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Thursday, March 8, 2012

The gravity of our reality

I (Chip) still remember the phone call.  It was a Friday afternoon, April 23rd, 2010, when the doctor called and told me Kaitlyn had a disease with a name I had never heard. I remember hearing “Niemann Pick Type A” and saying ok so what do we need to do for her. The answer was as soft and to the point as possible “it is incurable and unfortunately fatal, so just love her.” Just like that a weight unlike any other set in.

Nothing like a mother's love for comfort

When caring for a terminally ill child the gravity of the reality that they are destined to pass before you is there, but at some point you learn to function and put it out of your mind. Sometimes it’s for hours and sometimes for days. It’s not that you forget, I think it’s just how you cope. An attempt to resume normal, even if it’s only for a while, but just like gravity, you can’t escape the fact that it’s there.

Resting peacefully this morning

I have always explained our journey like a descending staircase rather than a downward sloping arrow.  Each step along the way preceded by a reminder of our reality. First it was Kaitlyn losing the ability to drink and needing thickened liquids. We adjusted and thickening became our normal. Then loss of drinking all together with surgery for a g-tube and nissen.  We adjusted and tube feeding was our new normal. Then gradual loss of muscle control. Adaptive equipment and floor mats were our new normal.  Then apneic episodes and turning blue. Oxygen and seizure meds became our new normal. Then gurgling in her throat and bubbling sounds in her lungs. We were pretty sure that was it, but she fought- so suctioning, adjusting liquid intake, and pain meds became our new normal.  Now jaundice and liver failure.  I’m not sure we will have a chance to adjust to a new normal as this one seems to come with a finite result.

Getting her morning bath

This morning while giving Kailtyn a bath, I looked at the half full bottle of baby wash and thought “I wonder if this will be the last bottle” then while drying her “I wonder if this will be the last bath” and every night the past few days “what if tonight is the night.” We’ve been through feeling like it’s the end now four times along our journey and every time, thoughts you don’t want pop in your head and everything just feels heavy. I think it’s just little ways your brain begins to grapple with the inevitable reality.

Cole offering his drink to help her feel better

Kailtyn is still holding on and we are loving her, spending time with her, trying to keep her as comfortable as possible and trying to do what our normal is, but her orange skin and yellow eyes are a constant reminder of our reality. Please pray that Kaitlyn be pain free and that when the time comes it is peaceful and quick.  That she feel God wrap her in his loving arms, spread her wings, and be free of this gravity.

Pretty in pink

Her new girly bow

61 comments:

  1. Thoughts and prayers for peace and comfort.

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  2. Your family has touched me so much. I don't know your family but I think you are the most amazing family I have ever heard of. I pray that Kaitlyn has peace and is pain free. I pray that your family is comoforted in knowing how may people Kaitlyn has made such an impressionm on. She is a very special girl and I will always remember her.

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  3. I just want you to know how much I have come to love your little girl and your family through your journey that you have so openly shared.

    I think of Kaitlyn often. I pray for her and for your family daily.

    My heart is breaking for the journey you are on, the losses you have faced and the losses yet to come.

    You, through sharing Kaitlyn, have touched the world in a way that I believe we can not fully know here on earth.

    May the Lord bless and keep you so tightly near to Him as I have every confidence and faith that He has been and is all ready embracing Kaitlyn.

    With much love and many prayers,
    A person, a mom, a wife, deeply touched by your family.

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  4. I am so sorry to read of her taking a turn for the worst. Praying for peace not only for her, but for the family as well.

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  5. I have been following your blog for the past month. My heart breaks for you. I will continue to keep all of you in my prayers!

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  6. As I read this post, one thing stands out: how deeply Kaiylyn is loved. You have been on a journey that has tested your relationship with your heavenly Father. You have been able to make this journey because you have come to know God in a way few have ever known. I can!t imagine doing this without God being there. Just as you are heartbroken by Kaitlyn's suffering, so is God when His children are suffering . I join you in praying for comfort for your precious daughter. Thank you for sharing your heart with us. Your faithfulness to God has been such an encouragement to me. Abba Father comfort and strengthen this family for the next steps of their journey. Hold Kaitlyn in your loving arms. We thank for the gift of eternal life and the blessed hope that we will be with our loved ones for all eternity.

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  7. I'm sorry baby, I'm hoping and praying for you and your family and especially for your sweet little brother who loves you so much.

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  8. I'm weeping for you. Lifting you up before the Father continually...praying that when it is time for sweet Kaitlyn to go home, that it is peaceful. I pray that God surrounds you with His arms for comfort and strength. Sending so much love and so many prayers.

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  9. Praying for you all constantly. Thank you for being so diligent in your updates so that we know better how to pray. May the Lord surround you with peace, love, strength, and hope during this truly difficult time.

