Monday, November 26, 2012

Negativity BE GONE!

We are a home schooling family. We are around each other 24 hours a day 7 days a week with little breaks from each other. I would not change this for the world! I love every day. However, if negativity bites one person it spreads faster then the flu at our house! It goes from one to the next and until our house no longer looks like the Kingdom of the Lord.

Despite the thanksgiving season, negativity had reared its ugly head. The long days of festivities, non-normal sleeping arrangements caused by a sleep over so mommy and daddy could go Black Friday shopping, and being out of routine for so long had taken its toll. My children were out of control and so was I. It was ugly. Very, very ugly.

This morning I decided to visit this ugly, devil given aroma in our house during my devotions. The Lord certainly couldn't be happy with our attitudes. As parents my husband and I decided that we would handle this negative attitude on our own forgetting to lean on the Lord. Forgetting that with out Christ we certainly wouldn't be able to survive this round of the devil. We were in the fighting ring getting badly bruised and bloody. Everyone in our family was losing. While I was spending some time in prayer asking the Lord what needed to change I was convicted. A hard conviction at that.

It was me. I was bitten by the negative bug. It was my heart that needed changing. It was me that needed to refocus. It's been a tough year for us. Butterfly girl's diagnosis, possible job loss for my husband, our well breaking, a fridge needing replacing, and so much more. It's been hard to stay joyful through it all. I finally fell to the negativity bug. The negativity blinded me to the so many things I have to be joyful for and I lost. I was at the bottom. I was infecting my kids. I was causing their bad attitudes. I wasn't allowing them to see the joy in every day life because I had lost sight.

I took my Jesus pill this morning. He is the only medicine that will help me rid this evil negativity disease. He is my joy! He is the reason I get up in the morning. He is perfect. He is unwavering. He is all knowing. I need to remember to take my Jesus pill every morning, every hour sometimes, every minute sometimes. I am seeing a whole new light this evening.

And to mention the fact that my husband's job is safe is even more wonderful! The Lord provided and I feel extremely foolish for worrying.

Be His,
Dany

Tuesday, November 13, 2012

Full of Thankfulness

So once again I got back logged on blogging. I really need to set up an hour or so and get some posts scheduled to post so that when I am away you all still have something to read.

Since I am behind on my days of thanks I am going to try to my best to make this blog full of thankfulness and catch up.

Day 6: Thankful this day for the ability to have a voice in the election procress. So thankful for the free country we live in.

Day 7: So incredibly thankful to a church who welcomed our broken selves with open arms, have allow us to serve middle schoolers, and have been so super supportive. Collide has been an amazing way to use our gifts and abilities to be the hands and feet of Christ. I'll say it's again, as crazy as I though Kelly was for roping me into hanging out with middle schoolers I'm having a blast!

Day 8: Thankful for the flexibility of homeschooling. The fact that we can school morning, noon, or night. It is amazing what we can learn and when.

Day 9: Thankful for the laughter that I can share with my children and with my husband.

Day 10: Thankful for the ability to show case my work at a craft show. Thankful for customers who continue to buy product through me. This is a great way for me to help support my family without spending 40 hours a week away from them.

Day 11: Thankful  for the relationships my kids are making with each other. Being brought closer by our homeschooling adventure. Turning out to be each others best friends, biggest supporters, and sticking up for each other. Myla asked Parker for a hug and he gave one gladly. Ondrea and Parker played chase around the living room and giggled so hard when the other was caught. And the love they have for their baby sister is incredible.

Day 12: Thankful for the ability to hang out with my sister in law and other women. I am blessed to have the chance to be more then just a wife and mom. It is so incredibly hard to find time for myself. I am the mother of 4. One of which is special needs and requires me more than the others. I am a wife that needs to fill the needs of my husband. I am a homemaker of a house that doesn't clean itself, of clothes that do not wash themselves, and of beds that need making. I am a school teacher, teaching my children the ways of the world and the knowledge that they need to succeed beyond measure. I am a business owner. The demands of a creating new products, creating inventory, and doing all the books leaves me staying up into all hours of the night. When I get a chance to hang out with other women it makes me feel refreshed and like an individual again.

Day 13: Today I am thankful for praying friends and family. The fact that I am surrounded by people willing to pray for me and my family is amazing. I once again called on them this afternoon as we wait for some either unsettling or positive news. We were not provided with the answer we were hoping for so we still wait. As we wait my family and friends will continue to pray for us.

Monday, November 5, 2012

Catch up and Tears

I want to play catch up on my Days of Thanks in November. I also want to up date on Butterfly Girl since she has a doctor appointment today.

Let's start with Days of Thanks:

November 2, 2012: I am thankful so much for my Monkey Girl. I was able to spend the morning with her after I got done working. She needed to go to the doctor for her 2.5 year check up. The doctor was impressed with her vocabulary and just how smart she truly is. Spending this alone time with her allowed me to get some snuggles in. I was also able to see just how funny she can be. She is my super active, never stopping child. She is makes my heart melt and she truly is a smarty. The doctor said she was functioning at the age of a 5 year old. I am so thankful that the Lord gave her to us to grow in his path.

November 3, 2012: Thankful for the ability to express my faith in God. Thankful that I can teach my children the truth of the Word of God. Thankful that we have the ability to go to church and grow with fellow believers in our Lord.

November 4, 2012: Thankful for my in-laws who are so incredibly supportive and love their Grandchildren to pieces. They are always there when we need a sitter, or pizza, or have a question, whether sewing or building.

November 5, 2012: Today I am extremely thankful for my husband. He is my best friend/soul mate/and love of my life. He is an extremely amazing father for my children. After such a tough day with the appointment for Butterfly Girl he is the voice that tells me it will be okay. He is the voice that tells me not matter what the doctors say we will make it through. The voice that says she is perfect. He is truly my strength and I thank the Lord for him!

Now on to the dreaded doctor appointment. The good news is that Butterfly Girl is growing like a weed. She is the only one of my children to hit 20 pounds by one weighing in at 20 pounds 5 ounces. She is also a long little bug. She measured at 28.5 inches long. She will be like her uncle and grandma! The bad news... Her left side of her body is still about 30 percent weaker than the right side of her body. We need to up the PT in order to try to strengthen this. Then we moved in to the next issue. Butterfly Girl doesn't chew. She sucks and then swallows. This means that we need to start feeding therapy with the OT and then possibly call in someone more extensive depending on how the first few session go. After that we then looked at her vision. The doctor was less then impressed that we have already had to have her prescription changed. She was also less than thrilled that it was so drastic. We went from a +1 and +3 in her eyes to +6 in each eye. This is not how we would like things to progress, but it is what life is. We will have an MRI repeated right after Christmas to see if their is any change in her brain that would explain why her vision would be declining so quickly. After her vision we moved on to her lack of words. We discussed how quite my sweet girl is and that she is still at a 3 month level as far as babbling and not saying any distinct words. We will start Speech Therapy once a month for the next 3 months and then will move to 2 times a week.

