I started this post a few days ago on a very different note.  I deleted that post.  I decided that I needed a few days to process and get some perspective.  That perspective came this morning at church.  We are visiting a new church community looking for a new home.  Most of you have heard me refer to God as my Heavenly Father and anyone who is LDS knows that this is a very “LDS” thing.  But to me, regardless of what church community I belong to, God IS my Heavenly Father and I cannot imagine ever speaking to Him in any other way.  For a while now, my heart and soul have cried out for something, anything that felt like home.  Having been displaced from my own home for that past 4 years and ending up giving it up last year has made my soul long for something that like mine.. my own home for my heart.  A place that felt like family and like I could exist there in peace and gain hope and perspective.  I had felt the tugging at my heart for the past year now to visit a certain church that has moved into our neighborhood and I always found a reason to put it off.  Man it is HARD to get up at 8 am on a Sunday after working until 1 or 2 am shooting a wedding but at some you just have to do it.

This morning as we were standing there listening to the worship, I had to fight back tears as I heard these words:

“It is well.  It is well …. through the storms, I am held.  It is well.  It is well with my soul.”

Thinking back to the last 4 years I look back and think these EXACT words.  Through everything, every heartache, scary time, breaking heart, sickening days, impossible choices… it is well with my soul.  Yes, I will admit that my life, until this point may not have been a shining beacon of the perfect “christian”.  I don’t feel the need to be “religious” at all.  I, however, am VERY spiritual.  Yes, so I curse like a sailor … it’s my vice…. but never have I denied the total and complete blessing and grace that my Heavenly Father has allowed me to live under.  I feel no less, “close” to him because i have lost my “religion”.

At any rate this morning’s message was about Discovering God’s will for your life.  Imagine that.  It never fails that He always manages to be JUST where I am and know JUST what I needed to hear!  When thinking about God’s will for our lives people LOVE to quote Jeremiah 29:11 “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”  but I wonder how many people have read the verse just before that, Jeremiah 29:10 ” This is what the LORD says: “When seventy years are completed for Babylon, I will come to you and fulfill my good promise to bring you back to this place.”  SEVENTY YEARS!!!!!!  God never promised us that it would be quick or easy   I would say that 70 years in Babylon was probably HARD, wouldn’t you?  If you think about that there is power in those two verses but some people like to read as selectively as they hear.

Or take for instance, Paul.  ^{Acts 20:23-24} “I only know that in every city the Holy Spirit warns me that prison and hardships are facing me. ²⁴ However, I consider my life worth nothing to me; my only aim is to finish the race and complete the task the Lord Jesus has given me—the task of testifying to the good news of God’s grace.”  Paul went into the journey, knowing full well that he could be imprisoned.  I think about life and how very familiar this feels.  We went into Kyleigh’s Morgan’s life KNOWING full well that “hardships” laid ahead.  Not that anyone ever really could have imagined this but it is what it is. The next verse is what Kyleigh has taught me… my only aim in life is to finish the race and complete the tasks that Jesus has given me.  Truly.  People ask me if I was scared that Kyleigh would die and you know this verse is what best describes my LACK of that fear.  I know that my daughter was sent here for a big, amazing purpose and I cannot help but think that her purpose cannot possibly be done yet.  I cannot wait to see the testimony SHE will have from her own voice when she is old enough!  So for now, while I don’t know WHAT that plan is… I know that there IS ONE and that is enough.  I will continue to fight, the run, to move forward and to believe that everything will be just fine.

So that is the back story to this next part.

Part B: You know I feel a bit like a broken record today.  Sadly enough Thursday was  NOT a day unlike any other.  I have been here before…. felt this way before… cried these same tears before.  Too many times as a matter of fact.  We made our mecca to Cincinnati as we do twice a year for Kyleigh’s continuing Urology treatment.  Kyleigh underwent a VCUG (VoidingCystoUrethroGram), formal Urodynamics, Renal Scans and Lab work.  The battery of tests that my daughter undergoes each 6 months are NOT pleasant and I cannot believe that she takes them all in stride like she does.  It would send many a grown man crying from the room to have to endure them but she does it, not because she wants to but because she must.  And she gets some lousy stickers in return yet she is THRILLED when she finds someone who has a princess.  Mommy thinks she deserves way more than stickers!!!

Conclusion: My daughter is again VERY sick.  I knew in my heart that things were not right but everyone kept insisting that she was fine.  Me, I am the mommy.  I have that instinct… I knew.  Off to Cincinnati we went for her semi-annual Urology testing and check in.  Kyleigh has been monitored by Dr. Shumyle Alam at Cincinnati Children’s since she was 16 or 17 months old.  That was the first time he saw her bladder and it was admittedly one of the worst he had ever seen.  In just a year and a half my daughter’s tiny body went a long way toward totally destroying her bladder and kidneys.  At almost 5 years old her body is still attacking itself and her bladder is still failing.  Her kidneys are getting worse.  It’s time to pull the plug on the whole operation and stop the progressive worsening of her bladder and kidney which could eventually cause her to need a transplant or even bring her life to an end.

