Uphill from Here

The week can only go uphill from here! My Monday morning started out rocky and it only got worse from there. By noon I was in tears I just couldnt handle the stresses of life.

Mistake 1: I woke up late. None of the kids wanted to get ready to go. Its was rough. OG was about 15 minutes late for school. After dropping her off at school I needed to drop Alligator boy off at my brothers so that I could take the two little girls to the doctor.

 Mistake 2: Taking a two year old and a 6 month old to the doctor on the same day! Where was my head? Monkey girl is so crazy and hard to keep contained. Plus I knew the doctor would be less the impressed with her large motor skills. Her MRI came back fine. Praise the LORD! The only down side to that is it still leaves us grasping for straws as to why she can not see and why she is so weak. Her muscle tone is almost completly lacking. She is a mystery child. So many complex things to deal with. We will be seeing a neurologist along with heading to the Gerber Clinic in Grand Rapids to see if they can help with therapy. The Gerber Clinic should be able to give us a better understand of what may be going on also. Monkey Girl on the other hand is advanced for her age. She is doing things most three year olds are just starting to accomplish. She impressed the doctor with everything she did. Oh and they are complete opposites. Monkey Girl is light and short. K is heavy and long. It's odd because Monkey girl looks chunky, but only because she's short. K looks skinny, but only because shes long. All in all a good appointment. Just frusterating knowing K is behind and the doctors still are not sure what is up with her.

Mistake 3: Thinking I was going to get my hair done without already having an appointment set up. I have a hair cut and color I want to go with. I was all ready to get it done today. I know the longer I wait the more I will chicken out. Well I didn't have an appointment any where so as I was calling around I kept getting told they didn't have spots open any more today. How frusterating. I just wanted my hair done. I never do anything for myself. Today was my chance and only today. Or that's how I felt any way. My mom and a friend got me out of my funk and I set up an appointment for tomorrow.

Mistake 4: I slept. Once home from the appointments this morning I fed the crazies lunch and got Monkey Girl laid down. I then put in a movie for Alligator boy and put K to sleep. Once she was a sleep I took my crabby, depressed self, and slept also. This was a mistake because I didn't get any cleaning done. My house needs a good cleaning and instead I feel asleep.

After my nap I did get some cleaning done. I got to spend time with my family. I got to giggle, play, and have fun. I got to sit and talk to my husband for a while after all the children were in bed. Oh and I got to get out of the house kid free. It was only to my inlaws down the road, but none the less it was minus my four other limbs. I have gotten some work done tonight also which is great after taking all last week off. Now if I can just continue to work until 3am when I normally end my "shift" we will be all set.

Tomorrow is another day. I can get cleaning done tomorrow. I can get my hair done tomorrow. For today I need to be thankful for my family. My house. The work that is required of me from my children, my house, and my husband. I need to be thankful that K's MRI came back okay. I need to be thankful that she is alive and well despite some delays.

Thank you for your continued prayers.

Long week

If you know me at all you know that when life doesnt go as I had intended I tend to freak out a little. If I dont plan things out I tend to get anxious. When I don't plan things my house tends to fall apart. I tend to start getting depressed because I do not feel like I am doing enough. I had one of those moments today.

Yesterday I had planned on laying low all day. I knew after the MRI that Kinsley would need my attention the remainder of the day as she may have had some side effects. No biggie, I had that under control. Until the MRI and after went no where near what was planned. Last night fell apart completely. I didnt get any work done. I didnt get any of the house clean. I was just to exhauseted, physically and emotionally. I sat in bed on the computer researching, pinning, and facebooking. I dozed on and off inbetween hoping nothing else was going to happen to Kinsley.

Today I had no plan. This is never good. I hate not having a plan. All I knew was I needed to get our oldest to school, go to Joanns fabric, and to meijer. I then went to hang our with my mom and nephews. My son wanted to play with his cousins and how could I say no. The house wasnt terribly messy and other then picking up and doing some laundry I didnt really have much to do. I just figured to myself I could do it tonight. Then I remembered... I needed to go help at girl scouts. I was helping the girls learn to sew! Oh how exciting it is to teach them how to do something tha I love. So there was no getting things done, but wait. Super Awesome babysitter saved the day. By the time I was home the house was clean! Oh how awesome it is to have a baby sitter that takes such awesome care of my kiddos and picked up the house for me. I had fun at Girl Scouts, but I needed to get ready for the garage sale we are having this weekend. I headed to the laundry room and started sorting what needed to be sold and what didnt. Crisis adverted, but the week isnt done.