I have been in tears on and off all day. The doctors are still not sure why she is the way she is. They currently have no medical explanation. It is hard. It hurts. It bites. I want answers so bad. I want to know what is wrong with my baby girl. I have cried because I feel like I have failed her. I feel as though I do not do enough to help her see. I feel as though I am not equipped enough to be her mom. I hurt that she will go through life struggling. Ugh, it sucks. I wish I could just make my baby better. Please pray as Kelly and I go through the next few days adjusting to the news we received today. It always seems to take us a few days to get back into feeling okay about Butterfly Girl's diagnosis. We will each shed tears. We will hold each other and hold each of our children. We will hold on to our faith. We will hold on to the prayers of those who lift us during these hard times.

Again I am remember my children's bible verse they need to be memorizing. Romans 8:28 "And we know that in all things God works for the good of those who love him, who have been called according to his purpose." If we continue to grow our faith and those of children and love our Lord. If we continue to do his will and life as we have been called to his purpose we know that God will work for our good. We will have our time where we will feel like we will be on top. Right now its day by day following the plan that is set for our life which includes raising a daughter that can not see.

Thursday, November 1, 2012

Be Thankful November

As many bloggers, facebookers, and more I will be doing thankful posts each day of November. I think it is so important that we remember all the reasons we have to be thankful. I also like getting the perspective of my children. Each one of them enjoys the simple things of life that I often take for granted now that I have become an adult. We have so many things to be thankful for. Each day I would like to take one or two things that I am thankful for and share them with you. I will also be sharing the thoughts of my children.

November 1, 2012. I am so very thankful for heat. It is starting to get cold here in Michigan and a house that provides heat is something I am so incredibly thankful for. I know that there are many less privileged and are cold tonight. I am also so thankful for each one of the family members that sleep under the same roof as myself. Each one has so many gifts and abilities that make this family work so well.

Each of my children also had something to share. From being thankful for daddy, to being thankful for mommy. It was our oldest that had the most interesting thing to be thankful for. She was thankful for paper. Paper, I thought, how interesting. I then asked her to explain. She told me that without paper she wouldn't be able to draw pictures, she wouldn't be able to write notes, and she wouldn't be able to tell people she loved them if they lived far away. She explained to my how paper was so important in the world because it is how we communicate. That's right, my 6 year old told me we communicate with paper. I was so proud! I was in shock when she said it. She is so smart. She also realized that without paper we would not be able to read books. She told me how she loved learning to read and without the paper in her books she would not be able to do that. I love this. I love that she has such a great insight to life. I love how she thought of something outside of the normal family, friends, my house answers. How often do we take paper for granted. In a world of technology we forget how important paper can be in the form of communication. We forget that some of the greatest books ever written were printed on paper. How often do we just grab a piece of paper and just scratch a note. I know that I take paper for granted. I just write. I don't think about what I am writing on. It was such a refreshing answer. A great reminder. I to am thankful for paper. I love being able to write the kids a little note telling them how much I love them. I am heading to do that right now. I wont be home when they wake up in the morning because I need to go do some work. I will put a note by each of their breakfast chairs. Tell them how much I love them and care about them. Thank you sweet Princess Girl for the new perspective on life and what to be thankful for!
                                                                                                                                                                                                                                

Trick or Treat? Treat or Trick?

Happy Halloween!

As I was thinking about my blog post for the day I found it so fitting that the saying "Trick or Treat" seemed to fit so well. You see, I have a love/hate relationship with Butterfly Girl's therapy. I know she needs it. I know that its good for her. I know that it will help her grow stronger and stronger. I know all these things. I just hate what they always have to say. See it goes like this; They tell me all the good or "treat" things that our sweet baby girl does. Today for example, they liked that when she was seeing it was across all lines of vision. They also liked that she when she wasn't seeing if she dropped a toy, she knew the general area that she dropped it and could find her way back to it. The liked that she was now banging things together and making more eye contact during those seeing times. They had so many good things to say. They commented on how much work I do advocating for her. They remarked on how well we have daughter her to keep her glasses on. They couldn't say enough good things. My feelings were overwhelmed with joy. I was extremely happy.

Then came the bad or "trick" part of our session. I was reminded again that my daughter was behind. That her blindness and low vision has delayed her skills. I was also told that the fact her prescription has changed so much already that it is a cause for concern. I was told that she should be doing more talking. That she needs to be making even more eye contact during those times she is seeing. That we still need to work on her find motor skills. We also need to help her starting feeling her way around our house. How dare we not be doing that already!

Once again we were handed a list of activities to do with Butterfly Girl so that she can hopefully get caught up to speed. We have more appointments to schedule. More therapists to see. You can't be to busy now! I cried. I will admit I cried a lot. I just want this perfect, cute, happy baby! I just want everything to go excellent for once. I wish I could have just ONE appointment with our sweet baby girl and it would just go swimmingly. I wish I could stop getting the "Trick or Treats" at each appointment.

On another note, we had a fantastic Halloween. We hope that you did also. We headed downtown got lots of candy. I had a bumble bee(butterfly girl), a horsey, a dragon, and a Princess. It was fun. Our kids then got to go hang out their adopted Grandpa and Grandma and had an extreme blast! I then joined the rest of the leaders for our Collide black out event which was AMAZING!! So glad that we could have a great night. We also hope you had a safe, fun filled event.

Wednesday, October 31, 2012

We All Have a Longing

As I sit here listening to the news and the events of Super storm Sandy, I am feeling mighty blessed. Although Michigan has had high winds and huge waves, we have not been impacted in such a way that those on the East Coast have been. Our thoughts and prayers are with those who are without power, flooded, and in so much pain and destruction.

Our thoughts here today? Well I have a picture hanging on my fridge of a yellow bus. That's right. We have decided to be a home school family, but that does not mean our children do not sometimes challenge our choice. They have a voice, an opinion, and desires. They all enjoy school. They have enjoyed the things that they probably wouldn't have been able to experience. We get to have pajama days. We get to do math while baking cookies. We get to go on field trips. We sometimes don't even start school until after lunch and work until later in the evening, allowing us to spend the morning snuggling and watching movies. This doesn't mean that our children don't wonder what being in school would be like. This doesn't mean that they do not wonder what riding a bus would be like. Today that was the case. Our oldest child was begging me to send her to school, not because she wanted to try school, but because she wanted to ride a big yellow school bus. We had a conversation about why that would be so great. We had a talk about why we home school. Although she knows why we home school and that she will not be riding a school bus, she still longs.

I learned a very important lesson during this discussion we had. We all long for something. There are all things we wish could be different. This is not bad. Sometimes longing is good. It gives us something to strive for. My question is; "Do pray about our longing?" "Do we seek wise counsel?" Just as my daughter had come to me asking about why we home school and why she couldn't ride that big yellow school bus she so longed to ride, do I do the same thing? I want to be more like her. I want to seek wise counsel more often. As adults we so often just do the things we want. We do what we think is best without really praying or thinking. We don't ask for others opinions. I want to seek the bible for answers. I want to seek Godly, wise people who may be able to weigh in.

