Fundraising for Accessible Vehicle

I've shared a good bit about Chloe here on our blog.  She is one special girl.  In addition to her many health issues, she loves art.  She was experimenting with water colors and got to painting some birds. She was having a lot of fun with that.  And our son Conner said, Chloe you should do a bird for every month and make calendars with them!  What a great idea Conner Smith!!  So Chloe created a calendar.

And then I said let's sell them to help raise money for an accessible vehicle.  Chloe is now driving.  We share our accessible vehicle right now.  As she gets older and is getting out more, she is going to need her own accessible vehicle.  Accessible vehicles are outrageously expensive.  So we are in the beginning stages of fundraising for an accessible vehicle for her!

So...we are selling Chloe's calendars for $20.  I have included some examples of the artwork she has in her calendar!  We are trying to get a good idea of how many to order.  So if you are interested, please let us know.  We will get payment information out very soon.

Here is the payment information.  Please send a calendar request before paying.  I believe we will be informed, but I would rather be safe than sorry.

Accessible Vehicle Calendar Payment

I Don't Want to Preheat my Oven!

I have found myself in a waiting season lately.  Let me just be real honest, I don't like waiting seasons!  I am a doer!  I like to be busy.  I rarely sit down and relax.  (When I do, I'm probably sick!)  I want to solve problems.  I want to bring joy into sadness.  I like immediate answers to prayers...yes or no...no maybe later for me!  I don't want to preheat my oven!  I don't want to cook the potatoes in the microwave because they are not very good that way, but I don't want to wait hours for them to cook in the oven either.  I think when I boil this all down, I'm not a patient waiter!  I don't often wait gracefully!  And often if I'm having to wait, I'm going to exhaust myself trying to fix the problem!  And this isn't a new thing!  I wrote a speech for the speakers tournament when I was in high school about being patient!  It wasn't my forte years ago and it's still not my gifting!  One would think with as many seasons of waiting I have found myself in, I would have adjusted and would be able to do it beautifully right now!  Unfortunately, I haven't!  I still don't like waiting seasons!!!!  I despise them to be exact!  But yet God continues to say...wait patiently....be still Karen!   And when He says those words to me, I feel like Krisann trying to keep herself awake!  She flips and she flops, she puts her feet on the wall or in the air, she sits up, she lays upside down in the bed, she wants her back rubbed again, she needs a drink of water, she forgot something she needed to do, she needs to go to the bathroom, she tosses, she turns, she says I'm not sleepy, etc.  If you're a parent, I'm pretty sure that picture just resonated with you.  I find myself saying those same words God says to me....be still Krisann.  And I know if she would be still for 5 minutes, she would be asleep!  But her anxious driven body, just can't stop wiggling and thinking! That's exactly how I feel when God says be still Karen.  I flip, I flop, I say I don't like waiting, I try to move ahead and find all possible solutions, I mess things up because I'm pitching a fit about having to be still.  And God just simply whispers again, be still Karen!  Finally my body exhausts itself and I say fine....you got what you wanted God! I'm stuck on this sofa and I can't move...now what?  I'm waiting.  And God says, be still Karen.  God doesn't just want my physical actions, He wants my heart to be willing to be still too!  He wants me looking to Him for answers, not trying to fix things I can't fix.  And personally, I often get stuck in the exhausting myself trying to fix things most often!

In April, Zine and I swore up and down that we were done with chemo.  We weren't doing another treatment.  We even told our children we weren't doing anymore.  We were done!   In October, the pressure is on for that next chemo treatment in February.  The doctor is pushing hard.  Zine is second guessing our decision.  And my anxiety increases.  I need to know...are we doing this next chemo treatment or not?  The doctor hears my concern.  He heard my heart.  He responded.  In January we will do a MRI and see if there are any active lesions.  That will give us insight.  January???  Really?? Can we just do that now?  And the dr. says January.  God says...be still Karen.   Do you know how many times my heart has feared another round of chemo?  Do you know how many nights I have begged for Zine to have wisdom?  Do you know how many conversations I've had with Zine about whether the chemo has helped any or not at all?  And God says...be still Karen.  Don't look back at how hard that week of chemo was.  Don't look back at the hospital stays and emergencies that came after.  Be still Karen.  Know that I carried you through those chemo days and nights.  I carried you through 3 children with head lice and a husband with no immune system.  I was with you in rehab from a broken hip!  And if January brings the answer of another round of chemo, I will be in that as well.  Be still Karen.  Ahhh, how refreshing it is when I can bask in the knowing God was with me and will be with me rather than being in the fretting stage and anxiety driven thoughts!  Be still Karen.