What is WRONG?: Kyleigh has what is called a neurongenic bladder.  But there are various WAYS in which a bladder can be neurogenic.  We know, beyond a shadow of a doubt that the combination of having a tethered spinal cord for almost two years and having TWO back to back open heart surgeries has left her with nerve damage that is impeding her bladder function.  A bladder is a muscle… like a heart.  If mis-used it can become rigid and scarred.  Kyleigh’s is already there.  WHY she is “continent” we do not know.  There is no reason why… and in all actuality this which we call “continence” is not in fact and it is damaging her kidneys.  Before now, Kyleigh has only ever shown Vesicoureteral Reflux in her LEFT kidney.  Now, its bi-lateral (meaning in both) and worsening by the day.  This is a painful and dangerous thing.  Her labs and GFR are still in the “good” function range for her kidneys so that is EXCELLENT news.  GFR is 114 to be exact!!!   But we know that this number can quickly degrade so we want to do anything possible to maintain where she is now!

How do you fix it?: Surgery, cathing, meds, and prayer.  There really is no other way.  2+ years of cathing, then not cathing, medications, then no meds, has proven to us that her body is not going to play nice and respond the way it should.  Even with interventions she is still damaging her kidneys and bladder.  So… surgery it is.  But some things are still up in the air.  At this point her urologist does not want to operate immediately because we need to test the bladder and see if it will respond positively to meds and cathing.  So back to cathing we go (can you hear the joy in my voice?)……………  within 6 months we will know if her bladder is going to respond and relax or stay rigid and require another procedure on it.  Right NOW… we are scheduled for a bi-lateral ureter reimplantation with a mitrofanoff.  What is a mitrofanoff?  A port in her tummy that will allow her to cath via her tummy instead of from below… as girls get older I think its important to help them maintain as much privacy as they want.  Kyleigh doesn’t even want to wear a DRESS without bloomers or shorts under it so she is a pretty modest cookie.  I support that wholeheartedly!  LOL   This summer sometime we will also go back to Cincinnati for one week for “Bowel Management clinic” with her colorectal surgeon Dr. Levitt.  During that time we will try to see if we can balance her laxatives enough to continue using them.  If not then we will transfer her to an enema system.  If that happens then we will also install another “port” called a Malone / ACE  that will allow her to instill her enemas through her belly instead of rectally.  Now… IF her bladder does NOT respond then she will be facing an additional Bladder Augmentation.  These are bad, scary, hard surgeries with LASTING long term affects and VASTLY increases her risk for cancer (and we are talking cancer when she is YOUNG!!!… that is BAD.)  So we are going to try, with all our might, to stop that surgery from happening… meaning PRAY NOW!

PRAY NOW!!! Seriously… we have never been the people who have asked you to pray for miraculous healing of our child.  We have asked for blessings of wisdom grace and blessings for our doctors and medical staff.  We are asking NOW… that God will allow these interventions to affect her bladder in a way that would ELIMINATE the need for this augmentation.  We do not want it for her and NEITHER does her doctor!!!

What about Dr. Alam? Didn’t you fire him?:  Yes.  Many times I have fired this man.  We have had our differences of opinion and personality, but… and this is a huge but… I swore that I would never let ANYONE operate on my child that I did not FEEL ok with.  It had to be WELL WITH MY SOUL before it was happening.  This time.. we walked into that office and it WAS WELL with my soul.  I think, over the course of some years with him, Alam has grown up a lot as a doctor.  I think I have grown up as a mom and now… I am ok with this.  I am calm.  I have peace and hope and pray that my Heavenly Father will continue to extend His grace to Kyleigh for this next round of surgical procedures.  So in short… Alam and I are good.

The GOOD NEWS!  Yup there is good news… aside from the fact that Kyleigh still has a good amount of function in her kidneys, all of the procedures listed above can be done AT ONE TIME!!!!!  It’s going to be a hell of a long day in the OR and hard on our hearts and nerves but it is best for her.  (see there I go loosing my religion again…)

What can YOU do? People have already started asking to help and I learned a long time ago… accepting help does NOT mean I am too weak to do it all myself.  It means I am SMART enough to let someone help me accomplish things that a single human being, or two or three, is not meant to be able to do alone… so be it!  LOL  We will take all the help we can get!!!

We are currently asking for prayers for the following:

1) Kyleigh’s body and EMOTIONAL state. She broke down crying in the parking lot of Alam’s office when we told her she is not allowed to potty on her own anymore.  The entire weight of the fact that she is NOT NORMAL and will never be came crashing down on her shoulder in that one single minute and part of me died inside.  To look at my amazing girl and tell her that life is about to change again but that we MUST do these things to make her better was not easy and its not going to be the same as when she was a baby.  I MADE myself ok with this before because I resolved that she would not remember most of it.  Now, the stakes are higher.  This is a different ball game.

