To get back to the home page, click on Kaitlyn's Korner above!
Monday, January 23, 2012
Apples of my Eye
Today has been a really tough day for us. Kaitlyn is doing okay. She is resting but with a high heart rate (130s/140s) and fever. She has been waking up every night around 3am coughing and/or irritable. We have been giving her morphine only as needed, such as last night.
Still sleeping most of the day
We have been mentally "preparing" ourselves for Kaitlyn's passing. I know that there is no way to truly "prepare" yourself (I know we will be beyond devastated) but we have accepted the fact that it is going to happen.
Over the past few weeks, we have noticed that Kaitlyn has been less interested in her books and videos and doesn't engage/focus well as she used to. We were told that at the end of life often this happens. That there could be a disinterest in what she normally likes. What we didn't consider was that she may be losing her sight.
This morning I held a camera up to her eye (with the flash on) and took a picture. She didn't even blink. I waved in front of her face- nothing. I opened all the blinds to let in lots of sunlight and she didn't even squint in the least bit.
Didn't even blink or react to the camera
It's crazy to say but I was/am not prepared for this. I never imagined that she could go blind. It hasn't been confirmed but it's pretty obvious that if she CAN see, it's very little. My heart is broken for her. I am so worried that she is scared or confused. It seems ridiculous that this would really bother me given that she could pass away any day. Knowing that when she is ready to go, if I am holding her in my arms, she won't be able to see me just crushes my heart.
I know that God made Kaitlyn the way he did for a reason. To touch people's heart and lives with her life and to learn to trust fully in God even when we don't always understand why.
I can't imagine what she is going through but I will comfort her and talk and hold her so she can feel my love, even if she can't "see" it. Please pray for her comfort and peace as her body changes as the disease progresses.
You can see how big her liver is (the protruding part to the left of her G-tube)
Kaitlyn and Cole are the Apples of my Eye. Here is a video from today that made me smile. Among the heart wrenching realization that Kaitlyn is losing her vision, Cole brings so much blessing into our lives and has a gift for knowing exactly when we need a smile.
My heart is breaking for you guys as I read this update. I am so, so sorry. We have not and will not stop praying for Kaitlyn and for you guys. Sending all of our love your way. The Russells
My heart breaks for you every single day. Each time I pray for Kaitlyn, I ask God to take any pain from her and to let her be at peace. Even if she cannot see, I know that she can feel all the love from you, Chip, and Cole. She can hear you and feel you and is comforted by it. And she has touched so many lives! I am one of those lives. We will continue to pray for her and for you all. Know that we love you and precious Kaitlyn.
When one sense weakens or fails us, most often others increase to compensate. Kaitlyn feels your love and knows you are there caring for her. If you lost your sight tomorrow, you would know her love whether you could see her or not. I can only imagine how difficult this is for you, but never doubt that Kaitlyn knows your love, feels your comfort, and one day you will all rejoice in it together with no pain and no tears. God's comfort to all of you, and especially to your precious angel.
Oh Deanna. How could you be ready for this? No mother or father is ever ready to say goodbye to their child in this way. You are not crazy at all. I read that at people can hear all the way up until the end so your talking to Kaitlyn and comforting her will help her not to be scared. I am so so sorry that you all have to go through this. You are amazing and Kaitlyn is a gift to everyone she touches. That being said this really stinks!
Even if she may not be able to see, she knows you are there because you always have been there for her. Find comfort in knowing that she has always felt and known your love from her first breathe. You are a awesome courageous woman and mother. You are all in my prayers. The Good Lord decides for us, faith is all He asks from us. Put everything in God's hands.
I am so unbelievably sorry that you have to go through this. My heart is breaking for you. It is so obvious how much you love and care for Kaitlyn. I am sure she can feel all the love you have for her and is comforted by it. My thoughts and prayers are with you always.
Your beautiful Kaitlyn can hear you, feel you and know your endless love even if she can't see you. I have been reading about your incredible family for several months. I have shared your life stories with my own family and together we pray for God's gentle hand on you all every day. What a blessing your children are! And how very blessed they are to have you and Chip. Your family's unity, love and strength moves me. As Kaitlyn passes into the Lord's loving arms, we continue to pray for her, you and your entire family. Thank you for sharing Kaitlyn with all of us.
