I statements

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

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

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

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

Weak, yet so Strong

I suffer from depression. It started out as just a seasonal thing. When the winter months hit I could feel myself in a sad state of mind all the time. I just couldn't get over things I would normally let slide. I could never feel happy because the sun was missing and the days were short. I felt so helpless, so weak. I couldn't overcome this sadness. I must have been weak right?

Then my seasonal depression turned into Post Partum Depression after my youngest two girls were born. With Monkey girl my PPD was so strong those first 6 months. I was helpless, I cried. I was sad, I felt like I was a horrible mother. It meant I was weak right? I had to seek the help of my doctor, who in turn prescribed me the right medicine to help me get through those times. With Kinsley I knew that I would fall into that PPD and to top it off my seasonal depression would make it worse. I talked to my doctor ahead of time and decided we would start on depression medicine before our sweet baby girl was even born. I so thankful that we were going to be proactive. I never would have guessed the PPD and the seasonal depression would have ganged up on me so hard. It was as worse as my depression has ever been. We adjusted my medicines a few different times. I felt defeated, I felt weak.

These feelings of being weak amplified after we found out about Kinsley. I fell straight to the pit of depression. Farther then my medicine would help. Farther then any one will ever know. I was weak. I brought into the world a baby that would live her life with a disability that would affect her everyday. How could I do this? Why did I want just one more? How could I have not known she was going to have to live her life this way? So many questions have raced in and out of my mind. In and out of my heart. I felt so weak. So helpless. There was nothing I could do to change back the time. There was nothing I could do to give my baby back her vision. I have been holding these fears, the what ifs, the worries for the future deep in my heart. I have been carrying the burden of the thinking its my fault in my heart. I want people to think I am fine. I want people to think all is well. Truth is I am weak. I can not do this one my own.

I learned something a week ago. I am weak yet so very strong. I can be strong because I have a heavenly father that loves me so much that he will carry my burden. I can claim victory over every issue in my life. I can claim victory over depression, over fears, over worry. I can claim victory in HIS name because he loves me. Because I believe in him he will help me overcome anything I ask him to help me with. One thing I have learned with this. I need to proclaim it to the world. If I just keep to myself that I claim victory over depression, over blindness, and other areas of my life I don't believe. If I say it out loud, on facebook, here, and people read it AND I believe it can happen, the world better watch out! I have felt so much better in the last week since doing this. I have learned that if I don't do this; if I don't claim victory I tend to look at the bad side of life. I start to focus on the things that can get me down. I don't want to feel down. I don't want to be at the bottom. Its not fun there. I know I am weak. I know I will fall. I know that life is not going to be perfect or easy. I know the affects of Kinsley's blindness will never go away. We will always struggle at some point. I will tell you though, I can shout to the world that I CLAIM VICTORY!!! I can pound all of those things into the ground because I have a savior that loves me and cares about me enough to take the burden of this life.

While I sit here listening to the amazing wonder of a the storm passing over head I feel peaceful. The thunder and lightening are those feelings the devil is trying to get me to believe. He is trying to get me all angry and sad. The rain that comes down is washing it all away. The rain washes all those fears, all those insecurities away.

Please continue to pray for our family. My asking for prayers will never end. Praise the Lord with me that we finally got Early On and the like all on the same page. The vision consultant will be out here tomorrow. Pray that she will get us set up on the right path to best help Kinsley grow and develop as close to her peers as possible without her vision. Please continue to pray for Kelly and I. Kinsley's diagnosis is still a struggle. One that we are both handling in different ways. May we give each other the space to grieve in our own ways and yet may we come together and hold strong to what we both know. God will carry us through.

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.

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

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.