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  10. You all are such an amazing family. I do not know you or your family. I am overwhelmed with emotions everytime I read your blog. Your daughter has really touched my life in such a way, I cannot explain. I look at life so much differently. I look at my children differently. I look at my marriage differently. I pray for baby Kaitlyn and you and your family.

    Thank you to Kaitlyn and your family for opening my eyes to many things in my life. Your story truly touches me. Stay strong.

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  11. Praying for peace for Kaitlyn and for her loved ones. She will always be yours and you will always be hers.
    God Bless!!

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  12. I am always praying for Kaitlyn and for her family. May God wrap his arms and strength around your family is this time of need now more then ever. May he keep Kaitlyn pain free as she continues her journey in life. One day she will grow her beautiful angel wings and in Heaven she will watch over her family.

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  13. The Lord has been holding Kaitlyn in His arms and rocking her in His love throughout all of this, and He will continue to do so. God will lead you through this time. He loves your daughter even more than you do, and He will take care of her in Heaven when her time on this Earth is through. She will always be able to look over her life and see how deeply she was loved, how often she was prayed for, and what a source of hope and courage she brought to others. Lord, please grant Kaitlyn and her family peace which passes all understanding as they face these difficult moments.

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  14. Kaitkyn is always on my mind, in my heart and in my family's prayers. How blessed she is to have you and Deanna and Cole! I am so very sorry your baby girl is going through this. I fervently pray for her comfort. What a gift she is to you, your family and all of us who know you through your blog. May you all feel God's loving and gentle grace with precious Kaitlyn.

    Jenn

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  15. Praying & sending lots of love for Kaitlyns peaceful & painfree entrance into Heaven

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  16. Chip and Deanna always remember nothing is a surprise to God. Keep your faith in him and he will lead you thru whatever comes your way. I know you already know and experienced that but I just wanted the emphasize it now as the light looks a little dimmer. I truly am touched by the strength of your family and especially Kaitlyn. She is one tough little lady that is a true fighter. I will continue to do what I do. Have special moments with the Father on your behalf. Stay strong.

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  17. As I weep for you I want to tell you how much I admire your faith and courage. As you all travel this road I want you to know I think and pray for you often. I want you to know that when she smiles she sees the angels that God has assigned to comfort her while she is here. I pray God continues to hold and comfort you. When your son is older he will remember seeing the angels around. May God bless and keep you during the days to come.

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  18. Others here have taken the words right from my own heart. May the Peace of God that passes all understanding, hold you, guard you and fill you with hope and joy. For in this world we will have trouble, but Jesus has overcome this world!

    There is a song that was written by a friend and sent to us as a prayer for our son when he was born at 26 weeks. The chorus says, "God is holding your life, God is holding your life, God is holding your life, we believe." Our family sings that chorus for you, dear Kaitlyn. We believe God is holding your life and will make you new.

    Love and prayers to you all, without ceasing.

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  19. I pray that God will give you peace. Stay strong and know every touch and word you say to Kaitlyn is the biggest blessing to her and yourself. Your family is an inspiration.

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  20. Though I do no know you I am praying for your sweet daughter and know God will watch over her. Praying for each of you.

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  21. praying daily for Kaitlyn and your family as you go through this journey.

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  22. My name is Amy. I'm a stranger to you and to your family...but I am your sister in Christ. My nephew is marrying Heather Waliga, who did a story about your sweet family. She has shared with our family your story also, and how much she has been affected by your journey, as you love Kaitlyn, each new day. I am praying for your continued paths and journeys, and praying for Kaitlyn. May flights of angels sing her to her rest...God loves her and surrounds her. This I know.

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  23. Prayers for comfort and peace to each of you.

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  24. I just found your blog through someone on Facebook. Please know that I am actually praying for your family and your daughter. I will follow your blog so I will remind myself to continue to pray. God bless you.

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  25. Sitting in a coffee shop, reading this post fighting back the tears for a family I have never met but whose story has touched mine deeply. I pray that you will find assurance of the peace of Christ that passes understanding as he walks and weeps with you through this impossible time.

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  26. Prayers for peace and comfort for Kaitlyn and your family.

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  27. As heart-wrenching it is to think about this sweet baby leaving this Earth, I am comforted to know how free she will be when she gets her angel wings. No more pain or medicine...she'll be able to run and play, sing and dance! And God will watch her with adoring love. We will not see her but she will be there, only she will finally have peace and comfort. God be with you sweet Kaitlyn. Please let this sweet family know you are there and send your angels to surround them.

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  28. Praying for your family!!! I have been through the loss of a child and wish no one had to go through that. It's so difficult to understand and hard to accept God's plan. I will pray he just takes her home peacefully when it is time!

