catching up

summer has nearly killed me and we are only half way in.  I often forget how much my kids ride each others nerves and how much that rides my nerves!

The girls did cheer camp, are scheduled to do horse back riding camp and church camp still this summer. My dad came for a week and Grampa from way far away is coming for a month. We are desperately trying to stay busy but there is no way to run our household gone all the time! Different chores had to be allocated, rooms were moved around hoping to offer "peace" to all involved....

Then amidst it all we found the terrible twos, almost threes... Well hello unwelcome guest! Didn't' I mention all we were planning this summer? That our far-away-Grampa is coming? No, really we have plenty going on-- we don't have room for extra guests right now!

I purchased a magic bullet hoping to hide the formula under a concoction, Logan drank them for a few days and then my Luke that wont eat strawberries because they have seeds--- LOVES smoothies... lol imagine that

I tried to make puree a little thicker so I could sneak milk in a pouch, and that worked for a minute. I added honey and non dairy ice cream, I added cocoa powder which I now know is actually bitter. Then... I added cocoa syrup. if you read the bottle there are risks of possible "contact contaminants" and that could be scary. Logan however is "sensitive" to these things not actually allergic by diagnosis... so the cost of not having the milk is worse than the risk of reaction. Many of you were just frustrated that I broke some sort of rule, but really the benefits far out way the risks.

NO doctors appointments this summer simply to give his body a chance to react to the formula and get a fair chance to "gain if we are gonna". Endo results were all negative. Disappointed isn't really a fair description, but I would have loved for something to jump of a page to figure out how to help him.  No tumor, no thyroid issue,  no vitamin deficiencies, and I am assuming none of the other things either... My results call was very short and sweet. " just wanted to let you know the results of Logan's test were all negative." ME: No tumor? "no ma'am everything was just fine...." ME: okay.. thank you ...

Those calls aren't supposed to be long and long calls would mean results that I might not be really ready to hear. But either way we are still praying for clarity. My peace remains that God is not finished teacheng us through this turkey boy just yet... he was born on thanksgiving btw so he has been a turkey from the beginning...

Lexi  has become obsessed with her chore .... I decided to change the subject right there... no pretty transition... She has the laundry as her Cinderella-esk duty. Its quite comical because she pulls her hair up but is going through the trying to be trendy with my hair thing and pulls her bangs down next to her eyes and I swear they stick to her head.... I HATE it but she looks like an orphan so the drama and stomping are so very appropriate. Having a digital washer with options I didn't have as a kid learning to do laundry makes her task,, just awful. "Mom, someone changed the normal cycle to warm/cold instead of cold/cold... what am I supposed to do??????" Lexi, does it have a cold/cold button you could push?... "wellllll, yea. But what if that messes something else up? maybe you should just do it so I don't mess anything up." touché my young child, I too used that line....it aint working!

Lorelei mothers our plant life. We are growing tomatoes and beans along with "just pretty" plants too. She talks to them and waters them and sweeps the front porch. The little slimy creatures that live on the front porch fascinate her (me too) and so she talks about them and to them and we talk about how we like them because they EAT BUGS! She got twin babies for her birthday so sometimes she will push them in her stroller out there to watch her "garden" hehehehehe she is such a mommy. With her new room we have noticed a few things about her that help us to "get" her better tho. When she lines her shoes up they are perfectly symmetrical down the middle of her floor, in color order. The babies are placed in their bed at night and the blanket has to be just so. The bathroom door has to be exactly half way open at bed time.... all of these things are mentioned in possible social disorders but you know what works? Her space helps a good bit. No one else is bothered by her little quirks when it is just her space. And the plants love her need for schedule and stern direction... getting watered twice a day is great for them... plus the outside time when everyone else is in inside is good for her soul.  I am having to learn that with her there are times for me to take control and times to give options... she teaches me daily... and our heels might both dig in pretty deep, so its a process for us together.

Luke, Luke, Luke... that boy gives me a run for my money. Literally. He hammered a screw into the wall over my bed, and pours water from a fancy tea pot on his sisters beds regularly. His smooches on this momma, are the best around though. The boys have started to really bond too. Being in the middle Luke and Lorelei are very close. They are most definitely partners in crime, but Logan is figuring out how to get in on some of that... heaven help us. Trouble suits sweet lukie most days and there is a worn out spot on my carpet paired with a greasy spot on the wall... his stays in the thinking spot are not few... but a guys' gotta learn howda think, right?! The boy can get me to giggle like no one else around and he knows my soft spot is that red hair... but yuke... luke is a busy little boy that keeps me exhausted...

The girls keep my mind just as tired as the boys keep my feet! There are more tweenage tendencies than I would care to list at my house now! We are going for a tv free summer for those under ten and there is a reading list on the wall and a dollar a book pay out.... we must reign in our attitudes and lying tongues. Dial soap and vinegar are my best friends right now.

