Kyle's NICU Story in Pictures

Wednesday, August 26, 2009

Family Vacation!

Well - the Sherrill's officially went on their first annual "almost" family vacation. I say almost b/c poor baby kyle got left at home! After a summer of travel for john and mommy doing constant therapy with kyle - the two older boys were ready! So we headed out to our long awaited first "almost" family vacation.

We went to Fiesta TX and SeaWorld where jack's only goal was to ask Shamu if "he was a boy or girl". that is what he wanted to do! Jadon's only goal was to check into a hotel like zack and cody from "suite life" as it is called around our house.

I planned and planned - mapped out both parks for all the rides that the boys could go on (height requirements), places to eat that had kid food and were air conditioned, planned what shows to see when - what hotel had free breakfast. and then - how to keep up with a 6 year old and 3 year old at the park. so they were dressed alike, had on arm bands with our cell phone number on them, and they wore whistles to blow if they could not see us. thankfully we did not have to use any of them - came close once.

and turns out... Jadon and Jack are roller coaster junkies!!! We got lucky when we went into the park we had a worker that did the height measurements and jack was really 41.5" but she passed him for 42". so we got to ride more than we thought! and they had a blast! we road the Road Runner Express 5 times!

all in all - we had a blast! absolute blast!












Monday, August 17, 2009

Jadon again....

so daily jadon has these hysterical stories that come out of him. he is such an amazing little guy! and by the way - he wants to wear a white shirt and black tie to the first day of 1st grade! ... along with his mohawk!

Here jadon is getting his hair cut. So I found this cut online b/c jaodn is not liking doing his hair - so we were looking for something low maintenance. now the first pic is him thinking "OH WOW" he wanted to know if he was going to be bald! the second one is how HE wanted to wear it out of the mall! can't tell you how many looks we got! he was so proud! i'll post a pic of how it normally looks - when it lays down like he will normally wear it - he looks so cute!


so then we find out that some school districts don't allow mohawks - or lip gloss(not that this will be a problem for us - I was just surprised!) I have so much to learn about regular school!!!

so anyway on to jadon's adorable story.... i know... you were thinking... there is more than the black tie to school and mohawk haircut!

yes -

So the boys had just gone to bed -late- because we had a huge pirate show that night! that's a whole other post. I heard Jadon in his room and it sounded like he was rapping!!! so I moved in closer to get a good listen - and I could not tell if he was rapping, singing, it kind of sounded like he was praying... I heard "please, please..." and about that time he comes out of his room. I jumped back to the couch as acted normal. He wanted some lotion or something... So I asked him what he was doing. He said he was prayig and just confessing to god that he was everywhere and could do anything. So because of that jadon said he knew that god knew about the time Santa came to visit. (when kyle was in the hospital - the boys really had a hard time - jadon still talks and worries about it) So as a little fun surprise we had a santa come to the house and see the boys. They were beside themselves - they thought it was so cool! and so Jadon said he was "just begging for god to do that again! and telling him how cool it would be and I just know he can do it." I wish you could hear the passion that was in his voice. And I asked him if he was singing in there - thinking surely he was not rapping - I have never even heard him do that. And he says to me "well, actually I was ... until i lost my rhyme... and so I went back to just praying."

How cute is he! he was totally in there making up a rap as his prayer! I love it!

#1 - I can't believe that he remembers that far back!

#2 - How amazing is his heart that he sees that God did that just for him! He was begging god to do it again!!!!

I love it- we should all pray with such passion!

Thursday, August 13, 2009

Encouraged

I wanted to take some time in my very quiet house tonight to write down some thoughts I have been having. God has really used time and people to encourage me over the past few weeks.

I have sure been struggling for the last 2 years in my faith in God. my trust. my ability to hope. I am a very black and white person - grey is hard for me. in or out - up or down - you get my picture. and can probably see why being a good mom takes so much work for me! ha ha!