So many prayers offered for each concern. Your love is not defined by sight; your precious hears and feels and knows your great love for her, a love that anchored in your heart long before your eyes beheld her.
Maybe the light from the camera or light from outside didn't phase her because she's already seen and started walking towards the lights of heaven. Your story is heartbreaking but you still some how show all of us how to be better parents and Christians.
Prayers for such a wonderful family and sweet little girl. As a new mom of a little boy about cole's age, I don't know where you find such strength. Your story has truly touched my life and I'm continuously sending prayers your way. I admire you all. KaItlyn is such a fighter. I hope cole continues to make you smile though it all. <3
She may not be losing her sight, but she maybe getting ready. I know it's hard to think about, but it could be the morphine or it could be her letting go. This happened to us too with Gavin.
I believe as Kaitlyn passes from your arms to God's arms, she will be able to see you as she's never seen you before. She will be able to not only see your physical presence but also more importantly your inner beauty and your heart.
Dear Heavenly Father, When Kaitlyn returns to Your arms, please give Chip and Deanna the miracle of feeling your presence physically, spiritually, and emotionally. Amen
Just as we, as parents know/sense when our children need us, I have no doubt that Kaitlyn knows you are with her and how very, very much she is loved. The bond/connection between parent and child goes well beyond the senses. Kaitlyn feels your love and is drawing her strength and comfort from you, Chip, Cole and the entire family. I continue to pray that God is with you all at this time and my heart is breaking for you. God bless you and your family.
God bless your family. I've never met you, but a friend posted a link to your blog on Facebook, and so I started to read your story here. You seem like wonderful people and I am so touched that you would share your story in this brave way. From a caring stranger, a wish for strength and comfort for you, your precious daughter and all your family.
I found your blog on one of your neighbor's Facebook page. You are such strong and amazing parents!! Kaitlyn is such a cutie! I pray for peace and comfort for all of you. Find comfort in knowing that when a baby is born they can't see well but they know their mommy and daddy and find comfort and love in them. I am sure Kaitlyn is finding comfort and love in your arms.
Your story has touched my family deeply. There really are no perfect words of comfort, but I pray that you will be comforted by God's presence with you in the midst of this seemingly impossible time.
Kaitlyn's story has touched me. She seems to have such a wonderful spirit and she is so beautiful! You as parents, are showing courage and strength and have touched so many lives already.
I can't even comprehend what you are going through and I pray for God's loving arms to wrap around you, your family and Kaitlyn each and every day. God always has a plan and we never know what that plan is but God is good. You have to always remember that.
I read your blog every day and pray for the entire family and especially Kaitlyn every time you come into my thoughts. I found your blog posted on a Facebook Friends page. I can't write the right things down on paper to comfort you but I pray for your family every day. God Bless Kaitlyn.
I am sure hospice has everything taken care of for you your sweet kaitlyn. I was just thinking about anti-anxiety medications such as ativan ect.if you feel she is scared or such. I am so sorry that she has to go through this. She is such a beautiful princess. I will keep praying for your family. I found this blog through facebook. Kaitlyn's stregth comes straight from her parents. You just keep being strong for her !May Peace be with you.
I found your blog through s Facebook friends post. That was over a week ago and I am now checking on how you and sweet kaitlyn are holding up. As a mother myself I can not imagine what you are going through. I greatly admire your strength and I know kaitlyn does as well. She is so blessed to have such a dedicated loving mother and even though she can't see you I know she can feel your presence. I wish I could offer the perfect words for you but all I can say is that I am praying for you and Kaitlyn and your family. Sarah Cochran
Kaitlyn knows you and feels your comfort thru all her other senses. If her sight is gone I pray that she sees images of you guys, her angels here on earth and heavenly angels who are holding her as well. We pray the Lord's comfort on you daily and for peace that surpasses understanding.
I found your blog through a friend. My daughter was the 3rd girl in the world diagnosed with NP Type A back in 2005. She was the 3rd girl to be transplanted with stem cells at th University of MN. I'm reading your blog and feel your pain. I'm so sorry you have to go through this.Please know even though I do not know you and your family I will pray for strength, wisdom, and comfort. May my angel look down on your angel. Sending many prayers your way!
