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.


Love

I have felt all the love in the world today. Love for me, for my family, for our situation. On my way home from a bible study we do on Thursday nights I cried. I cried not because I was sad, but because I felt so loved.

My family loves me. I have no doubt of this. They are there for me, my husband, and my kids. They will always be there for us. They will love us through Kinsley's disabilities. They will love us when life gets tough, when life is messy. Of this there is no doubt. I have an excellent Mother, father, brother and sisters. I have a fabulous sister in law and great nephews. My in laws are just as wonderful. I get random emails from my sister in law that are often devotions I need to hear for the day. I have a brother that just loves on my children in the most gentle ways. They way he held onto Kinsley tonight just showed how much he loves and cares for her. The time he take to talk to each one of our kids. My mother never leaves me. Shes always there for me to talk to. She knows from experience the hardships it takes to raise a child with special needs. My dad is amazing also. The way his face shines when he hears our oldest call him "ganpa" or our Son ask him "whats in your truck?" is priceless. One of my sisters has handicaps and she just loves being an aunt. My other sister now lives 20 hours away and although we have never always gotten along I know the love she has for me, our family, and for her niece. She will always put our disagreements on life out of the way if it means supporting her family. My in-laws are wonderful. At first I felt as though I wasn't welcome into their family. I felt like I was the  last person they wanted their son to be with because I had two children already. In the past year they have done nothing, but make our family feel so loved. My mother in law helps feed my sewing addiction by going to the fabric stores with me. She comes over to help sew and we can talk about whatever. My father in law is always helping with the kids and loves being a grandpa. I am so blessed to have all of this family surrounding us during this journey.

Family is not the only way I have felt loved lately. I have been making some good connections with friends. I don't have many friends. Seeing as I stay at home with my kids I don't go out to do a lot. I don't make a lot of friends. Also if I make friends they might want to get close to our family. They might feel the pain of this journey we are on with Kinsley's vision. This scares me and therefore I stay away from making to many friends. I have reconnected with a friend, who I for a while felt so distant from. Things had happened between this friend and I. I though things would never feel good enough to be friends again. Well guess what? Tonight proved to me that she truly cares about our family. She truly loves us even though we are going through a difficult time. I can say that I felt loved. At bible study she even walked me through a different perspective of life that I didn't think about before. She spoke truth in my life. It wasn't just her that made me feel loved though. My whole bible study group did. They listened, the shared, the prayed for us. It was amazing. I left bible study feeling at peace. Happy even that I do truly have friends where I felt like I didn't really fit in. Most of all I am glad that I have a friend back. I cried. I cried all the way. Today was a great day! I am going to bed feeling blessed beyond measure.

Kinsley had a therapy appointment this morning. She is very limber. She has no resistance on the left side of her body. Her right side is weak also, but not to the extent of the left. We need to be doing some therapy 6 times a day for 20 minutes each time. Hopefully this will allow her to get her strength up so she can start sitting and reaching other milestones that need to be reached. Thank you for your continued prayer. Please pray that we find out the results of her MRI tomorrow. I really don't want to have to wait the whole weekend to find out on Monday. 

Great Day

Today has by far been the best day I have had since Kinsley's diagonsis. I will no lie when I say it has been a hard road for me to travel and I needed to catch a break. I needed to just have one really, really good day. Today was the day.

I got to start the day by going to Crazy Bounce, a local bounce house. It was a blast. I got to bounce, climb up giant slides, and play like I was a kid again. My nephew beat me up in the bounce house that has the over sized boxing gloves. He wanted me to go every where with him. I loved it. I got to take my little ones all over to. Myla was not scared at all. She was off on an adventure and nothing was stoping her. My kids enjoy being there with their cousins and friends from church. Oh, I had a blast also! It was perfect.

After that we went back to my brothers house and ordered pizza. It was great. I came home to clean the house a bit before a lady and her daughter from our church came over. They came over to deliver the best present any parents could ever ask for. A NIGHT OF BABYSITTING!

Oh my word, they will never know the true blessings they were tonight. They will never understand how the timing of their request to babysit was the best timing ever. Kelly and I have been bearing the weight of so many things. Life is hard. I was blessed with their phone call on Monday. They wanted to offer us a night of babysitting at no charge. AT NO CHARGE! Oh my word how amazing. Babysitting for four kids costs a lot. We never go out unless we can find free sitters. This usually means unless our parents are willing to baby sit we stay home. Their offer brought me tears. I couldn't believe someone would want to help us out by watching all four of our children.

I so often feel like I am burdening other people by asking them to watch my children. It was my choice to have four after all. Although I can not help that Kinsley is blind it is a lot to ask someone else to take on that care.

They came right when they said they would. I gave them a tour of the house, changed the girls one last time before we left, and then headed out the door. Our  date night wasn't anything magical, sparkly, or fancy. It was perfect for us though. We went to dinner where we actually sat down and talked inside instead of going through a drive through some where. Then we ran errands without our four little bundles of joy in tow. Best part yet; they were all in bed and sleeping when we got home! This is huge! I love that I for one night got the break of struggling with them to get their jammies on or asking for just one more book or one more drink. I came home to peace and quite.