So many people approach me and assume that I see God as a good and wonderful healer and great God b/c of how he has healed kyle. Well I have really been wrestling with that idea b/c in my black and white brain - if god is good b/c he healed kyle ... then who is God to my dear friend that desperately misses her son with each breath!

now I know in my gut - thank you mom and dad for teaching me and rooting this deep in me - I know in my gut that God is good. even in all the hurt and disappointment I walked through I could not walk away from him. I wanted to many times but could not. B/c I know that God is true and Good and right. I just needed that something to base this on - and it could not be about my circumstances.

it think until this last trial it has been. so i actually have begun to see this destruction of my faith as a godsend - purposeful. destruction of the God i had built in my head and an introduction to who he really is.

so here we are at "now". 3 weeks ago or so. I was at a conference (220 to be exact!!) and I as i worshiped and sang i could only focus on grief. all the hurt in the world - how could it be - hurt and worry over kyle - hurt over marriages failing - and the list goes on..... I could not get around it - music evokes so much emotion in us and this was a good way to measure my worship - prayer life and all - when the music was a song about hurt and hope I would just cry such tear of hope and deep sorrow. when a song was proclaiming praise - i felt disinterested - unable to feel anything. so I began to ask God - "why are you leaving me here. I feel like this is you - but why have you given me this burden of sorrow - what do you want with it?" right then a man came up to me and told me he was reminded of a conversation we had years ago about preparing to meet with God and what that looked like. he said that he was just in his seat praying and God told him to come and tell me that "God hears you. God wants you to know that He hears you." WOW - i felt so much relief. like a huge weight was lifted. that night the preacher taught about walking in the spirit. as I prayed about how (always wanting a formula!!!) and a friend of mine decided that maybe it looked like just being obedient. when you feel that urge to pray - do it. when you feel that urge to serves someone - a note, a card, a meal, money - do it. be quick to listen and obey. and then before you know it you are living by the spirit. not sure if we were right but I thought I would try it. still not much joyful emotion coming out of me but this was something I could do.

later that night - a girl is struggling and we are all asked to gather around a pray over her. I was not wanting to so I sat silent. then that pounding in my heart started. DANG IT!!!! i knew I needed to speak and I said I would so I did. opened my mouth and rambled out something about warrior angels. whatever it was I knew I was supposed to say it. ... .... ... ... there I did it. whew....

well - the next night - little did i know God would take me up on it... again. i felt burdened to pray for a woman in a hurtful marriage. my heart broke for her and her family. as I was praying the pastor walked up and asked if I had one particular person on my heart that I was praying for. and of course I answered ... "kinda".... with my best -"get out of here or I will shoot you" look on my face.

back story - after kyle's birth and rough NICU months I lost faith in praying - it didn't "work". i was supposed to pray, kyle was supposed to miraculously have the brain bleed disappear, and that was that. I was to pray and my friends little boy was supposed to live. my prayers didn't "work". my trust in what I trusted (although wrong) was destroyed.

Up to this week I had not prayed over someone with my hands on them with out being forced in almost a year and a half.....

Anyway - he (the pastor) says to me "I think you are supposed to anoint that person with oil and pray over them." I about had a cow! i think i even laughed at him. i didn't even know how to do that. well you know what kept ringing in my ears? obey... listen to the holy spirit. so my heart starts beating like crazy again. AHHHH! so i begin to make my way to where she was sitting and I procrastinate at the end of the row...

...
...
...
...

then the pastor comes to me again - and hands me the oil! he was not giving up. so I decided .. here it goes. and i went and grabbed her hand and asked her if I could anoint her with oil and pray for her. when I did a flood of words came out of my mouth that i'm sure she needed to hear. gentle words of love and hope that i guess the father wanted to tell her through me. I prayed over her and then we went back to our seats.

I kept thinking I should feel something - but nothing. still felt the same.

next day - yes! I know, it keeps on going! i knew i was supposed to pray over my friend - I was not sure how much she would appreciate it. awkward i know.... but I did - right in the middle of the songs I put my hand on her shoulder and prayed. i knew I had to obey. when I was done .. we went on singing and then sat down when the teaching began. in the teaching the pastor said exactly what I had just prayed over her.