2) Me and Troy.  Together and separately. Last time we went through something this hard we both (and together) came out barely breathing, marriage a mess and shells of who we used to be.  We cannot go through that again.  We need some good Christian couples to join together with us in faith that God will continue the restoration of our souls through the next year especially.  We also need people to understand that this is NOT easy on us.  The gravity of this situation can NOT be understood by anyone, no matter how hard you try, unless you have been there.  That makes for a very LONELY feeling. Pray also for our physical bodies.  Just recently we have decided to try and get healthy again but having very little time to ourselves makes that hard.  Eating on the road, in hospitals, at hotels, is not great… also, every single time I am in the hospital with Kyleigh the stress of the situation gets to me and I end up sick somehow.  Everything from strep to GI bugs… we do NOT need that for Kyleigh or for us!

3) Financially we were JUST pulling ourselves out of the whole that Kyleigh’s first three years of life put us in.  Last week we became 99% debt free.  This week we are staring down the barrel of a loaded shotgun to our finances and knowing that those bullets are headed our way.  We need a prayer for our finances, and those of our family that help us so much, that God will bless us with abundance and the ability to handle another impending financial strain.  We have no idea where the money will come from but we know that given the choice between our daughter, and the WORST possible financial situation in the world, we choose her… always have, always will.

4) Pray for our doctors, surgeons, nurses, medical staff. Pray for every single person who will come into contact with our daughter.  Pray that God will richly bless their lives, their finances, their families, their homes, their hearts and their practices.  Pray that God will strengthen and increase them with good measure.  That their cups would be full and overflowing.  Pray that God will give them wisdom and clarity of mind when dealing with anything about our daughter.  Pray that they will be careful, caring, considerate and concerned.  Pray most of all that their hand will be blessed with skill to do not only a good surgery and procedures but FINE ones… ones that make everyone else astonished!  Pray most of all for Dr. Alam, Dr. Levitt, Dr. Breech (always Dr. Joe) and call them by name as you pray.  I truly believe in a purposeful prayer!!

5) Pray for our boys. This is different for them also as they too will remember this time.  This will upset their lives.  They will be in school and will have to deal with normal daily stresses at home while we are gone on top of NOT having their mom and dad home.

6) Pray for my parents that they would be blessed with peace, courage, kindness, empathy, FINANCIAL blessings as they will be caring for the boys when we are gone (and man let me tell ya my kids eat a LOT!)… they need peace in this situation too because it stressed their hearts also.

7) Pray that everything will happen according to our Heavenly Father’s perfect plan and I can’t help but find myself hoping that His PLAN includes an uneventful, successful surgery, easy recovery and alive and WELL child afterward.

Eventually, once we have a surgery date, we will post more about the kind of help we will need while we are gone to Cincinnati.  I know that we have found an amazing group of friends in the Lord and I am so happy to know that I can rely on the Body of Christ to help take care of our family.  We will definitely need help with the boys here, trying to find fun things to distract them on the weekends and give my parents some “down” time.  We are hoping to create a schedule for them while we are gone so they have something to look forward to!  Anyone willing to hang out with our kids or take them to do something fun, please feel free to email me!    schmidt.amber@kentuckystudio.com

Also, after surgery is planned, and the final testing is done this summer we will know more about how LONG we will stay in Cincinnati.  I know we have had such generous offers to stay in the homes of some dear friends.  We WILL be taking you up on those offers!!!!  Seriously.  Kyleigh will be in the hospital for a significant number of days but after that we will have to stay LOCAL for a while longer.  I will try not to wear out our welcome anywhere!! (hopefully!)

For Kyleigh:  of course Kyleigh is a girly girl.  Many times before we have received packages of goodies for her surgeries and we will never turn away surprise boxes for her!  Simple things like stickers, coloring books, play doh, markers, my little ponies, princesses ANYTHING! etc go a long way for a child who is bed bound!  She in love with all things princess, barbie and girly!  That pretty much sums her up!  LOL

Our family is also planning a last trip to Disney before surgery in January (we are slated for January right now.. we COULD do it as early as November but I need time to wrap up the fall wedding season!).  We are planning the week before Christmas like we did last year.  We went and REALLY enjoyed it.  If you have any tips for saving money, finding a good (cheap) flight, know of a cheap (nice) place to stay, PLEASE share!!  I need to save as much money as I can at this point but we want to give our kids that one last “hurrah” if you will before their lives change again.  (Notice the theme here is cheap? LOL)

So…………… I think that should answer a lot of questions or I hope it does.  If anyone ever has any other questions please feel free to ask.  We are not scared of answering, nor does it UPSET us.  As a matter of fact sometimes its feels good to talk about it.  So do not ever feel like you are bothering us with them.  If I don’t have time I will politely tell you so!  LOL   The comings months are not going to be easy but then again Heavenly Father never promised us easy.

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