Tears, Prayers, and Hope

Today made our reality official. At 9:15am we went to the eye doctor. In the exam room i felt my body begi to fill with fear. My heart was in my stomach and mu hands were shaking. This was by far the hardest moment yet. Waiting. We got pulled from the waiting room rather promptly. We were in the exam room where the nurse began to do the initial testing of Kinsley's eyes. The nurse talked, charted, shined some lights, move some objects, and repeated. Hopeful to see some change in Kinsley's eye sight wage was just as disappointed as we were. As she got ready to leave she said the doctor will be with you shortly. we waited yet again. We waited for the official news that was going t change our life forever. Thirty long and painfully agonizing minuts lapsed. Finally we hear a knock,knock, knock. If my heart wasn't already in the lit of my stomach it was now. If my hands were not trembeling they were now. If I wasn't already trying to choke back tears I was now. The knock on the door meant there was no turning back. We were about to be faced with reality. In walks the doctor. She smiles. She shakes our hands and tells us how nice it is to see us. Then she asks the question we knew we would hear. "How are her glasses doing?" When we told her there has been no change you could see the worry come across her face. She knew what she was going to have to tell us. She then proceeded to test using all th same methods as the nurse. Kinsley once again failing all of them. The doctor kept watching. Watching in hopes that we may see one slight little hope that there is something there. Watching. Hoping. Then came the news. She startd by saying we would need to take Kinsley for an MRI. The MRI would show why she could not see. Not that it will fix anything, but we need to see where the damage is being done. Then she told us the news. Kinsley culd not see. She was blind. I held myself together. I could not let this doctor see that I was weak. I could not let her know she has just shattered my whole world. She took away hopes and dreams. I finished listening to her talk. Hopeful we would make it through this journey she said we didn't have to do it alone. She told is there are resources, support groups, and people available to help guide us through this uncharted waters. Again she remained hopeful. Hopeful that if Kelly and I surrounded ourselves with the right people we would survive. I'm not so sure. She liken this journey we are on to facing a fear. She said a person who hates public speaking tries to avoid it, but once they do it a few times it gets better. My the times they have done it a bit they actually enjoy it. She said on this journey we will hate the first few weeks or months. We will find them hard and want to try to avoid the truth, but after we have traveled this path a while it will become more tolerable. Tolerable enough to the point where we wil, enjoy the place this journey is taking us on. She shook our hands and left. Out in the parking lot I placed Kinsley in the van. I hugged my husband and cried. My world had been crushed. My world had been thrown of this picture perfect track. I needed his embrace. I needed to feel his warmth and comfort. He has been my rock of strength through this. He is my partner, my love, my support. He was holding me up when I wanted to just collapse to the ground. As Kelly went back to worm I headed back to my other children. They were at my brothers house. Once there I cried some more, not realizing how hard those words would be to hear. We knew it was a possibility. Why was I letting it get me so sad. I got some snuggles from my nephew. (seeing as my brothers kids loves Mario I will refer to his childre as Mario characters) My nephew Luigi snuggles. He is the sweetest boy. He loves Kinsley. And to say he loves Kinsley is an understatement. I got the pleasure of taking Luigi to school where he talked my ear off about the valentines party he was going to have. As I said good bye he played our special little game. He said "bye. I not love you Aunt Dany" and he giggled a sweet giggle. It brought tears and a smile to my face. As the day poured on more people were called, more people offered support and prayers. More tears were shed. More questions were asked and more dreams were grieved. It will take time to heal. I need to deal with reality. I need to grieve. I ended my day by going out for some drinks with my sister in law and a family friend. There they allowed me to share a piece of this pain I am carrying. There they were the best friends I could ask for. There I was able to talk about my pain or the weather. They let me be me. And the loved on my Kinsley! It was nice to they wanted to take the time to spend some time with me on o e of the hardest days of my life. It was nice of them to want to enter into the pain that I'm carrying. I feel as though they each took a piece of my pain with them. That makes my load a little lighter. I am thanking the Lord for these amazing women. They love God, the love Kinsley, and the love me. They touched my heart, sometims the pain of others lives is to much for us to want to enter into. They were not afraid. They entered. They entered with love and support. For that I am thankful. Support has been given today. Resources have been found for us so that in this time of grieving we dint have to do a ton of research. Prayers have been offered for us. Smiles have been given. Hugs have been given. Love has been given. By those things I will rest in peace tonight. Knowing my God loves me enough to carry me through this pain. P,ease continue to pray for my sweet baby girl, our family, and friends and we experience a journey like none we ever imagined we would face. Danyelle.

Angels Over Me.