I challenge you. If you have a longing. Please just don't jump on it. Pray, Look at your bible, Seek wise counsel. Then if it is in the plan God has for your life, chase that longing to the ends of the earth.

Sunday, October 28, 2012

Ahh Guilt, How do I Make You Disappear

I must say that I love my life. I wouldn't change it for anything in the world, but I am a mom, wife, friend, daughter, and so much more. I think we are women always tend to carry guilt in some for or another. Some of us may carry more then others. Some of us may indulge in our guilt's and some of us choose to rise above them. Some of us carry guilt for a lifetime. Some of us change the level of guilt we feel each day. We feel guilty if we give our kids to much candy. If we don't buy them the right clothes. We feel guilty if we can't be there for our parents. We feel guilty if we do something to disappoint our parents even as adults. We feel guilty if we can't be there to help a friend when they need us. We feel guilty if we fight with a friend. We feel guilty if our husbands needs are met. We feel guilty if the house isn't tidy, if laundry isn't done. We as women just tend to feel guilty.

Guilt is such an ugly thing. It hurts, It is heavy. Guilt takes different processes to get through. Some guilt is easy. Sometimes you can just talk to a friend and grab a different prospective. Sometimes it takes a day and it's done. Some guilt takes a longer process. Sometimes you can give into guilt and sometimes you just need to work through it. I struggle with different forms every day. This mornings guilt was different.

Sunday mornings I drop the big kids off at Sunday school and and then Kelly, Monkey Girl, Butterfly Girl and I head to Meijer to walk around and burn off some time before we need to be back at church. Usually we meet at Meijer because we take two cars. Monkey Girl and Him stay home a while longer because they do not to be at church right away. This week was different and I am pretty sure it is what trigger this guilty feeling. We met at church this morning. We all piled into one car and headed to the gas station. As I was stepping out of the truck my thought was this "This is how life would be if I would have waited for Kelly and we had gotten married. We would only have two kids. We wouldn't have a blended family. Maybe we wouldn't be finically strapped. Maybe I would be able to split my time between them all better." It was a horrible feeling. I LOVE all my children. I love each one of them and would never give any one of them up. They each have a special place in my heart. They are each special. Kelly treats each of them like they are his own. We are a family. We are a complete unit. My heart immediately sank into the pit of my stomach. I was feeling ashamed and guilty. I had just hurt my own feelings.

I wouldn't change my life for anything in the world! It is perfect. It is exactly how God had planned it. So why, Why then would I feel guilty. Why if my life is the way I had always pictured am I feeling so incredibly guilty. My answer is only that I am HUMAN. Not only am I human, but we also live in a sinful world. Its part of our nature to feel some extent of guilt. So what do I do? How do I get past?

I had to acknowledge that I was feeling guilty. I cried. I felt bad. I prayed. I prayed a lot! I read my bible. I tried to figure out what God was telling me. I just sat quietly and listened. I feel as though it's not bad to look at life as it might have been if I had made different choices. I don't even think that there has to be guilty thoughts connected to thinking about the what ifs of life. They happen sometimes though. It happened to me today. I am human. I wonder about what ifs. I think about life. I feel guilt sometimes. It's hard to be real, to blog about real feelings. You never know how some one might take it. I want to be real. I want to share so someone may say "yeah I know how that feels". I know the Lord has a plan for my life. He has a plan for me being able to be real. He has a plan for the words I type.

Wednesday, October 24, 2012

Life's Journey

Life's Journey is this crazy, unpredictable, sometimes amazing, sometimes crappy road that once you think you have it figured out it takes another unexpected turn. When I started this blog in the wake a very difficult time in life I dreamed of keeping it going. About growing it to something more then keeping those people that we do not get to speak to on a daily basis informed about our sweet Butterfly Girl and how she is doing. I wanted my readers to share a piece of my life with me. I wanted others to feel like they could connect and relate. I wanted other mom's, wife's, daughter's, sister's, and friend's to know that they are not alone in this road so many of us call life. We may not be struggling with exactly the same things or going through the same events, but at the end of the day we can someone relate to each other.

I lost blogging for a while. I took it out of my overly packed schedule and I came to a point the other day that brought me right back to blogging. I realized I blog most importantly for myself. So that years from now I can look back and see my family through a less hectic, busy eye. There are some days that I just strive to make it through an hour of this crazy life we live. So my goal is that if I document what we live I can come back and enjoy those moments a bit more. Or I may be able to come back and heal from the pain I still have from things. I know even today I have read the posts made about my sweet baby girl's vision and it is still very hard, but it is part of the healing process. Blogging is a way for me to feel like I invested in myself and invested in someone else. Maybe one day, someone will stumble across and say, "wow I thought I was alone, but this blogger felt the same way". Maybe that has happened and I don't know. My hope is that someday the blog will be more then just a place I lay my heart, but a source of hope, encouragement, and understanding to someone else.

I blog because I love writing. Ever since I was a young child writing was always my favorite thing to do. In high school I took as many writing classes as I could. Always dreaming of becoming an author was fun, but it always took second place to becoming a wife and a mother. Blogging is kind of like being an author in a way. I get to publish what I want people to read. I get to share my work with others and that is a satisfying thing. I love what I am doing and I am so glad to becoming back!

I blog because I want to keep all of you up to date on the latest findings on Butterfly Girl's diagnosis. Although I have been lacking in that department it will be a commitment of mine to try to keep up. The latest news with our sweet girl is that she sees twenty percent of her day. Her CVI is something that she will live and will learn to adjust to. What got us down most recently was our last trip to the eye doctor. While Butterfly Girl can see twenty percent of the day the vision she does have is very poor. She has a pretty strong prescription in her lens. While this might not concern the average person it concerns us. The reason this is cause for concern is because the vision she does have will slowly get worse, making the prescription in her lens stronger and stronger. This will eventually get to the point were her vision can no longer be corrected. Our baby girl will then officially be blind forever. This breaks our hearts. This makes us so incredibly said. This makes us hurt so deeply. We do have a God who is in the business of working miracles and we know they can happen! We believe that if it is HIS will he will heal our sweet girl. She turned 1 and despite the rocky first year we had an amazing celebration with family and friends.

I love blogging. I am glad to be back. I hope all of you will continue to read. I hope you will all share if you find something that may be an encouragement or source of hope to someone else.

I leave you with the verse my children are memorizing for church. Romans 8:28 "And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them."

How amazing is that! If we live life in accordance to God's calling he will work everything together for good for us, his people. That doesn't mean that God isn't going to let us go through hard times such as Butterfly Girl's diagnosis. That doesn't mean that bad things are not going to happen to us because they will, but when the time is right, when HIS time is right, ALL things will work together for the good of HIS people. I am so excited to know the truth of the Lord.

