My Four Kids

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

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

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

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

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

Another blow

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

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

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

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

MIA

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

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

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

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

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

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



Vision Update

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

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

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

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

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

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

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

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


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.

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.