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Righting our Upside Down

So.

I don’t even know where to begin. How to explain how our entire lives have once again been tipped over in a terrifying instant. There is so much, so very much that has happened this past week and a half that I can’t fathom where to begin. Much of it I don’t even want to remember, much less write out.

I just can’t believe this is happening. I can’t believe that my nightmare came true. Again.

It’s all still very surreal. He was born, and for a few hours I had total peace. A healthy baby, a wonderful delivery, everything was ok. And then it spiraled. NICU. Delays to go home. The nurse hearing something odd on his check out exam. A echo of his heart. Meeting with the cardiologist. The news, “Kaden’s heart is very, very sick.” Calls to Dallas. A quick trip home to tell my parents and Bella goodbye and pack. Flight with the team from Dallas who came to get him. Watching a huge team at Children’s work on him, not knowing until this Wednesday how close to death he was when we arrived.

Then this past week. Tests. Blood work. Operations to get pumps/tubes in and out.. Heart transplant approval. Insurance fighting. Finding out all kinds of different diagnosis’s as time goes on. Watching Kaden be hooked to dozens of tubes and pumps and kept alive only by them. Otherwise perfect. Everything normal. Just his lower ventricles on his heart are too weak to pump. No operation can fix this. A virus that caused it that no one has any idea how to cure.

I feel – lost. I feel betrayed. I feel very angry at a God that would let my son go through all of this. I do not understand why, why, why this had to happen to us. After ALL WE’VE DEALT WITH – now we once again have our lives torn apart as we try to keep our heads above water. And our little boy – and Bella. It hurts just to write about them. My mama heart breaks each day.

We have been so blessed here – staying with friends, a medical staff that is amazing. You all have sent money and gift cards, presents and food to our home – please know my parents are grateful for the things there as they care for Bella. We are truly grateful for the things you have sent, using them to buy clothing and essentials as well as pay for gas and our rental car. So thank you – truly.

Each day we wake up, clean up, and head out to the hospital 30-45 min away. We spend most of the day there, talking with the doctors about the test results that are starting to pour in, transplant options, signing papers, and waiting for procedures to be done to stabilize and help him as we wait to see how this all turns out. I still pray for a miracle, every day. Every single day. What else can I do? The miracle may be a transplant but I pray that it will be a full recovery of his heart. That’s the goal of everyone – if it will happens remains to be seen.

I don’t know if I will ever see El Paso again, at least for a very long time. One of us must always be here – for either recovery or transplant. We are working on moving here now. Sam is trying to get relocated as we see progression to this being long term. But we both can’t leave, and he’ll eventually have to for work and paperwork back home. We’re trying to get Bella out here next week. My (amazing) mom has been at our home for two weeks tomorrow for what was supposed to be a visit to welcome a new grandson. We have pets as well so someone has to care for them until we find something more permanent out here.

It’s more than I can think about or deal with. The logistics of this are absolutely beyond me right now. I truly do hand all of this to God because I know I can’t work it out. In any way. He has to do this – we don’t have the time or the energy to work all the angles. Our focus is on Kaden and Bella – we would do anything for them. If it means moving here in a few weeks – fine. If it means one of us going back, ok. We will do what it takes to make this happen.

It’s not fair. It’s not ok. This is absolutely the worst thing – equal with losing the twins – that we have ever been through. I am angry at God for allowing this to happen to us, and I know He can handle it, so for a while? He’ll just have to. I say it in my prayers because there’s no point in trying to pretend that I’m great with watching my son struggle for life as my daughter is hundreds of miles away and my other two are in heaven.

In my anger, there is still hope and trust. It’s all we have. I watch Kaden fight and slowly make progress – even little bits is wonderful – and I pray harder. I try to push aside my “This isn’t what I wanted” emotions and focus on reality. This is what we’ve been dealt. Now how do we handle it? Sam and I take it one day at a time. We make plans and pray God shuts or opens doors as we move forward, blind to what is going to happen.

We have said this over and over again, “We’d do anything for our children.” And we mean it. So no matter how tipped over our lives are, it’s our job to pull the pieces back together for our little family and try to move forward with a new life now. Tough as that is, and as hard as it is to wrap my head around so suddenly. We want Kaden and Bella to know one day that we moved mountains to be with them, no matter what stood in our way.

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Comments

  1. My heart just breaks for you. Someone once told me that before they are born, children choose their parents. I don’t know if I believe that, but if it is true, your beautiful babies have chosen you for a reason. They have chosen wisely. I hate this and I am angry for you.

  2. Amanda Horne Buckner says:

    I'm praying for you, your family, and especially for the healing of Kaden's heart.