NOW HEAR THIS! I AM THE MOMMA AND I WILL FIND OUT!

Prayers for traveling mercies would be appreciated and for our daddy who will be alone only a few hours before grandpa comes for Golfing and grown up fun!

"Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; He will never leave you nor forsake you." Deuteronomy 31:6 NIV

 

Where's my copy of the map?

I have always promised to be open about exactly what God is doing in my life. Whether it be pretty or abstract, work is work.

Words like "no progress", "malnourished" and "at some point we start moving backwards". We met with the endocrinologist last week.  I heard things that I wasn't prepared to hear, but that somehow didn't shake me like I anticipated they would. Logan isn't just not gaining weight; he isn't making any physical change at all. After showing me "plots" on charts from 9 months, 12 months and 18 months ending in charts from that day... L had steadily been making growth in height. Now lets be real, when I say growth in height I mean like millimeters. Just enough that it was able to be noticed on an exact measurement chart.

They weighed him twice. They measured his height three times. Wrapped a tape measure around his head three times as well.  There it was in front of my face on four different "curve' charts. >3

I was told that for a child to grow, well anyone really, you have to have a base. Logan's age bracket should have 5 mm of fat. I am not a Dr so I am not professing to have this exactly correct, but this is what I understood. Logan measures 3.6mm. this means that he isn't even maintaining, much less growing. The Dr suggested that Logan is not absorbing anything, that it is quite possible he is burning to stay functioning but is not able to absorb calories at any point.

He mentioned elevated liver enzymes, which I gathered meant that Logan's body is "trying" to grow. Apparently your liver enzymes elevate when you sleep at night, because your best growing is done during these hours. Because Logan's test high all the time, it indicates his body is pushing non stop.

We tested so many possibilities to confirm all of this I cant even put it all into print. I wrote feverishly as the Dr talked but I still need to read about what I thought I heard and what it means to us. The Dr was very patient with us and spent a great deal of time just looking over every inch of my sweet boy. He noticed a few things that were slightly off and we are going to adjust our tests accordingly. The tests were categorized as "tests from a gastro angle" several times. This Dr doesn't believe that Endo is our answer, however  he says because doctors look from different angles that maybe he can find what Dr Rittmeyer has over looked.  This man was gentle and made sure to speak plainly to both boys in conversation, but was slightly "einstein-ish". I could tell that his thoughts were racing and his mouth couldn't quite catch up.

There are very obvious tests that will come back an easy fix- like thyroid-, but I'm not sure if he isn't absorbing how we will get him the meds to fix this but the dr made it sound fairly easy to remedy.  We also had additional abdominal ultrasounds to look for a tumor. I know. I know. How in the world can the kid have been under so may cameras and this been missed?! The answer he gave me was this: because Logan's intestines and colon/bowel are consistently swollen it would be hard to see around them. So now hoping we have figured out a better "stay clean" regimen there is a possibility we could see better. the Dr said out loud " this shouldn't be here" , "this could be swelling... but its not right either way", "are we feeding the tumor or the boy".

NOTHING shook me that day. I took notes, I splashed in a public bathroom for twenty minutes with my naked toddler trying to get  a urine sample, I had to discipline my 4 year old who lost his mind in the hospital... all before ten am.

Somehow I left with a perfect peace.

It wasn't until the night before at midnight when I began to let my family in on the purpose of the ultrasound and ask for prayer that it hit me. Satan then set the bats free. Ideas began to hit the walls of my empty mind and stir my emotions. I prayed and exchanged scripture with my supporters. Then the same scripture came from two different people. Two different states. Two different translations. One GOD SCREAMING AT ME. 

"When you call on me, when you come and pray to me, I'll listen Jeremiah 29:12 MSG." flew across cell phone towers from Austin, Texas, while I was texting Jeremiah 29:11 to my dad, he fired back Jeremiah 29:12-13. ALL with in moments, God grabbed me in the middle of what felt like the loneliest place I had ever been.

"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. Then you will call on me and come to pray to me and I will listen to you. You will seek me and find me when you seek with all your heart. " Jeremiah 29:11-13

When we started this journey I knew that God was going to heal Logan. It was that simple. I had no idea how God would work in my life . Nor did I know that Lexi's night time prayers would include a soft spoken "God please help us figure out how to make my brother well". 

I don't know what Gods plan for our boy is. I have absolutely no idea. What I know is that each time I write about how God is working through him in me that people all over the world read it. People that in some cases have admitted having no belief in what I believe in, but are so grateful I have something to cling too.

I read a book that described a child a couple lost as "having weight". The Drs prepared the family for the worst, but the moments they had with their child "weighed' in on the entire medical staff, and everyone who later read the book and follows their story now. That is truly all I can imagine.