Before they left we were able to share life together. I showed them some of the things I have made. I showed them Ondrea's Easter dress. We talked about Kinsley being blind and this journey we are on as parents. How we feel we need to make each child in our family feel special. I am amazed at the faith and compassion this young girl has. She has a heart of gold. Her mother does too. I am beyond thankful for the two of them blessing us with the chance to spend time together as a husband and wife without having to be mom and dad at the same time. Before they left they prayed for us! This mom and her daughter prayed for us! Their words were so awesome. Just the prayers we needed to hear. I could feel the truth of their words and how badly they want our family to be blessed. I could hear in their hearts that even they know what we are experience is struggling that they truly want God to bless our family. It is huge. They listened while we were talking because they prayed speically about some of the things I had mentioned and that is awesome!

Please pray that they will continue to be blessed for being a blessing. Like I said; They will never truly understand the gift they gave us, they will never truly understand how perfect their timing was.

Life Is Different

This picture is worth more then a thousand words. It shows that no sight needs to be had in order for a daughter to feel the love of her daddy.

My daughter is blind. Life is different. The words we say when we talk are different. We choose our words more carefully. Even our other children are catching on. We say things like Kinsley can feel this, or listen to this movie. Those words are not words we would normally say. It is hard. It is something that shakes my ground daily still. It is a constant reminder that our life has been turned upside down.

I am so grateful for friends and family that support us. There are many hard days still. As if it isn't enough to raise 4 kids, work from home, clean house, cook, and have time for yourself, you are now raising a child that has a life altering disability. A friend of mine put it nicely when I posted this picture on a Facebook page I am a part of She said, 

"She(Kinsley) may experience the world in a different way, but she won't experience it any less. ♥"

I need to remind myself of this often. I need to write it down some where. It is so true. My baby girl WILL experience the world. She WILL do it in a different way, but there is no way she will experience it any less.

We will give her all the tools she needs, all the experiences she needs to experience this world to it's fullest. She will thrive, she will succeed, she will over come all adversity. My precious baby with her daddy. Priceless. There are no other words, you can look at the picture and just sense the love coming from both of them. He doesn't need to say a word, just stand there and let her feel his face and she knows. She knows its her daddy. She knows his love.

Our life is different, some days I wish it wasn't, but we will take every day as a blessing.

Carrying the Burden

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

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

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

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

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

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

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

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

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

Truth is Hard

Today we had another visit to the eye doctor. Its sad to say that these appointments do not get any easier. The truth we have to endure is hard. It takes a toll emotionally. It pulls at our heart strings. It makes us cry.

Once again today we were told our baby was blind. There has been no change in her vision in the past four weeks. There probably will never be a change in her vision for as long as she lives. This is hard. It hurts. Each time we are reminded that she can not see, especially during this early time, is a slap in the face. Its a constant reminder that our baby girl was not born the way that we had hoped and prayed she would be born.

The truth is not only hard for us as her parents, but hard for others. Its hard for our family to accept the way that she is. Its hard for friends to know how to support us. It is hard for people in our church to know what the appropriate words are to say to us. The truth is hard! The truth quite frankly sucks. It is by far one of the hardest things I have had to deal with. I wish it wasn't so.

I ask all of you, whether you know us personally or are reading our blog from afar. Please, Please, Please think before you speak. Think about how we or others around you who may be going through something similar are feeling before you speak. Please understand that some of the comments that you may make might hurt. They might be that slap in the face that we have been feeling so often lately. So many people just are not sure how to be sensitive to our process of grieve. The truth is hard and more then anything in the world we want our baby girl to see, but its just not going to happen right now. God could still provide us with a miracle. He can restore out baby with sight any time he wants. This is my prayer all the time. Right now his answer is no and that's okay. He is carrying our family through this time.

I am going to continue to lean on God during this time. I am going to keep telling God how I feel. I'm going to let him wrap his arms around me and say "It's okay child, I have got you." I am going to let him be my shoulder to cry on.

Please continue to pray for us. This is a long hard journey where the truth of the situation still hurts. It still cuts a deep pain in our hearts. It still brings tears to my eyes. Please pray that we will continue to make it through this journey. Please pray that the next steps we need to take will go smoothly. We have therapy appointments, MRI, and more coming up. Please just join us in praying over Kinsley.

Husbands

I have to admit something. While my husband and I sometimes disagree he always has my back. He is there for me no matter what. He is truly my number one cheerleader, support, and friend. He is everything I could ask for. Do I get angry with him? Do I get upset by some things he does or doesnt do? Do we have our moments when we disagree? OF COURSE! What married couple doesnt?