It was a cold yet beautiful day here today. The sun was shining brightly. Sunday's T our house always start off the same. I get up bright and early to get all four kids up and ready for church. Kelly gets ready and does his thing. Off we go. Today we didn't have our normal pastor preaching. We had a seminary student preach. I wasn't sure what to expect. I am a creature of routine and if that gets messed with I'm not a happy camper. In the after math of it all am I glad that I listened to this man preach. Our message today was about being in community with one another. About taking the time to care for and do life with others. Sounds good right? We are missing something though. More times then not we rush and rush and don't take the time to actually do these thing. This is how Kelly and I have been feeling. We feel like some days we are walking this road alone. Some says we are succluded from the real world because the real world doesn't know how to handle the pain and suffering we are experiencing. This pastor in training brought up something that I have struggled with all week. As a nation we often stop to say "how is it going" to someone without wanting or having the time to listen to the answer. We invite a person to open up and quickly shut them down by looking for the next person to talk to or not really listening. I feel this way lately. I get angry when people ask me how I'm doing because I know they dint really want the truth. The would be satisfied with a fine, or even great. The truth is not that. We are struggling down a path we never thought we would have to travel. If you want to ask me how I'm doing then lets talk about the truth. I can't hide behind a "fine" or "great" forever. And not only did I feel like this message was telling others about how I felt deep inside but it was also reminding me that if I don't have time to hear what's on someone's heart I need to not ask how it's going. A simple "It's nice to see you" will do just fine. This message touched my heart in more ways then one. I felt like the Lord was saying Danyelle I hear you. I know this is what your experiencing. It brought tears to my eyes. The Lord was doing a work in my heart today. I believe I heard this message today because tomorrow we go back to the eye doctor. Tomorrow will determine our fate. Tomorrow will be the decision on wether or not my sweet baby girl can see. Many tears have been shed today. It's truly an emotional process. But I feel oddly at peace thanks to this message. I know I have a community of supporters lifting us up in prayer. I will be heading to bed peacefully tonight. Knowing the Lord holds me in his arms. Knowing that no matter what the doctor says tomorrow Kinsley is mine. More importantly Kinsley belongs to the Lord and he is holding her tight. Tears will continue to be shed and that's okay. They are tears of comfort knowing I won't be alone. Please pray for us at 9:15am that is when we will be in the doctors office. Please pray for peace and comfort as we walk this road.

Rough Weekend (take 2)

