We just got home from the hospital. Today was an emotional day. The fear of infection, specifically NEC, was really scary. I can't imaging what the reality of it does to the families that it touches. They restarted Kyle's feeding today - this is a HUGE praise and answered prayer - answered the way we wanted. he is at 9 ccs. full feeding for Kyle is 25 cc now so we will have to work back up. He did have some residual tonight which we do not want to see but Misty (she is AWESOME!) just moved his position and he ate it right up! So we (doctors and us) are feeling better about where Kyle is. I second John when he asks you to pray for these doctors and nurses. Not just that they would be used in Kyle's life for health and healing but that they would be blessed. Filled with hope and joy and love as they work and also in their personal lives and families. These are such uniquely gifted people. I am humbled every time I think about them caring for kyle.
I'm sitting alone in my living room right now. It is totally quiet. I mean totally silent. and the alone part just keeps haunting me. No matter what I do each day - where I go - who I am with. It feels alone. I pick up the house (i know for those of you that have come over you don't believe that but I do...), get ready, pump (still don't like it), play with the boys, ride in a car to and from the hospital, maybe stop and target with 100s of people, ride an elevator, sit in a pod with 4 nurses, 8 babies, and 100 alarms and bells. but I always feel alone. on the outside I am doing my thing - making the right face, saying the right thing (sometimes), laughing at the right times, going where I need to go - but on the inside it feels like I am holding my breath and looking everywhere to find some solution. some way to make this right. some way to get back my perfect little life. and then the fear takes over that it might never be perfect again. what if we don't make it through this? what about the way my kids miss me and my 5 year old that worries daily that he is not special, will my precious husband and I be weaker or stronger in our marriage, will his career make it through this. what about 220 - a life's work and dedication - will it continue? and what about my friendships - can they make it through this silence. and what about me.. the inside of me, what will it be like when all this is passed - what good will be left?
sometimes it's like carol said you find your self looking all around and then you have to remind yourself to breathe.
and then ... usually after a huge cry or moment of frustration I realize that it is not fair for me to even care about my feelings or anyone else's for that matter b/c at the center of all of this... this "journey" (that's such a nice christianeese word) there is a sweet precious baby who really just wants to be back in his mommy's tummy where nothing hurts him or is scary. where he can grow and rest. or maybe he wants to be like other 2 month olds; being held and cuddled and kissed and loved all through the day and not put back into a little fort when mommy and daddy have to go home.
i can't believe my son is going through this.
I am too scare to sound ungrateful or want this to be over b/c I DONT. I want kyle to get well. God please I know it is not about bargaining with you but I find myself asking you what you want me to do. i am trying to just "be" but I don't even know what that looks like right now.
I really do hate analogies. ask john sometime - he will laugh b/c he knows I don't like them - but I am trying so hard to describe this sick and chaotic panic I feel inside me all the time. not for your sake but for mine. It's like I fell into water and at first I thought that was no problem b/c I know how to swim. but all of the sudden I realize that I am swimming but swimming doesn't work. so now what do i do?
jadon just ran in here - it's 2 am and he was crying b/c a man from "meet the robinsons" keeps coming into his dream. and that keeps making his dream scary. He asked me to pray against a spirit of fear and for peace in his mind.
me too buddy.
Kyle's NICU Story in Pictures
17 comments:
Kelly,
I am so sorry that you are going through this, but I pray that though all of this you will be used greatly by God. And somehow, I suspect that you will be. I don't know if this makes you feel any comfort, but I feel that alone feeling sometimes, too. It's hard to remember, but no matter how alone we are, God is always right by our sides. I will be lifting you up in prayer this week.
Kelly.... I don't even want to sound like I understand what you are feeling, because I don't. If I could, I would just give you a hug. Please know that I am praying for a sense of peace to come over you. Peace that can only come from God.... and I am praising His name for the miracles He has done so far in and through Kyle.
Still praying, still believing and still expecting continued growth and healing!
Candy Humber
After reading your comments earlier this morning I was reading a daily devotional book and came upon this verse of scripture and thought of you. Psalm 69:29
Still praying, still believing and still expecting continued growth and healing.
Candy Humber
Dear, sweet, precious Kelly....I'm praying for you right now and will continue to...believing and knowing that He will give you peace.
Dear Sherrills,
I have been following your little Kyle's story for awhile. I pray that he will come out of this like a lion! I am an early intervention specialist and have seen miracles abound - of course, there is also the pain and saddness that you have seen in the NICU. I so appreciate your honesty about your feelings. I wonder where God is sometimes too - since I did not get married until later in life, I missed my chance (so it seems) to be a mom. That is heartbreaking and also scary to feel no sense of continuity in life. But, I have to believe Romans 8:28 even though I don't understand or necessarily like it! BTW, Kyle's little deer suit was adorable!
Kelly and John,
please try to believe and just TRUST that you are NOT alone. How do I know you say? I cannot begin to know how you feel right now, how these days and weeks have taken a toll on you. I have not been to your house, not seen your kids. But somehow, because of my faith, I know that you are not alone. There are all the friends and family that surround you on a daily basis. Then are all of us, people who care and pray everyday even if we don't tell you. There are prayer warriors all over the state. perhaps the world, who lift you up each day with prayer and love. Remember the Footsteps story/prayer? God is carrying you right now-not just walking beside you. We all have humbly had ourselves carried thru the tough times. It's your turn, and it might be awhile. So, in those many moments that you feel alone, like you are just putting on a good face, you are being lifted that very moment, even if you don't consciensly feel it. And you are not weak in these mooments, you are human, as God made us. Human but in His image.