For those of you that don't know. I met my husband in highschool. After going our serprate ways our senior year I got married, had my oldest daughter, got divorced, and had my son. After going through a program at our church called Freedom in Christ I was feeling much better about life. I was feeling released from a lot of baggage. I was telling my pastor how I wonder what life would have been like if my husband and I would have stayed together. I wonder what he was doing right then and there. Not that I would give up my children to have a different life. Not that I would give up the experiences I went .through to have a different life. They make me who I am today. I am strong. I am confident. I am independant. Four hours later my husband showed up to where I was living. He asked my mother where he could find me. I was home. It was the most shocking thing I had been through. The first words out of my mouth were I have two children. He didnt run. In fact he came inside and we talked. We have been together ever since. He has been by my side for every rocky ride I have taken. He has been by my side through every joy that I have gone through.

The Lord knew we were meant to be together. I have been especially thankful for him lately. He just has really stepped up the game. He has been so supportive of my business, of my housework, and of my job with the kids. He has been by my side to help. He has been doing one of "my" chores every night when he gets home. Today he vacuumed. He has been helping spray paint the framework of the chairs I am working on for my next craft fair. He has been helping bath the kids. Bathing the kids is almost an every day job now that its nice outside and they spend so much time in the dirt. He puts them to bed while I nurse Kinsley. He has been my helpmate. He truly shows me he cares about each one of us.

He has equally been my support through my depression and my rough time with Kinsley's diagnosis. He is there when I need a shoulder to cry on. He is there to help with the kids when I need a few minutes alone. He is there for whatever comes our way. Without him I am not sure where I would be. He is my love. My best friend. My world.

Monkey Girl turned 2!

Wow! It's amazing how fast these young years go by. I can't believe our monkey is 2! We had quite the monkey party yesterday. It was a great time of fellowship with family and friends. Our monkey got lots of great gifts and she couldnt decide what to play with first. The love and support from our family and friends was evident yesterday. God has given us a gift. God has given us two amazing years and we pray he gives us many more. Two years ago on the day Monkey Girl was born we had snow. Today it was in the 80's and we were all wearing shorts! Crazy how different things can be in two years. Happy birthday baby! May you have many more. Because we celebrated yesterday we didn't do a whole lot today. I started my morning as positive as I could. I got discouraged though after finding out my afternoon wasn't going to go as planed which in turned messed up my morning. I don't do well with change. I dislike what I can not control. I spent the day in town. This I don't normally I unless I have to. Staying in town meant I could not get done what I wanted to get done at home. That is fusterating. I need to get as much done as possible during the day so I have time to work at night. Another reason I was feeling a bit down today was because our Early Intervention meeting didn't go so well on Friday and it's still eating me. Kinsley's eye doctor says one thing, my own observation tells me one thing, and they told me the exact opposite. They said she doesn't need services and to call them back if she needs them later. This makes me fusterared because she needs services now! She doesn't use her feet, she doesn't do tummy time well. She needs help. I need help helping her. It's eating at me today. It's making me sad. It makes me feel lost. It makes me feel helpless. I can do all things through Christ who strengthens me. I got sent this in an email from a friend! How true! I need to remember this often. God will get me through.

To long

Its been way to long since I've blogged last. I've been super busy trying to figure out a schedule that works for our family. I am trying to find a balance between my work, my family, and relaxation. It's quite a task. I think I am finally coming to a good routine. I am feeling better about life when I am in a good groove. I fell off my groove the other day and once I do it throws me off for a few days, this is why I haven't blogged. My depression sometimes gets me down over things I can't figure out. I lost a very important piece to my brand new machine. I couldn't find it and therefore my machine would not work. I was upset and angry at myself for losing this part. This then caused me to over sleep and be pretty mopey all day. That turned into me not sticking to my routine and being more upset the next morning because all of those chores I do at night so I can wake up to a clean house were not done. I got back on top of it th next day, but I can still fell the anxiousness. Part of this anxiousness is because my schedule is off today, tomorrow, and Sunday. Today we had the therapists come out. This was both fusterating and angering. They told me my child could see even though I politely showed them why the doctor said she can't. To get her to track objects they were using beads and other things that make noise. I told them that if they took the noise portion out of the equation that she stopped tracking. Sure enough they saw that, but it wasn't enough for them to be concerned. She still lifts her head and moves for the noise. They also didn't address that her head still is down most of the time or the fact that she doesn't really care to use her legs. I am outraged. Help my baby! Help me help my baby! I really just wanted to cry. I needed to try to pick myself up. I need to try not to let it get to me, but it does. I then went with my husband to FIRST Robotics. They are having a competion on our home turf and because he mentors we wanted to show support. Tomorrow we will be going back to ROBOTICS. I will also be getting ready for my Monkey Girls Birthday Party. We are having a monkey theme. It will be fun, but the day won't be how it normally is. This throws me off. Sundaynis the party which will make the day off. Please pray for peace as we go through the next couple of days and they are not how I normally spend them. Please continue to pray for Kinsley. They are felt. They are needed.