Thursday, August 23, 2012

Homeschooling Adventure

We are homeschooling. This was a very tough choice for us to make. My husband and I were 100% ready to send out children to the public school this fall. Although we had prior conversations as to homeschooling being the calling for our family we were choosing to ignore that this fall. After we found out about Butterfly Girl and her diagnosis, homeschooling just seemed to difficult. We knew that we would be spending a lot of time at the doctor, a lot of time doing therapy, and that Butterfly Girl would need a lot of our attention. Public school was the easy way to do things. Send our oldest two to school and help out Butterfly Girl as much as possible. Then something changed. We went on a weekend long family camping trip. On this trip my husband and I got to talking. We discussed our prior plans to home school. We discussed our fears with going along with public school. Most importantly we discussed our calling from our Heavenly Father. We felt as though we were being convicted by God to rethink about our homeschooling plans. It was brought to the for front of our minds that God was not going to call us to home school and then not help us succeed. What he brings us to he will help us through. We truly believe that we have been called to home school. We know there will be trials and tribulations. We know that some days will be better then others. It does bring a great peace among our house knowing that we are following the path God has created for us.

Our homeschooling adventure will be starting in 12 days. We will be starting our schooling year along with most of the other schools here in Michigan. I am excited to get started and I think I am mostly prepared. It will be a challenge I am sure. Our oldest started out her life with some challenges and we behind in speech and motor developments. Now that she is on track we still have Butterfly Girl that is behind. I am sure that this life of homeschooling and managing a special needs child will be difficult, but it is one God has brought us. I am excited to show you some pictures of what our homeschooling area looks like.

Here is our homeschooling wall. The kiddlets will sit at the table in the bottom of the pictures.
 
Below are some books that we are going to use with Monkey Girl, but also with the bigger kiddlets. They have basic shapes, colors, numbers, letters and the like. They also have the Spanish words for everything, along with a pronunciation guide. I am super excited about getting the kids a little Spanish.
 
Here is a picture of what each child gets to keep in their drawers. (below will be a picture of the drawers)
 
Here is a picture of our drawers. I'm pretty excited that everything is all organized and such.
 
 
 
This gives you a wee bit of an idea on how I have things set up. Later I will give you an idea on what we are using curriculum wise and what our supplies look like. I am excited to be able to share our journey with all of you. I can not wait to share in my joys and trails. My lows and my highs.
 
Your prayers are greatly accepted as we travel this path. I know that we are doing the right thing by following the Lords path.
 
Thanks for following our journey.

Wednesday, August 22, 2012

Wednesday's

Wednesdays are the hardest day of the week. Wednesday's are the day when so much get done, yet I feel like I have accomplished nothing.

You see, we run a not for profit company called Sole Aid. (check them out here: www.soleaid.org) One Wednesday's we do our shoe route. We go to all the local businesses that are collection sights and pick up what they have collected for the week. We leave our house to start the day at 10am. Because we live 15-20 minutes away from any remote civilization (town in this case), we don't get to start our route right away. Also because Wednesday is pay day for the hubs, it usually means a trip to the gas station for some gasoline on the way. We typically don't even touch a shoe until 10:30 am. In the middle of the shoe route we stop by the library. We drop off the books from the week before and get all new ones. The kids love this because then they can read (look) at something new in the car while we finish our route. We then finish up our route. After our route is done we head for the store to pick up the weeks groceries. Once again Wednesday is pay day and by this time each week our cupboards are bare and the kids are complaining there is nothing to eat. So I file all the kids into the store, get what we need, and then we head home. We usually do not arrive home until 1pm. We only arrive before 1pm if we do not go visit my mom and my brothers kids. Today we did just that. We went with them to the farmers market. This means we didn't get home until 4pm. By this time we needed to get the car unloaded, things put away, and about starting dinner.

So my point is this. A lot of stuff gets done because we get groceries, do our shoe route, and go to the library. A lot of stuff also doesn't get done. This such as laundry and other house work related things. I can only imagine Wednesday's will be that much harder when we add schooling into the mix.

By the way, only 13 days until we start officially here at the Rus Academy of Family learning. We are super excited. I will have to remember to take pictures of all our supplies and and little learning area and post pictures!

Tuesday, August 21, 2012

I statements

I really need to start using "I" statements when talking to people, even family. We were at a wedding this weekend, kid free, and we still could not escape talk of Butterfly Girl and her disabilities. It was very frustrating as is every conversation is about her.

See what people don't seem to understand is that we have been to three medical professionals, we see four therapists on a weekly to monthly basis. We have been told the same thing by all of these professional who are working with our sweet girl. Yet people can not seem to fathom her condition. They still say that we must be wrong. The claim that she can see, they claim that we, her parents, are wrong. "She looks at me," they say. How frustrating. I then come on the attack. I say, "You just don't understand. You never will. Unless you spend any amount of time with her you will not truly get what we go through." This in turns make people upset. I am attacking them for their opinion, for their voice, and they do not care for that. I need to change how I react.

From now on I need to start using "I" statements. Things such as "I feel like a bad parent when you think she can see, but medical professionals are saying differently." "I feel hurt when you think we are not being truthful about Butterfly Girl's condition." I know I need to come up with lots more. I am going to try my best to use these types of statements when talking to people. Even family because it is family I want to attack the most when they make such crazy statements.

I think that this new way of addressing people will be great for everyone involved.

Monday, August 20, 2012

Long List, No Answer

Butterfly Girl had her appointment at the Neurodevelopment center. It was hopeless. It left us more frustrated and confused then when we went in. We were given two very long lists. One of these lists were all of the things Butterfly girl was delayed on. Everything that she didn't quite measure up when compared to other babies her age. The second list was all of the possibilities of things that could be wrong. All the diagnosis that she could eventually have. The one thing we still lacked was clarity. We lacked an answer as to why our baby girl is the way she is. It once again left me frustrated beyond belief. Grieving for the life my baby has to life. The unanswered questions. Praying the Lord will shed some light upon this situation soon. I trust and believe that it is all in his timing and that he has the answers. He will reveal them at his time.

Tuesday, August 7, 2012

To Do Lists

My to do lists are super long the past few days. For me this is a coping technigue. If I have a list as long as the Mississippi River I will never have time to think about Butterfly Girl's up coming appointment. I have always been a bit OCD and have never gone a day without a list, but some days are better for me the others. For the most part I stick to my Daily 15 list. Yes, I have things that I do every day and then fill in whatever else is left with other things until I hit 15 things to do for the day. It keeps my house running smooth, laundry alwasy done, dishes out of the sink, and the house always partial clean. I only say partially clean because I am the mother of four small children in which the house will never be perfectly spotless. Today is different, the list is never ending. I wish I could just enjoy the days leading up to this appointment, but it brings so much anxiety. Instead I fill the day with lots of things to do. Don't for a minute think that I am wasting my time doing all these things and not spending time with my kids. Not true. I just have planned fun things to do with them instead of just enjoying where the moments take us. My kids like the planned activities and it helps me keep the time busy. Oh and not to mention the house is super clean. To do lists are amazing. Lists in general are lives tool for keeping things together. For me at least. If you think I am one crazy momma you may just be right! haha... That is quite alright with me. I take pride in my crazy!