Whatever comes of all of this, I know that it was part of a grander plan. Clearly I am not telling you we are done fighting and we are on the backwards slope. But right now we are making zero progress and are beginning to back pedal. Investing in a new formula that is twice as expensive as the one we are already on is crazy, if there are no nutrients being absorbed, but those aren't the thoughts you have as you click away and drop it into your shopping cart.

My mind wonders often. When I see him doubled over on my bed complaining, I ask God "why?". I would not be honest if I told you HE replied instantly with comforting words. What does HE do? my little boy asks me to snuggle him to he "peels" better. When I kiss his head that one year ago didn't have hair, God subtly reminds me that things are happening. 

Though they may not be "Chartable" , there are big things happening. I may never see them, but the ways that God is working through my boy are immeasurable.

Dull

Tonight I could absolutely lose my mind.

I was cooking two different skillets of grilled cheese, one with margarine, GF bread and rice cheese, and one with two wheat bread with dairy cheese sandwiches... when I walked away to referee an argument and the smoke alarm went off. Then the regular alarm was triggered... then the sirens on the two way rescue system turns on. I enter the code and.... NOTHING.. then children begin to all ask questions about why or how or are we going to catch fire....

I call the alarm company who is of course trying to talk to me over the two way installed in my house but I cant hear them over the sirens and children. The dispatcher has of course called my husband in California to ask him if we need aid... who is now blowing up my phone while I am talking to the dispatcher explaining that I have just burnt a grilled cheese... or by now all three.

Joel couldn't have gone out of town last week when both my parents spent time in town... I couldn't have been making only one pan of grilled cheese... No, those are easy options and Folks that just ain't the path we are on!

I wonder sometimes if I was as sponge like as my kids are now when I was little. Recently I know that I have learned so much I should be "wrung out" by now. Certain in my mind that He has taught me quite enough in this last year; my heart still craves more. Not the heartache but the gut wrenching lessons.

Our speaker at MOPS last week was a women that spoke of losing her husband and how it put things into perspective. She had a great job and had finally found her groove as a new mom, army wife and nurse... and then it all changed. She impressed upon us the importance of knowing your priorities and being sure of where your heart is. As I glace over to the 2 inch, three ringed binder with a vinyl label reading LOGAN in a cute font, I realize that my priorities can sometimes be jaded.

There are nights I read my bible angrily, desperate for GOD to just shout at me! Or tonight when I hand my daughter, that struggles to be responsible, a burned grilled cheese and say "it stinks to pay for other people's accidents, doesn't it?! Kind of how I felt when you spilled orange juice on a library book and I had to pay for it". My heart is raw almost to default. How have I missed this deceit, and how has it taken over my daughter? Well I haven't missed it , but now it is a foot hold that Satan has and will continue to use to get my goose.

When Joel is gone for these short trips it never fails that I refuse to watch tv and unwind, or listen to music to calm my soul... I plow... laundry, dishes, whatever is in my path. It must be done. I bark all the way through. There is a reason God didn't send us through with our commissioning.. I would have been the animal that ate my young. In my mind I'm getting the house ready for Joel to come back, but probably just hiding the fear of weakness or failure.

My last visit with Dr. Rittmeyers office I saw a nurse practitioner that I had never seen. The same one that told me over the phone that Hirshsprungs wasn't our answer... the same one that told me we were headed back to the drawing board. She isn't any more pleasant in person. We spun In circles for 45 minutes, after I waited two hours in the waiting room and Luke had peed on the floor because the restrooms were closed to "non-patients". The test results we were there to collect were not in my chart and when I asked for the new formula that want us to try that is apparently "not medically necessary", I was told "I'm not cleaning out my closet". All in all the appointment was horrible. After our discussion, which I will not share, because I will get angry all over again was over I left. In pure shell shock. Speechless.

If you read often , you know words are one of my gifts. Honestly there were no words to define the conglomeration of emotions. Angry, defeated, awestruck... those are a few... but I just sat in the car. Finally mustering up the courage to call Joel, it rang, and I unloaded. Words were flying like bullets and he asked me several times to slow down. Then he very calmly said, "Ill call you back". Click. he hung up, with me on the edge of my seat.

After calling and leaving a message, a nurse calling him back the following day and Joel' specific request to speak to the dr, the NP called him the next day. They too, had a colorful conversation and she reiterated all of the things she told me. "He's fine, just little", "You give him too much mirilax and that is why he has the runs", "I don't see why you have removed these things from his diet when he isn't allergic". The decisions we made per medical guidance from her colleagues, she was now calling nonsense. She doesn't want to see us for two months. Period.