Since August, Chloe has been really sick most all the time.  I want this smiling girl back!

Instead, I have a girl that looks like this most of the time!

I have been sent to hospital with her 4 or 5 times since August.  She has been admitted once.  We have tried everything we know to do for headaches.  Essential oils, caffeine, rest, heat, ice, different medicines, food diaries, headache diaries, and my girl continues to struggle.  And I simply want a girl that feels better!  I make decisions!  I communicate with doctors.  I read articles about headaches and possible treatments. I pray much.  I feel helpless to do anything to make her better.  This season definitely stinks!  I don't want to preheat the oven!  I want it magically to turn on at 350!  I don't want to wait for doctors appointments or for medicines to work, I want relief right now.  And God says...be still Karen.  When I am completely helpless to help my child, I really have nothing other to do than lean into God, allow His grace to wash over, and wait on God to bring healing by whatever means He chooses!  And in the meantime, I get to focus my time encouraging, loving, and comforting my girl!  Not fixing the problem, not finding possible solutions, but loving, encouraging, and comforting!  

I started treating my youngest child for anxiety.  We gradually increased her anxiety meds.  Unfortunately, as we slowly increased her medicine, her behavior became very very impulsive.  I thought she was going through some incredibly difficult stage.  I did not equate the behavior with the medicine.  And as I was waiting for the stage to pass, I reached the end of my rope with her.  I had no clue how to raise my 7 year old child.  I'm sure people think sometimes, that girl needs some discipline.  But really people, I have disciplined this child.  In my desperation one day, this happened to her room.

And my study looked like this!

I have discovered I can't do a thing with an extremely impulsive child other than pray!  She had a check up with psychiatrist, and I shared some of the things I had been dealing with and the psychiatrist immediately said, everything you just said to me equals extreme impulsiveness.  I think the anxiety medicine has had the opposite effects.  We need to wean her off of it and try another one.  And as we have been weaning her off, the extreme impulsiveness has gotten much much better.  But now, it is time to start a new medicine and I must remain in this waiting period.  I just want my girl back that sleeps in her bed, that is fun loving and not cry all the time, that doesn't stress out over every little thing, that isn't afraid when questioned, that says those statements that just make you laugh out loud, and just has a sweet sweet spirit about her all the time!  But in this season of waiting, I get to practice loving unconditionally (even when she is unloveable), giving grace and depending on grace, and watching what God is going to do in her life!

And y'all, this is not all the waiting seasons.  My dad must have knee surgery and I have encountered some delays along the way that I am just having to trust God with.  I think my mom has another UTI. Tried to get dr. to give home health orders last week to check and long story short those orders didn't get signed and it was a holiday week!  So tomorrow I have to work on that again.  I am in a waiting season as I watch God work in a relationship that Zine and I have been providing some counseling to and trusting that He is going to bring unity and healing in that relationship.  And there is another tender waiting place that I'm not sharing in writing but am definitely having to trust God in that place in this season!  

So plain and simple, for someone who gets frustrated when she has to wait on her oven to preheat, this has proven to be challenging time of waiting!  But the one word that keeps coming to my mind repeatedly in this season is hope!  I have hope!  These seasons will change, these places of waiting will come to an end and God will do a new thing in those places.  These healings of anxiety, headaches, MS, etc. most definitely will happen at some point!!  And how appropriate that as this is the first Sunday of advent, that is the word that has been stuck in my mind!  I'm pretty certain that God has placed that word in my heart on purpose!  I have hope!  Even amidst the waiting, I have hope!  The oven will get hot!  My potatoes will get done!  And God is at work!  And in the waiting, I can have a renewed strength.  I don't have to be weary!  I have hope!