ALL OF THIS was amazing confirmation to me that God was in on this. not that I was fixed - not that this would fix me - not that I felt right emotionally - but God had a plan. I was not ruined for nothing - he would build me back. this week was like my rainbow - my promise that God would complete a work in me.

leaving this week i felt like i could breath again.

then 2 weeks later i was at another conference (220 again! - I know... these weeks are great!) a week of huge spiritual warfare - unlike anything I have ever been a part of. teenagers, adults and parents even dealing with abuse, molestation, incest, and sadly so much more. But most of them hungry for healing. what an amazing week. I spent the week learning and soaking up as much as I could from some great minds and hearts this week. but I went into the week saying to God I will be obedient again.

same emotional problems in the beginning of the week - I continued to pray and seek God - what Lord - what would you have me do - i felt nothing and one person challenged me that if someone asked me to pray why didn't i ask the holy spirit what to pray and how to intercede. so i tried that - when nothing came - I did not speak.

I do not have the ability to pray empty words anymore - i will not speak a word b/c it sound good - I will not send messages to those listening through my words in prayer, I will not use God's name or a beautiful cliche as a comma or filler. I just can't - I have to know what all this means and how God intended this communication thing to work.

A strange thing happened one night - i started to feel jealousy towards john as he ministered. this was a struggle of mine - a huge one - several years ago - 6 or so - after jadon was born.

(isn't it sad how we start to measure our time spans by when our kids were born or by when we were pregnant with who! haha!)

I would see john minister to so many and me want that attention from him for myself. It became a very big monster very quickly. but the grace of God we made it through that in our marriage. So I decided to sit behind a curtain that night so I could not see and I could focus better. and I began to ask God "why in the world am i even having these thoughts now?" i am over this? what is going on? " I had no desire to deal with that again!

and then the most amazing thing happened - God showed me or told me or whatever you call it when you have a thought that you think is from him! that the individual attention and affection that I was craving from john was actually what I was desiring from God. and what I was missing. the intimacy from my relationship with God. I was learning the listening and obeying - that was black and white but the intimacy and trust. that is what I was wanting.

so i began to ask God for that - and I was laying it on thick. I told God I needed one of those really intimate relationships where you know what each other are thinking, you know each other are there, you have inside jokes or info. You just know each other. you know the sound of his voice. I told God i needed a way to feel his spirit to sense it - to FEEL close to God. sounds totally cheesy but if you are a girl or maybe a guy too - you know what i mean - that relationship that is so close you know what each other are thinking or what might be the next move or you can sense when the other is there. that is what I was longing for. so I asked!

next day - trying to wrap this up but not miss detail! - i am talking with an amazing woman about this conference that she went to on spiritual gifts. the guys speaking was talking about the steps to move into gaining or using these spiritual gifts... the point is not that - it is this - she told me that the conference teacher said that the first step was .....

1. intimacy with the father.

my jaw dropped. not b/c that surprises me but what did God just show me I was longing for the night before?! and don't worry about step 2 - that wasn't the point. God was again confirming what he was doing in me.

so i went buzzing into the church service that night ready to seek intimacy with my father in heaven. I have an amazing earthly father - i mean amazing!

and for some reason - i think my personality - or maybe a wall or something - it has always been weird to think of God as a father, abba, daddy. all that was really weird to me - too intimate and vulnerable and weird. he was God - if I wanted to get to know him i would read a book. and that works too - but this was different!

so into the worship service I go - on my quest. and let me tell you - I worshiped with a smile on my face like I have not done in years. I laughed as I worshiped b/c I felt like dancing before God on his throne. now - I didn't b/c well I don't know why but i kinda did dance there in my spot. but I felt like dancing in the aisles! that is the joy that I felt - the love - the connection.