Tomrrow I wont be home till late. I need to help my mom price stuff for the garage sale, bake cookies, and then go get groceries. I wont be home till close to 7. Thursday Kinsley has a PT appointment and then I will be heading to my brothers house to help with the garage sale. Friday and Saturday are garage sale days as well. It will be an even buiser end to the week then beginning. I need to remember not to stress. That it is fine. Way harder for me to do then say. So please pray for peace. Pray that I dont let myself get worked up about what my normal week looking like doesnt happen this week. 

Scared and Shaking

If you could have had a window into the hospital this room you have seen me scared and shaking. Pacing the floors feeling like my hands were tied behind my back and helpless. Moments where I was crying. Me hovering over Kinsley's bedside not knowing what to do. If you could have had a window looking into our room you would have seen my husband feeling just as helpless, but strong. Strong for me. Strong for our baby girl. Holding it together when I am sure he probably would have liked to let it go. We were helpless. We sat for what seemed like hours and hours waiting for our baby girl to respond.

Kinsley had an MRI this morning. Our day started at 6am. We left our house expecting to go to the hospital, get the MRI, and come home. We were expecting that we would get home around 11am if not before that. We did not prepare ourselves for what we were about to experience this very day. We were not ready. We were not prepared. Already tired from not sleeping the greatest last night and from being up early this morning my body could not handle what was going to happen.

Once at the hospital it took a while to be called back. Once in the back we met our nurse who was super nice. She told us all about what medicines they were going to give Kinsley and what each would do. Then she went on to explain the IV and the contrast that needed to be put in the IV. She asked if we felt comfortable. "Sure" I thought to myself. I am as comfortable as I can be with what you are about to do to my sweet baby girl. So I signed the paper that said they may do the procedure. It was supposed to be easy, simple, no big deal. Once the IV in we had the hard part done with or so we thought. I was not prepared. I was not ready for what was to come.

They wheeled my sleeping daughter to the back where the MRI was to take place. Kelly and I went to find some breakfast at the cafeteria. No big deal right? We just needed to get some food and then shortly after we got back we would see our baby, wake her up, and then head home. We got our food and brought it back to Kinsley's room. There we waited. We waited in the small confined walls that made her room. The longer we waited the smaller the room felt. The longer we waited the more I panicked. The MRI was taking longer then they had originally planned. I am still not sure if this is good or bad. The longer we waited the more I feared the worst. I still was not prepared for what would be happening next. I was still not ready to feel the impact of the coming events on my heart.

Kinsley finally arrived! She was back where she belonged with her mommy and daddy. The nurse had said she should wake up within a few minutes, we could feed her, and then head home. Five minutes passed and the nurse took the oxygen off of her nose. That would help her wake the nurse thought. She thought pulling the tape that held the oxygen in place would wake her. No such luck and within minutes of taking off the oxygen her oxygen saturation started dropping. My heart starts sinking. They stick the oxygen back in her nose and continue to let her rest. I start to feel at ease again. I tell myself its okay, but have a little more reservation now. I can not get my hopes so high. I will still be in good cheer though. I pace, stand over the bed, sit, text, and pace some more. Ten minutes pass. They try again. The nurse starts taking the tape off the IV sight hoping to stir Kinsley into an alert state. No such luck. They try to take the oxygen off. Numbers start dropping. My heart sinks even lower this time. Que pacing, freaking out, crying, and more. Que texting as fast as I can to muster as many prayers as I can for our sweet baby. My hands were tied. Nothing I could do would help my sweet girl. Rest and putting the oxygen got here back to where she needed to be. I start to feel better. This time less better than the time before. Still feeling guarded as to what is happening. This was not what they told me. This is not what I expected. I was scared. I was sad. This went on for an hour.

Finally my baby girl woke up! I will never love her sweet eyes more then I did the moment I saw them after this scary morning. Oh and that sweet, sweet smile when she heard her daddy's voice. I was not prepared for this mornings events, but that, that right there was priceless. It made all my fears float away. I knew that now I wasn't helpless. I knew now that I could do something. I could hold onto my baby for dear life. Because she had a rough time with they anesthesia we need to watch her closely through the night. I am okay with that. I may not get any sleep due to worrying about her, but it will be worth it to know that she made it through the night with no further issues.

If I would have had a window looking in I think I would have saw a panicked mommy and daddy. I would have saw them surrounded by lots and lots of people. All of those that said a prayer today would have been holding this mommy and daddy up. Keeping them from falling to the ground. If I had a window looking in on our days events I think I would have seen a father far bigger then my husband or I holding our sweet baby girl. Her heavenly father was carrying her through. He woke her in his time. Your prayers carried Kelly and I through. I could feel them. From the bottom of my heart "Thank you" to each one of you that prayed for us this morning. Weather you knew of the difficultly we were having or not, thank you.