One month ago...

One month ago today we found received the devastating news that our baby girl has no vision. She is blind. I remember the moments like they were yesterday. I remember driving up to the eye doctor. Ever second seemed like it was dragging. I checked in to the front desk with a quiver in my voice. I knew what the day would bring. It was in my gut. I just needed to know. I very anxiously awaited the arrival of my husband. He went into work that morning and met us over at the doctor. I remember the moment we got called back. I could feel the shakes and the tears. I carried my sweet girl to the exam room where the nurse ran another serious of tests. Both with her glasses in and off these tests were run. No change. The nurse wanted to be so hopeful. The nurse said everything with a cheer in her voice, but her cheer was not fooling me. I knew the truth. I knew that our fear her glasses weren't working was becoming a reality before our eyes. Grasping at straws in hopes that there was still something that could be done the nurse asked of she cold have her glasses. She wanted to check to make sure that her prescription was not wrong. When she came back to the room she confirmed that the glasses were the right strength. No change was happening. So we waited. We waited for the doctor to arrive with official word on what would be a lie turning day. We waited and waited. Kelly and I talked about how a doctor might prepare to tell parents that something so life changing is wrong with their child. We talked about how hard it must be for them, how they go about mentally handling something so awful. 45 minutes we waited for the doctor, but the it was time for the truth. The doctor ran the same tests the the nurse ran. Still failing all of them. Then she let us have it. "I'm really sorry to tell you this, but your daughter can't see. Her vision is not there." at this moment I wanted to fall apart. I wanted to make it all go away. I wanted to run away kicking and screaming! Not my baby! Not my baby! She explained that we would be well cared for. There is a community of blind persons that are always supporting each other. It will be an easy path to navigate with this support. We got ready to setup our next appointment. Once in the parking lot I fell into my husbands arms and cried. My baby was blind. My baby was going to live her life with no vision. My friends this is not an easy path! This is not the one I would have chooses. I am still naviagting. I am still trying to find this community of support. I'm still trying to cope. I'm depressed, but working on it. A very, very dear and caring person close to our family brought a boom over today. Overcoming Depression. I'm excited to start reading it. I know with God I can start overcoming this depression I fght. I know with God I can deal with those things life throws at me regarding Kinsley. I know with God Kinsley will be able to live a life full of joy and promise. It will just take different paths then those of my children with sight. Please continue to pray for us. We have made it through a month, but have been told the first 2 years are the toughest. This is when most of the milestones happen and also when the most learning/changing happens. In this time they learn to roll, sit, crawl and walk. All of these milestones will come with challenges. These first two years will be hard. Please keep praying for our family! I can feel the prayers. I can feel the support all of you who read this blog give. Please continue to pray. Danyelle

Surviving

One month ago today I was up all night tossing and turning. I was awaiting the morning that would change my life forever. One month ago today I was waiting for the dreaded words I ended up receiving. One month ago today I was up all night wrestling with God saying "please make this a dream, please heal my baby. What do I need to do Lord for her to see." It was a long night. I'm not sure I slept much. Here I am one month from then still alive. Still trudging through the waters of Kinsleys diagnosis. Still hanging on to the fact that my Lord and Savior will carry me through. I will tell you this month has not been without struggle. I will tell you this life will not be without struggle. Today my husband made mention that most kids Kinsley's age either get scared of big dogs like ours or laugh and giggle when big dogs likes our come up to them. Kinsley does none of this. I must admit I cried. It's those little things we take for granted. I would be so happy even with the scared cry because it would mean she can see. Alas she can't. She won't. Not unless my heavenly father heals her in our lifetime. If you have young children like Kinsley please don't take for granted those small moments that get your child's attention. Even if it is a cry. Savor it. Hold onto it. It means they can see! It means their eyes are serving their purpose. We took a walk today. We enjoyed the beauty that surrounded us. Kinsley can not enjoy the beauty the same as us. It's hard on this heart of mine. The day has been full of tears. The day has been full of some realizations. The day has been draining. I have been doing some things to keep me from going to far into a depression where I want to sit and do nothing. I have myself on a pretty good schedule. I have created a list of things to do in which I choose five evey day. Of those five et done I can pick some more. This makes me feel like Im getting things done, but also giving me permission to enjoy my kids, my husband, and life in general. I have also been working up a storm. Please pray that I continue on this path that currently has me feeling pretty good. Please pray that the partners I have set up to check in on me for accountability continue to do so. Pray for our marriage to continue to stay strong, pray we keep finding ways to connect as husband and wife and get out if the constant care Kinsley requires. Pray that this new life we are doing will soon become normal. The surprises by what Kinsley can't see will sting less and the joys of what she an do without vision become more! Your prayers are felt every day, and for them my family and I are grateful. Danyelle