I was able to pray over those sitting around me - some one came to me and asked me for prayer - God gave me a verse for them and I think it was to me too - it was a warning not to return to that yoke that held you as a slave. WOW - what a warning.

now - have i felt joy since that day - no - sorry to say - but when I do get angry or really frustrated or disappointed or want to act in pride, hurt, grief, or whatever might be going on - i remind my self that I don't want this to rob my joy. so i take a deep breath and remind myself that God created me for an intimate love relationship with him. not to be angry - he did not create me to live in grief. he did not create me to have a poor self image. he did not create me to mistrust or build walls around me.

what a set of weeks! there is a song we sang that I finally could rest in by the end of the week that says "oh how he loves me so!" and I believe that.

Wednesday, August 5, 2009

the ever changing song...



Jadon is our little rock star! anyone that knows him can attest to this! funniest thing. he pretends daily to be a worship leader like his daddy. he insists that the show run exactly as he has it planned and there is lights and smoke and a preacher and so on... the other day he came home from the Second Baptist Houston VBS (with 3000 of his closets friends) and he of course bought the cd and had all songs and word memorized.

Once song says "Jesus paid the price; so we could have eternal life..."

His aunt called me during the week of VBS to let me know that she heard him just singing away in the back seat "Jesus paid the price so we could have eternal lice".... nice.... jadon knows what that b/c they check for it at school. but I guess like any talented singer - if you don't know the words - make them up!

Then yesterday I heard him in the back seat listening to the same song - "Jesus paid the price so we could have a fertile life" Not sure where he heard that word! I laughed so hard!

and jack all the while has his mouth wide open with arms and legs flailing - he doesn't usually make sounds he just stares at jadon - wiggles alot - and pretends to mouth all the words!

Kyle is grinning through the whole thing!


Sensory Input


kyle fell asleep after a doctor visit. he has a sucker in one hand and a tongue depressor in the other! He also has ankle weights on his ankles. Just a quarter pound on each ankle. This is for sensory awareness. kyle has a hard time organizing his space. it was described to me best like this - and this is really when I notice it too - he has been walking for a while now but still walks like a new walker. very little balance. tumbles over all the time. if something breaks his organization of "this is how I am walking" he doesn't compensate like he should. ie) stepping over or going around a toy, someone approaching him, a small step, etc. Also if we are at home he is organized enough (b/c we are there so often) that if he wants to go down a small step he usually thinks to hold the wall and step down one foot at a time. but if we were at therapy or out at a newer place he would not stop to think "this is a step, i should slow down and go one foot at a time." if he goes up a step he doesn't seem to notice the if he steps back he will go down a step. all of this b/c when his feet hit the ground he does not gain the same input that we do. so this is why the weights will help.

We have already noticed a difference. It is slow going - but it is a difference.

I wanted to ask for opinions out there from moms who have dealt with this. Kyle is a former 23 weeker but doing amazing. I looked up Sensory Disorder or Pedi Sensory input problems on the web but all I could find were suggestions and info for kids that have this very severe. I read over the diagnostics for SID Sensory Input Disorder and kyle only has about 4 of the 18 symptoms. So I feel like I am having a hard time finding resources. any thoughts out there? i have an amazing team of therapists for kyle. I would just like more reading information.

Thanks.

Kyle is a cutie - he waves bye and says bye bye, he says Hi, Up, Down, Please, Cookie, More, Mama, Daddy, Jadon, and he can bring his arm up to his mouth and make a fart noise! I am most proud of that. he also laughs at himself if he thinks he is funny!

Monday, August 3, 2009

Kyle's Story

Kyle's Story from 31Films on Vimeo.


wanted to share a video that was done about kyle.  It is amazing.  WoodsEdge church in the woodlands wanted to use kyle's story as a part of their sermon.  so they hired 31 Films to make a video that shares kyle's story.  It was amazing to make - watching hours of video turn into a 5 or 6 minute clip that could provide someone... anyone... hope.  We had a great time making it and have had an even better time hearing stories of people it has touched.  