  3. And I should add that we are praying for you.

  4. My heart aches for you, Diana. Thank you for your honesty and for keeping us updated. Praying for you constantly. I fully believe Kaden is going to be okay and that God is going to do amazing things with his and your testimonies. We all love you! Romans 8:28

  5. Lee Shapcott says:

    Thinking of you all <3.

  6. Oh, Diana.

    I’m sending lots of hugs and love your way.

  7. My heart is breaking and goes out to you. My little guy’s name is also Kaden, though spelled differently and it absolutely breaks my heart reading about the struggles he is facing and just now unfair it is for you to be going through this yet again. I’ve been a follower back when you were super sick being pregnant with the twins and then finding out it was twins to losing them and then rejoicing in being pregnant this time again and all of the hurdles you’ve been through in staying pregnant as long as could. My heart and love goes out to you and Sam & Bella during this time.

  8. Thinking of you, your husband, beautiful Bella and sweet, strong Kaden. Your family is amazingly powerful. Full of love and strength and incredible things. I’m so sorry you’re all experiencing so much. I keep you in my thoughts and heart as you go through your days and hope that you know we’re here for you to lean on as best we can be through our virtual world.

  9. Mandy Jackson says:

    Love you. I am so sorry you are going through all of this. Praying for Kaden

  10. Kelly Wilson Brandt says:

    My heart breaks for you. I have no words other than I am so terribly sorry and never, ever give up! Praying fervently for each of you!

  11. Oh mama. I’m speechless. I am praying so hard every day for Kaden. Emme and I both are. These heart babies are something else. I so so so wish I could come down there and just hold your hand and buy you coffee and sit with you. I know, too well, how long those hospital days are in the CTICU. We are holding you, Sam, Bella and Kaden in our hearts. And we are sending so much to the docs and nurses as well – they are amazing people, these wonderful humans who’ve made it their life’s mission to help these tiny babes and their little broken hearts. <3 Please, please, if you need anything, please call ok? Even just a 2 am text of UGH – I will understand! Also, I'm sure someone has already pointed you in this direction, but Sisters By Heart is an amazing organization and incredible resource for us heart mamas. Hugs hugs hugs.

  12. Joy McGillivray Latimer says:

    Diana I don't know you at all but I assume all of this must be straining your finances. So many of us who don't know you are reading this and want to help. Giving helps. Do you have a friend who can set up a Fundrazr account for you? It allows giving at every level. Just a thought.

  13. First of all, Diana, your strength and composure is admiral and inspiring. I dont know how you manage to keep it all together. My heart breaks alongside with you & for your family ❀ It seems so completely unfair that you are all having to go through this. But as you said- God has a plan and he can handle it. Fall into his arms and let him carry you, do what you do best and be a Mama to your two precious babies and an inspiration to all of us. Don't give up, and pray. We are all praying for Kaden's Miracle and for all of you to come through this with a greater understanding. Please take care and if there is ANYTHING that anyone can do, let us know ❀

  14. He is so beautiful, Diana. I am so, SO sorry you are going through this. And so angry. SO ANGRY! It's so unfair! This was supposed to be your victory baby. It was supposed to be easy, you were supposed to be home with your sweet boy and now you're dealing with all of this. I am just torn up for you. I wish I could do something for you, but please know that my whole family is holding yours close. Please reach out if there is ANYTHING I can do. xoxo

  15. I am sorry that your family is going through this. Miracles happen everyday! I lift your family up in prayer each and every day. Xxooxxoo

  16. Amber Bruns says:

    How utterly heartbreaking b

  17. Diana, my heart is so heavy for you. I cannot fathom this stress. I will be praying.

  18. I am praying for your family.

  19. Morgan Shanahan says:

    Thinking of you and praying for healing at all times. So much love to you Diana. And Sam. And all four of your children. I love you.

  20. I hate that this is happening. Will be keeping your family in my thoughts.

  21. Praying for you this morning…

  22. I am so very, very sorry for all you’ve had to go through … like you said, it just isn’t fair. Continued prayers for your entire family.

  23. Thank you Lord for a nurse that didn’t ignore what she was hearing. Now please work through all the specialist. You are a BIG BIG God. You are hearing all of our prayers from around the US and even abroad. You will not tire of hearing our begging for Kaden. We are lifting up Diana’s parents as they step into this role of caring for Bella. We pray for Sam as he seeks relocation. We pray over the insurance company and all of the of the other details that are just too overwhelming for Diana and Sam right now. Father please carry this family as they try to honor you in their utter misery and broken hearts.