Julie, I read your post as I attempt to find out more about stem cell treatments for children. Can you tell me more about what was done for your angel? MikeStemCL@gmail.com
Erin has shared your blog with me and I am keeping your family in my prayers. Your children are beautiful. Thank you for sharing your thoughts and feelings on this journey, that none of us would wish for. The courage of you and your husband is humbling and I am sure everyone who has taken a step with you on this difficult path will embrace you with love through their prayers. Your darling daughter is already an angel on earth. much love.
As I sit at my desk taking a 'break' from work to browse Fbook.. I see your story on a friends page. In a word, WOW. Wow, because C and K have amazing parents. Wow because the two of you were blessed with beautiful special children. Wow because the support around you shines through in ever single comment. And most of all WOW to your strength...you certainly have it and we should all pray that if we were faced with similar heartaches we could face them as you have. God bless to your entire family, your story will ever remain in my heart.
Deanna--I don't know if you remember me but I am Tricia Coleman's younger sister. We cheered together in high school! I am so saddened to hear of your little girl and my husband and I have included Kaitlyn in our evening prayers every night. Children are closer to God than any of us and I hope when her eyes are open or closed she sees the angels among her welcoming her home. I bet they all look like you because that is what she knows and loves and God would only do what is best to make her feel at home. You will always be the peace in her life and you are such an incredible woman. We are all praying for you and your family here in Richmond. I work in the children's industry and will do by best to raise awareness and funds on her behalf. God bless...
I found your post through a friends fbook and I can only say this you guys are very strong you have two beautiful children. I have seen. Few post and I pray for your baby girl and your family every night god has a plan for everyone even though we don't always like te way things go. Go has given the strength to you and your husband and ur family to accept this reality life change and only the the best hope I out there that she makes a turn around I pray for your precious baby girl and your family
I don't pray too hard too often...but I've been praying for Kaitlyn, and the rest of you. My heart hurts thinking of what you are going through right now. I am certain she feels her family close, and knows you love her--always, in all ways. What a blessing Cole is--everyday, but ESPECIALLY now.
I found your story on a friends FB page and have new following your story for some time now. I pray everyday for you and your family. And admire your strength and courage. Your updates bring tears to my eyes and also make me smile when I see your beautiful pictures and videos. Thank you for sharing your story. You have made me a better person and I admire you so much. Prayers and love from Waxhaw NC.
Your story is an inspiration to everyone who has had the privilege to share in it. You are the most incredible parents and the love you have for Kaitlyn is undoubtedly reaching her. Our family sends our prayers for each of you - may your strength and faith bring solace in these days.
It is truly a sign of your deep love and faith in the Lord that you continue to look toward Him in the face of such tremendous suffering. So often it is most difficult to watch those we care about most in pain. What a beautiful sign of God's grace and tender love that you know to turn to Him and trust, knowing that He loves your daughter even more than you do. I'm not sure if you've heard of or read the book Heaven is for Real by Todd Burpo, but I highly recommend it. May the Lord continue to draw your family ever closer to Him and shower His blessings upon your daughter and all who care for and about her.
I am another who found your blog through a friend. You are a remarkable witness and I am praying now for strength for you, Kaitlyn and all your loved ones. Without a doubt, you have prayers across the country tonight.
The video of you and Cole is so sweet :) And Kaitlyn's beauty is seen in each picture :)
You all have been in my heart since reading your blog for the first time... and, this morning, my thoughts have been continously turned toward you. I, again, cannot imagine your pain from watching Kaitlyn's body in struggle. You are in my constant prayers. I know that Kaitlyn hears you, and feels you, and still sees you with the eyes of her soul... the amazing person that you are to her: Mommy, the most beautiful, loving, patient, strong, enduring person... the one who is filled with the things that make her spirit smile :)
Praying for Peace and Comfort for Kaitlyn and for you all, Misti
I saw this posting on FB. God Bless you and your husband, you are amazing parents!! You will always, always, always have that precious baby in your hearts!!!!!!!!Her spirit will always be with you.
We don't have to see God to know that he is there to love us and comfort us. I know there are no words for comport during this difficult but rest assure she knows she is being loved. Romans 8:28 all things come together for good for those who love the Lord.