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  29. Thinking of you and praying for all of you. Not just Kaitlyn, but all of you. I pray that as Kaitlyn leaves this life and goes home with her loving Heavenly Father that it is quiet and peaceful and that she is surrounded by all things in "Kaitlyn's Corner". I pray that it is quick, peaceful and pain free. We as an extended family of strangers reading your posts have come to love you as your "Family in Christ". You ALL have taught us more than I could imagine learning in my own lifetime. Thank you for that. Thank you for sharing your story and for allowing us into your private home to walk with you and be the hands and feet of Christ. God Bless you. Amy Barrett - Gainesville, VA

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  30. Praying for Kaitlynn during this difficult time that God may lay his loving arms around her and take away any pain. You are both amazing and loving parents. I know Kaitlyn loves you both so much and she will always be looking down and watching you both with happy thoughts and the love that was shown to her. May God bless you and your family.

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  31. I sit here with tears in my eyes thinking of your family I know god is holding kaitlyn in his arms and the angels are with her she will be be getting her wings and flying to freedom of pain and suffering i pray that she is in no pain and goes in peace to her heavenly father i pray for the rest of the family that god hold you close to him and takes your pain away i hope that one day cole will understand what an amazing sister he had that touched thousands of people hearts keep your faith and know everyone is praying for peace for the family may god be with you all and bring peace to little kaitlyn

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  32. Peace and comfort for all of you. May Kaitlyn's pain be minimal and you all know the love and support that surrounds your family.

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  33. "Our Father who art in heaven, hallowed be thy name. Thy kingdom come, thy will be done on earth as it is in heaven. Forgive us our debts as we forgive our debtors, and lead us not into temptation for thine is the Kingdom, the Power, and the Glory forever."

    This is very difficult to type, but...

    Perhaps Kaitlyn is being a good little girl and waiting for her parents to give her permission to go with God. Would she not ask permission to cross the street or to go play with her friends? Or to have another cookie before dinner? Because Kaitlyn knows how very much she is loved and how much you don't want her to leave, perhaps she is waiting for you all to say, "It's okay, Kaitlyn. If you need to go... it's okay. You have our permission."

    (I apologize with all my heart if I've offended you.)

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    1. I know your post was meant with love, but I have to respond. God is in control! No one decides when he is going to die. No one can give "permission". This little girl's life matters. The Lord has plans for her, both in her life and by her death. "All things work together for those who love God and are called according to His purpose." She is loved and cherished by her family, but most of all, by the GREAT GOD who created her - may God shower Kaitlyn and her family with His love and blessings. I will pray for you all.

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  34. I don't know your family but have followed Kaitlyn's story...she is a beautiful little girl whose spirit shines through those gorgeous blue eyes! How I wish she didn't have to go through this horrible disease...it's so unfair. I pray for a painless & peaceful passing for her...my thoughts & prayers are with you all.

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  35. Thank you God for allowing these wonderful parents to love Kaitlyn while she is here spreading your word. Thank you Kaitlyn for being who you are and bringing SO MANY people closer to their own families and Christ through you story. Thank you Deanna & Chip for allowing us to live a bit of your journey through this blog. Thank you for taking such fabulous care of Kaitlyn and Cole through your "normal" life. I pray for peace for all of you and sparkly wings for Kaitlyn when God gives them to her.

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  36. Praying for Kaitlyn and for your family. Thank you for sharing with the world such a great example of love, inspiration and faith.

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  37. Praying God wraps his mighty hands around your beautiful daughter and takes away all pain and discomfort. Praying for peace for your family. Praying for a peaceful home going for Kaitlin . I dont know you guys but heaven will surely gain one amazing strong little girl who has touched many people. Prayers going up now.

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  38. I also do not know your family but have been following your journey through a friend on FaceBook. I wish you all the very best and wish Kaitlin an easy and painfree journey. Your family has been through so much and given me strength through your words and glimpse into your life. I want to thank you for sharing your story as I'm sure it can't be easy.

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  39. I continually pray for your angel and your beautiful family may our heavenly Father wrap you in his arms and shield you with His wings. Love and prayers from the Carr family

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  40. I too do not know your family, but have been following since I learned about sweet, precious Kaitlyn from my former student, Heather Waliga's news story. Your family is the most beautiful example of the fruits of the spirit. I join all the others who have commented here in praying for all of you. I hope you don't mind, but I would also like to add what Kaitlyn has done for me. I have an almost 5 year old daughter who has a lot of challenges in her life (she is diagnosed with PDD-NOS and childhood apraxia of speech - she really can't put together intelligible words), and for so long I have been consumed by the "what ifs" for her life as she gets older. Your family's story and the example you have set through this blog have given me a whole new perspective for my daughter - one of living for each day, appreciating the moment, and leaving the "what ifs" at the feet of our Lord. Thank you, sweet Kaitlyn for finding your way into my life to make me a better person.