I'm going to play catch up from the weekend. The iPad was in being fixed and therefore I had no way to update the blog. It was a rough weekend. A roller coaster ride of emotions. Kelly is working on a top secret project that we can't tell about yet because the details aren't final. We are excited about this top secret porject though. It will be great! Once the final details are in place I will make sure to spill the beans. Friday we took the iPad to be fixed (Kelly pushed it off the counter and the screen cracked). After dropping it off we went into the mall. It was overwhelming. All of the states and comments were unbelievable. There were some comments about her being cute and some smiles which were recieved with kindness. It was hard to hear the negative comments. Leaving the mall we had a few other arrends to run. Then we headed home. Saturday was about to be a busy day. The morning started with Kelly heading to family friends of ours to work on buisness paperwork. He owns his own buisness and needed to change some paperwork. After doing that he came home. We got all of the kids ready to go. We were heading to the camper and RV show in Grand Rapids. The kids were so excited. They can't wait for it to be summer. They were on the quest to find the perfect camper for our trips. We stopped for lunch before we headed out. I mentally prepared myself during the ride that we would receive comments and stares. I didn't prepare myself enough. They were out of control. Not more then five feet in the building and they started. Amount the comments were people thinking they were fake, not believing we could know she needed glasses this young, and more. People pointed and stared. It was hard. It was emotional. My poor baby will have to endure this her whole life. While as an older child and adult she might not get the comments and stares, until then it will be hard. By the end of our camper looking experience I was ready to go home. I was already super excited t be getting my iPad back. So we headed towards the repair shop. I walked in, told them I was there to get my iPad and proceeded to get out a check. Then my already emotional and exhausted day got worse. The man behind the counter informed me that they do not accept checks. What? No checks? How was I going to get my iPad back. He then told me they would be open again on Monday if I would like to come back with cash or a credit card. I was mad. I was sad. I cried on the way home. Not just because of the iPad, but because the whoe day had exhausted me. Once home I collapsed in my bed at 7pm. I was depressed. I have been depressed. I didn't move from my bed. Kelly got the kids bathed, fed, and in bed. I laid with Kinsley in bed. I didn't get out. I didn't want to move. I stayed in bed only waking to nurse the baby. Sunday started with me not getting out of bed til 9:45am. Kelly was held responsible for getting the kids up and ready. Once up I threw on some clothes and we went to church. Church is a safe place for us. We are surrounded by support and love. It is also a place that yesterday caused some emotions I wasnt expecting. I've come to hate the question "ow are you?" Right now that is such a loaded question and if you don't want the loaded answer then you should not be asking. I also felt the need to explain my faith. People shared the the Lord can heal Kinsley. I completely agree with that statement. I know with all my heart that the Lord can give my sweet baby girl her vision back. I also want to be prepared for him not healing her and the possibility of her being blind for her whole life. I do not think this makes me a bad person. Some say I just don't have enough faith. After church I was ready to come home and once again collapse. Collapse I did. Kinsley and I sat on the couch and snuggled, both falling asleep. Once we woke up we needed to head over to the inlaws for a super bowl party. Here is was confronted with yet more fusteration and emotion. Here I was faced with people once again saying look, she can see. It's hard when others do not want to accept what is becoming our truth. The party was done and we headed home. We put the children in bed and I got to work. The house needed much attention and I had been slacking. Monday morning brought some excitement. I was going to get my iPad back and going to see my nephews! This morning we headed to my bothers house. I dropped the kids off and was able to pick up a friend. This dear friend is vital in my life right. She is a support that I wouldn't know what to do without. She listens to my many emotions. She watches my kids. She is just all around an amazing friend. With all I am going through right now she is probably a better friend to me then I am to her. She doesn't seem to care a whole lot. She just continues to support me. On our drive to pick up the iPad I was able to share with her our experience at the camper show, tell her how I feel about the question "how are you?" and much more. The whole time she just listened. She offered words of encouragement and offered continued prayers. Back at my brothers I was able to enjoy some time with my nephews. They are so stinkin cute. Then it was off to Chuck E. Cheese for some pizza and fun! The kids enjoyed it and it was a nice break for myself. I also talked to the eye doctor on Monday. They said we should have seen some sort of improvement within the first week. Since we are not seeing any they would like us to come in for a recheck. We will do that a week from today. We will then schedule an MRI. Please continue to be in prayer for our family during this time of uncertainty. Please pray for healing in Kinsley if it is the Lord's will. Your support and prayers are being felt. Please continue. Danyelle

Hard Pill to Swallow.

To was a deep valley in our journey of of vision problems. I have cried on and off. Here is why: Our day started out pretty much as normal. Everyone got ready to head to school, breakfast had been devoured, clothes put on, and everyone was ready to go. Today was a little different in that I dropped the middle to children off by my mom then proceeded to take the oldest to school. From there I took my sweet baby girl home. Why were just the to of us going home you ask? Very good question. Kinsley had her Early On evaluation this mourning. Some may not know what that is. It is a group of people that work with our county to offer free services that aid parents in taking care of children with disabilities. They came out today to give Kinsley her official evaluation. Once at home I paced the floors waiting for these people to get to our home. I was nervous. We are fully aware that Kinsley can experience some delay in her other areas of development, but didn't want to hear if she was significantly delayed. These ladies filed into our home with their bags and notebooks. The also brought big smiles and warm voices. They were all so sweet it helped to calm my nerves. They all sat down and we got started. Lots of questions were asked, note were being written, and assements were being taken. The more they prodded for answers the less confiedent I was feeling. I felt like I wasn't doing enough for my sweet baby girl. One by one these women told me just how far behind my sweet girl was. With an overall development of a one and a half month old I was sad. At three and a half months I was hoping she was doing better. The vision specialist said that children this age learn 80% of things through visual stimuli. With her vision being compromised that is why she is behind in other areas. Heartbreaking, but the truth, I k we there was no whee else to turn. We needed the services Early On has to offer. Talking to each on of the ladies we set up goals that each of them would work with us on. I say us because they are teaching me just as much as they are teaching Kinsley. We also decided that Kinsley would benefit best with 4 hours of therapy a week. We will be seeing each of four speciality for one hour at a time. We will be seeing a speech therapist, physical therapist, occupational theraist, and the vision specialist. That a lot of people on and out of our house. I am grateful for the support we can be offered through them at no cost. This is a blessing. I'm just sad that I need these services for my baby girl. After all the goals were set and the evaluations were done I was asked a very important question. "What is your support system like?" I said its great. Our parents and siblings are awesome supporters, but we also have a church family at are always there for us. Wondering why she aged such a question she responded like this "Caring for someone who has a disability is hard work. Kinsley will take a lot of time and energy. You need a support system that will feel comfortable taki care of her no matter what her vision turns out to be. You need to be able to trust someone(s) so that you can get out by yourself, with your husband, and with your other children." For those of you that know me know how hard it is for me to let go of control. It will be even harder to let go of that control when it comes to care for Kinsley. Not wanting to burden any one else with her disabilities and extra care I will be more hard to convince I need a day away. I am thankful for a GREAT support system. I know many family and friends praying for us. I know so many friends and family that will help if we need it. I have no doubt that if I need to call on someone they will be there for us. I'm preparing myself for these things now. We leave Kinsley and the rest of our children at the end of a month for a weekend get away. It is scary, but I trust the people my children will be with. I've been mourning. Mourning the way I envisioned life for Kinsley. I've been asking God why us? Why my family? Why my sweet baby girl? I am sitting and listening for his answer. I feel it's okay to grieve these things, it's okay to ask God questions. I know he has a plan for our family. I know he has a plan for Kinsley. He is in control! He is the l Ought of our world and we need to stay focused on him. Please continue to be on prayer for our family. We are mourning the way we envisioned life for Kinsley. We are mourning the delays she is experiencing, but we have hope. Hope in the Lord that she will live a full and happy life. That she will bring great joy to many people. Danyelle

