Kyle's NICU Story in Pictures

Tuesday, July 15, 2008

I can't believe it.

I can't believe that so much time has gone by.  I feel like about a month ago I fell into a really dark hole.  It is by the grace of God and the love and encouragement of my husband that I feel like I'm climbing out.  fighting my butt off to get there - but climbing out none the less.  So if I have avoided your email, avoided your call, neglected my blog family... I am sorry.  It has been rough.  I have some thoughts on the last few weeks.  might not make sense but it does to me and I really want to journal it.  I am sharing things here that I have asked other's permission to share.  

i can't believe the effect tragedy can have on someone.  I can remember watching this family on TV a really long time ago and their house had burned but the whole family had gotten out alive.  They were distraught.  I couldn't understand it - i was so judgmental towards them b/c they had their family - how could they care about anything else.  I get it now - it is tragedy.  I wonder daily how many people look at me and think - you have your son.  how could you be struggling?  but tragedy damages people.  not that we can't be restored - boy do I believe that - but it causes wounds and scars - that is how I feel.  damaged but at least aware of my many wounds and seeking restoration.  so if I have my son, he is growing and looks amazing, what is the problem - that is what I have been learning.  what damage has been done?  

I am a type A personality - work great under stress - high pressure situations - all good to me!  but I admit - kyle's birth and all i learned in the following 6 months took me out at the knees.  I sit here in disbeleif that this is where MY life is.  and strangly enough it isn't b/c of KYLE.  his birth ya - but it is different.

oh and if you want to skip ahead I will update on the little man! he is too cute!

but really I want to share something - something I need to say out loud for myself.  I am really struggling.  everyday is a fight to choose joy everyday is a fight to choose faith everyday is a fight to love and serve others.  and i want to shout BUT I WILL - B/C I KNOW THIS IS TURTH AND THE GOOD AND PERFECT WILL OF OUR GOD!  and it is what is best for me and my family.  I know truth like - he created kyle in his image and me too; he created me b/c he wanted to; he has plans for me that are good;  his character is love.

Kyle was born in late october. in late november we were still dealing with his brain bleed and moving into dealing with a clot in his heart.  still a tough time for kyle and for us.  On thanksgiving night another 23 weeker was brought in - his name was Matthew.  Matthew had the sweetest little blanket on top of his incubator.  He had the most adoring mom and a very worried dad.  John made a B line for dad.  Hoping to encourage him - hoping to find friendship where we could encourage each other.  Not me - i stayed away, scared... petrified to get to close to anyone and risk more hurt.  But mom had this smile on her face, tears too but still this smile.  I thought that she didn't understand what she was in for - none of us do at this point. but as I did get to know her - i understood her smile.

 I won't list for you what he struggled with b/c when a 23 weeker is born it would be easier to list what he isn't struggling with.  Matthew was very sick.  He had very rough days - I remember the first day she got to kangaroo hold - even dad was grins ear to ear with his camera that day!   Matthew's parents are precious - loving, kind, always there; and today I am so glad that we have become friends.  There is a bond in the NICU moms and dads and their nurses like I have rarely experienced.

Matthew fought so hard - his parents fought so hard - his doctors fought so hard for 18 days.  I remember this afternoon like it was yesterday.  Matthew was very sick.  I remember being in the pump room (my least favorite place in the hospital!) - pumping and crying b/c I knew God was asking me to pray for his healing.  the hard part for me to type out loud is that I was scared to.  I was scared to use up my one BIG thing from God b/c what if kyle needed it.  what if i only got one request - this was nothing like i had ever been asked to pray before.  but i knew God was prompting me.  Through fear and obedience and love for this little boy I barely knew - I prayed.  I begged God to heal him - to make him whole - to give him to his beautiful parents. When I came out I talked with john and he had been praying with Matthew's dad.  I asked john if he asked God to heal him - he said yes.  I remember the feeling that came next - I KNEW God was going to heal him.  all i knew of God said he would..... all my confidence in what I knew of God and prayer said he would.

Matthew died later that night.  We came in late the next morning and his mom and dad had gone home. 

this little boy, this tiny little boy - in 18 days - changed my view of the ONE all consuming God.

