Kyle's NICU Story in Pictures

Thursday, January 10, 2008

The RE:education of Community - John

Guess who's back... back again... (john)

for those of you hip to pop culture, yes, I did just reference an eminem song.
Been a while since I have written, journaled, pontificated, scribbled some thoughts, so I guess tonight would be just as good as any to bring something to you, hopefully of value, but maybe, this could just be the post to ignore... we shall see...
either way, I must remind you of a few things before I get deep into the ramblings of my mind tonight.

1.  I write the way I talk,... stream of consciousness if you will... so this means, while I TRY to filter, sometimes (MOST times) the real me comes out on paper, online, whatever...
you get the point.  I am not, never have been, and never intend to be "GOOD" at mediocrity when it comes to presentation.   Let me break that down... I am NOT good at pretense - trying to convey a person that I am really not, for the sake of religious posturing.    It has not gotten us anywhere in our faith today culturally speaking unless you count of course the number of church splits etc from lack of true authenticity and community.

2.  I hope what I am about to think about out loud doesn't find you too offended.
I usually write these little articles of fun for my eyes only, saved in a file on my computer, which never see the light of day unless of course on my own blog, myspace, website all cleaned up, churched up and pretty enough to be "Safe for the whole family"  isn't that after all what we are suppose to be?  Like Jesus? Safe for the whole family?  That is another point of contention.
Our God is NOT Safe, but,... oh well,... another journal, another day...

3.  I AM going to talk about Kyle, because this is Kyle's blog.  I do not want to mess that up, or even jeopardize how many people are reading, praying, and loving us,... BUT, I do feel that sometimes, for the sake of unlearning and relearning, I must lend a voice.  (Not that I am the know all... but God has called me to speak and gives me words to say,... )
After all, we have had those that have said how you are encouraged through this, and I want this to be encouraging, even though it may come out with the tone of a good old fashion scolding... not so much the case, however, I wouldn't mind having conversations sometimes with the "anonymous" people of the world who write comments on the blog that may be misconstrued by many of us as just plain rude.  So... here we go...

First things first, Kyle is doing SUPERB.  I can not say enough how great he is doing right now.
He looks cute as ever.  I think he looks like Jadon.  He definitely favors him in many ways.  He is on c-pap, pressure of 5... they are weaning that tomorrow to a pressure of 4.  This is the lowest they go with C PAP I believe.  They will let him camp there for a few days, ... get adjusted, then it is back to trying nasal canula again by monday.  He is holding his temp well and is beginning to wear clothes everyday.  He is growing well weighing in at 3 lbs and 7 ounces!  He has a real cute cry (right now) haha...  it is great to see him doing so well.   They are looking into doing an EEG when he is off CPAP, which will hopefully allow us to begin to wean off the phenobarb medication for his seizures.  We will see what that reports.
Kyle has a little friend named Coy who is having a hard day today.
Please pray for him.  Pray that his lungs will heal.  Pray that all medications work as well as the study they are doing with him.  Pray for health for Coy tonight.

Ok,... so there is that.   Now, for the blog that should really just appear on my personal/ministry blog, but... this may well be encouraging to some, so... I write.  It is in reference to a comment left by "anonymous" which could be anyone of over 82,000 people who have read and commented on the blog.

We usually get these great and encouraging comments to all posts, but this morning, we were made aware of a comment that took us by surprise.   Oh, and by the way, please don't comment on this blog entry.  It will just be far better to leave it alone.  If you want to talk about it, please don't use this blog for it.  Email me personally at js@johnsherrill.com.  I will be glad to have a discussion with you one on one.

This comment was left on a post by our nannies from yesterday I think... it deals with expenses, our money situation, etc... which is altogether a little strange, but... never the less,... whatever.
The post was an encouragement on our behalf to remember to pray... to encourage people to not forget what is happening in our lives.  We greatly appreciate all of you, and know that you don't forget about Kyle,... after all, you are still reading,... but in being true community to us, Carol and Traci (the nannies) were simply being encouraging to you, the readers, to please continue to help us out in our time of need,... after all, isn't that what true community is?
Anyway,... here is the comment that was left:

anonymous said...
Like Brenda said, while the family is definitely incurring extra living and other expenses during this time I think it's fair that when asking for donations that people know that babies born under 2.5 lbs qualify for medicaid and in Texas get 100% of their NICU medical expenses covered. So donations are needed for the family but not necessarily to cover the mounting hospital bills. This is an awesome blessing to have.

Praying for Kyle and his family daily and so thrilled at his progress!!



Ok,... so thanks for praying for us, anonymous... but let me help you a little.
Maybe you have walked in these shoes, maybe you haven't,... BUT never the less,
100% is NOT taken care of.   There are also many other things to consider as well,
but I really don't need to get into the complexities of our finances, etc... not the point.
The point is the unlearning of bad habits and the relearning of authentic community.