The boys will be fine thru this and after this. They will only remember the love that you and John have shown them and all the love of their surrogates. "Normalcy" will return one day and you will look back on the wonder and miracles of our Father God.
So, cry when you need to, smile when you can and may God's comfort and peace be with you and yours.
Many hugs,
katy, steve and brittney
p.s. the docs and nurses are incredible and gifted-bless them all!
Kelly,
I had an urge to listen to "captivate us", which John has drilled into my heart through 220. As i sat there and listened to it and read your post, it was amazing how real it suddenly felt. I have been following this story since day 1, urging people to pray, telling and retelling the story so that the prayer would not die. And up until this moment it has all seemed like a dream. Suddenly I realize, you are going through the hardest time of your life. I sit here and act as if I have compassion. A freshman in college with everything going for her, the perfect life it seems in comparison. I am sorry you are going through this. That your idea of "perfect" seems so far away. I hope and pray that you will find joy in every aspect of life. Every day that Kyle lives I take as proof that God answers prayer. You have been such an amazing faith booster. Thank you for your strength to display all of your thoughts, whether they be scary, sad, angry, loving, joyous, hopeful, you. Thank you for who you are. So many people have been encourage. My prayer is that you will find your "perfect" or that God would slowly redefine it.
In Him and with love,
Abby
That alone place, the alone that happens even though you are in a room full of people, is terrifying. It's terrifying because it doesn't make sense. How can you feel alone if you are with others? How can you be laughing then suddenly feel like the earth may stop or have already stopped spinning? It sounds spiritually trite or like "Christian-ese" to say that "the peace that passes understanding" is what will hold you together . . . until you need the peace that passes understanding . . . until you experience the peace that passes understanding. So know that I am praying for you throughout every single day. I love you more than my heart and mind can even form words to communicate. I am praying for the peace that passes understanding. And I am praying for you to breathe.
“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”- John 16:33
kelly-
you are not alone! i am right there with you sister! but I know exactly how you feel. i can't tell you how much you guys have helped chris & i. hang in there...i see the light at the end of your tunnel! I wish I could say the same for mine....uhhh...
Ann Marie
kelly-
you are not alone! i am right there with you sister! but I know exactly how you feel. i can't tell you how much you guys have helped chris & i. hang in there...i see the light at the end of your tunnel! I wish I could say the same for mine....uhhh...
Ann Marie
“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”- John 16:33
Kelly, I read your blogs and they constantly send me to the scriptures to find words of encouragement because I feel in adequate in my own words... this is the verse I found for you today. I have prayed it and sang it over your family (and specifically YOU!) numerous times today. I love you. My heart aches for you sweet friend. My phone is always open... day, night, or middle of the night. I may not have words of wisdom to handle this (it isn't quite the same as a colicy baby :D), but I can always be an ear... or a punching bag when you need that too. love you, diana
You have so many people praying for you, your husband, your children, Kyle, his doctors and nurses, people all over the WORLD! People that you've never even met, and never will. I will continue to pray, thank, and praise Him. He IS good, even in tough times. Life may not be great right now, be He is!
Kelly,
Diana Parker said, "I read your blogs and they constantly send me to the scriptures to find words of encouragement because I feel inadequate in my own words..." wow, I could not have said it better....
I never know the "right" words to say... but I wanted to let you know we lifted your name in prayer at church this evening.
Still praying, still believing and still expecting continued healing and growth in Kyle.
Candy Humber
Kelly, your post brought back such a flood of memories and emotions from our journey with Bennett... and there are no adequate words, but we are praying for you.
Thinking of your older boys - my kids were 3 and 21 months when Bennett was born. They witnessed so much but with that, their faith and compassion and sensitivity grew. My oldest is now six and wise beyond his years - he remembers so much. But years later we are uncovering even more blessings from the experience that we're just now beginning to understand...
You're in our thoughts and prayers.
Heidi, mom to
Bennett, 23 weeker
Your family will be stronger. You and John will love each other and your children more than ever. I think because you see from experience the importance of every moment even those when you feel alone in a crowd. Your life's work is your family and your faith, everything else will take care of itself.
...AND sometimes a big old hug will get you through the funk, so when you need one just let me know.
Praying for you, Kelly.
Janice
For the first time, I think you expressed my feelings that I have had ever since my baby that I prayed for so hard was born with an uncurable heart condition. What was my new life going to look like? Would the dreams I had for this child ever be realized? How will I make through another heart surgery? I can't survive if I lose my child. But then as I type, he is laying on the floor making my 7 month old giggle louder than he has ever. He is the light of my life. I just have to take it one day at a time and ask for the peace, patience, and courage to go each day. Not easy, but I have made it through 3 heart surgeries and a serious staph infection with God's help. While I have met John and sing at Woodsedge Montomgery but never met you. But I am a kindred sprirt that understands your fear. Please email me if you just ever need someone to understand.
Julie Andrews
julie.andrews@hewitt.com
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