With still no word from their office or a doctor, I called my Pediatrician in Houston and made an appointment with my Pediatrician here as well. I saw the NP that had originally noted the growth deficiency and we went back over the original check list of things we wanted to investigate.

• Allergist-Check
• Gastroenterologist-Check
• Cardiologist-
• Endocrinologist-

Two stops we haven't conquered yet. I have been so bogged down with the negative effects of my gastro journey with Logan that I haven't completely explored the other options. Both of those appointments are in the scheduling stages. We have a follow up appointment with Gastro too, when I will sit in the waiting room and demand to see a dr because I have more questions.

The NP at my ped's office called me after hours to assure me that the Gastro people have indeed run almost every test under their scope and there are no obvious issues. So we indeed are fighting an uphill battle and I must just keep my sword sharp.

My Sword. My priority? Have you ever done a sword drill? During Wednesday night services as a kid we did, every week. I knew the song. I could go right to a book before most around me. IT was part of me. IS it still that way? No, it isn't. That big Green 2 inch binder with Logan written in a cute font, seems to consume me some days.

Google-ing specialist across the country can occupy hours of my time. When my pediatrician from Houston called me back,  she said that there are "variances in gastro care" there. She said that Texas Children's has amazing specialist but they weren't known for gastro care. If that was my choice she would be my partner and help make my connections, but personally didn't feel like that was right for my family.

I burned grilled cheese because I was trying to cook two different sandwiches, in two different pans and the same time. I cant solve all the worlds issues all at once.  I can attempt to fix the deceit in my daughters heart and I can hope to make my littlest son as comfortable as I know how, but the truth is I cant fight these battles with a dull sword.

David used but a stone to conquer a giant, and one human mistake cost him Gods blessing and brought sorrow on his family. What was the difference? The giant wasn't his to fight. When David forgot only the stone was his and The giant was conquered by God, it set the stage for his kingdom to begin crumbling.

I too must remember who conquers the giants. My priorities must be sharpening my sword, so when HE shouts at me in my angry moments I can hear Him. That green binder is important for Logan's care, but it wont heal him or bring him comfort. It may be my stone but it can only be used by Him.

Take the helmet of salvation and the sword of the Spirit, which is the word of God. Ephesians 6:17

For the word of God is alive and active. Sharper than any double-edged sword, it penetrates even to dividing soul and spirit, joints and marrow; it judges the thoughts and attitudes of the heart. Hebrews 4:12

fresh canvas

my thoughts are a true mess. feelings that I might not be able to elaborate on. frustration, defeat, confusion. this is my baby and no one has any idea what is wrong. here we go.

I am not a painter. Don't understand how to mix colors or that you can use water color pencils and just brush water over them at the end. Clay is annoying to me because I cant ever get it to be what I want it to be! My friends make these precious plates to celebrate their baby's milestones and mine look awful. Going "back to the drawing board" sounds less than appealing to me.

I was on the phone with Joel's dad this morning and then BEEP BEEP... I looked down and couldn't believe my eyes! It was Dr Rittmeyers office! I clicked over, with my heart pounding almost out of my chest. "Mrs. White? Logan's Mom?" YES YES this is she... "Dr Boswell asked me to tell you that Ganglia cells were found during the biopsy" then, that heart that moments ago was beating out of my chest, sank into the depths of my stomach... So Now what? She asked me to share the regimen we are currently using and asked me how I felt it was working... we talked about previous methods we have used. ... the pediasure... we covered it all. You know, because it was someone who had never held our chart and knew nothing about us. She moved on to tell me she wanted new xrays and to see where we stood now.

My response? "Are we starting over?".... "yes, ma'am. I guess its back to the drawing board."  How after 8 months of meeting with them, is there nothing that indicates what is going on with him??

I can tell you that we are tithing now. I know that is not something I am supposed to boast about but hear me out. We were those people. the ones who expected God to give us His best while we held tightly to ours. Joel volunteered to serve in the nursery. We are more committed to giving God everything than we have ever been. I have been in the word more in the last 8 weeks than I ever have. We are hungry. Satan continues to attack our marriage because we are tired. Somehow we pull closer and push the online giving button instead of killing each other. My emotions are on the fritz. I can't sleep like a normal person because I am convinced there is someone breaking into my house, or that my kids have stopped breathing. The pressure is definitely on. It sure isn't a good time to learn to paint.

When I hung up I couldn't decide if I wanted to cry or run until I couldn't breath. Joel's parents called back and I explained to them what the NP said and we of course talked about the options etc... but my mind was spinning. Then I asked the "how am I giving, and serving and I'm still not getting what I need"? BINGO!!! Its not about me. I have to continue to dig deeper until I see nothing but Him. Deep enough to go to the "land He will show me". That picture seems bleak to me. Is scary even. But who knows... it could be a water color pencil painting that looks like a whole new me once there is a little water added.  Didn't we talk about rain recently?



no Hirshsprungs disease. But he knows what it is, and it is in the land He will show me.