Over the past few weeks, we have noticed that Kaitlyn has been less interested in her books and videos and doesn't engage/focus well as she used to. We were told that at the end of life often this happens. That there could be a disinterest in what she normally likes. What we didn't consider was that she may be losing her sight.
She can hear you and knows how much you love her and that comforts her. You are all in my prayers.
ReplyDeleteWhat a joy Cole is!!!
ReplyDeleteSending special prayers for Kaitlyn.
Nanci & Mike
Deanna and Chip,
ReplyDeleteMy heart is breaking for you guys as I read this update. I am so, so sorry. We have not and will not stop praying for Kaitlyn and for you guys. Sending all of our love your way. The Russells
Oh....and Cole is SUPER cute! :)
DeleteKaitlyn doesn't need her sight to see that you love her and care for her and are helping make her journey as comfortable as possible.
ReplyDeleteAnd Cole is such a cutie!
Prayers to all of you.
My heart breaks for you every single day. Each time I pray for Kaitlyn, I ask God to take any pain from her and to let her be at peace. Even if she cannot see, I know that she can feel all the love from you, Chip, and Cole. She can hear you and feel you and is comforted by it. And she has touched so many lives! I am one of those lives. We will continue to pray for her and for you all. Know that we love you and precious Kaitlyn.
ReplyDeleteWhen one sense weakens or fails us, most often others increase to compensate. Kaitlyn feels your love and knows you are there caring for her. If you lost your sight tomorrow, you would know her love whether you could see her or not. I can only imagine how difficult this is for you, but never doubt that Kaitlyn knows your love, feels your comfort, and one day you will all rejoice in it together with no pain and no tears. God's comfort to all of you, and especially to your precious angel.
ReplyDeleteOh Deanna. How could you be ready for this? No mother or father is ever ready to say goodbye to their child in this way. You are not crazy at all. I read that at people can hear all the way up until the end so your talking to Kaitlyn and comforting her will help her not to be scared. I am so so sorry that you all have to go through this. You are amazing and Kaitlyn is a gift to everyone she touches. That being said this really stinks!
ReplyDeleteEven if she may not be able to see, she knows you are there because you always have been there for her. Find comfort in knowing that she has always felt and known your love from her first breathe. You are a awesome courageous woman and mother. You are all in my prayers. The Good Lord decides for us, faith is all He asks from us. Put everything in God's hands.
ReplyDeleteI am so unbelievably sorry that you have to go through this. My heart is breaking for you. It is so obvious how much you love and care for Kaitlyn. I am sure she can feel all the love you have for her and is comforted by it. My thoughts and prayers are with you always.
ReplyDeleteAli Reardon
Prayers for your amazing family......
ReplyDeleteYour beautiful Kaitlyn can hear you, feel you and know your endless love even if she can't see you. I have been reading about your incredible family for several months. I have shared your life stories with my own family and together we pray for God's gentle hand on you all every day. What a blessing your children are! And how very blessed they are to have you and Chip. Your family's unity, love and strength moves me. As Kaitlyn passes into the Lord's loving arms, we continue to pray for her, you and your entire family. Thank you for sharing Kaitlyn with all of us.
ReplyDeleteMay Cole's laughter help comfort you through this most difficult time in your lives. Our thoughts and prayers are always with your family.
ReplyDeleteJulie (Nikiforos) Adkins
So many prayers offered for each concern. Your love is not defined by sight; your precious hears and feels and knows your great love for her, a love that anchored in your heart long before your eyes beheld her.
ReplyDeleteMaybe the light from the camera or light from outside didn't phase her because she's already seen and started walking towards the lights of heaven. Your story is heartbreaking but you still some how show all of us how to be better parents and Christians.
ReplyDeletePrayers for such a wonderful family and sweet little girl. As a new mom of a little boy about cole's age, I don't know where you find such strength. Your story has truly touched my life and I'm continuously sending prayers your way. I admire you all. KaItlyn is such a fighter. I hope cole continues to make you smile though it all. <3
ReplyDeleteShe may not be losing her sight, but she maybe getting ready. I know it's hard to think about, but it could be the morphine or it could be her letting go. This happened to us too with Gavin.
ReplyDeleteI believe as Kaitlyn passes from your arms to God's arms, she will be able to see you as she's never seen you before. She will be able to not only see your physical presence but also more importantly your inner beauty and your heart.
