Another blow

Yesterday I was a little on the sad side so I decided not to post an update. We took Butterfly Girl for a second opinion in regards to her vision. Not because we don't trust the eye doctor we see, but because we just wanted to know we were giving her the best quality of life and that they agreed with our current doctor. A tiny piece of my heart wished that they would say she had perfect vision. That she could see and our other eye doctor was crazy.

As you can imagine her eyes were not perfect. She still has CVI. She still can only see some of the day and not others. Based on calculations from the VIT and the eye doctors she sees any where from 10-20 perfect of the day. It was a blow to my heart. Why? I knew it was coming. It was a blow because I had gotten my hopes up. It was a blow because after 6 months of knowing something was wrong with her vision it isn't any easier then it was then. I cried. I cried lots. Its hard to know your child will have to live with a life altering condition their whole life.

Then something I was not expecting happened. Butterfly Girl is farsighted when she is able to see. We were told that her farsightedness is getting worse. This is not something we wanted to hear. That means when she does see shes seeing worse and worse pictures. This eye doctor did tell us to use the glasses all the time unless she is sleeping. If we use the glasses that gives her the best quality picture when she is seeing throughout the day. In turn this gives her a better quality of life. So while this is a blow to my heart again, I know that she will have a better life because we saw this doctor. She will have a better life wearing glasses even when she can not see.

Please continue to pray for us. This journey is hard and long. It is never over. It will never leave us. We can not just jump off and say we no longer want to be on it. We need to follow this path. We need to see where God is leading us. We need prayer. We need support and well wishes. Thank you to those who read our blog. Thank you to those of you who pray. 

A Normal Day

I am not sure that I can even call this life normal. It's not. However, today has seemed the most normal in a long time. I tried to keep my mind off what Kinsley's diagnosis. I tried to keep my mind off her upcoming MRI. I tried to make the day as normal as possible. Guess what, It was peaceful.

The day started uneventful and continued. Although neither of the little girls didn't want to nap today it didn't seem to matter. I was at peace. I didn't get to nap or sew like I normally would do while they are all napping in the afternoon, but that was okay. I just rolled with the punches.

If I have learned anything about this new life we are traveling it is that I am not in control. My plans can be just that plans. They may or may not happen. God is teaching me that as long as I abide in him I will be fine! I will make it through all things. I can have peace during these stressful times. I think the hardest thing for me is through this whole thing is the ups and downs. Its an emotional roller coaster that I am not sure how to handle some days. I will take whatever peaceful days I can get.

I can truly feel all of your prayers. Please keep them coming. 

Upside Down and All Around

Please excuse my break from blogging. Oh how I have missed it. I needed to take a slight break to deal with life. It has kind of gotten out of control. So where do I start? Let me think about this.

I hope all of you had a very blessed Easter! I spent mine with family. Kinsley also go baptized. And it was her daddy's birthday. It was a packed weekend, but full of fun. Enjoy a picture of her in her outfit made my mommy!

Well this diagnosis is hard! The day I think it gets easier I get knocked right back down. Its hard to think about some days. With Kinsley being the only baby her age that we really know I don't ever seem to think of her as behind or delayed. She is just who she is. While this is still true. She is her own person, she is behind others her age. This was brought to my attention today. It was a smack in the face so to say. This life is hard. There are still days I want to cry.

After much hassle with the insurance company and the eye doctor Kinsley will have an MRI on April 23rd. I am scared and elated at the same time. I am so glad it is happening. That we will get an even clearer picture of what is happening in my poor baby girl's head, but I'm scared.

As I said, I have had a rough go about the past week or so. Life has brought me down. I have not been handling things well, which is what brought on the hiatus from blogging. I did realize the other day that blogging does help and therefore hopefully these breaks wont happen often.

Since Monday I have been doing something on my facebook wall to help me with this life I am trying to make sense of. I have been claiming victory in the name of my heavenly father over certain aspects of my day and feelings. Boy has this helped! If I say it out loud and share it publicly I have been more apt to actually feel that way. It has in turned made this house more peaceful, fun, and joyful. I have been able to release some of the pains I have been suffering.

A verse that I wear on a hat says this "If you confess with your mouth that Jesus is Lord and believe in your heart that God raised him from the dead, you will be saved." Romans 10:9

The same thing goes for my Victory over statements. If I confess what I have victory over and believe them my life will be better! Not 100% free from the attacks of the devil, but I will be able to better handle life.

Please continue to pray for us. This journey is far from over. This journey has just begun. We are still dealing with it on a daily basis. Please continue to pray for strength and understand for my husband and I.

Carrying the Burden

Lord, will you please carry this burden I hold. Will you please take it away. I don't want it. I can't handle it.

Child, this is not a burden, but a joy. You must find joy in all things I have given you. You must find joy my child. Joy will bring you through. The burden will lift if you find beauty in the way I have created your life.

This was the conversation God and I had today. Right now I feel like I am carrying life's burdens. Every day, everything feels like a burden. I have felt like Kinsley being blind is a burden. I have felt like my other kids being naughty has been a burden. I have felt like my husband wanting to spend time with me has been a burden. Not to mention laundry, dishes, and everything else I need to do as a wife, mother, and homemaker.

I try to have life in order. I try to make sure everyone gets done what needs to get done. I try to make sure everything runs as smoothly as possible. I try to make sure that I do it all. I carry the burden becasue I don't think any one else can do it as well as I can. I carry the burden because I don't feel like someone else wants to help. I carry the burden because thats who I am. If you asked me right this minute to help you move from one end of the house to the other I would. That's who I am. That's how I was raised.

Today the burden finally crushed me. I was in tears. I spent the day fighting for my child. Advocating for what my precious blind baby needs. I spend the day rocking her and getting her to sleep for five minutes just for her to be awake again. I spent the day discipling my two year old who is going through the dreaded terrible twos. I spent the day feeling quilty that my sweet, loving little boy has been neglected in all of this. I feel that way because he is so good. He doesnt complain. He plays so nicely by himself. I spent the late afternoon trying to wrangle in the attitude of my almost 6 year old. My mind was other places as well. I needed to work on my website for the business. I need to sew the girls' Easter dresses. I need to print off some papers. I need to do this and that.

My husband called after he was done with work and I told him everything that happend during the day. He was short with me. He had a meeting to go to. I so just wanted him to stop everything he was doing and listen but he couldn't. It wasnt in his time or plans. After hanging up with him I cried. I couldnt carry this burden any more. So I went to my heavenly father. This is where we had the conversation above.

I have been looking at all of these things as a burden. Im looking at life all wrong. I need to find the joy in all things! I need to find joy in my almost 6 year old throwing her attitude around. It means that she if forming thoughts and opinions. It means she is alive and well. I need to see the joy in a son that is so content to play by himself. I need to find the joy in Kinsley being blind. There is joy in it all! There is JOY I just need to find it.

Does that mean I will be happy all the time? Does that mean that I will never feel like I am carrying this burden all by myself? Does this mean that I will feel like this burden is going to crush me again? I don't think so. I think at different points on this journey all of those things will feel like they will happen again. I won't be happy all the time. I will have my sad days, my sad hours, or moments. I will have those times where I feel like I'm doing it alone. Like I'm the only one carrying the burden. I then need to remind myself that its not the case. God sent a whole community of believers to surround me and my family. I have many a church members that I can call on if I need to. I need to swallow my pride and let others know that I need them.

Carrying the burden is hard, but its not near as hard when you have God. Its even easier to carry the burden when you look for the JOY in all things big and small, easy or hard.