All Good Streaks Come to an End

I was having some really good days. Like I posted yesterday despite taking my depression meds I have been doing a really job being able to pick myself up when things have been thrown in my path. Today was the end of that streak. Today has been another really hard day. I feel as though I have been kicked down by those closet to me. I feel like I have made mistakes that are bad I guess. I'm not really sure. I guess making people I haven't realized I made my mad. I'm mad myself people! I'm struggling to figure all this out myself. I'm bund to slip up. I'm bound to make mistakes. I am human after all. I'm trying. I'm trying to navigate this new world. I'm scared to let people help. If I let people help then they might feel this pain I feel. If people help I don't know how they will handle my very colicky, fussy, whiny baby. She's my burden to carry because I chose to have her. Not that I see her as a burden, but others might if they had to care for her. Kelly and I were the ones that chose to have four children. We should deal with it right? I'm feeling as though today I've not done a single thing right. I have been told today the things I have d. Wrong this past week. It stings. It hurts. I'm down. Im crying. I need to stay strong. I also need grace. I need the Lord to help me. I need him to also show others that I am trying. That it's just hard. Hurt. Sad. Crying. That is how I will finish this day. The good days have had their run. Maye tomorrow they can stop by again. Today they were beaten by sadness. Im to tried to try to be happy any more today. The one good things a out today is I was asked to help some girl scouts on their sewing badge. It makes me feel good that someone thought of me to use my talent sewing to help some girls learn. In all the sadness today there was something good. I'm glad I was asked to help. It makes me feel like I have a talent and that I can help others instead of someone always helping me. Please join us in prayer. I need strength. I need understanding. I need grace. Please pray tomorrow is a happier day. Danyelle

Highs and lows

I have been having a few pretty good days with the minor kinks thrown in. Despite not taking my depression meds I have been feeling decent. I do have the occasional anxiety attack which brings me down for a while but I have been able to pick back up. I am a little out of sorts tonight. I'm feeling hurt. I'm feeling rushed. I'm feeling behind. My meds would help me not feel anxious. I must get them. I need to try to get the script tomorrow and head over to the free med clinic we have in town. I spent about an hour talking to my in laws tonight. While it was great conversation and nice to get out of the house I am paying the price of anxiety because I haven't completed my tasks that needed to get done as of yet. I stil, have a while of my night left to go. I am feeling hurt by words that were sad. I was told I needed to give up this kick that Kinsley is blind. I was told this by someone close to me. How can I give up this "kick" when the medical professionals we have seen have told us she is blind. How can I give up this "kick" when if I give it up that she may never get the help she needs. How can I give up on the fact that my child IS blind. I need to accept reality. I need to do with what I have been given. Is this what I wanted for m baby? Is this how I planed my life to be? No! It is most certainly not what I wanted, but it was what the Lord h provided me. Hurt, sad, lost. I am starting to get myself back. Realizing I'm a night person and would rather stay up Kate then go to bed esrly is huge! I stil get 7 hours of sleep (interrupted of course), but without getting up way early. I would rather get chores done by staying up later then everyone else in the house then getting up before the kids. I also like that because I stay up and get so much done I can take an afternoon nap with my munchkins. This helps me catch up because of the interruptions I get at night thanks to Miss Kinsley. I am also glad to be sewing again. This is something I really enjoy. I love creating new things, I love making them for others. I love that I can make money off from it which is helping provide for my family! Mix emotions tonight. Please pray. Pray my anxiety attacks will go away. Please pray for Kelly and I to keep our relationship strong. Please pray for all these uncertain things we still don't know about Kinsleys vision. Please pray that we can keep coming to peace with her blindness. Please pray that nothing stands in our way. Danyelle

All falling into place

This journey has me on such a roller coaster. I go from the darkest pit to feeling like I can be happy and back again. Over the past few days I have been feeling over all pretty well. There are a few times during the day that I feel lost, dark, and down. I came to this conculsion after talking to a very dear friend. I lost myself. I let myself go so deep into the pit of darkness I gave up all the little techniques I used to keep me going. I used these tools to keep me feeling safe, secure, and on track. I gave them all up because I was so sad. I gave them up because other people thought it was funny that I needed these things to make me happy. I am a very routine, schedule, lists type person. Without these things I feel lost. I feel insecure. People didn't think I needed these things to be happy, but I do. If I didn't have friends to talk to I would have never figured it out. I would have kept on going in my darkness. Now I have a plan. I'm back to my lists and schedules. Want to know what's great? My friends and family are there for me, if Kinsley has a rough day, I get sick, we have lots of appointments or whatever they are there to tell me it'd okay if my lists didnt get done. They are also there to tell me when I have put to much stuff on my list. They are there. It'd amazing to feel like I have support. Kelly tried to test Kinlsey's vision again the other night. We both have hopes that maybe one day we will be shocked and she will be able to see out of no where. This wasn't the case the other night. Still no sign of vision. We really need to stop testing it. We really need to start coming to terms with the fact that this is how it will be. This is our life. Our baby is blind. We need to try not to lose each other, we need to try to make sure our other kids feel like the belong, we need time to ourselves so our whole family can process. It is tough this journey. It is tough. Please continue to pray. Kelly and I are both very stressed from the care Kinsley requires. It sometimes causes problems. See get angry wit each other, with our other kids, and with Kinsley. Pray we continue to take the steps we need to take in seeking help to make it through on this journey. Dany.