ReplyDeleteDear Heavenly Father,
ReplyDeleteWhen Kaitlyn returns to Your arms, please give Chip and Deanna the miracle of feeling your presence physically, spiritually, and emotionally.
Amen
I think of Kaitlyn every day and pray for you all so much
ReplyDeleteJust as we, as parents know/sense when our children need us, I have no doubt that Kaitlyn knows you are with her and how very, very much she is loved. The bond/connection between parent and child goes well beyond the senses. Kaitlyn feels your love and is drawing her strength and comfort from you, Chip, Cole and the entire family. I continue to pray that God is with you all at this time and my heart is breaking for you. God bless you and your family.
ReplyDeleteShe can see in her dreams and you all have given her so many beautiful things to dream about. You all are in my thoughts and prayers everyday.
ReplyDeleteGod bless your family. I've never met you, but a friend posted a link to your blog on Facebook, and so I started to read your story here. You seem like wonderful people and I am so touched that you would share your story in this brave way. From a caring stranger, a wish for strength and comfort for you, your precious daughter and all your family.
ReplyDeleteI found your blog on one of your neighbor's Facebook page. You are such strong and amazing parents!! Kaitlyn is such a cutie! I pray for peace and comfort for all of you. Find comfort in knowing that when a baby is born they can't see well but they know their mommy and daddy and find comfort and love in them. I am sure Kaitlyn is finding comfort and love in your arms.
ReplyDeleteI pray every day for your beautiful Kaitlyn and your family may the Lord continually embrace you.
ReplyDeleteBristol tn
Your story has touched my family deeply. There really are no perfect words of comfort, but I pray that you will be comforted by God's presence with you in the midst of this seemingly impossible time.
ReplyDeleteKaitlyn's story has touched me. She seems to have such a wonderful spirit and she is so beautiful! You as parents, are showing courage and strength and have touched so many lives already.
ReplyDeleteI can't even comprehend what you are going through and I pray for God's loving arms to wrap around you, your family and Kaitlyn each and every day. God always has a plan and we never know what that plan is but God is good. You have to always remember that.
I read your blog every day and pray for the entire family and especially Kaitlyn every time you come into my thoughts. I found your blog posted on a Facebook Friends page. I can't write the right things down on paper to comfort you but I pray for your family every day. God Bless Kaitlyn.
I am sure hospice has everything taken care of for you your sweet kaitlyn. I was just thinking about anti-anxiety medications such as ativan ect.if you feel she is scared or such. I am so sorry that she has to go through this. She is such a beautiful princess. I will keep praying for your family. I found this blog through facebook. Kaitlyn's stregth comes straight from her parents. You just keep being strong for her !May Peace be with you.
ReplyDeleteI found your blog through s Facebook friends post. That was over a week ago and I am now checking on how you and sweet kaitlyn are holding up. As a mother myself I can not imagine what you are going through. I greatly admire your strength and I know kaitlyn does as well. She is so blessed to have such a dedicated loving mother and even though she can't see you I know she can feel your presence. I wish I could offer the perfect words for you but all I can say is that I am praying for you and Kaitlyn and your family.
ReplyDeleteSarah Cochran
Kaitlyn knows you and feels your comfort thru all her other senses. If her sight is gone I pray that she sees images of you guys, her angels here on earth and heavenly angels who are holding her as well. We pray the Lord's comfort on you daily and for peace that surpasses understanding.
ReplyDeleteI found your blog through a friend. My daughter was the 3rd girl in the world diagnosed with NP Type A back in 2005. She was the 3rd girl to be transplanted with stem cells at th University of MN. I'm reading your blog and feel your pain. I'm so sorry you have to go through this.Please know even though I do not know you and your family I will pray for strength, wisdom, and comfort. May my angel look down on your angel. Sending many prayers your way!
ReplyDeleteJulie, I read your post as I attempt to find out more about stem cell treatments for children. Can you tell me more about what was done for your angel? MikeStemCL@gmail.com
DeleteErin has shared your blog with me and I am keeping your family in my prayers. Your children are beautiful. Thank you for sharing your thoughts and feelings on this journey, that none of us would wish for. The courage of you and your husband is humbling and I am sure everyone who has taken a step with you on this difficult path will embrace you with love through their prayers. Your darling daughter is already an angel on earth. much love.