A Couple of Days at Women's and Children's Hospital

I just been thinking that life was settling down into some semblance of normal.  However, two hospital visits in one week is not settling down!  Y'all, I really don't make this stuff up! This is really my life!  Last week I went with Zine when we encountered his cath problems. That story you can find here.  This time I went with Chloe who is struggling with a headache.

Chloe has been battling headaches/migraines/whatever they are called since August.  Since August there have been very few days that the girl has felt well.  She pushes through many days!  And this past weekend was no exception.  She was struggling with a migraine/headache/whatever they are called!  She had been taking prescribed medicine for migraines to ease the pain and help her push through!  She has also let me try some of my essential oils on her at times and when Chloe will let me put some of my essential oils on her you KNOW she is hurting!!  She despises my oils!

However, on Monday her migraine knocked her totally out.  She was SO sick!  The pain was almost unbearable.  I called the neurologist office and talked to them.  Goal was to get through the night at home.  We did.  Tuesday morning she was absolutely no better.  Neurologist sent us about 11 am to the hospital.  Our fourth trip to ER with her since August.  They know us now.  I'm still not sure if that is good or bad!!  But at least it does make us feel like we are getting good care!  You can see even in the dark, how pale and sick my girl was!

Sick sick girl in ER

This trip to the ER was different than ever before.  Every other trip, they have been able to regain control of Chloe's pain.  This time they were not successful.  They had done what they could do and she was still very sick.  Her head was only a little bit relieved and in addition we were having much problems with her blood pressure being low.  So they felt it was in her best interest to admit her.  This caught me way by surprise! 

Admitted and Settled in room

Don't get me wrong, I wanted them to make her better. There is nothing worse than watching your child be so sick and not being able to make it even a bit better.  However, for me to be away from home is hard!  It's hard for Zine.  It's incredibly hard for Krisann.  And Conner gets to pick up care taking when needed.  So admitting her definitely increased my stress in some ways.  But in other ways I was super relieved that I didn't have to take this incredibly sick child home!

The end result...They gave IV meds around the clock that really just knocked her out.  Eventually, they were able to get her pain controlled with a different oral medication.  And we came home late Wednesday night.  She still has a headache and she still is taking medication for it but it is being controlled.

Finally on our way home!

The neurologist wants to send her to a specialty clinic.  There are none here.  We would have to go to Atlanta, Memphis, or Ohio.  We thought we would just go to Ohio since we are already set up there.  But after talking to them, it is going to require numerous appointments so we are about to think it is better to get an appointment in Memphis or Atlanta.  Which are both closer to us than Ohio!  I'm sure the neurologist office and I will discuss that very issue today.

This morning as I am having my quiet time and finishing up this blog post, my heart has just been crying out to the Lord for healing for Chloe and Zine.  However, at the same time, I will walk in this place with a confidence that God works all things together for our good.  I may not see how God is working things for our good.  At times, things may really stink. and I may not know what's next.  But I will continue to trust in that His plans are for us and not against us.  And when I am overwhelmed, I will seek refuge under His wing!  You see, these are promises I have found in His word that I am claiming for myself!

And as I write this, I think about you as readers of my crazy life and I wonder...what overwhelming crazy things do you have going on in your life and what promises do you need to claim right now for yourself?  Some people will say things to us like well our problem is nothing compared to yours.  And Zine and I always respond, your biggest heartache is as great and as important as our biggest heartache to Jesus. Jesus doesn't triage problems!  So please don't read my post and then think well my problem is nothing.  Now I do thank that sometimes gratefulness can be a key part to bringing healing to our hearts.  However, your greatest heartache and struggle, needs God's promises attached to it!   God wants us to grow in our faith, trust Him with our lives, and walk in His promises over our struggles.  So today will you join me in claiming promises over struggles in your life today?  Go ahead and comment what promises you are claiming for yourself today!  I would love to hear!