Christ followship is a funny thing.  I would say it is totally different from christianity today.
Christ followship brings me to the place where taking care of the least of these is a commandment, not a "cause."  It is a mission,... not a mission trip.   Christ followship means
loving my brother.   Religious, non religious, black ones, red ones, white ones, gay ones, straight ones, rich ones, poor ones, prostitutes and deacons.   Christ followship defines love in the purest of ways,... it is a daily striving towards walking, and looking like Jesus in all things. 

This I find is very contrary to the church today.  There are many who are starting down a path of authenticity, but sadly, they are far out numbered by those that are still trying too hard to be relevant or who aren't trying hard enough.  They are far outnumbered by those that are still caught up in religious practice rather than a love affair with a friend in Jesus.  
Christ followship is being driven to people of all races, sizes, economic backgrounds, ethnicities and cultures, and I would submit - almost driven away from the religious rhetoric of Rabbis gone by.  (what do I mean by that last statement?)  We have followed in the path of pastors and preachers far better than the path of Christ.  We have listened to the new laws added to that of Jesus and continued to add more and more to what Faith in Christ HAS to be rather than taking on the yoke of Christ.  still too hard... ok, further break down...
We have made up new religion with all new game rules (still calling it christianity) while being careful to add Jesus to the end of it to make it all right, being spoon fed the way to do it, never questioning nor thinking, nor studying... simply trying to keep the law of american denominational Christian values so to be a "good christian"  all in all,... it just simply does not work.  Christ followship means an abandon of  all things, an abandon of self, and an embracing of who He is and what He loves... to name a few:  A worship of Him and a love for His glory and His people.  Christ followship to me has become a sacrificing simply because the still small voice of the Lord told people to keep my kids, send some gas cards from across the nation, give grocery cards, send an email, an encouraging text or voicemail, ask how to support our ministry so it can continue through this,  buy preemie clothes and blankets for Kyle, leave gifts on the porch for our boys, cook meals, give gift cards, etc, etc etc etc etc etc...

It is obedience to what the Lord tells us to do whether in crisis or not.  Whether you are in the crisis or on the outside, praying, commenting, cooking, baking, leading, teaching, etc.....

So, to try and help my brother/sister "anonymous"  yes.  Our expenses have gone crazy.
Yes.  My income is different now.  Yes.  Our deductibles are going to be interesting. and YES!
Praise God, medicaid is going to be a great thing to help offset the biggest of all these -- millions of dollars to hospitals- literally.  It will help,... 

but please, learn to do something we have not been trained to do in our christianity very well...  

Be a Christ Follower and ZOOM OUT.  Look through the lenses of Jesus.  No matter what the situation is.   No matter what family it is the Lord speaks to you about.  Take what God has given you in time, talents and treasures and give them back to Him.  Whether it is in babysitting, giving money, giving time whatever.

I don't care if it is Bill Gates with a computer problem and you just happen to be an I.T. person.
If God speaks to you and tells you to go to his house, fix his computer and give him a visa gift card,... for the sake of obedience to the voice of the holy spirit... just do it.

That is the beauty of obedience, Christ followship and community.   It is the opposite of reason or logic.  It is faith.  Listen to the Lord -- even when it seems crazy, or unnecessary or even not warranted... and give.  Do what He says... especially when it comes to the least of these.

Now, to clarify... we are NOT the least of these.  Don't be mistaken.  The Sherrill family is a blessed family.  We have great family.  We have great friends.  We have a support network of a great board of directors for a ministry,... a community of faith called 220, a homegroup, and many many prayer supporters.  Even with our financial situation, we are still statistically living in a country that literally holds 98% of the world's wealth.

However, if we can't practice what we preach with those that we say we love, HOW can we be authentic when it comes to true religion?? (james 1:27)  I am not going to quote that for you- do your homework.  

Please know that I have a compassionate passion to see the church have a reawakening.
I want you, anonymous, to feel encouraged to think with the heart of Jesus when approaching people -- no matter what or who... no matter the situation.

When it comes to love and obedience,... the phraseology "just to be fair" should not exist.
WHAT DOES THAT MEAN?  Is there a suggestion of non disclosure here?  
All I read from that nanny blog is the voice of one, trying to be encouraging and helpful
to all of us - her community... to remember... to pray,... to give if the Lord leads...
that's all.  