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  41. My tears and my prayers are with you. May God comfort all of you. Thank you for sharing your angel with us, your faith and love are an inspiration to all.

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  42. Thank you for keeping us aware of what's going on. I can't even imagine what you and Deanna are feeling right now. Your strength and grace in an impossible situation are inspiring to watch. You truly are a testament to the love and faith of Christ. Continuing to lift your whole family in prayer each and every day! With Love, The Russells

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  43. As for my family and I, we love you all. We pray Kaitlyn is pain-free, we pray she dreams of great, happy things. We pray your family knows peace and healing. I thank God for Kaitlyn, for she spoke to my heart and soul and saved me. We will never forget Kaitlyn, and i will do my best to honor her throughout the rest of my days. Stay strong, know He is with you all, and never doubt Kaitlyn's influence on this world! With you in spirit....

    Respectfully,

    The Tomayko Family

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  44. You move me and my family is all praying for your little girl.

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  45. Sending prayers to you, Deanna, Cole and sweet Kaitlyn as tears run down my face. Over the past few months of reading your blog, I have fallen in love your little girl. As parents, you are truly an inspiration. Your family has strengthened my own relationship with God and taught me to be a better mother. My heart just breaks for you. Love to you all....from someone you have never met.

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  46. May God bring her peace.

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  47. I just found your blog tonight. There will never be words adequate enough to comfort you, but I pray for her peace and comfort. I can only imagine how God is working in and through your lives.

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  48. Chip, Deanna, Cole, and Kaitlyn,

    Praying for you all to have peace and comfort, and for you to be pain-free sweet, baby Kaitlyn.

    My heart aches with yours... shedding tears of love with each of you.

    "May the Lord bless you and keep you..."

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  49. Sending prayers, strength and love to you all.

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  50. I've been following this journey only a short while. Your strength and faith are inspiring. We will continue to send prayers and love your way.

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  51. Just look at all the people who don't even know you personally but are praying for you all....how amazing is that??? Kaitlyn has touched so many, and she's not even 3 years old. You are in my prayers each and every day, and constantly on my mind. Brittany and I both are always talking about you guys and how much your blogs means to us, the outsiders. I can only imagine how hard it must be to take time to make updates to it, so we thank you. As always....you are in our prayers.

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  52. Praying God will give your precious Angel the peace she deserves... the pain free escape you hope for .... and loving hugs of peace and comfort for you and your family.... God bless and keep you all.... :`( .. tears <3

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  53. Praying for peace for Kaitlyn. Such a sweet little girl does not deserve to be in pain. May God bless.

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  54. What a beautiful little princess she is. I can't tell you how sad this makes me feel, not to mention so guilty because of how impatient I get with my perfectly healthy child. I take for granted how easy I really do have it, and I want to apologize to those who really do have burdens to bear. This completely breaks my heart.

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  55. Praying for sweet Kaitlyn, brother and you her parents. Like you, we have been on a critical medical journey with our son... only God's grace prevails so we can move, breathe and function. Praying sincerely that our Heavenly Father hold you all in his care every second. Deshmorey@usgo.net

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  56. Thank you so much for sharing this. My heart goes out to you...I will be praying. I pray that your whole family will know the nearness of Jesus during this time.

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  57. Your love and faithfulness being expressed in your care for Kaitlyn is a reflection of God's love that blessed me this morning. My prayer is that your family be embraced by the loving hands of God and be filled with His peace.

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  58. I recently buried my Dad at almost 89 years old. I was so heartbroken and devastated. Then reading your story was a real eye opener - Daddy got to live a very full life while Kaitlyn....never even got a chance. That put it all into perspective for me. My heart is breaking for her and for all of her family, having to watch and go through this. All I can say is that God must have a good reason for picking your family to go through this. At some point, Kaitlyn will be your Angel looking over you for all the rest of your days on earth. You are all in my prayers and I pray too, that Kaitlyn is pain free and at peace during the rest of her journey here on earth.

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  59. YOUR STORY REALLY TOUCHED ME ,IN FACT AM SHORT OF WORDS ISO MUCH APPRECIATE THE FACT THAT YOU SHOW HER LOVE.MAY ALMIGHTY GOD COMFORT THE MOTHER AND ENTIRE FAMILY.AM SURE LITTLE PRINCESS IS DINNING WITH THE LORD.MAY HER SOUL REST IN PERFECT PEACE.IT IS WELL WITH THE FAMILY.

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