"The Lord said to Abram: 'leave your country, your family, and your relatives and go to the land that I will show you. I will bless you and make your descendants into a great nation. You will become famous and be a blessing to others. I will bless anyone who blesses you, but I will put a curse on anyone who puts a curse on you. Everyone on earth will be blessed by you." Genesis 12:1-7

If you follow that story till the end... the land that God took Abram to?.... It ended up being THE promised land in Exodus.... maybe I should buy new brushes...

New xrays and Appointment for February 25th.

Puddles

When I was a teen I remember wanting to play volleyball so badly. I played on a club level, and for my private school, but I wasn't good enough to play on the school team when we moved to a big city. It was devastating to me. My youth pastor at the time told me it wasn't my decision. If I really wanted to be all that God wanted me to be, I had to be open to His plan. Wasn't it God's plan for me to play ball?? My mom and I put my ball on the alter. I told God that I wanted to play. I pleaded to grow taller, have stronger arms and to be gifted with more "natural talent". Although I gave it to God, ball and all, I didn't play ball.  That wasn't His plan.

To be honest He gave me a talent that I do not share the way that I think I was intended too. My talent stays locked in side my chest most days that I am not belting it out in the car. the timing in my head doesn't quite work right, so I just don't. No real reason. I Just don't because it doesn't work for me right now.

Moving to Savannah was one of the most heartbreaking times in my life. Prayer doesn't quite define what I did with God at that time. I yelled and wept and screamed at Him more than anything. How in the world could this be what He had for me?? Why would he throw me into this storm? I peered through a window where I saw only rain. NO LIGHT.

I used my talent at "home". I led kids worship, I was on the praise team, I participated in two different planning committees, kids camp, VBS MC....I served Him to my ultimate ability... hours a week. I poured hours into what I was sure God wanted me to be doing. When we got here Joel asked me to just sit next to him in the service, to be his wife for a little while and be part of the crowd. What?! he moved me away from everything God had for me and wanted to me to avoid getting involved here?! As morning sickness set in and I was more aware of the pregnancy symptoms, I really wasn't up to much anyway. So it all worked out. This baby that was supposed to be "prevented" by the medicine I was taking, was meant to be. In more ways than I could imagine. God had plans for me that I couldn't have even dreamt up. The eye of the storm is safe... HE was getting ready to bring the rain.

What if your blessings come through these rain drops? Excuse me?? Clearly you have no idea how broken I am . Living here has done things to my marriage that I never would have believed, I have met people that have pushed me outside of my comfort zone for the good that I would not have chosen, My baby is sick and that has forced me to be more reliant on Christ than I have ever been. I wouldn't have chosen this place, I wouldn't have chosen these circumstances, I hate rain. Umbrellas are however a cute accessory.

As i drove home from dinner tonight watching my windshield wipers "swish" off the rain from my car, my ipod became hijacked if you will. Either it was Gods way of refocusing me or HE really enjoys songs about rain. Seriously from Carrie Underwood's song about a tornado to "Cornerstone" to Bring on the rain by Jo Dee Messina, and even Beiber's "yellow raincoat"....


I have been so busy looking for the rainbow that I have completely missed how beautiful the rain is.

I was sharing a little about our journey with another soccer mom and she asked how we were doing... I said I really was okay and that... she interjected that I had learned a lot about my self. She has a baby that had heart surgery shortly after birth. As we talked about what God had done to us as individuals thru the journeys we are on with our children, it was unreal. I cant tell you that I enjoy it yet. Nor can I tell you that I have believed from the beginning it would all be okay.

The last few months I have spent more time in the word than I have in a long time. I am more thirsty than I remember being ever in my lifetime. I have also finally come to a place that I am ready to again put it all on the alter and walk away. Sleepless nights may continue to haunt me but it isn't mine anymore. I think about the three day hike Abraham took before he went to sacrifice the one son God had given him. The fear he must have had, thoughts about how he was going to tell Sarah her sweet boy was now with the Lord, How could he be the father of nations with no heir.... Abraham had a peace that God was in control. Lukes favorite part of the story is "stop! Stop! Dee angel said STOP! DARE IS A SHEEP IN DEE WOODS!" The plan was in motion even when there was not a clear understanding of what it was.

I can't do this. I can't. I have struggled with it for almost seven days. Emotions have been so raw that each day has been miserable. The beginning of the day is equivalent to a category 5 hurricane, girls fighting-me trying to blow a whistle-boys literally throwing things into the middle of it all- ending in tears and hind-end chewing all around.

