Emotional

Life has been emotional at the very least of things. I have been going through a lot of internal struggles, but I have also been going through some struggles that are not so internal. It has been hard for me to compose my thoughts into a cohesive blog post. Heck it has been hard for me to compose my thoughts straight enough to get my point across to any one. It sucks. My family has been dealing with them the best we can. My husband and I have had many late night talks trying to decide what is the best for our family. We have been praying that the Lord set us on the right path. We have been asking if there are things we need to change. It is hard. Its never any fun going through these times of discovery. Yes, discovery. I say that because I do feel like we are trying to rediscover who we are as a family unit, who we want to become, and what we want to accomplish in this life.

My biggest internal struggle has been Butterfly Girl. I still hurt deeply. Now that she is crawling it is even more evident that she doesn't see what she is crawling into. This has lead to her getting some bumps and bruises. This has led to her sometimes being afraid of us setting her down. I still sometimes get the feeling like I did something wrong. Like I am to blame. Although I know this is not true the devil tries hard to use it against me. I also hurt for what I feel like she is missing out on. I hurt that she is behind other babies her age. My Butterfly Girl is PERFECT, but my mommy heart hurts. I wouldn't trade her smile for anything in the world. Her bright blue eyes draw me in every time. I just wish when I looked into those eyes I felt like she was looking back, like she was recognizing me. This road is hard! I have my moments where I am okay and then in an instant its gone.

I have been struggling with sending our oldest children to school this fall. I think we finally have that issue solved and they will be home schooled once again. It was a tough call. It was prayed about, talked about, prayed about some more. Up until this past weekend they were going to our local school this fall. The reason for them attending public school this fall was because Butterfly Girl needs so much therapy that I wasn't sure that I could devote the time needed to schooling them as they needed. After a lot of prayer my husband and I decided that we can do ANYTHING if it is God's will and by his strength and glory our children will get what they need right here at home. It is all about balance, something I am learning day by day.

Weighing heavy on my heart are decisions I am to emotional to make. Ones of friendship, loss, and brokenness. If I follow my heart my head gets angry. If I follow my head my heart gets angry. My husband and I need to continue to pray that these things are resolved, that we get through, that we make the best choices for our family. We can do all things through Christ who strengths us.

Emotions are sometimes like a bee sting, hurting us for a moment. Emotions are sometimes like chocolate sweetening this life we live. Emotions the Rocky Mountains or the depths of the Atlantic Ocean. They can be the rolling plains or the flat valleys. Two things I am very happy about when it comes to emotions is that no matter if I am experiencing those Rocky Mountain Highs or those Atlantic Ocean lows I have my Jesus who will never leave me and I have my best friend, the love of my life, father of my children, and whole world right next to me!

Problems with the blog

I have been having some issues with the blog the past week or so. It is giving me all sorts of error codes and giving me lots of problems with tags, posting, and letting me spell check. It seems my problems which have lead to lack of posting are keeping my readers from reading. I promise you I am working on fixing the issues. I am also reading a book to help me more effectively blog and liven it up around here.

I started this blog with the intention of keeping everyone up to date on Butterfly Girl's diagnosis and how she is doing in this difficult life that has been given to her. I want you to all know how we are handling it as her parents, siblings, and other family. I want you to all know how upside down our lives have been turned and how we are conquering blindness.

Part of this includes letting you know about life in general. Our family. Our beliefs. Our strive to be the best parents we can be in this daily life. To be the best business owners we can be. To be the best team we can be. We will kick blindness in the butt! We will fight to the end to give our baby girl the best life possible.

I want you all to be a part of this. I want you to know how are you pray for us. I want you to know how we are doing. Your prayers and support have been amazing! I can truly feel them. I am doing my best to fix the blog issues that I have been experiencing and getting you back up to date on what is happening in the world of CVI and how we are over coming! 

Missing

I have been missing. Yes I will admit I haven't blogged in a while. I decided to go to Wyoming *the state* to see my sister. I came home with my nephew. It was a good trip. I was there for a little less then a week.

I have had a saying this week that goes "Balance is Key" I have also said that my key is missing. I am not sure that I will ever find it back. Being a Christian, a wife, a mom, a homemaker, and a business women there is no balance. If I am working on being  a wife I feel like every thing else is getting forgotten about. If I am working on being a better Christian, my family, business, and house get forgot about. I am having a great deal of trouble trying to find balance.

Is there ever a balance to life? Will I ever feel like if I am working on one thing nothing else is being "forgotten"? I am not so sure. I can always try to achieve balance, but I may not ever be happy. So I need to find a new balance. A balance that requires me to be okay with the fact that I may never find the balance I wish to achieve. This for my OCD self is HARD.

I am also having a bit of sadness over missing one year of my children's schooling. We home school. That is what we do at this house, but once we had Butterfly Girl and we were told about her diagnosis we decided this year needed to be different. You see Butterfly Girl needs to have 4 hours of therapy a week. We need to be intense about helping her meet her one year milestones in an appropriate amount of time which will require me doing home therapy on top of the times the therapists are here. Therefore after much discussion with my Husband we decided that it would be best for the oldest two to go to public school this fall. It makes me sad. I am having extreme anxiety over the fact that I will be missing a very important year in their education.