I felt so angry, so confused, so scared - all that I knew of God had just betrayed me.  And this was the God that I had to rely on to heal my own son.  He left me.  All I had known of him from the past 18 years of desperately seeking after him was all gone.  I didn't understand.  It was beyond understanding, it was all consuming fear.  I felt abandoned and alone by God.  

I continued to beg God for kyle - but fear overtook me.  i could not and would not pray for anyone or anything else.  I stopped putting my hands on people when I prayed - I was so angry - not only for Matthew's life but very selfishly for mine.  God had left me and he hadn't just left me in a normal life - he left me needing his healing for my son and so many others in that NICU - he left me married to a minister (we were supposed to tell others of his goodness?) - he left me administrating a ministry - with a house full of people (my church) that I was too love in him.  I couldn't do it.  I shut down.  and when I did this - the loneliness and the darkness crept in.

If you have read other posts you will remember 2 other huge moments in this journey that led up to this questioning of my faith - my questioning God.  One was  a little boy named Marshall Brown (has there ever been a cuter name?).  Marshall's dad gave God glory and praise every day of his life.  He was so vocal in the NICU about God's purpose and plan.  He was so positive in spirit and so encouraging - always giving God praise for each event - good and bad!  Marshall died shortly after going home.  another was my prayers for Kyle's brain - begging for protection from a bleed - I prayed this the day he was born and continued fervently. I don't even know how I knew what an IVH was unless God laid it on my heart and mind to pray.  

My faith in God, my confidence in Him was devastated.  did you catch that - I used the words faith and confidence interchangeably and from where I stand faith has little to do with confidence gained from knowledge.  You could also say confidence gained from our senses.  This is NOT FAITH!  so fast forward through 5 months of darkness.  as a mom - I was getting better - kyle is growing, mastering skills, adorable - but I my spirit was suffocating.  and no matter how much I wanted someone to notice, they didn't.  Everyone kept waiting for me to go back to the same old kelly.  ... oh ya we were fast forwarding... sorry... so last week I am at 220 - uh .. if you don't know what that is - you should find out!  and the teacher is talking about david and how he lost his son.  his son was killed (a little baby).  he grieved and scripture says that then (I'm sure still grieving) he got up, washed himself off, and went to worship.  He worshiped God not b/c he felt like it and not b/c he had anything to be happy or even thankful about at the moment but b/c God's character deserves it.  He is worthy of it and we were created to do it.  

I felt so hurt by God; betrayed and abandoned.  but in all actuality I was not betrayed by God - he was who he has always been - I was betrayed and abandoned by my perspective of God.  a perspective in which i had based my confidence.  I could not sing to him - I could not listen to his word (scripture) with out anger.  It had been months since I communicated and listened - I just shouted out my demands for kyle.  and anytime a loved one needed prayer - i would threaten God - it was out of instinct - my prayers would start off "God if you don't..."  and then I would realize it was going nowhere and so I would stop.  So by the third day of 220 - after so many tears and so many thoughts and so many times balled up begging God to just make me back into who I used to be - i finally stood up, washed myself off and went to worship. Physically what did this look like - well, many times when I sing worship songs to God I will stand up - out of reverence, out of obedience, out of awe and love for who he is (if our president or king walked into a room - we would stand - same thing for me in obedience).  so what that looked like is my posture changing.  i got up - literally stood up, i washed off - i decided to stop living in grief - not that I am not grieving (what I am grieving - ooh that is a whole other blog!)  and then I worshiped.  now it is still hard to sing songs of adoration right now - but I consciously working to read truth about God - listen to truth about God and remember that so many times our perspective of God is who we are communicating with.  Our perspective of God is who we are serving.  Our perspective of God is who we are worshiping.  this is dangerous - if you do this you will most likely end up one day sitting in devastation.  if you are lucky.  that's right... b/c now I can begin to know God.  instead of only knowing my perspective of Him.  

There is one final part of my week - but for another day...