Please pray for peace throughout the night. That I may come to terms with what happened this morning. That I may not worry myself sick over what could happen in the middle of the night. Please pray that I get some sleep. Please pray that we find peace the rest of the week also whiile we wait for the results. 

Advocating

Advocating is hard work. It is draining, tiring, exhausting some days. I will however, continue to advocate for my sweet baby girl until the end of time. We have had a rough go at this.

We have had Early On tell us that despite her diagnosis she doesn't qualify for care. I have now talked to every possible person in a higher position and she will finally receive the therapy she deserves. I have a baby who can not see. Who is not any where near sitting up at just over 6 months. I have a sweet little girl who still holds her legs up to her chest like she is in a fetal position. She is no where near ready to start eating solids. She can not even see where the spoon is. Yet they were telling me she wasn't able to receive services.

I also came across a website that on their very main page said that their goal was to get Braille bibles into of children starting at a very young age so that as they learned Braille they would have a bible and be able to read those stories that most kids grow up reading. When I requested one of these for Kinsley they denied my request. They stated that only 10% of parents actually teach there child braille and that since she isn't reading yet they will not send her one. I was upset. On their made page they said they wanted to get them into the hands of children early. I was trying my best to get her a bible just as I have given my other children a bible at her age. I responded by saying just as you read to an infant and they look at the pictures should not by blind child be given a bible that I can read to her and she can feel?Our bible will be in the mail soon.

Advocating will be my liefs work from here on out. I need to stand up to those who only give my daughter 50%. Only give half an answer, half the time, and push her off because they are  not sure how to deal with reality. I can only imagine what I will endure once she starts school. I can only imagine what this life of advocating will be like. I have had my taste and it makes me tired. It is what she needs. It is what she deserves. 

A Normal Day

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

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

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

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

Crazy Kids, Crazy Mom

Oh how much fun today was. It was a blessing. I have four truly amazing kids, but they are crazy. Lets face it they are. I mean they are all under the age of six. They are all very much like their mother and I am not so sure that is a good thing. This in turn makes me one crazy mommy.

Life never stops. I mean never. One of them is always doing something. One of them is always getting into something. One of them is always talk, crying, whining, or buying for attention. When they finally get tucked into bed, life doesnt stop. There is cleaing up to do, a husnand to spend time with, and work to get done.

Life never stops. This is a hard concept for me to grasp. I keep going. I sleep, sure, but even in my sleep I dream. Which means my brain is still going. I am not sure I know how to stop. I'm not sure I have the power in me to just take one day and do nothing!

Although today I was still going I tried to cut back on the "extras". Those peices of the house I really want to get done, but they aren't at the forefront of making sure this house looks clean. The deep cleaning, behind the scenes cleaning. Although always in the back of my head I took time to enjoy the kids.

We jumped on the bed. We tickled each other. We laughed. We snuggled up to a movie. We played Candy Land and even sat and read a ton of books. We built with blocks. Played pretend and so much more. It was amazing! I really do savor those moments with each of the kids. They are all growing so fast. Life doesnt stop. They are growing up before my eyes. Every day they get smarter, taller, heavier, and their love grows deeper. I am so thankful for all fout of my blessings. I am so thankful that they call me mommy.

Yes, I am a crazy mommy. I get very little sleep, I am everything to them and they are everything to me. I would give up the whole world for any of them. They are my babies.

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.

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.