I know satan is having a field day in my mind. While I feel God clinging tighter and tighter on my heart. Standing here in the rain with the one who created each drop isn't so bad. In fact who needs an umbrella? just open up and drink it in!

With rain soaked clothes and frizzy hair I ask you to pray with me over the doctors hands that will be preforming Logans surgical biopsy on Friday morning. They will sedate him and use a scope to secure a sample from exact location of the tissue that would determine if the correct cells are present. Twenty minutes is the estimated time it will take and he will be "under" approximately an hour and a half. I know God will guide the Drs hands and I have faith that whatever happens, HE is on the other side of all of this. The only thing that concerns me is the what is. Those I have to give to God daily. Carrying the "back to the drawing board" in my head is going to eat me alive. I have to quit borrowing trouble that isn't mine. I need the calm. "in every high and stormy gale, my anchor holds within the veil. He is Lord, Lord of ALL."

"He made the storm be still, and the waves of the sea were hushed" Psalms 107:29

"The Lord is good, a stronghold in the day of trouble; He knows those who take refuge in Him" Nahum 1:7

"My grace is sufficient for you, for my power is made perfect in weakness" 2 Corinthians 12:29

"We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You're near
What if trials of this life are Your mercies in disguise"{blessings--laura story}


Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain {bring the rain--mercyme}

I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining

As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

 And I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm{praise you in this storm-- casting crowns}

 

You hold the world in Your hands

A few moments ago i emerged from the hottest shower i have ever taken. I kept reaching the knob turning it hotter and hotter hoping soon i would just be numb. That for just one moment it would all stop and i could feel nothing.

Back packs are packed. Lunches prepped. Clothes folded neatly for tomorrow. One last enema delivered. Now i sit watching the clock.

Tuesday morning i received a phone call i have been praying for... "Biopsy is scheduled for Friday morning at 10"  WHA WHA WHA WHA WHA WHA (insert Charlie Brown teacher voice here) I didn't hear anything after that. Truthfully i had to call her a back a few hours later when i could refocus, she graciously repeated the details. Grace is her name ironically. She quietly reminded me there would be not anesthesia and that Joel and i would be there to help them restrain and calm him. No particular eating instructions, just "clean out" protocols.

i emailed 4 people,our parents. didn't post anything on facebook. i shared with a few people Tuesday, but now that it was happening i had to really decide how i felt about it.

I asked God for an appointment. I prayed that i would know how to comfort my tiny boy during the procedure; never had i asked God how I was going to get thru the procedure. Satan and I began to wrestle or as southerners say WRASTLE. Guilt crept in and i began to get weary from just contemplating asking God for personal peace. Admittedly i asked Joel to be there because although I will be as strong as Logan needs me to be, i will weep, and that will be a God allowed emotion. Logan needs to know that tears are also a sign of strength.

Tonight I texted a friend that although i wasn't going to post all of my emotions for all to see, i was succumbing to them. The tears were taking over. Joel is at a business dinner, my house is quiet and it was a perfect time for dear old Satan to take advantage of me.... she immediately asked me if we could talk just for a quick second. As she began to pray i felt the tears become slower and slower. They brought more relief as each one fell.

I got in the shower and began to plead with God. In Genesis Abraham pleads with God about Sodom and Gomorrah. You know when he makes the initial plea to God?? When God comes to him in the form of an unknown visitor. Abraham makes haste to welcome Him and feasts with Him. Only after he serves the guest all night does God reveal Himself. The guest then makes clear His plans to give Abraham a child and Sarah who is secretly eavesdropping, scoffs... God asks Abraham why she has laughed and Sarah denies laughing... God calls her out. RIGHT THEN AND THERE. He not only knew the desires of her heart but he spoke plainly about also hearing her words. Then the Almighty tells Abraham of his plans to destroy these cities. Abraham speaks openly about his heart and begs God to allow him to find 50 righteous men. Just 50. God agrees.

Abraham returns and requests to lower the number... Lets try 45... you know how the story goes from here? If not read Genesis 18&19, there is salt involved! Also Lot (go find out who Lot is!)has a son who "fathers" a tribe the Ruth is from, who marries Boaz who turns out are the great- grands of King DAVID! You know, King David who was in direct lineage of Christ!

That all was to say this. Tonight i am pleading with God. This week has been full of spiritual battles, hospital phone calls and medical jargon. And all of that is okay. He wants me to audibly tell Him I am scared. My relational God desires my pleadings, and enjoys the pouring of my heart at His feet. This actually pleases Him. I am supposed to "cry out" to Him. HE not only knows this is how i feel, but HEARS me and calls me out when I am showing little faith. He gave Sarah a baby in her old age though right? Yes He did, even though she laughed at Him and was in absolute disbelief that it could happen. My bible says God told Sarah "is anything to hard for the Lord?"...