A shining light!

The Lord my God is my light. He is my shining star. I shall lean on him through this dark time. The on,y one who knows the extent of darkness I am feeling on this journey is God. I am trying to hold it together for my husband, my children, my family and my friends. I don't want any one to know what is deep within my heart. The pain is to much for some else to bear. The Lord is the only one capable of bearing my load. He is the only one that will carry my burdens without complaint. I can feel him holding onto me tonight. I can hear him says "Dear child, we can make it, you will survive. I have a plan for you and it goes way beyond what you can imagine." Over the course of the last few days I have had this feeling, this urge, to write a boom. Maybe that is why I blog. Maybe some day my blog will turn into an inspiring story of how you can go from finding out you baby is blind and still come out alive. Maybe my story will be an inspiration to others. Maybe my story will be a hope in a time of darkness. I know what the darkness and grieving for the futur of a child is like. I do it ever day. One of these days I need to get past this grieving. One of these days I need to get through this storm. So many things seem to be causing me to stay in this storm. So many things are hard. I will tell you this. The Lord has surrounded me with blessing though. My mother in law and I are getting closer through this experience. I am thankful for that. The Lord gave be the worlds greatest friend. We will call her Mommy Bean here on the blog. She comes with her son Bean and watches the kids while I work. She is a listening ear when I need to chat. She is a shoulder to cry on, a distraction when I need it, and a hug any time. She has carried me through some of my darkest days without even realizing she has done it. Her and I have been friends since before my Monkey girl and her Bean were even born. Monkey girl and Bean are destined to be married some day. The Lord knew I would need her through this journey. Today is a better day despite after testing Kinsleys sight she still wasnt tracking. I need to start realizing that testing it myself isn't going to produce the results I want. I need to come to terms with the hand I have been dealt. One positive is I got to sell some of my work at a craft show. I was able to spend time with my family. I also got lots of snuggles from the baby before she feel asleep. I need to have more of these days then the bad days. I like these days better. Oh and something else I love, on those days I'm really really struggling, God shows my sister in law a devotional to pass on to me. Seriouly, every time I am struggling with something it is like she just knows. Every time it has spoke right to my heart. It is seriously amazing how God is bringing me closer to the people he knows care about my well being. Today was a good day start to finish. Praying tomorrow can be just as great. Will you being praying with me? Please do pray for our family. Pray for me to start having more good days. Pray that Early on starts coming like they said. Pray that we make it through one day at a time. Dany

Deep, dark pit

Sorry for not blogging I'm the past few days. I have been busy with life, but also in the darkest pit of my life. I never imagined this journey to have so many tears. I never imagined this journey to be so dark. I never imagined the new senesativity I would have to comments from others. I never knew what it would be like to walk this journey. Life is full of unknowns. Life will never be ther way we picture it. All we can do is stive to make things better. W can strive to act like life is fine. This is the road I've been on. I've been acting like nothing has gotten me down. Like CIA conquer the world. Over the past few days it has bee hard to keep up this facade. This perfect life of no sadness. My day never ends. Al, my days blur together. All my days take every ounce of effort I have. We had Knsley back in the ER tuesday night. All she did was scram for 3+ hours. She wouldn't stop. My husband and I tried everything. Turns our her ear was the culprit of the unconsolable crying. The ear drops help some. I'm never early sure when she is hurting or just crabby because she cries almost every hour. She cries a ton. The past few days I have been working. For those of you that don't know what I do I work for home. I sew many cite things for babies and young children. I've been working to get things done for a mom2mo sale a local church is putting on. I am excited. Working from home is a blessing and a curse. While I have an amazing friend here to watch the kids while I get my work done I can also hear them asking for me. Can hear when they are being naughty and feel bad that my kids are not bring perfect for the one watching them. All of these things I need to do, the fact that I'm still coming to terms with I Kinsleys lose of vision have me at the bottom of life. I am sad. We are without insurance for the next month and I wasnt able to refill my depression meds before it the other insurance ended. I am fighting tooth and nail with the Early Intervention program in our area to test our sweet baby girl the services that she needs. I am also fighting the insurance company to make sure they cover our sweet baby girl once the new insurance kicks in. Add on a house to clean, dishes to do, kids to play with and love, a husband, and much more you can see why I am a mess. I need help, but despite a select few people I barely get the help I need. My husband does what he can when he is home. My best friend comes to watch the kids while I work. And my mom helps, that is the extent. Oh how I wish we could afford a house cleaning service. Oh how I wish I didn't feel guilty about going out on a girls night. I am going to hang onto my faith. I am going to love my God with all my heart. I am going to trust in him. He will be with me even in this dark pit that I am. He is going to carry me to the light. Please keep our family in your prayers. Please keep me in your prayers. Oh and watch for pictures to come tonight of all the cool stuff I will be bringing to the mom2mom sale this weekend. Danyelle

Ups and downs.