Laughter, warm hearts, and the dreaded nerves

With a title such as this I feel like I should be writing a comic book. Something along the lines if the dreaded nerves were on the rise today. Hoping to take momma bear down, but laughter and her side kick warm heart moved in to save the day! So as you can see I am not a comic book writer. I will, however, tell you about all three things. My mornings here have been surprisingly peaceful. I have had the time to enjoy my kids getting ready in the morning. This morning was a blessing. As my oldest was getting ready for school she said "Mommy, Mrs Sherrie loves me just like she loves the boy and girl at her house that are her kids. And mommy, the warms my heart.". Oh child, you just warmed mommy's heart to. How sweet of her to say that. For those of you who don't k ow Mrs. Sherrie she is one of the sweetest, most generous teachers ever. She is a special education teacher who truly loves her job and her students. This is our daughters third year with this teacher. mrs. Sherrie is amazing. So ther it is warm heart. Now on to laughter. My brother and his wife will ask why I didn't tell my nephew not to do the following and to that I will only responde because I'm his aunt. Picture this: My daughters bed is pretty tall with an even taller headboard. The headboard has shelves upon which you can set things or stand on. Now picture these super cute four year olds standing way up in the headboard. The twinkle in their eye, the smile on their faces, the belly laughs as they know what they are doing is probably not okay. The. Came the jump. They both jumped onto the mattress of the bed and laughed hysterically. I could not tell them now. I laughed so hard. It was so cute to see them jumping off this high place. Their goal was to knock down the clothes I was trying to fold and put away. They accomplished their goal with might roars of laughter. It was just what I needed. My son and nephew provided me with the best possible therapy today. They allowed me to laugh at something silly. They allowed me to enjoy being a kid. I also got to enjoy candy land and play dough! My nephew loves his cousin Kinsley. And that might be an under statement. He adrores her. If he is around everyone else can forget holding her. In that sweet voice of his and a smile on his face he said "Aunt Dany, I love Kinsley's glasses I want to keep her." once again my heart melted. Laughter and a warm heart did a great job at keeping away the nerves for most if the day. Why am I nervous? Well I am nervous because Early On is coming to the house tomorrow. They will be eveulating Kinsley in speech, physical development, and development. It's only nerve wrecking because it makes it seem more real that she has needs that I can not meet for her in my own. I don't want to be told I am parenting her the wrong way or that I should be doing more. Early On coming out also brings feelings of joy. I will get advice, resources, and help. I have never raised a baby with limited to no sight and need all the advice from professionals that I can get. If you get a chance say an extra prayer for us tomorrow. That I won't be nervous. That I take everything that is presented before me tomorrow in a positive way. Pray for Kelly as he will be at work and not able to attend. Help us to make the right choices based on the advice of the professionals coming to work with us. Danyelle