God has done such a great work in my heart recently.  I have had a hard time seeing kyle's story as one of hope - I have been overwhelmed with grief for others whose story doesn't end this way.  I have been overwhelmed with fear for what Kyle's future holds.  But God is so gracious to renew and to walk with me hand in hand as he shows me what he has planned for all of this.  I am sitting in his grace now anxious for the each new day and what that means with kyle and our family and what that means as others hear our story and feel our ministry.  a song I heard recently says - It is by the blood of the lamb and the word of our testimony that others will overcome as well.  I am learning that.  I hope you enjoy kyle's story - please share it with others!


Saturday, June 13, 2009

out of the mouths of babes...

I really need to go through my video's so I have the video with the story - but John has been teaching jadon to ride a bike - with no training wheels - well the other night they were out working on it again and John came in and called me out there - jadon was holding up his bike and going to show me how he can get on it and going on his own... this part was hard to master.  His bike fell over and I was just waiting for him to throw himself down in frustration and want to quite. (jadon is such a perfectionist and has such high standards for himself.  if he does not attain them the can really crumble!)  anyway - I was worried that "crumble" was coming and IT DIDN'T.  He just shouted "it's okay mom..." as he picked his bike back up "It's just harder with out my dad by my side" ...


I almost BURST into tears. and of course john almost did too as he said "now.. that'll preach!"  and how right he was.  Jadon is constantly teaching me.  - jadon really was born to change the world.  He is a true leader.  I love being his mom and I can't imagine what he will do one day.  or what he will do just next year as he storms into public school!

And of course I must share jack's "out of the mouths of babe's" story....

today we were playing down at Zara's house - just one of the awesome neighbor's on our street. zara's mom and dad have 3 kiddos as well - zara and jadon are 2 months apart and have played since they were 1!  anyway, today they had the pool out, the picnic table, the sand box - the whole neighborhood was having a ball - about 8 kiddos in all.  and zara's mom had one of those air purifier/fans outside that look like a tall skinny cylinder with a grate over the front where the air comes out and control buttons on top.  (wow long story - but it will be worth it)

so today, in the middle of playing, jack walks up to it and starts to spout out his favorite mcDonalds order... then when no one spoke back :)  he says "hey.. we're hungry!"

this kid loves life  -  most everyday he impresses me with his amazing balance of strong willed and sensitive - but in everything he does his desire is to find JOY!  I love it.

and kyle for today - i think this pic tells all - between the pool, the pizza, the cupcake, the nap, the bike ride, and the favorite of the day - the sand box.....




Not sure if you can tell but the belly of his shirt and his feet are solid sand and he is sopping wet.  best of all - his shirt says "get a jump start of life"!  haha!  boy does that fit him!  the most significant think that came out of kyle's mouth today?..... sand, a bouncy ball, a leaf, pool water....

Tuesday, June 9, 2009

picture update...

Ann marie - these are for you!  and everyone else can enjoy them too...

Jadon and two of his best buds graduating from kindergarten.  Don't they look like little high schoolers!  I just can't believe how old he is getting.


You know when the house gets too quiet and you wonder what "they" are up to?  This is where I found kyle.  This is the boys art table in the play room.  A coveted area by kyle b/c he is not yet allowed free reign over the marker or crayon bucket!  So this is where I found him the other morning!


Jack - being a dragon at the pool.  If you look closely ...his goggles are upside down.  I LOVE IT!  Every night I make up a story for jack before he goes to bed and it is always about a dragon named jack and his adventures.  Jack always says "mommy, i'm not a jack dragon I'm a jack jack".  He also makes me pray for no monster, aliens or emergencies every night before he falls asleep!  too funny.  he gets the emergency thing b/c when jack shared a room with jadon I would say before I left and closed the door, "no getting out of bed" and Jadon - mr. prepared... would say - "what if I'm worried about monsters or there is an emergency".  So now jack thinks emergencies are the creatures that can come in his room at night!  IMAGINATION is jack's middle name!