God did save some people from those cities. It wasn't the original projected way, nor was it quick and painless. But there was a purpose for each that survived. Nothing that my precious boy has endured these last few months was peachy, and as a mom i would have laughed if you had told me if was purposed. Watching my child go through this has been harder on me emotionally than i can explain, but as i began to plead through a loud sob i ended here.

Sitting on my bed with my hair dripping wet and sweats that are now sopping wet because i had so much i wanted to type i didn't take the time to dry off all the way. Each step was purposed. All i wanted was to yell at Him, to weep in His arms, and He heard me. Then He poured back into me. I feel more ready for tomorrow than i could have ever prepared myself. I don't know if anyone reading this needs it, I imagine that He knows someone who needs it that will cross paths with it at some point. Tonight that person is me, I needed to type it. It needed to cross my lips out loud. He needed to call me out to be transparent that the strength i will have tomorrow is pure GOD.

My work schedule this week was none, i only work tomorrow after the procedure. The entire week i had nothing to focus on but the tiny glimpses of joy that He scatters through my day. The sweet chubby cheeks of a tiny baby, the giggles of delight from my toddler, imaginative stories from my red head, high fives from my new reader, and letters of acceptance from my gifted oldest... warfare in my head was surrounded by constant reassurance. It was already taken care of. I just had to actually tell Him i wanted Him to Hear me, Ask Him to Hold me, Beg Him to fill me back up.

All He wants is all of me. This child I lay awake praying for has an incredible future. Whatever it is has an impact i cannot fathom. But God Knows and it is carefully designed. Cities that are destroyed or procedures that are uncomfortable all have purpose in the Grand Plan.

i covet your prayers as we take our first set of biopsies tomorrow. There will be no pain relief during the procedure, so the sooner it is complete the better. Joel and i are praying for peace and asking for pain relief only the master physician can provide. Thank you in advance and i assure you i will keep you posted.

"Now that i have been so bold as to speak to the Lord, though I am nothing but dust and ashes..." Genesis 18:27

"Is anything to hard for the Lord?..." Genesis 18:14

"My soul weary with sorrow; strengthen me according to your word" Psalm 119:28

"May the words of my mouth and the meditation of my heart be pleasing in your sight, O Lord, my rock and my redeemer." Psalm 19:14

God Math

These last few months have felt like an eternity. Time has dragged in my heart like i cant explain.

If i were to look back over the fall, time appeared to be flying around me while i stood still in agony. Soccer season came and went. The girls are doing so well in athletics it is wonderful. Luke and Logan have both become pro scooter riders, and man, can Logan ride that tricycle! I changed jobs completely and took on a Holiday Sales Lead roll at Bath and Body Works and even changed malls. Joel had two major surgeries and his parents were here for two whole weeks. All the while nothing changed. Weight quit increasing in November, bowels were not regulated and bloatingcoupled long nights returned.

We see a specialist every four weeks for "maintenance". What it is that's working so well that we need to maintain it, i haven't figured out yet... but we go and get new mirilax adjustments and a fresh game plan at minimum.

At December's visit i asked why we hadn't ever followed his digestion from the top down to confirm its functioning was proper. So we did. Luke hung out with a nurse that was into "life savers" aka light sabers and Logan drank his nasty drink so we could make sure there weren't any glitches in the track. The Radiologist hung his head as he said "i know you wanted something from this, but honestly its perfect." I had told him about our journey and to be disappointed that your child is healthy on the scan is a scary place to be. I am learning to be more cautious about the amount of eggs i put in one basket... but i just want to make him better. Admittedly i am reaching at this point. I just want him to wake up and be fixed. My mind has expanded in ways i never imagined. The perfectly designed plumbing of our bodies is just beautiful!..... I just have to find what isn't quite doing its job in Logan's body.

Saying "I" isn't exactly true but soon you will hear how God is giving me guidance through people in my path because I am so lost in the "where to next" phase.

After the Jacksonville visit tunred out to not be the earth shaking appointment i thought it would be, i wept. A careful friend guided me back to words of encouragement instead of defeat. That very same friend happens to be a pediatric nurse. She texted me 3-4 weeks ago with a condition she wanted me to check out. The connections were just to close to ignore. Hirshsprungs Disease.

Another friend from the high school stage in our lives had suggested these very same two words a few months back, but with the being over whelmed with the actual symptom management i hadn't ever asked about it.

This last Saturday Joel called me at work... which he almost never does... and asked me to come home. Logan was screaming in the back ground and he said we have to give him an enema... its been two days.  My sweet, recently turned two, little guy has learned that there is something in his milk and now will just not drink it. The very same milk that is approx $12 a bottle, so we aren't fighting him and putting it in there for him to waste... we instead are trying to introduce other beverages we could hide it in. Complicating it even more, we are only supposed to give him pediasure or water. So finding something that wont break the rules terribly because sugar causes diarreah and apple juice causes gas etc etc etc is hard.