Monday, August 6, 2012

Reflection

This morning I was awaken to MUCH cooler temperatures and a gentle breeze. Shortly after that perfect awaking my mind started racing. It hit me like a ton of bricks that we had just spent hundreds of dollars on a new refrigerator (ours was 62 degrees when we woke up yesterday morning) and that the appointment that I have been dreading for Butterfly Girl is coming up at the end of the week.
I was not about to let the anxiety keep me down. So I started with what I do best, a list. I listed everything that I would like to see get done today and started at it. Keeping myself and my brain busy with what needed to be accomplished today. Soon that didn't help. Part of what needed to be done today was balancing the checkbook, paying bills, and then like. Doing those jobs gives me even more anxiety. Then I stopped. I took a minute. Then two things came to mind.

 1. "For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future."  Jeremiah 29:11.

This is something I so desperately need to keep my focus on when it comes to Butterfly Girl. I should have it be my focus all the time, I know, but I need to even more so when it comes to her. Her appointments are so draining sometimes. I have a hard time remembering that even in my pain he has a plan. Even in the time of uncertainty in life HE has a plan for my baby. This plan involves CVI, this plan involves developmental delays, this plan involves lots of extra care and work. This is HIS plan for my sweet child. HIS plan for my perfect angel. It is hard, but needs to be done. I have to remind myself of HIS plan for our life. I also have to remember that his plans for our life our his plans and that although we may want to change them we are disobeying when we do.  God is perfect!
2. The lyrics from a song of Chris Tomlin's
Give thanks to the Lord
Our God and King
His love endures forever
For He is good, He is above all things
His love endures forever
Sing praise, sing praise
With a mighty hand
and outstretched arm
His love endures forever
For the life that's been reborn
His love endures forever
Sing praise, sing praise
Sing praise, sing praise

Yeah
Forever God is faithful
Forever God is strong
Forever God is with us
Forever
Forever

From the rising to the setting sun
His love endures forever
By the grace of God
We will carry on
His love endures forever
Sing praise, sing praise
Sing praise, sing praise
Yeah
Forever God is faithful
Forever God is strong
Forever God is with us
Forever
Forever
Forever God is faithful
Forever God is strong
Forever God is with us
Forever
Forever
Forever

His love endures forever
His love endures forever
His love endures forever
Forever
Sing praise, sing praise
Sing praise, sing praise
Yeah
Forever you are faithful
Forever you are strong
Forever you are with us
Forever
And ever
Yeah

Forever you are faithful
Forever you are strong
Forever you are with us
Forever
Forever
You are God.....
Forever
And ever and ever ...
By this song I am reminded that His love endures forever. It reminds me that he is faithful and strong. He is the perfect person to entrust this journey to. He has set this journey before us even before Butterfly Girl was born. I am also reminded that despite the money we had to spend on the fridge, or the TV, or anything else for that matter that HE is faithful.
My husband and I were talking about how true God is to us because every time we get extra money something breaks. And as much as we would love to save that money for fun, God has allowed for things in our house to stay working long enough for us to get extra money. He has never allowed anything to break when we felt like we would have had to make the choice to cut other things in order to buy what was broken. That is a huge answer to prayers. He has the perfect plan in spite of us not always thinking its perfect.
As I continued to give God my worries and anxiety I felt the day get better and better. I have peace of mind knowing that God has plans for our life and that he is faithful. I will still have worries about Butterfly Girl's appointment. I will still sometimes wish we had the extra money still, but that will come and go like the ocean waves.
My list keeps me going, but it is no longer what is driving me today to keep my mind off of things. God has taken care of that. Now I can work on my list without my distracting brain trying to make me think about things to come. What a journey we are on. What a path we have been given. It is surly lit by the light of the Lord.

Wednesday, August 1, 2012

August 1, 2012

Today is a day in history. Somethings happened at our house that I never thought would. You see we lead a simple life for the most part. Our kids don't have all the techie gadgets, we barely watch TV, and we like to keep things simple. We garden, compost, make our own laundry soap and more. Some people call us cheap, crunchy, and maybe even crazy. Our children do not know how to work an x-box, the Wii, or even the computer very well. So why is today such an important day in the Rus Family history?

We bought a 32 inch LED TV!! We topped off our purchase with a TV antenna. This is big stuff for our little family. First of all we had an old analog 19 inch TV that finally died. It just stopped working all together. The old TV was probably 10 + years old. I never thought we would see a new TV and I really was shocked that it was a BIGGER TV. We still refuse to pay for cable or satellite so we just bought an antenna. We set this all up after the kiddlets were in bed so they will be shocked in the morning. They will be glad that we can start watching Bible Man and Gigi again.

So today is a day in history. May not be a big deal to some people, but it is a big deal here.

Tuesday, July 31, 2012

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!

Tuesday, July 17, 2012

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! 

Tuesday, July 10, 2012

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!

Monday, June 25, 2012

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.

Wednesday, June 20, 2012

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. 

Monday, June 18, 2012

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.  



Monday, June 11, 2012

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.


Wednesday, June 6, 2012

Break Down

I have been doing so well mentally and emotionally. I have been staying on top of what I know is important. My relationship with Jesus, with my husband, and then my children. I know that this makes me happy and less stressed. Well today I broke down. I just couldn't keep up the positive, non complaining, up beat attitude that I have been feeling lately.
You see. I like my house spotless. I like everything done in a certain order at a certain time in a certain way. I am very OCD. I am very type A personality and as funny as it sounds I was looking forward to my doctors appointment this morning. We were supposed to be scheduling surgery which in turn would allow me to use my knee that very same day as long as I could tolerate it. As I sat there waiting for the doctor he came in and said "I have good news and bad news" I immediately thought that it meant my tear was worse then he had first imagined and that it was going to take a longer recovery, but maybe he could do it yet today. I was very wrong. He proceeded to tell me that the bump her felt in my knee was not a meniscus tear. In face it was the muscle that holds the knee in place. He told me that I had dislocated my knee, that muscle was way to loose and was getting "bunched up". So now what I thought? How do we fix this? Well he told me and I didn't like what I was hearing. He had to re-dislocate my knee so that it could be in the correct healing position. Then I would be in this knee immobilizer and on crutches for the

At first I was handling this okay, but the day slowly drug on. Sitting in the car is hard. Going to the bath room is hard, and I cant just stand on it. I have to wear this thing twenty four hours a day seven days a week only to take it off to shower. This does not make me so happy. I hate asking for help. I hate not being able to do all my type A personality things. I just hate being laid up in general. I am always doing something. I always have a running list of things that need to be done.

This realization that I am going to need to count on others. That I am not going to get much on my to do list done. That I will be stuck in this thing for four weeks. Add that with the pain I am experiencing. Add that in with not a ton of sleep the past few nights and I lost it. Oh and my pop spilled every where. It was not a good thing.