Please know our family absolutely appreciates all things people have been led to give, and do.
We haven't asked for it, but you have given. I appreciate all of you who have come up with creative things and ways to help our family.  That is love in action. That is you being Jesus to us in our time of need.  Thank you Carol, Traci, Shauna, Caroline, Jen, Laura, homegroup...We value you helping restore community in us once again.  Thanks to you, crossroads and woodsedge.  Thank you prayer supporters.  I could blog and blog and never be able to say thank you enough to all of you... but, please know that in all things, more than we desire help, or support,... we truly desire obedience to the Lord.   On Your part and ours.  THAT is what Jesus would want of us.  Motivated action out of  love... not pity or obligation.
So, let us all continue to be motivated out of Love.  Christ Followers.  Crucified with Christ -- not living to self or for self, ... but allowing the truth of Jesus to live in and through us!  Let the lives we live out in flesh be through faith in the Son of God who loves us, and gave Himself for us... in all and through all, and FOR HIM!

10 comments:

Anonymous said...

Welcome back John.

Still praying, still believing and still expecting continued healing!

CANDY HUMBER

Big Jack said...

Your response was much better and more beneficial to us all than mine. Well done....

Stefanie Oney said...

Well said!

Anonymous said...

As the parent of a micropreemie with close to $1 million in NICU bills in Texas, fortunately the anonymous commenter was right about the NICU bills. We paid nothing.

I agree that other expenses do mount, particularly fast food and parking. But I wanted to offer encouragement that you do not need to worry about your 10 or 20% deductible. It really is all covered. Now, after NICU is a different story ....

Anonymous said...

AMEN!!!!!!!!!!!!!

Cathy Chisler, WV said...

I had twins at 26 weeks, and the spend 98 days in the NICU. Their bills were well over a million dollars each. The stay was covered by our insurance and what was not paid for the state medicaid took care of the rest. That was a large burden to not have to worry about when you have little tiny babies to worry about, the bills were the last thing we needed to worry about. They are almost 3 years old and still have the medicaid to cover other medical issues they might have from being so premature. My boys are such a blessing to my husband and I. God only hands these huge challenges to ones he knows can handle them. God bless you and your family. You have been in our prayers since the begining.

Anonymous said...

vthanks to both of you for speaking from your heart and soul. What awesome parents Jadon, Jack and Kyle have! I believe you will hear Kyle call you mommy and daddy! What beautiful pictures of Kelly and Kyle-thanks for posting them!
Praise God~love and prayers,
katy, steve and family

GranMammy B said...

I had to read your entry several times - you are sometimes hard to grasp all at once - at least for me since I'm old (I use that excuse for everything...my 18 yr old thinks I walked with the dinosaurs--you met my precious Brittney @ Winter Conference w/my other precious ones - Matt & Meg'n. They - along w/PFC Josh in Iraq - are the twinkle in my eye, the joy of my life, & my pride & joy !!) Anyway, John & Kelly, I pray that something like that "anonymous" entry doesn't cross your mind again...forgive & move on. I'm sure they meant well. And I pray that all your medical expenses ARE paid for by medicaid or whoever! And the ones that truly love you & love Jesus & truly desire to be like Jesus & honor HIM w/obedience by doing whatever each can to help, will keep on doing.
I hope you know how very much The Sherrill family through Kyle's journey since 10-22-07 have touched, moved, gripped, & changed so many Christ-followers that know you, & don't know you personally & may never have the chance to know you any better than through these entries - we have been changed!
Don't ever think that everything that goes on because of Kyle's early birth hasn't been perfectly planned & for a reason that none of us will ever really know, by our awesome GOD!
So Glory to God for HIS perfect plan! I just pray my eyes will see & my ears will hear & my heart will understand what HE has planned through all this.
I vow to pray with you till you ask me to stop...
I love you for growing me & giving me 5 more precious lives to love!!
Hugs ~ GranMammy B
Barbie Weller - Mansfield

Adam & Andrew said...

It's true, our boys incurred millions in medical expenses and we weren't billed for even a penny. So please don't lose sleep over the medical costs piling up. At Woman's we were provided with 2 parking passes, you might ask your NICU director how you might obtain one for your hospital, it seems wrong to make parents pay to park everytime they come visit their little ones.

Praying that all your needs will be met and that Kyle continues to thrive.

Anonymous said...

Hey friend...

This is Jen W and as you know my brain is nutty.

I have just a comment TOTALLY off topic... but it strikes me and I wanted to comment back.

Of all of the things I have read that Kyle has gone through - for some reason his little skin when he first entered this world really bothered me... that it was so raw and blistered and especially I remember reading that his little stomach was just open wounds that wouldn't heal... and casually you said in this blog that he wears clothes everyday.

PRAISE GOD! So is his little skin more "normal 40 week" baby skinlike? For some reason that really got "under my skin" (forgive me for that) and I was just so very thankful to read that today.

Your sweet man is growing up... healing... the relief that pours over me is overwhelming.

I won't forget. Won't quit praying... but I love hearing that sweet Kyle Sherrill wears clothes everyday.

I may run out and buy some soft sweet tiny onesies.

Love you guys... and coming to meet Kyle in person SOON I promise.

Jen

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!