I worked a short shift Sunday and was just going to swing by our small group gathering a few minutes. The topic of our discussion wasn't planned to be about tithing but it kept turning back in that direction and the phrase "God Math" kept coming up. No matter what the paper says some how things just work out. When you give God back what is His, it comes back in ways unexplainable... in ways only explained by God planning... God Math.

Still while i just listened i heard "its mine". And out of no where our leader (relevant to what they were talking about) said, while looking me square in the face, "Gods got this". No one in that room knew that this weekend had been a rough one for little Logan. Joel and the kids had in fact stayed home from small group Sunday. We stood to pray and since i had missed prayer requests, i just shot out that Logie had an appointment the next day and i was going to ask for a new test to be done and to investigate a new scenario. Hirshrpungs Disease.

Across the room a member and pediatric nurse from our group bolted from her chair and said OH NICKIE!!! She darted to the other room and ran back with a piece of note book paper with two words across the top. HIRSHSPUNGS DISEASE. With specific tests to run and and corrective procedures and suggested care tactics all listed below. All hand written because her printer was acting up. Each letter on that page was meant for me to see.

While Joel's parents were here i had shared the condition with them and was just terribly nervous that i was going to get bogged down in the medical jargon and would get blown off because i wasn't asking the right questions. Now, in my hand were the questions to be asked. Written in understandable medical mumbo jumbo :) Hand written just for me. While we prayed i began to weep. Now it began to add up. My job at Gymboree wasn't patient with Logan being sick. So God opened a door literally with in days for the BBW position to take shape. The position also had an end date, from the beginning. A date that carried us thru Christmas and two surgeries and eight extra hands to carry us thru the season. Between September and December, my dad has been here several times, my mom has helped on weekends and Joel's parents stayed two weeks. Any other time of the year i wouldn't have been able to do it. 

November brought a few ounces of weight gain and moderate complications with our regimen but was manageable. December was a roller coaster all on its own account. Joel and i struggled to keep our heads in the game as a team and to keep everything running smoothly. Four kids is no joke and when you add two jobs and extra curriculars plus little sleep it is no picnic.

So as i sat on my bed in the darkness Sunday night i just begged God for peace of mind, a confident tongue and a CALM that could only be explained by knowing what was best for my child. I know where it all came from but i wanted the staff i would confront the next day to know that i had a power behind me that wasn't worth pushing. I needed them to hear me out.

Arrived early at the office. Since i am never ANYWHERE early, i felt like i was on the greatest track i could be on. "He's got this" i kept saying. I signed in almost shaking. Then i sat for thirty minutes. Was moved to a room and sat another thirty minutes. Meanwhile my very lethargic toddler was laying on his blanket on the floor. Very clearly displaying how he felt. It was like I was in God"s holding tank. Long enough to settle. i played games on my phone, reread my paper and then began to listen to the voices outside of my door. DR Rittmeyer and the FNP were outside discussing Logan.

I couldn't make anything specific out and this drove me crazy but they talked FOREVER!!! in reality it couldn't have been that long but i couldn't focus on their words. My mind was blank. I couldn't even create an imaginary conversation in my head. There is was a big. fat. nothing.

The FNP came in and reviewed the weekends upsets and our care measures and i said i would like to move in a different direction... she interrupted and said Dr Rittmeyer and i would like to test for HIRSHSPRUNGS DISEASE. My heart stopped. I wasn't sure if i was going to vomit or laugh and wail. But there is was, everything i wanted to say! She began to ask me questions almost as if she was reading my paper. Now my heart was racing.

None of it added up before now. On paper nothing that was happening was making any sort of sense. Every single detail had to happen to lead them to " different angle". Each obstacle that made me angry because of the discomfort Logan had to endure led me here. Each person that God placed in my path to suggest this specific testing was spaced just perfectly so that it was such a clear indicator of where the answer came from.

God Math

i am waiting for a date and time of the first biopsy and then if unsuccessful-- she warned me pretty heavily that it might be unsuccessful--we do another biopsy in the following days. Alesha the FNP isn't convinced this is the answer but opposed to the trial and error mirilax plan she has in her mind for the next year this sadly sounds better for logie. If the biopsy doesn't reveal HIRSHSPRUNGS maybe there will be something else of note from it. No matter what the results there is still a long path ahead. However it might add up to me, well or not add up. i have to believe no matter what that "he's got this"

God math doesn't equal understanding, but I believe that it equals Peace that surpasses understanding.

⁶ Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; ⁷ and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus. Philippians 4:6-7