This crazy life I live is full of ups and downs. Not only can my sweet baby girl not see she is sick. She is having breathing difficulties. She also has an ear infection. I feel so bad for her. All she has done all day is cry or whine. Nothing makes her feel better. I wish I could take her pain away. I wish I could make her see. I wish I could take all of her sickness away! I went from having a fabulous vacation which was high on happy emotions to another very low point. I am remembering my book. It's all about choices. I need to choose the high road. I sat down and did the dreaded budget. This is one thing my husband and I never agree on and it as o different tonight. The planner in me wants to have all the numbers crunched and if they don't match up I want to have a plan to make up the differnence. He on the ther hand says just lay the bills when they come in. Doing the budget makes me depressed. I hate trying to figure out finances because it never seems like there is enough! So low. So sad. So down. A friend asked today "What one thing are you thankful for today?" It brought emotions I wasn't expecting. I am thankful that I have sight. I am thankful that Kinsley isn't as sick as she could be. I am thankful for doctors who know what they are doing. I am thankful for a new job brought to my husband by my savior! I posted a comment about this job landing in my husbands lap even though he wasn't looking for a new job. Someone gently reminded me that it didn't just land in his lap. My God gave it to him. He knew what we were going to go through and knew he would need a new job. I love this job already. He came home in such a good mood this morning. It's so amazing how the environment of a work place can affect one so much. It was awesome to hear a out his day. So happy. Soaring about all emotions. Smiling ear to ear. We also bought a new car. This brings happiness and stress. We bought it used and whi,e it is truly the best fit for our family and was an awesome deal, we will need to have a few things fixed. This is an up and down feeling. The hills of the roller coaster called life. One dag at a time. My Lord is carrying me through this life. I am going to continue to be positive. I am going to continue to choose to not give up. I am going to keep living in the word of my God. I am going to continue to find strength in him. He will rise above all else. He will be the one I praise even when feeling down. He will reign. Please continue to pray for us. Please pray that Kinsley feels better soon. Pray that emotions here get back on track. Pleas pray that we continue to make our focus to the Lord who saves us. Thank you from the bottom of our hearts for your prayers. I think God tells all of you when we need a few extras because I can feel them during some of my saddest moments during the day. I then feel at peace.

God's got me... Right?