So Matthew wrecked my view of God.  He wonderfully and perfectly destroyed the perspective I worshiped.  I am now getting to know God in a new and beautiful way.  What a tiny little man that accomplished such a great big job.  He touched everyone that met him - I remember the nurses and how much they loved him and this family.  I know his mom and dad would give anything to have him here with them.  I can not even fathom how much they miss him.  I would rather have kyle heathy, whole and restored today than anyone anywhere have learned any lesson from his little life.  How much more must Matthew's parents feel that.  But I share this none the less as an encouragement.  I wear Matthew's and Marshall's names around my wrist every day along with a scripture. I will always remember their gift to me.

I have been in such a dark place - but I am thankful now for the faint shadow on the wall now.

John and I have been praying this one thing since kyle's birth over and over - God, would you make us thankful for our journey.

i am getting there.  

to Matthew's mom:  you are a dear friend already and your every word and every chosen smile is an encouragement to me.  thank you for teaching me and thank you for letting me share this.


Cathy Chisler said...

Just wanted to let you know we have been thinking about you and your family. Keeping you all in our thoughts and prayers. If you need to chat or anything please do. I have an idea of what you are going through.

Assistant Village Idiot's wife said...


Vickie Homman said...

Your blogs are so transparent and thought provolking. Thank you for your honesty. Your prayer warriors are still praying. You are not alone.

Book Fairy said...

Thank you. I know it wasn't for us, your readers and friends, as much as it was for you. Thank you, though. Still praying and haven't missed a day.


Karol Ann said...

I can't even begin to imagine all that you have gone through, but I have felt those times of having to worship because that's just what you do and not necessarily what you feel like doing. The Lord will be faithful to bring you through. Someday you will look back on these days and it will all be clear... we love you guys and are praying for you. Jacob and Audrey hope to meet Kyle next month and play with Jack and Jadon.

Anonymous said...

I am glad you are back on line. I have been worried about you guys. 3 houses away might as well be a million miles away. I am glad you are started to improve, do better, whatever you want to call it. I have often wondered, even if Kyle is here w/ us, if you mourned (I guess that is the word I am looking for). Mourning what you thought should've been. Or your delivery alone, that was quiet traumatic. If you had properly dealt with that. I am glad you have a strong and good husband, set of friends to help you through this time. I am sure I used all the wrong words but hope you understand what I am trying to convey. It is OK to be down = life just gave a huge curve ball. And yes you have a beautiful baby boy (well 3 now) but you can't help your emotions. Don't let the darkness consume you.

Tabaitha Kaye said...

Thank you for sharing, even the darkest moments. It allows me to pray specifically for you.

Anonymous said...

Kelly - so good to know that you are alive and - well - ok. We are all a work in progress. As I've read your journey for so long I've had to watch your struggle with getting to where you are. I am SO glad to see you coming out on the other side. As another NICU micromommy AND a mother who has lost her baby I know that Gavin fulfilled his purpose in 16 days... and that I have to accept God's plan... without anger... it doesn't help.. it only drags us down.. but it's so hard sometimes. I'm glad you have some good friends to help you and understand you through this. It's important to keep that line of communication open and trust that those who love you won't judge you for the things you need to work through.

Constantly evolving,
Kelly E.

Adam & Andrew said...

Beautiful and painful to read because it strikes to the core of this experience. I often think of my friend's baby in the nicu that passed away and I just can't seem to reconcile it in my heart. This baby was bigger and healthier initially than either of mine and it just seems so senseless. But I know in my heart God's goodness prevails even in death, even in tragedy.

The Hanna Family said...

Beautifully written. Thank you for sharing, I feel your pain and frustration on so many levels and yes, I find myself wanting to turn away from the God I know too. It is a constant struggle.

Michelle Hanna
Mom to Noah and Jonah, 23.6 weekers

Click below to go to my Personal March of Dimes Page

Our Story

This story begins with 5 people. John, Kelly, Jadon, Jack, and Kyle (he is only 23 weeks old... and he is still safely tucked away in his mommy's belly) In an hour's time Kyle made his way into the world. 1 pound, 3 ounces- 11 and a half inches long. This family will never be the same. This child is a warrior. He has the spirit of a Lion, and more courage than a whole pride. He is fierce, and fearless- and he is teaching us to fear the Lord- and to believe that God is in our midst and healing even now. Join us as pray, as we praise, and as we journey through this life as lovers of God and all His glory.

Kyle is in the March of Dimes Promo!