I am telling myself that even though I want to complain every second of every day. Even though I want to just cry and throw myself a pity party doesn't make things better. God is in control! He has me taken care of. This was in his plan. This is his way of showing me something and I need to listen. I need to stay focused on his plan for me and for our family. I need to focus on how much he has given me. I have four amazing children. The best husband any one could ask for. The ability to write and share our families story.

Please continue to pray with us. Pray that my family can hold out on my sometimes short, sometimes snippy, crabby self while I deal with this inconvenience. Pray that this knee heals quickly. Pray that the next four weeks goes amazingly fast.

Tuesday, June 5, 2012

My Baby Girl

My baby girl is an amazing! She is a huge gift from God! Blindness will not tear our family down! We have a MOVER! Yes you read that right. Our baby girl is crawling, army style that is. It's amazing to watch her move, but so sad when she cries because she has run into an object that she can not see.

Butterfly Girl has what is called CVI, which means that she can see some times and other times she can not. We have noticed that for Butterfly Girl, her vision is not there more then it is. With CVI Butterfly girls vision can change minute by minute and day by day. This is difficult. I so badly want her to see 100% of the time, but that is not what God gave us. God gave us an amazing girl, full of smiles, with eyes that have an amazing hope in them, but can not see.

Butterfly girl is behind developmentally. She still isnt sitting great on her own yet. She is having some feeding difficulty. She doesnt really enteract with toys that she has in her hands. All of these things are due in part to her not being able to see. When I start to feel down about one of these things God goes and gives me the best gift of all. He reminds me of what she can do and then shows me something new!

I am over joyed by the blessing she has been in our life. The road traveled is long and hard, but the Lord rewards those who stay on his path. Please continue to stay with us on this journey. The Lord is guiding us to do great things for him. The Lord is calling our Butterfly Girl to use those beautiful blue eyes and amazing smile to do his good work.

Wednesday, May 30, 2012

Crazy things

Well, this life journey we are on is a crazy one. We never like to keep things dull around here. If it isn't enough that we own two buisness' and that my husband works a full time job on top of the one he owns, we decided to add another. This time we have added a not for profit organization. We are so excited to add Sole Aid to our family. Sole Aid was run by another family that we are friends with. They are having their 10th child and are feeling called in a different direction with ministry. We felt a strong calling to keep this ministry going and so we said YES! We are excited to be the hands and feet of Jesus by being a blessing in Michigan and around the world.

Sole Aid collects shoes and clothes that are the sold to an exporter and then shipped around the world to help those who need lost cost shoes and clothing. The money that Sole Aid makes through the selling of those clothes and shoes goes towards scholarships to help families here in Michigan and to help families around the world through different forms of aid. To find out more about this ministry please visit our website at www.soleaid.org There are a number of different ways to get involved. And if you don't live locally there is a way to give online donations.

To keep life even more interesting Sunday night I decided that it might be a great idea if I injured myself. Okay so that wasn't really the plan, but that is what happened. I hurt my knee while cleaning. I didn't think much of it as the pain slowly went away. While I was cleaning my sewing room later that day I heard one of the kids trying to get the door open to come back inside. It sounded like they couldn't get it so I stood up quickly and turned to go out of the room. As I did that my knee gave out. A few hours later after not being able to move it and being stuck to a chair I figured it would be best to go into the emergency room to have it looked at. The doctor there told me that I had a meniscus tear and that I would need to see an orthopedic doctor. Fast forward to today and that's exactly what I did. I saw the doctor and form the looks of it I have what is called a bucket handle meniscus tear. This will require surgery to fix. So by the end of next week I will be in the surgery room to have it repaired and shall be on the mend after that. I am excited to get this fixed so I can get off these crutches and back to things the way they were.

Please pray with us that my knee heals quickly. Also pray that our new ministry would be a blessing to those that need it most here in Michigan and around the world.

Saturday, May 26, 2012

Haiti and Babies

Two things have been heavily on my mind today. Haiti and babies. Now I am not sure that the two are connected or not. I mean I am sure there are plenty of babies in Haiti, but that is not how I am seeing the two.

You see Haiti has been on the hearts of my family since the earthquake. Then we had a couple who are missionaries in Haiti come to our church. That is when our daughter fell in love. My husband and I were even more captivated by this country then we were when we walked into church that day. We had talked and prayed for Haiti often. We had discussed taking a trip to Haiti. We told ourselves if the opportunity arose we would jump on it. One of us would go. Well then it happened. There was a church mission trip that was happening from our mother church (we go to a church plant). They wanted to know if anyone from our church wanted to go. We both did, but it just isn't that easy. First of all the money was a factor. Then we had three kids that we would need to find child care for. Could they be away from their mom AND dad that long? We prayed about it. Then we made a deal with God. If He gave Kelly a big enough bonus to cover the trips for both of us to go we would go. Little did we know that he would give us double what we needed to cover our trip. It was amazing. Childcare was easy to line up and soon we were off on an adventure like we have never been on before. While we were their we rejoiced with the people who have found aid and happiness after the quake. We also shed tears for those still in turmoil and for the poverty we saw there. It was such a culture shock. It was hot, but the Lord blessed us every day. The kids at the school we were helping rebuild were beyond cute! They were amazing. I think about Haiti often. How I wish to go back. How I wish maybe some day we can adopt from there. I often think of ways I can bless someone in Haiti. Haiti has been coming up again in a lot of ways. Radio, Facebook, and thoughts. I am not sure what God is trying to tell me with the constant reminders, but I am more then willing to wait for him to reveal the whole plan.

Babies. You see I wanted a LARGE family. I wanted lots of children. My body on the other hand choose to not work. It works for growing these sweet bundles of joy, but the after part is what almost killed me. Butterfly girl is the same age now as Monkey girl was back then when we found out we were expecting her. I long to hold a small squishy baby. We made the right choices by not having any more of our own. One day we will hold another squishy we can call ours even though it may not be blood related. We would love to give a sweet baby some snuggles and even a home if it needs one. Maybe one day a little love bug will come home from Haiti.

Friday, May 25, 2012

Birthdays!

So I thought this posted yesterday, but I guess not.


6 years ago today I thought I was going to be having a birthday dinner with my family. Little did I know that my oldest bundle of joy was going to arrive.

I had been having some complications in my pregnancy. The Monday before I went in for a non stress test to see how my baby girl was doing. Although she was passing the non stress test it took a lot of effort to get her to pass. The doctor was concerned. He asked me what I was doing on Wednesday and I said I was going out for dinner with my family to celebrate my birthday. He preceded to tell me I was wrong and that I was going to have a baby. My baby was going to be exactly four weeks earlier then planned. It was okay though, the doctor said babies who come four weeks early usually come out fine. I was do for a c section as little miss thought she would be breech.

