Vision Update

Well today was a busy day here at our house. Butterfly Girl had two therapy appointments for herself, and the older kids had the lady come that talks to them about having a sibling with special needs. Two of those happened at the same time. It was quite the busy morning.

We saw Physical Therapy first this morning. It was a pretty good visit. Butterfly Girl's large motor skills are getting better. She is army crawling which is good. She still doesn't sit up like she should. Her whole left side of her body is a good 60% weaker then the right side. This is why we need to get into neurology. We need to know what is causing her this problem. She doesn't really hold anything with her left hand. She will grab something and then drop it almost immediately. She just really struggles. Its so hard to watch.

Next we saw the VIT, which is our visual impairment teacher. She is super sweet. Although Butterfly Girl must have used all her vision for PT because our poor VIT didn't get any visual responses from her. We had a 0 minute vision response time out of 45. So frustrating because when she was here last time it was a 10 minute vision response time out 45. I need to remind myself that every day is going to be different. Every hour is going to be different. This is going to be the life we live with CVI.

We are doing a few things to try to increase the amounts of time she sees, but its not really helping. It is very hit and miss. Top that with how sensitive she is to sounds its hard to tell when she is seeing or not. Its even harder for others. I can tell by the way her eyes are shifted that she isn't seeing at that moment.

The big kids loved their appointment. They always do. It is so nice that someone will come to our House and shower them with attention. Its hard when you have a sibling with special needs (I know, I have one) because it can feel like all the attention is on them all the time. This lady comes to the house and does an art project with them. She reads to them. She talks to them about having a sibling with special needs. She talks about how we react to others and about how they feel. She teaches them that when they feel like they are getting left out the need to talk to mommy or daddy. Good, important lessons. We don't ever want to make our kids feel like Butterfly Girl's diagnosis is a burden on them. We don't ever want them to feel like they don't get the special attention they require just because she is blind. Sometimes it happens though. You get so caught up in a diagnosis that you easily forget that your other kids need you more then just to feed them. They want one on one quality time also.

I had a thought as we were sitting outside this afternoon. My baby, when she can see, doesn't experience the beauty of this earth the way we do. Even when she is seeing she doesn't have the best quality vision. This got me a little down. A little sad that she will never know the world to the beautiful extent that it has. She will never see the Lord's creation as it was intended to be seen. Then God send a slight breeze. Butterfly Girl smiled as the wind blew past her and I cried. She is experiencing the world in a far more intimate nature then those of us that see ever could. She feels every breeze, she hears every bird, she feels the crisp grass. Those things make her happy. Those things bring out the big smile she has. They bring the twinkle in her eye to the brightest it can go. Tears, yes, but happy tears. Tears knowing that she is not hindered by blindness. She will know the marvelous nature God has made and she will know its beauty, she will just know it on a different level then the rest of us.

I will have ups and downs for a lifetime. As normal as it seems now to know that her eyes aren't as they were intend and that she has thrown us the biggest curve ball we can imagine, I will still feel in shock some days. I will still feel sad about what she can not see. I just need to lean on my Heavenly Father for support. I need to lean on the prayers of friends and family.

Blessed are those who follow the path of the Lord. I will stick on his path. He knew we would see Butterfly Girl as a blessing. We just never knew how much she was going to be blessing us when we had her.