  24. Samantha Knapp says:

    He is a gorgeous little boy. I'm so glad that you are able to be with him. I am also so angry that God, the universe, WHATEVER, is making you go through something like this after the year that you've had. You, Sam, Bella and Kaden are in my thoughts and in my prayers. Your family is SO loved right now. We'll all help you stand.

  25. Kate Mason says:

    Please God, heal Kayden. My thoughts and prayers are with you all.

  26. Every single emotion you’re feeling right now is 100% justified. The anger, the hurt, the betrayal. I’ve been praying desperately for Kaden but neglecting your aching heart. I will definitely focus on this as well because that’s such a hard spot to be in. I wish we weren’t on the other side of the country–I’d watch your fur babies in a heartbeat.

  27. Praying so hard for you…please know so many are praying…

  28. Prayers that God will continue to carry you, Sam, Bella, and sweet Kaden through this time.

  29. praying so very much for all of you

  30. I'm so sorry. No one should ever need to experience 1/3 of what y'all have fought through. You and Sam are a force of nature when it comes to loving in the real and unconditional sense of the word. I'm still praying you get you peace back much sooner than you hope. β™₯

  31. Praying for a miracle. Thoughts are with your family.

  32. I am praying every day for you and your family. Your strength and courage amazes me. We never know how strong we can be until something like this happens. I have followed your blog ever since you lost your twins and even though I've never met you I feel as if I know you. My heart is breaking for you right now. I hope you know how many people love and care about you all and are praying so very much for you all. You are loved by so many people. I pray that God works a miracle on your precious little boy!

  33. Marisa Toomey says:

    My heart hurts for you and your family! I appreciate your honesty and I know our God does as well! I’m praying and believing for a miracle everyday, Sister!

  34. Lifting your family, that sweet baby boy and entire medical team in prayer. Unfair hardly touches this. I’ve had my own words of anger over the last year with God and recall reading (I believe in “What Was Lost”) that it’s good because it means at least you still believe and are still communicating with Him. I don’t understand why you all have to go through this ordeal. Enough already. But since it is what it is, I’m praying hard for healing for your son; for comfort & strength for you & your husband, daughter and extended family. May you feel God’s presence even in this challenging time. May He hear our prayers and bring the miracle that is so needed and deserved.

  35. Praying and thinking about you still during this time sweet lady.

  36. Tiffany Barnes says:

    I've been praying for all of you, I am just so very sorry. Sending all of our love, prayers, faith and hope, from Ohio…

  37. Katherine Stone says:

    This is so unbelievable Diana Stone. I just cannot believe this is even happening. It's such total bullshit — it makes me want to punch the universe. I'm so sorry your sweet family is going though this, and I pray that Kaden will recover fully and be healthy and strong. We are all pulling for you so hard. ~ K

  38. There are no words… only thoughts and prayers.

  39. I’m continuing to pray for you. I think about you every day. Thank God for the nurse who realized something wasn’t right.

  40. Oh Diana… we are praying so hard. xoxo

  41. Miranda Wicker says:

    Oh, Diana Stone. My heart breaks for you and Sam and Bella as I think about all you've endured and all you're enduring. Kaden? Well, he's beautiful. Simply beautiful. All my love and best thoughts to you guys.

  42. Diana, I am from Germany, following your blog for a while now. I want you to know, that there are even more people out there, praying for Kaden and you and your family and sending you love and light around the globe. Stay strong and stay in His love. You will move that mountain! <3

  43. My heart aches for you. I pray every day for your little man, your little family, for the doctors. I will continue to pray until you have him in your arms, on your way home.

  44. Karen Glidewell says:

    Sending all the love I have to Diana Stone and Sam and Kaden and Bella. I just… no. No words, friend. No words.

  45. I don’t have any other words to say other than I love you, and I pray for Kaden, and you, and Sam, and Bella daily. I wish I was closer, and could help in some way.

  46. Michelle MacNeil says:

    So very sorry that you all have to be suffering again! Leave it all with God and trust that He will carry you all through each and every second of all that lies ahead. Praying for your sweet boy and his miracle! God Bless you and grant you His peace and mercy. Thanks for all the updates and photos. He is precious!!

  47. Nicole Beck says:

    I'm so sorry this is happening. Please know you have tons of love, hope and prayers for your family and Kaden, for what it's worth. I hope he heals.

  48. Melissa Lynn Benham says:

    Praying for you and your sweet family, Diana. May God be with you – He does have a plan, even when we can't see it – just keep moving forward day by day knowing that. May God strengthen and help you and Kaden, as well as the rest of your family. Sending lots of love and hugs your way. God bless you.