ReplyDeleteAs I sit at my desk taking a 'break' from work to browse Fbook.. I see your story on a friends page. In a word, WOW. Wow, because C and K have amazing parents. Wow because the two of you were blessed with beautiful special children. Wow because the support around you shines through in ever single comment. And most of all WOW to your strength...you certainly have it and we should all pray that if we were faced with similar heartaches we could face them as you have. God bless to your entire family, your story will ever remain in my heart.
ReplyDeleteDeanna--I don't know if you remember me but I am Tricia Coleman's younger sister. We cheered together in high school! I am so saddened to hear of your little girl and my husband and I have included Kaitlyn in our evening prayers every night. Children are closer to God than any of us and I hope when her eyes are open or closed she sees the angels among her welcoming her home. I bet they all look like you because that is what she knows and loves and God would only do what is best to make her feel at home. You will always be the peace in her life and you are such an incredible woman. We are all praying for you and your family here in Richmond. I work in the children's industry and will do by best to raise awareness and funds on her behalf. God bless...
ReplyDeleteI found your post through a friends fbook and I can only say this you guys are very strong you have two beautiful children. I have seen. Few post and I pray for your baby girl and your family every night god has a plan for everyone even though we don't always like te way things go. Go has given the strength to you and your husband and ur family to accept this reality life change and only the the best hope I out there that she makes a turn around I pray for your precious baby girl and your family
ReplyDeleteI don't pray too hard too often...but I've been praying for Kaitlyn, and the rest of you. My heart hurts thinking of what you are going through right now. I am certain she feels her family close, and knows you love her--always, in all ways. What a blessing Cole is--everyday, but ESPECIALLY now.
ReplyDeleteI found your story on a friends FB page and have new following your story for some time now. I pray everyday for you and your family. And admire your strength and courage. Your updates bring tears to my eyes and also make me smile when I see your beautiful pictures and videos. Thank you for sharing your story. You have made me a better person and I admire you so much. Prayers and love from Waxhaw NC.
ReplyDeleteYour story is an inspiration to everyone who has had the privilege to share in it. You are the most incredible parents and the love you have for Kaitlyn is undoubtedly reaching her. Our family sends our prayers for each of you - may your strength and faith bring solace in these days.
ReplyDeleteStill praying in Kansas. Love to you all
ReplyDeleteIt is truly a sign of your deep love and faith in the Lord that you continue to look toward Him in the face of such tremendous suffering. So often it is most difficult to watch those we care about most in pain. What a beautiful sign of God's grace and tender love that you know to turn to Him and trust, knowing that He loves your daughter even more than you do. I'm not sure if you've heard of or read the book Heaven is for Real by Todd Burpo, but I highly recommend it. May the Lord continue to draw your family ever closer to Him and shower His blessings upon your daughter and all who care for and about her.
ReplyDeleteI am another who found your blog through a friend. You are a remarkable witness and I am praying now for strength for you, Kaitlyn and all your loved ones. Without a doubt, you have prayers across the country tonight.
ReplyDeleteyour beautiful family is in my prayers right along side of my own family. god bless you guys
ReplyDeleteDeanna,
ReplyDeleteThe video of you and Cole is so sweet :) And Kaitlyn's beauty is seen in each picture :)
You all have been in my heart since reading your blog for the first time... and, this morning, my thoughts have been continously turned toward you. I, again, cannot imagine your pain from watching Kaitlyn's body in struggle. You are in my constant prayers. I know that Kaitlyn hears you, and feels you, and still sees you with the eyes of her soul... the amazing person that you are to her: Mommy, the most beautiful, loving, patient, strong, enduring person... the one who is filled with the things that make her spirit smile :)
Praying for Peace and Comfort for Kaitlyn and for you all,
Misti
I saw this posting on FB. God Bless you and your husband, you are amazing parents!! You will always, always, always have that precious baby in your hearts!!!!!!!!Her spirit will always be with you.
ReplyDeleteWe don't have to see God to know that he is there to love us and comfort us. I know there are no words for comport during this difficult but rest assure she knows she is being loved. Romans 8:28 all things come together for good for those who love the Lord.
ReplyDelete