HOPE came in the form of Blessings

Today has been a rough day emotionally. I've cried for the majority of the day. Feeling isolated and alone. No o e knows what I am going through. I show people the strong, take charge, non emotional side of me. I smile and at God will bring us through this. I believe he will. He will bring us out on top for his glory. It doesn't change though that I am human and that I feel sad. No one I know is blind. I have no one to share this experience with on a personal level. No one I know is raising a child with no vision. Who am I supposed to get support and advice from? Who am I supposed to turn to when a new challenge arises? It's been a rough day. Kinsley didn't sleep well the previous night and the older kids were up at 6:30am fighting. Everyone started the day in a bad mood. It was only going to get worse. I couldn't wait till nap time. Kinsley screamed a blood curdling scream unless I was holding her. She slept no more then twenty minutes at a time. Myla was also more crabby then normal. Tears and lots of them happened today. Just when I thought the day couldn't get any worse or better for that matter I went to get the mail. The little girls were sleeping. The big kids were playing nice. It was time for me to get some fresh air, walk to the end of the driveway, and get the mail. In the mail I found two little blessings. I never would have guessed these things were coming in the mail. God knew though. He knew that today was the day that I would need those words of hope and encouragement. The first one I opened was a card from Kelly's aunt and uncle. It gave me a message of hope. It said that God holds our lives in his hands like a precious stone, polishing it with challenges, choices, and changes. And in time we become shining reflections of HIS purpose, HIS promise, and HIS love. This is HOPE! This is what we will strive for. Even in our grief we want to be a reflection of God's purpose, promise, and love. I have put this card by my lamp next to my bed. These words will be my hope. God is just doing a work in our lives so that his Kingdom can shine. We may be kicking and screaming right now, but we will end up on the other side. It will be okay. Our other piece of hope came in the mail today also. This piece of hope was in an amazon box. I had to think about if I had ordered something or not. No I didn't think I did. If I had I didn't remember. Slowly I open the box seeing if I could jog my memory. I swear I didn't buy anything. Inside the box is a book and a note. The note stated that this person and church was thinking of my family and praying for us as e travel this road. The book was perfect. It is called Parenting Childre with Disablities: A Survival Guide for Fathers and Mothers. I've read the first 2 chapters already and love it. I'm not alone. Other parents have experienced similar feelings when hearing their child has a disability. I am super excited to get to the chapter on how to make our marriage survive when have a special needs child. Kelly and I aren't having trouble, but making sure we are sticking together as one now will keep it that way. Our vacation coming up will help us renew our identity away from the kids and as a couple. This gift showed me people care about me and my family. People are praying for us. People are sharing words of hope to our family. For all of these people I am thankful. Please continue to pray for us. Pray that we can stay positive. Pray that we continue to make our family strong despite this set back. Pray that we stay strong in our faith and let the Lord carry us through. Oh and a funny. Kinsley was screaming in her swing (not funny part) and I needed to quick vacuum. So I let her fuss. Once I turned the vacuum on she stopped and was smiling away. The minute I turned off the vacuum she started again. So I did an exleriment. Sure enough she loves the vacuum. She thinks it's funny. Thank you for your continued support, grace, and love. Danyelle

Love, love, love

Valentines day. Do I need to celebrate love and happiness? There is so much sadness in my life today. How can I possibly be happy and show love. Those were the thoughts that traveled through my mind first thing this morning. I needed to take these thoughts captive. I needed throw them out. Of course I need to celebrate love and happiness. I have kids, a husband, family, and friends. What isn't there to celebrate. With my new mindset I started the day. I got my energetic 5 year old ready for her very exciting valentines party. Got all the other kids ready and then headed out. Once home from dropping Ondrea off at school I had to make a choice. A. Sit on my butt all day and be sad. B. clean like a mad women and let the kids do whatever. Or C. Spend some time with the kids to keep my mind from bringing me to that sad place. So I played. I blew up some red balloons. I drew hearts on the, and wrote each of my childrens names. One on each balloon. We tossed them in the air, played catch, and then rubbed them on our heads to make our hair stand up. It was a blast! I'm so glad I chose to play. I don't want my kids to se me down or sad all the time because of Kinsley. I need to be strong. We had Parents as Teachers come out for an hour today to do some play activites with Kinsley. It was fun. They will continue to be a huge support for our family. It was now time for lunch. Then the kids went down for a nap. This is where my day went down hill. In the silence I sat. No one to talk to. No one to play with. Silence. My thoughts began to get worse. My thoughts turned against my choice to be positive. Why me Lord? Why me? I want my baby to see my face. I want her to see her own beauty. Lord why? Lord wake me up from this nightmare I am having. What did I do to make her this way? The thoughts kept coming. I was feeling worse. I sat. At in silence with my thoughts. I cried. This journey is hard. I need to walk it with the right light. And so I did. I opened my bible and there we Psalms 23. As I walk through the valley of the shadow of death I will fear no evil. I dont HAVE to be afarid of this blindness. His rod and his staff they comfort me. These are comforting words. He knows I'm on this road. The Lord brought me to it, but he is not making me do it alone. Getting into his word every day, talking to friends and family, I am surrounded by love. God loves me. God loves Kinsley. I thought I would tell you all the reason why I love my husband and each of my children. Kelly - He is my rock. He provided for this family at all cost. He cares about his children. He loves teaching them new things. He is a great friend and even better husband. Ondrea - My first born. A special kind of love. Strong willed yet super sweet. Her love of music and dancing is beyond my knowledge. She has a heart of gold and a love for God that anyone would be jealous of. Parker - My only boy. A special kind of love also. Sweet and tender hearted. He loves all people all the time. He feels bad when people get hurt. He helps with dishes and with laundry. He will some day make a great husband, Myla - My tornado. Full of life and energy. She is funny. She loves to talk. She is so independent. She has the best snuggles, hugs, and kisses. I love her protection over her sister. Kinsley - I love the smile on this sweet baby girls face when she hears my voice. I love how she beams ear to war when she knows it is her momma talking to her. It makes me happy through all this sadness. Love! You never know when your world will turn upside so love! Love, love , love!