So six years ago today I went into the hospital. I waited with many friends and family to have our baby girl. I was told that once I had her, her dad and the doctor would go up to the nursery with her and get her cleaned off and wrapped in a blanket. Then she would go to my room and that is where she, her dad, and the rest of my family would be waiting for me. I was hoping later that day we could celebrate with cake and ice cream. We were going to have tons to celebrate.

I went in for the csection. It was quick and easy. I got to hear a strong healthy cry form my little girl. She was little too. Five pounds and eleven ounces. Everyone waits to hear that first scream to know there baby is fine. I heard it and my heart felt better. She was happy and healthy. We got some pictures taken and then they headed her up three floors to the nursery. They finished sewing me up. I then headed into my worst nightmare. As we went past the nursery window all I saw was a doctor and a bunch of nurses surrounding a little tiny baby. My family was peering in the window. That was funny I thought, why would they be looking at this sick baby when they could hold and google over mine. Not one of them looked me in the eye as we past. When I got to my room it was empty. NO ONE was to be found. Not my baby, nor my family. I started to get worried. My mom came in and told me they would bring me the baby in a minute. More people just came in and smiled. Every moment that passed I got more and more worried.

Finally the doctor. Wait, the doctor, but no baby. This was not going to be good news. My sweet bundle of joy that had given that loud healthy cry right after birth was in distress. She was under an oxygen hood, but it was not doing much. They needed to start some intravenouses supply lines in her belly button. They then need to put her on a CPAP. I couldn't get out of bed right away because my legs were still numb from the pain meds. Finally they did lift me into a wheel chair, wheeled me down, and allowed me to look and touch her. I was sad though because I was not able to hold her. She needed to stay under the oxygen hood until someone gets to us with more experience. They then transported her tiny little body over to Helen DeVos Children's Hospital.

That was that. No birthday cake. No holding my baby. Nothing. I was so sad. I am thankful today however that I can say she is thriving and doing well. I can not believe that she is six today! She is a strong girl. She loves the Lord with all her heart. She believes every dream is achievable as long as you put in the right work.

Bunny Girl.... Mommy loves you to the moon and back. I hope you had the very best birthday!

Tuesday, May 22, 2012

Big Dreams!

Big things are happening here at the Rus household.

 First of all my oldest baby is turning 6! Only a few more days and we can celebrate that day my sweet girl was born. Her birth was rough, her start to life jeopardized by health complications. I feel as though we are celebrating a whole new stage of life. She is learning to read, she is so artistic, and has a heart for the Lord.

Some big changes work wise are happening around here as well. We will be getting slightly busier, but for good reason. We are so excited to share with you what will be happening around here. We are picking up more work. One of these days my husband will quit his day job. Until then we will be leading a very busy life. This next venture in life will be a family affair. We will be teaching our children a lot through this next venture and also learning a lot from others also.

We are praying that Proper Disposal will pick up even more. Creations by Mommy has been doing wonderful at craft shows. Hopefully those will pick up as well.

I feel like this week is a quite before the storm. Not a bad storm, just a busy as busy can be type storm. We will use this busyness for good. We will be hitting the ground running.

I should be doing dishes, laundry, and other things. I sit here instead dreaming of big things to come.

Please continue to pray for our family. Please pray that we will be a blessing to others. Please pray that we continue to make the right choices for our family.



Sunday, May 20, 2012

Pondering

Happily married, 4 perfectly healthy, well-behaved children, stay at home mother. Big beautiful house. Husband with decent money. Going on vacations. Sending my kids to a private school to get their educations. Having a nice car, pool in the backyard, and buying my children all their wants. This is how I envisioned my life when I was 15.

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As I was siting with my husband tonight I pondered the past and the future. So many events in my life I have tried so hard to be in control of and have ended up far from that. I am very OCD. I like to have every minute of every day planned out. I like to have everything in its place. I like to have a list for everything. In the end I like to be in control, but it isn't as simple as just wanting to be in control. We can all want to be in control, but at some point we have to face the music that someone else will have control.

If we are an employee, the boss has a control. If we are a young child, the parent has control. The government has control of speed limits and much more. A principle has control of it's students. A dog owner has control over his or her dog. Eventually we fall into a category that we need to summit to someone higher up.

Much of my latter years of high school were spent trying to take back the control I felt I lost as a child when my parents divorced. I did many things that were against who everyone knew me as. They went against my character. I ended up married at 18, to someone I should have thought twice about before marrying. I could marry him despite my families disapproval because I could. I "loved" him despite the abuse I under went. I ended up pregnant shortly there after with my first born. I was going to control my relationship. I was going to "fix" my ex husband. I could do all those things. After the abuse got out of control, I left. I then continued to try to control my own life dating whomever I felt was okay. Trying to control who I saw and what I did. I ended up pregnant again. This was not how I was picturing my life. I did not picture being a single mother of two children 18 months apart at the age of 20. I needed to try to stop controlling my life. Instead I just tried to do it more.

Do not get me wrong. I still try to control the things I can such as my list making and scheduling out days, but I have learned through this journey with Kinsley I am not in control.

This life I am in is not how I had envisioned from the start. I have an amazing husband, we are happily married, but marriage is hard work. It takes a give and take relationship. It takes compromise. (something I am not good at) He is my best friend. He is my greatest cheerleader. He is the love of my life and I am truly blessed we have been brought together to spend our lives together.

I have 4 children. While they are all healthy in a sense I never in a million years would have dreamed I would have to deal with a child with disabilities. Although I have a strong heart for those with disabilities I never though I would have to parent a child that had limits in their ability to do life like a normal child. I was then blessed with my oldest who had some Austims tendencies, SPD, along with large motor and speech delays. I did my time. I could now have the rest of my children be healthy and without disability. I had my son and the our second daughter. Awesome healthy children. Growing up to be wonderful people. Then our world was rocked. We were given a child with more complicated disabilities. We were given Butterfly Girl. No vision. Healthy? Yes she is healthy, but it was not what we were expecting.

Right then we learned we were not in control of this life. Our Father up above was in control. He gave us a sweet baby girl with no vision. He knew we could handle it. I will admit there was a stage I went through that I tried to control everything. I tried to get her into the best doctors, the best places. I tried to get her therapy as fast as I could. Truth is, none of my urging made anyhing move any faster. God was in control and he had a list of the way things were going to happen. He had his schedule written out. It is amazing how fast you can realize you are not in control of your own life.

By giving over control to the One who has it in the first place has been very rewarding. Although some days I still wonder why we are on the road of life we are on I just trust. With following His lead in this life has been leading to so many rewarding opportunities for us. I wish I could spill all the beans! I wish I could tell you so much more.

As I sit here a few days before I turn 25, although my life is not how I had envisioned it 10 years ago it is amazing. God is blessing us ten fold. When you listen to your Master you are rewarded greatly. I am so glad he gave us our 4 children. I am so glad that he gave us a supportive group of family and friends. I am so glad that I am finally giving him all control. He does a much better job figuring out my life they I do.