I first need to say sorry for the lack of update. Over the past two days I have hit an all time low on this journey. I finally felt like everything in life was gaining up on me and I was being swallowed hole. I was kicking and screaming and despite the fight I was still sinking. In fact I think I was making it worse! Over the past week so many things have gone worse then I expected. My van broke down, we had trouble with our electric, one of our other children has been acting out, and we are still trying to grieve Kinsley's vision. I figured out where I went wrong. I gave up. I just gave up. Life was to painful grieving the lost of Kinsleys sight and the more that went wrong the more I just wanted to give up. Our kids have noticed this and have begun acting out because mommy doesn't care. Mommy just wants to sit and feel sad. This in turn makes me more sad and angry. My husband has noticed my extra moodiness also. This is not like me. I'm the strong one! I never fall under pressure. I am do not shed a tear for fear it will make me look weak or vulnerable. How could I be letting this happen to me! Today I cried out God! God where are you? Why am I here. Why am I at the deepest point in this life? Why do I need to be the one you selected for this journey? I can't be strong any more Lord! I am to weak for this burden. Please, please take some from me. After I had finished praying I took out my book and card I had received. To very huge blessings that are still blessing me. I started reading my book. There it was, staring at me on the pages of this book. The answer to my prayer. The Lord said "Child it is all about choices! You need to choose not to give up, you need to choose how you are going to focus this new energy, and you need to choose me." The book I am reading is called Parents of Children with Disabilities a Survival Guide for Fathers and Mothers by Press and Gena Barnhill. Reading the chapter in the book called now what I was reminded that I need to make choices. I can choose to give up, to walk away, to try to avoid this new path, but it will come with a price. It will hurt my husband, children, and me. If I give up my husband and my children will eventually move on and not be as hurt, but they will move on without me. I don't want this to happen! I want to be there for my children, all of them, especially Kinsley. I can also choose to invest my time solely into my child with disabilities, but this also comes with a price. My marriage and other children will suffer. Kinsley will suffer from me doing to much for her. I need to find the balance. I need to find the perfect balance between my husband, myself, my other children, and Kinsley. Will it be easy? Will I find the answer to this balance right away? Of course not! It will be trial and error. It will take patience and forgiveness. From reading this same chapter I also gained the knowledge that things change. People change, kids will change as they get older, the dreams and hopes will change. We need to make the choice to change with life. I was so gently reminded that while I am sitting here grieving all that Kinsley might not be able to do she will still have dreams! She will have dreams for her life just lime you and I have dreams for our life. Her dreams may or may not be the same. I needed that. I needed to be told that she won't just sit and lead a non productive life. She can thrive and succeed. This boom continues to be a blessing! I am enjoying it. It was the answer to my prayer this morning. This journey is really all about choices. How am I going to react to what we are dealing with? Am I going to give up? NO! My strength comes from the Lord creator of heaven and earth. I will choose to conquer this journey. I will choose to work hard at finding the balance in this life! A poem from this boom that has also hit a heart chord is titled Don't Quit Don't Quit! When things go wrong, as they sometimes will, When the road you're trudging seems all uphill, When the funds are low and the debts are high, And you want to smile, but you have to sigh, When care is pressing you down a bit, Rest, if you must, but do not quit. Life is queer with its twists and turns, As every one of us sometimes learns, And many a failure turn about When he might have won had he stuck it out; Don't give up though the pace seems slow... You may succeed with another blow. Often the goal is nearer than It see,s to a faint and faltering man, Often the struggler has given up, When he might have captured the victors cup, And be learned to late when the night slipped down, How close he was to the golden crown. Success is failure turned inside out-- The sliver tint of the clouds of doubt, And you never can tell how close you are, It may be near when it seems so far, So stick to the fight when you're hardest hit -- It's when things seem worst that you must not quit. ~Author Unknown This spoke volumes to my soul today. Im allowed to rest, take a break, recharge, but I can not give up! The race can be won. It could be right around the corner. If I give up now I might not know what the finish line looks like. Oh how God answers our prayers. I was also reminded today of the verse from Jeremiah 29 "For I know the plans I have for you declares the Lord. Plans to prosper you and not to harm you. To give you a hope and a future." God knew my family was destin to be on this journey. I should feel honored he gave us this responsibility. He has a plan! I can't wait to see what it is. I know I will have bad days. I know I will feel like giving up again. I can then be reminded again that it is all about choices! Please continue to pray for our family. We had some issues come up with the insurance company. Our MRI is postponed. That was a big blow to the stomach. Our kids have gotten a little out of hand while mommy and daddy have been grieving. Please pray that we can get them back on track. Listening and obeying like they should. Pray that we find the balance we need to find for our marriage, our other children, and for Kinsley. It will be a process. Pray we find a ne vehicle quickly. Your prayers and support mean so much to our family. I would love to thank each of you individually. Please keep them coming. Thank you for letting me share our life with you. Even the tough stuff. Danyelle

Peace... To an extent

Peace is a hard thing to find on this journey the Lord as taken us down. It is full of what ifs and she wonts. It is full of why us and how can this be. I have managed to find peace to an extent. Don't get me wrong. At the beinning if this week my world was flipped upside down and shaken. I feel as someone took a thousand piece puzzle called life, shook the box, opened it up, and then dumped it on the floor. I'm working on finding the edges of this puzzle. Once I find the edges the rest will slowly fill in. Once I have these edges peace will be found. The edges of my puzzle are God, family, friends, prayers, answers, and good medical doctors. All the edges are in the pile they just need to be found. I need to find peace th my heavenly father. I need to know he choose this path for me and my family for a reason. I need to find all the pieces of his word that tell me he is carrying me through this. I need to trut that my family and friends will be there to support us. Be there when we call. Give us a shoulder to cry on our a ear to hear our pain. They are all in this pile. Finding the ones worthy of being an edge piece is tricky. They have to fit just right so I can find piece in this situation. Prayers. Prayers that I offer up to my father of my own, but also prayers that others offer on our behalf. Answers to my questions. What made Kinsley blind? How bad is it? As I find these answers and come to terms with what they truly are my edges will come together. Good medical doctors are a must. I need to trust the eye doctor and pediatrician to do what is right for Kinsley medically. These are the edges of my puzzle. These are the pieces that are still being found. I have hope. I have my God. After I have the boarder of my puzzle complete I can live life and fill in the picture. It will be a beautiful one at that. The picture on the box shows me a beautiful young girl that can do amazing and wonderful things. A young girl with a heart for God. A young girl who has no vision. Who is blind. The box shows me my daughter. MY daughter! Nothing will change that. I have found peace to an extent. I have been reading these words off a card my husband and I received in the mail. It reads: God holds our lives in His hands like precious stones, polishing each with challenges, choices, and changes. And in time we become shining reflections of HIS purpose, of HIS promise, of HIS love. It brings peace to my heart. It also reminds me that once I'm out of this stage of picking up the peieces, of being polished, I will be shining for HIS purpose. He has a great plan for our family. I can feel it in my heart. Please continue to pray for us. We are far from being over our journey. We are still having good days and bad days. Please pray for us as we continue to explain to our older children about their sister. Please pray for Kinsley. May she grow up having peace in her heart and seeing the Lord even without her vision.