This is Kyle getting his first hair cut.  He was so excited about the sucker that he kept opening his mouth wide to get more.  Not realizing that you had to close your mouth down to really taste it.  He finally got the hang of it!  and if you can see jack in the back ground - you will notice that he is wearing orange and has whiskers drawn in marker on his face.  He wanted to be a tiger that day....


Kyle and Daddy after a breathing treatment.


Kyle on the phone during a breathing treatment.  These were about 2 weeks of breathing treatments every 4 hours and then every 6 hours after being in the hospital with a collapsed lung and a bit of pneumonia.  He is all better now.


Jadon in the middle of his graduation performance!   One of the directors wrote a poem about each of the kids - jadon's talk about him being their leader... after it was over you could see jadon whispering down the line "bow... guys... bow... take a bow... it's over...."  too cute!  what a leader!


This picture just makes me smile - it gives me hope - not hope that kyle will be okay - kyle is so much more than okay - but just hope - the kind that moves us forward to tomorrow and then some - hope that allows us to pray, to care to worship, to love to teach... HOPE - and I pray that one day b/c of this picture in my mind I will pass hope to others.  These three boys, beautiful and perfect, amazing - love them so much!  (uh... and if you didn't notice - jack picked his clothes - a button up white shirt like jadon, and jean shorts rolled up 3 times.... nice.)

Monday, June 1, 2009

hope

i realized last night .... the questions was posed - how do you see God. one said - I bet you see him as a healer - b/c of what he has done in your life.

you would think so wouldn't you. I stewed on that really puzzled at why that was not my thought 18 months after my child who they said would not live - lived. and he is not just living - it is abundant. he is LIVING. so I thought who is he - and my reaction to my thought was. (I hate to even type it, but it is true). he is a betrayer. He has betrayed me. WHAT? WHY? HOW COULD I THINK THAT?

still stuck in my formula didn't work. somewhere along the way - I figured God out. No really - I did. (that's a joke) but I thought I had. my formula for fixing people, things, gaining blessing, living happy. Just rules for life. being a good wife, good mom, good friend, good godly person.

for some reason God decided to unveil this dirty horrific broken hurting desperate world to my eyes - all through a group of little babies and their hurt grieving wandering desperate parents. and i was one of them.

how did this happen. and how did I end up stuck with no formula - no God and so focus on this world and all the pain i had been missing - excuse me - ignoring - for 33 years.

some one suggested last night that yes - I may feeling like i am shouting my hopes up to the sky - no matter where I am shouting them - without God ... there is not even a hope of them being heard. then I realized maybe the big deal is not defining exactly who god is before I can trust him - maybe the big deal is that with out him there is no hope. none.

it is like my focus is just off. maybe the point is not how it all comes out but that he is there. he is there through all of it. he is with us. he promises not to leave us. maybe this is the point.

I am living in a shock that people hurt -all over, everywhere there are people bearing hurt that I could never fathom or live through. how will they live, how will they breathe, how will it all be okay? it is an overwhelming question to my heart.

Hope. could that be the answer? b/c he is there we have hope?

Monday, May 4, 2009

Kyle at home...

Kyle is home, but still sick. Kelly is having to keep him upright because everytime she lays him down, he throws up, so she is trying to keep him hydrated and then, keep it in him! He is still pretty sick, but he is home. Kelly was asking people to pray that his fever would break for good, and not go higher again. He needs to keep drinking and eating,... so pray that his little appetite comes back! Also, pray for Kelly as she is very tired. I am in Nashville, left the day before Kyle woke up so sick. I hate being away right now while Kyle is sick but,... here I am blogging from nashville while poor kelly is going on hour 20 something of holding Kyle... she is an incredible mom! Pray for the other dudes at the house too,... Jadon and Jack as they are having to sacrifice some of mom's time right now... they have DeeDee and pops to help them stay occupied,... but are ready for Dad to be home, mom to play and Kyle to be well I am sure! The Sherrill life is as chaotic as ever, but we would have it no other way,... God is at work... even through the trials of sickness...

Please keep praying for all of this!!!!

thanks so much!

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!