Wednesday, May 16, 2012

Kicking Depressions Butt

As some of you may know I suffer from depression, both seasonal and post partum. I have been suffering from one form or another since I have been in high school. I never in a million years thought there was an escape to this horribly hindering disease. I assumed it was going to be something that would haunt me forever. I mean I take medicine, I talk to a counselor, and the whole nine yards, but I never thought there was a way to do it without those things.

I have just completed a book called Overcoming Depression by Neil T. and Joanne Anderson. It is a Christ centered way to kick depression in the butt. I can truly say I am happy. I no longer need my medicine. (and yes I had my doctors permission to wean off them) I am going to have days that are harder then others, but who doesn't. I have an amazing heavenly father that is doing wonders in my life. Together we have kicked depression in the butt. Depression will no longer rule me!!

How did I do it? I get into the word of my Lord every day. Sometimes in the morning and sometimes at night. I PRAY constantly. I feel like I am always saying a prayer, either little or big. I pray for the kids, my husband, God's guidance, and so many more things. I started to give God my worries, fears, and failures. Knowing I can not do this journey of life without Him lifts a huge burden.

I have also learned over the past month or so that praying for my husband and my children has changed them without them seeing it. Or it has just changed me so much that I tolerate them better. Either way I will continue to pray for them every day.

Despite so many things in this life that are up and down, I am happy. Kelly's job is stable and great, but a little different then the job he had prior. This job has him home at different times then his other job which is a blessing. It is giving him time to work on his own business, but it also causes for some stress with when he will be working late or not. Trying to figure out if he will be home for dinner one night and not the next as often he doesn't know until about 3pm if he will be working extra late. He has ha job and this is a blessing.

We have been working on something else here in the Rus house. I so wish I could tell you what it was, but until it's final our lips our sealed. We are so EXCITED to be following God's lead and taking a step into the direction he is leading. This step in life is providing my husband and I with deep conversation on how we can be a blessing. We are out to make these next steps a family project.

Butterfly Girl's lack of vision no longer has me down. We are kicking blindness out of the way. It will be a part of our life, but NOT our life. The lack of vision is only a part of who she is, but does not define her. She has bright blue eyes and a smile so big you can not help but smile yourself. She is full of life and joy. She is not letting blindness get to her so we should not either.

I have been doing many craft shows lately. It has been lots of fun. It gives me a sense of joy to sell items that I have hand created. It is fun to see people delight in items that they have picked out. Being able to sell these items at shows is a joy I have not experienced. I love it.

Our home school year is coming to an end and so is Bunny Girl's year at school. We are going to be enjoying our summer. We have lots of structured activities we will be doing. I am excited for this. I am really going to try my hardest to maximize our time this summer doing as many fun things we can fit in. I am going all out this summer partly because I am sad they will both be going to public school next year and partly just because. We have had an awesome school year with tons of learning and fun.

I am so glad that I am on the mend. I am so glad that I am so happy. I am so excited that I can kick depression in the butt. 

Tuesday, May 15, 2012

Mother's Day

I had a rough week. I ended up getting sick even after I willed myself not to. I got behind schedule on lots of things. The house got really messy. Plus we went to the two local parades in town. After that I had to set up for a craft show this weekend and do that. I was so sad my weekend was going to be so full. I didn't know what I was going to do. I did however have the most FANTASTIC Mother's Day.

As I sit here contemplating what a wonderful day I had today I realize so many things.

I am at peace with life. Everything is so enjoyable today. My kids were extra fussy, but that didn't seem to damper the mood. I get to be called Mommy by four wonderful children. Each of them are so different and unique. Each one has their own personality and gifts. God choose ME to carry them in my belly for nine months. God choose ME to give birth to them and then to be their provider for during this life. God gave me each of my children to teach me different things and while they are teaching me how to be a better person I also get to teach them. I am so blessed to be called their mother.

Bunny Girl was given to me as a first born. She taught me that no matter how rough life gets family always sticks together. She has taught me no matter how down life gets someone always has it worse. She has made me grow more in love with Jesus. She has taught me how to love, sing, and dance. She warms my heart with her compassion for other people, yet she keeps me on my toes with her immediate dislike for a situation. I am so glad that she calls me mommy.

Alligator boy, oh my sweet alligator boy. He is my soft hearted and gentle boy all while being a very boyish boy. He loves his dirt, trucks, and tractors, but he truly has a heart of gold. He has taught me how to be gentle. How to treat his tender heart as though at any point it could break. I needed to learn this lesson because it is how I need to deal with any one I come in contact with. You never know when something you say to someone might be hurtful even if it is not the attempt. He has taught me all I know about tools, about trucks, and about playing in the dirt. Having a boy is different and amazing. He has a heart that loves everyone, cares for everyone, and never wants to see any one sad. He loves his sisters better then any other big brother could. He is curious. He has questions for everything. He has taught me that it is okay to ask questions about life, about anything. To think that I he could no be here with me today is sad. My life wouldn't be where it is today if I would not have had Parker. He has truly made me a great mommy. I am so glad he calls me his mommy

Monkey Girl has taught me how to be crazy! How to enjoy every moment of every little thing we do. How to do everything with a smile. She has taught me patience. She has taught me overwhelming joy. She is so busy all the time. I get tired some days with her, but no matter what she always shows me her love. My favorite is when she comes up to me, squeezes my cheeks, and kisses me. She loves giving hugs and kisses. She LOVES books. Monkey girl has taught me how to sit and play or read. She has taught me that house work can stop and I can sit and play. She brings me great joy and I am glad she calls me her mommy.

Butterfly Girl has changed my life forever. Being the last in our family had a special place. She will forever be our "baby". Then she changed our world even more. She is special in her own way because she has no vision. Her eyes have failed her. Other parts of her body are failing her and not allowing her to be the seven month old she should be today. She has taught me to lean on the Lord. She has taught me that without the strength of the LORD I can do nothing. Life will be hard no matter what, but I do not have to carry this burden alone! Butterfly Girl has a sweet demeanor about her. So gentle and loving. Her smile when she hears your voice is contagious. When she knows your their the glimmer in her eye is priceless. She has taught me how to channel my stubborned, strong willed personality towards helping her get the help she needs. She can not talk yet, but I am so blessed I get to be her mommy.

I also comtenplate the mother I am today in credit to my mother. She is truly an amazing women. She has a heart of pure gold. She loves each one of us to no end. She would climb mountians and swim a thousand seas for her children. She raised us for so many years as a single mom. Although we knew our parents were divorced my mom also made sure that we felt loved. She always made sure that we felt cared about. My mother has the strongest faith. Stronger then any one I might know. All of these qualities she has passed down. I try my hardest to make sure my children each feel loved and cared for. I try to make sure that no matter what we are going through emotional and fiananciallly. She never once made it seem like she didnt have enough money. She is an amazing women. Her faith has been passed down as well. I admit that I am not half the women of faith as she is, but she is my fole model. She is amazing. She has helped shape who I am today.

Its been a blessed Mother's day! I am so thankful to have a mom and to be called mom.