One thing I am NOT missing is my faith in the Lord. I know that with all I feel like I am missing right now he has got me. He will carry me on forever and ever. He will fill me with the power of the Holy Spirit to accomplish all these things. He will provide a peace to my very unbalanced life!

My Four Kids

This journey. This path. This life I (we) have been given. It has had its many ups and downs as I am sure it will continue to do. My husband and I have had our fair share this past week(end). We don't exactly lead the least stressful life. I mean it is probably one of the most complicated lives you could lead. We do it because we were called to lead this life. We do it because we know its right, but this weekend it all came flooding in. We have so much on our plates and its hard to just take one bite at a time. I feel as though I have to shovel. There is no chewing and swallowing. Its just one bit after another, faster and faster.

My husband is a business adventurer. Any new business he can find to take on, he will especially if he has to provide very minimal up front costs. What sometimes he doesn't realize is that when he takes on one of this business adventures, it turns into one more job for me. You see, he works a job in a shop 40+ hours a week. That doesn't include travel time. So I get to take on the other jobs that it takes to run everything else.

As if a mom of 4 children isn't enough. You see our oldest has some special needs. She is a more high demands child. She has come a long way in regards to her behavior and speech, but she still is more high demand than our other children. Then there is our son who is just so easy going and laid back. He is such a boy and his daddy teaches him way more then he should know about recycling and how to run a business. Then there is my feisty, energetic, do it myself, very independent two year old. She keeps me on my feet constantly. She is always into something else. Always on the go and has the vocabulary of a ten year old. Then there is our sweet baby who has limits on her vision. She requires all different sorts of therapy. She requires me to therapy even when the therapist are not here. She requires more care. I have always dreamed since I was little I would be a mom. That was my number one dream. I was going to be a mom and a teacher. Although I do not get to teach in a school I do get to be a teacher. A teacher to my kids. We get to learn about anything they want to learn about because my husbands business adventures allow me to stay home. This is a life I would never change. I would add ten more kids to the mix if I was able to carry more children. I love raising my kids. I love watching them grow. I love teaching them to read, to do math problems. I love being their mother. Butterfly girl has changed the way I parent. She has taught me that not everything is so black and white. My children do no learn just by reading and writing things down. It truly takes all your senses to learn. Without one sense and your whole body is thrown off. It has been an adventure. It has been the path of a lifetime and I am sure as this path continues I will no be disappointed.

My four children keep me busy. They stretch me to my limits on a daily basis. We follow a mostly strict schedule, not only for their benefit, but for my own. This is the only way I ensure that I get other business work done, but also housework and time with each of them. The day to do things that need to be done to raise four children is enough to keep any one marginally busy, but that's not enough in this house. This house we have to go beyond that. We need to go farther into the business. Tomorrow I will tell you all how we got started on one of my husbands business adventures.

In all this business I have had to learn to slow down. To read my bible. To pray. To spend some time with my Heavenly Father. It has been the most amazing times of my life. I can really feel the Lord talking to my heart when I spend that time with him. It is amazing. The kids spend some quite time with their bibles in the morning. Even our two year old opens her picture bible and flips through the pages. Its all a start of having that personal relationship with our Lord. They watch me take that time to spend in prayer and reading so they do the same thing. Its amazing. I love seeing our children on fire for God.

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. 

MIA

I have been a tad MIA the past week. I am trying to figure out this new life we have called summer. I am in a bit over my head with all the endeavours my husband and I have felt called to be a part of. We also have added another member to the family for the summer. A daughter of a friends has come to help me out for the summer. It's been wonderful having her here. We are all just trying to figure out how to run our summer. Not to mention I am still laid up with my knee. I mean I can use the crutches, but its not as easy. Oh, and my husband got injured at work. It was pretty scary.

We have a set schedule. We have certain times to do certain things. We have an art day, two outdoor days where I plan structured activities for the kiddlets, and a baking day. We also go to town (we live a little ways away) once a week. My problem is trying to figure out how to go about fitting in household chores, the office work for three businesses, blogging, children, husband, sewing, working for our not for profit, and everything else I do. I want this summer to be about making memories with our kids. I want this summer to be about balance. I am however struggling to find this said balance.

On top of all this I am having anxiety about tomorrows appointment. Butterfly Girl goes for a second opinion on her vision tomorrow. This is not because we do not trust the eye doctor we see now, but I feel its always better to get a second opinion. Especially when we are talking about the lack of vision in one of my children. I just want to make sure that there is nothing that can be done about this. Maybe another doctor has another idea. I would never be able to live with myself if I didn't get a second opinion. I just want what is best for my baby.

Today is one of those days that I am having a hard time with her blindness. Today was a bad day. Today she only saw for about thirty minutes all day. This pains me so much. It hurts my heart to know all she is missing out on. It pains me that her lack of vision is putting her so far behind other babies her age as far as development goes.

I need to remind myself that the Lord has a plan for us. The Lord has set us upon this journey for a reason. I need to hold comfort in him. I need to hold comfort in my faith. I need to know that I am not forgotten. Butterfly Girl has a great path set for her. If we just continue to follow the Lord's calling we will be blessed. We have been blessed.

Pray with  me as we go for this second opinion tomorrow. Pray for my peace and comfort as my husband can not go. He has a meeting. Pray that nothing new will come up.  



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.