Mystery or Blessing

We followed our ER Visit up the next day at the urologist office!   We weren't supposed to be there until 4:00.  That way we would be seen last and they could spend as much time as needed with us.  They were fully expecting to encounter problems.  They had seen the ER report and knew what we had encountered.

Needless to say, Zine was exceptionally depressed and feeling pretty defeated all day.  When I would try to ask him about it, he would just shake his head and big tears would well up in his eyes.  It was a long day to say the least.

When we got there, we got the "best nurse" for putting in cath tubes.  We discussed briefly what had happened and she just said I'm going to try one time!  And y'all, she got everything ready to go, she raised her hands in the air as if in surrender and prayed out loud that God would allow that tube to go in.  No one expected the tube to go in.  She didn't.  We didn't.  The dr. didn't.  But that was first thing to do was for her to try.  And I want you to know, that tube went in just exactly like it was supposed to do.  EVERYONE was in shock.  Our mouths fell open!

So...it is a mystery as to what went on with our complications on Wednesday.  We still don't know exactly what the problem was.  And inquiring minds would like to know the answers to questions.  But they just said, thank you Jesus.    And to count it as a blessing!  Now, we will be going into the office for them to change the cath tubes for awhile instead of home health doing it in case we have problems again, we won't have to spend a day in the ER.  So we may eventually know the answer to our questions.  Or we might just always be able to say God gave us a miracle that day!

So whether it is a mystery still to be solved or just simply a blessing God bestowed on us...who knows!!  But we gladly took the blessing to say the least!

Yep! Unplanned Hospital Visit

Well, yes, we ended up here today!  This was not in my plan.  But then again when are trips to the hospital in anyone's plans??!!  I had to laugh once today.  They put all these bracelets on Zine and I'm like, "Zine, they think we need a bracelet to remind us that you're a fall risk.  I've already figured that out!"  But a fall is not what sent us to the ER today!

Home health nurse came today.   Typically takes about 30 minutes or so for her to change Zine's cath and flush his port.  Except today...the new cath would not go in.  She worked and worked and worked.  She tried three different tubes and there seemed to be an obstruction.  After a phone call to the urologist, it was a trip to the ER....again!

It was time for Krisann to go to gymnastics.  So Chloe, even though she feels horrible, came to my rescue and took Krisann to gymnastics and I took Zine to ER.  This is part of the reason that my 7 year old has anxiety!  You just never know what is going to go on here!

Zine gets very frustrated when things aren't going the way they are supposed to go.  He's like don't talk to me, don't ask me questions, just decide what's next!!!  So ER bound we are.  Because Zine has a permanent cath he can't go very long without a cath or else his hole will close and they will not be able to get another tube in without surgery!  So time is of the essence.  Which means, when you walk into an ER and the waiting room is full, you get to go straight to a room.  Once in triage, I asked how long we would wait and they said, you won't!  And we didn't!  From the moment we got in the room someone was with us non stop.  We didn't get our doctor that we like so much but the doctor we had was super duper good!  She was in our room no less than an hour maybe more like an hour and half. They worked and worked and worked and worked trying to get his cath in.

I will spare the details of how they finally managed to get a small cath tube in.  Not the size we need. But they were finally able to get a small tube in that will do the job for a temporary time.  Crisis over for today.

The question is what caused the problem?  We do know he has a UTI and could that cause the issue today?  The other possibility is that he has something they called a stricture.  That is where scar tissue builds up and narrows the opening so the tube will not fit in.  So, we must follow up with urologist.  If it is a stricture, then a surgery could be in his future depending on location and size.  So here we go again...learning new medical words!

