (with his glasses) pretty close to normal. WOW! I was so excited to hear that. That's the first time he's come out and said that.
Then a dreaded conversation arose. He asked if we had ever talked about how the cataracts were inherited. We did the first day, but it was such a fog. All I remember was on some occasions it can be a fluke, and that's what Wayne and I have been clinging to. Well, he cleared the air. There is no need for genetic testing on Wayne or I either. Almost always if it's a unilateral cataract (only in one eye) it's a fluke. Almost always if it's bilateral (both eyes) it's genetic. OUCH. He told us that the gene had to start somewhere, and the only way we wouldn't be carrying it is if it started with Grant. He then went on to tell us statistics. Grant's children will have a 50% chance of having cataracts. (Poor thing.) Any future children we may or may not have will have anywhere between a 25-50% chance. Double OUCH. He also told us that any future children we may have will be watched very, very closely and we would be seeing him almost immediately after birth.
Wayne and I had decided not too long ago that we would most likely have one more little bean several years from now. Who knows now. We were definitely left with a lot to think about. Fortunately we live in a time today where this will not hinder Grant's quality of life. It might be frustrating at times (I'm sure he will hate it when he plays sports - he will have to wear sports goggles to protect his eyes), but he will have the same quality of life as anyone else.
With all of this being said, I struggle sometimes. There are times (like yesterday) when I wonder why something like this happened to us, to our precious baby. Then I just remind myself to put my big girl panties on and deal with it. It could be so, so much worse. I know people who are going through worse right now and my heart is totally broken for them. We have two beautiful, healthy children. Wayne and I are healthy. We have a roof over our heads and food on our table. And we have an incredible God that holds our hands through this journey called life. That's more than enough to be thankful for.
My husband had a cataract removed out of his left eye when he was 6 years old. Looked like a total fluke. I had no idea that it was something that could be passed on to our children until baby #4 was born with bilateral cataracts. I have since learned that all of our kids should have been checked (more than just the routine screening) shortly after birth! Thankfully they haven't had any eye/vision problems at all.
ReplyDeleteIt's interesting (and hard) to read the statistics your PO gave you. I understand your struggle and the conflicting feelings of being so sad your sweet baby has to go through something so difficult, yet so thankful that there are many things that can be done to help him and his vision.
I keep a blog that I update occasionally (I'm not the greatest at it, but I write down the basics). You are welcome to check it out! It's nice to come across others who are going through a similar thing as we are. bryanandangela.blogspot.com
Hey Crystal, You know that God has your entire family in the palm of His hand. Was just reading the other day James 1. Count it all joy... God tells us to count it all joy not that we have to rejoice with alleluia's when things happen but point to the One who knows the outcome and show the world what God's children do when these trials come our way because in Revelation it states we will have trails. You are such a Godly woman, Godly mom and a Godly wife! Love you and your strength. Laurie
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