  49. I have been praying for you all several times a day! The first thing I thought was, “Why, Lord? This family has already been through so much!” But God pointed out that right now He is using your family in ways that you can not even imagine. Because of your story, people are looking at your lives and you are broken pots, revealing the precious stone of our Lord Jesus Christ.

    “But we have this treasure in earthen vessels, that the excellency of the power may be of God, and not of us.”
    2 Corinthians 4:7

    The saints are praying you guys though this, don’t ever doubt that!!

    God, I pray for my sister Diana, that Your Holy Spirit would intercede for her when she doesn’t have any words to pray to You. Amen.

  50. I can't imagine the pain they have gone through and are going through. Praying for them.

  51. Virginia Ozanich says:

    Just remember, God never gives us more than we can handle. I know that is hard to believe, but it's true, and If God brings you to it, Good WILL bring you through it. The hardest part is to "let go, and let God". But I know from experience, that when you DO let go, and let God, he will deliver. Keep the faith, and know that there are people all across the nation, that don't know you, or Kaden, or any of your family, but we are ALL still praying for you and your f family everyday.

  52. You don’t deserve any of this! The whole thing really stinks.
    I have to say Diana, I really admire the way you and Sam are focusing on your children – that is what will get you through this. I have to believe there will be a happy ending here and that someday this will all be a nightmare of the past. The four of you will come through this and you will be a strong, loving, happy family. Sending all my positive thoughts and energy your way.

  53. Dana Buhe Lopez says:

    Such a beautiful baby boy. Praying God's healing for Kaden and strength for your family <3.

  54. Diana,

    My heart is with you. I have been praying and keeping you, Kaden and your entire family in my thoughts. You are right, it is not fair. I am angry for you. You have been through so much, too much. You are such an amazing mother and your love for your children is palpable through your writing. We are all here for you. I know when I went through my loss, around the time your twins went to heaven, the pain buried me and having people who understood and being able to process my feeling by writing them down saved my life.I know you know what I mean. I am here. If there is anything I can do,please let me know. God bless.

  55. Leanndra Johnson Foster says:

    Continuing to pray for a complete miracle for little Kaden! And that God will give you strength that you didn't even know you had. I'm believing there's a light ahead for you – a healed baby, and your family back together. One day this will be a dim memory as you watch your two kids play together at home where they belong. Hold tight mama! You can do this!

  56. Prayers and healing thoughts to you and Kaden.

  57. Diana, I started following you online due to our military background. We are in the Air Force and stationed in NE right now. I am pregnant with my second and am overwhelmed with your story. I feel for you and pray for your little family. I am astounded by your strength and love. God will watch over you and your son and keep him safe. You will continue to be in my prayers.

  58. Katie Stewart says:

    Kaden is so, so adorable. Prayers for you and your family. I can’t even imagine what you’re going through. My heart truly breaks for you. Just remember that God is with you, even though it doesn’t seem so. God bless.

  59. I don't even know what to say. I'm furious at God, I can't reconcile this. I can't even fathom WHY Kaden has to go through this, why you all have to suffer yet again. I'm just so angry, Diana. I'm so sorry, this isn't fair. I wish there was something I could do. You know I'm here, day or night, and I'll do anything I can to help. Please let me know. My prayers are wrapped up in Kaden, you, Bella and Sam. Love you all so much.

  60. This is so unfair. I know that life isn't fair all the time but there's nothing else to say about this. Diana, Sam, and Bella have been through enough. Praying to God for a miracle.

  61. Beth Anne Ballance says:

    You are so loved.

  62. My heart breaks for you. I cannot imagine. You have my thoughts and prayers. I have to believe Kadens heart will walk itself. You have earned your miracle.

  63. Rachel White Pennell says:

    :(

  64. Amanda Hoyt says:

    <3 and prayers continuing

  65. Stacy Rivas says:

    My heart, thoughts and prayers are with you all in this time.. Sending as much love and faith as we have your way.. I know God has a plan and his way is the only way but I'm so confused as to why you were dealt this tough hand you were…We all love Kaden and are praying for him to get stronger on his own….

  66. I am thinking and praying every day for you all.

  67. Praying for you and your family. I’ve been a a reader since you announced your pregnancy with Kaden, while I was pregnant with our first, a son. As he’s napping here next to me, now almost 3 weeks old my heart aches for you. I find myself praying for you and Kaden during our middle of the night feedings. I can’t even begin to imagine how difficult this is for you, but pray that God will lead you and give you peace. Remember, he’s the great Physician and there’s nothing too big for our God.

  68. Thinking of you. Praying for Kaden. I wish I could do more.

  69. I am so angry and heartbroken for you. I know you have a strong faith in God, and I am a believer, too. But I don’t agree with so many who say “God has a plan” or “everything happens for a reason.” Bullsh*t. A loving God does not CHOOSE for something like this to happen to a sweet and innocent baby. To a beautiful family who only wants to love and welcome a child into this world. It’s so unfair that you are going through this, and I believe it’s just a freak thing, a very unlucky roll of the dice. I don’t think God chose this for you. But I do hope He will choose to comfort you and help you through this, and I hope with everything I have that Kaden is ok after everything possible is done to cure his little heart. I’m so, so sorry again. We are all really pulling for you guys.

  70. Diana I’m so sorry all this is happening. I cannot even begin to imagine. My heart, thoughts and prayers are with you.

  71. Anne-Marie told me about sweet Kaden. I’m so sorry your family is going through this. Praying for healing for your precious one!

  72. I just… I’m so sorry. again. this sucks. I wish I could do more, but for now I’ll just continue to pray. for Kaden. for you, Sam & Bella. for your families. for Kaden’s medical team. for your housing situation and job situation to work itself out – smoothly and quickly. for Kaden’ miracle. sending so much love. from my little Heart Warrior, to yours, and one Heart Momma to another. XO

  73. My mommy heart is hurting with you. I hadn't gotten the whole story until I read your blog. We are praying for you, Kaden, and your family. May God provide…XOXOX.

  74. davis ann says:

    praying for you & your family… lean on the church when you can. we want to be the ones “holding up your arms…” (ex. 17)

  75. Sandy Ross says:

    Thank you for being so honest and open…praying Diana….praying that God holds you, speaks to you and draws you close. Praying of course for that miracle for Kaden. He is precious!

  76. Sarah Pridemore says:

    Poor little guy and family, we have been praying and praying! Pastor Bill had some powerful words at service yesterday….as a parent its so hard to imagine. :(

  77. Debbie Deb says:

    amen! Kaden may well still be the victory baby! one day he may have an awesome testimony of Gods great works…praying a hedge of protection around the whole family

  78. Prayers continue for your precious baby and the rest of your family.

  79. April Annette Mysliwy says:

    My heart hurts for you and the baby as I pray but I know that God can't be done. He just can't!

  80. I just recently found you and your sweet baby Kaden on She Reads Truth. I can’t IMAGINE what you and your family must be feeling. My heart absolutely breaks for you. Know that you are being lifted up and surrounded by prayer way out here in Alaska. My heart, my thoughts and my prayers are with you and yours.

  81. Joanne Panettieri says:

    Diana, I've been following your story through a friend on f/b. When I read this I thought this song would bless you. Remember right now God is holding you up. Keep leaning into HIM…. He is your strength. http://www.youtube.com/watch?v=vZLHrb-nysg

  82. My granddaughter is Allix Brunson and I am so proud she was ask to do this it has touched us all and it was an honor for her to share these moments with the parents I pray this special little baby gets that heart. Prays are with the parents and baby.
    Allix Grandmother
    Sherry

  83. Joanne Beasley says:

    Hi Diana, here are two more prayer responses from the healing website……
    Diana J. prays: In agreement that Kaden (warrior of God ) will fulfill all the good plans that are there for him. All the promises of his God are YES and in Him amen over you Kaden. I say little child receive LIFE in Jesus name, be healed, be whole. I also say to any foul devil still lingering to FLEE now and never come back in the name above every name,,I tell you BOW, NOW, GO!
    48 minutes ago Β· Like

    Frank W. prays: in Jesus name heart work NOW, body line up to the word of God, by his stripes you are HEALED!

  84. Katie Thompson says:

    Diana, a coworker of mine passed on your blog to read and pray. I am in Fort Worth and have been in the NICU world myself with my preemie daughter. It is so scary and so emotionally draining. Please reach out to me if I can do anything at all- from bringing you a starbucks to sitting with you in a waiting room. My email is katie @ onceamonthmeals.com. (Yes, I'm a crazy internet stranger but only crazy because of being a stranger and not of the true crazy variety lol).

  85. Jessica Joy Jackson says:

    Diana, I am so greatful God has lead me to your blog. This is unimaginable and horrifying what you and your husband are going through. I've read about the twins and about your marriages struggle due to alcoholism and God is showing me through your struggles, that I am not alone.

Trackbacks

  1. […] we’re on the subject of thinking of people and praying for people, please continue to keep Diana and her family in your prayers. They are truly going through hell. I am thinking of them every day and hope for […]

  2. […] pray for these two women, Alexandra Rosas and Diana Stone, that their hearts might know peace and comfort again someday […]

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