But I tell you, the doctors and nurses all love Zine.  The nurse today said I'm sad you are leaving me! Of course she had been with us non stop for several many hours at this point.  But really, everywhere we go, the medical staff all talk about how Zine just encourages them and builds them up!  He is so much nicer than I would be in situations like today.  We started praying years ago, when Chloe was a baby, that in our mission field known as hospitals and doctors offices that we would always be someone that people would look at and know there was something different about us. And we want to encourage and love those around us.  We are always honored and blessed when we feel like we have had an opportunity to encourage, guide or simply bestow love on those around us.  We have been blessed with many opportunities to do just that!  Grateful that today was no different.  Even when Zine and I both were very frustrated, I was so glad to realize we still loved others well today.

I am learning to roll with the flow better on days like today!  And I'm super grateful for big kids to help with Krisann on days like today!

A few other updates:
--We have some close friends that are going through a difficult season right now and our hearts are burdened for them!
--My dad has to have knee surgery.  Please pray for wisdom on when and where to do that.  And how best to care for my mom during that time.
--Chloe has not felt well lately.  I really want that child to feel good!
--Chloe's sleep study monitoring that Ohio needs we can't get it done here.  So we made decision yesterday that we will just do that in Ohio!  Frustrating that is in her future again!
--Krisann's anxiety has been pretty high.  Monday was a TERRIBLE day at school for her.  Last night she had a good bit of anxiety.  And of course, when I came out to let her know her dad had to go to hospital again that brought on more fear!  I hugged her, assured her that he was going to be okay, but really very few words reach that place in her heart!
--Conner has had his own stressors today.  He's typically my roll with the flow guy!  But he was even bothered today and I was able to talk some to him but not like I would have liked to!
--I have felt stress for sure!  A bit ago, it felt like my heart was going to beat out of my chest and ears.  Since they changed my heart meds a few months ago my heart has been doing well.  I didn't attribute it to stress until a friend said take one of your rescue anxiety meds.  Sounds like it might be anxiety!  So much to my dismay, I succumb to taking a half of one and it has helped.  Dog gone it!  I don't like it when my body doesn't do what I want it to do!

In closing, although days like today are hard, I am grateful for a wonderful hospital!  I am grateful that every one of our experiences there have been good.  I am grateful that this didn't land us in the hospital for days.  However, it is exhausting.  And when you don't have clear cut answers as to why...it is hard to control the mind!  I like to have answers immediately.  Waiting is not my forte!  We will be following up with urologist at some point.  So pray for quick follow ups and clear answers!  Pray for our spirits to not be discouraged.  I think Zine and I both feel discouragement today.  Not defeat, not desperation, just discouragement.  We still pray for complete healing for Zine!  We would love to give God glory for that!  It seems that this cup will not be removed from us at this time, but even in this place, we want to do it well!

Helpless and Humbled, Hopeless not Hopeless

Last week was a complete dud!  It was a disaster!  When mom loses it emotionally, things get bad!  And this mom lost it last week!  I cried so much that it took two days for me to feel like keeping my eyes open!!  It was a bad breakdown!

I got to thinking about the straw that broke the camel's back so to speak.  I tried to get to the bottom of what caused me to break and I think it was the feeling of helplessness.  My seven year old is sending me to the feeling of helpless...completely helpless.  Let's just say we have regressed in her emotional health.  She is back to sleeping with me most nights.  She also has some behaviors that are making us crazy.  Sometimes she is as sweet as sweet can be.  But other times, oh my word!!!  At counseling this past week, we took the situation that caused me to break and broke it down play by play with the counselor.  Then when the counselor begin to ask her questions and get to the bottom of what caused Krisann to act the way she did...it boiled down to the same thing that it boils down to often.  "I'm afraid my daddy is going to die."  I don't think I can even begin to understand the depth of the impact of this statement in her life.  The counselor then proceeded to tell her over and over again she was right.  Her daddy was going to die.  As I sat and watched and listened to this conversation the tears rolled again!  Oh how my heart hurt.  There is nothing I can do about that fear of hers!  And her fear often comes out as anger.  And guess who gets the brunt of her anger....ME!!!  So oftentimes, I feel like I am in a pretty helpless situation.

I so want to provide Krisann with the same environment that my older two had growing up!  For all practical purposes they were raised in a near perfect environment.  Krisann has been raised from one tragedy to another.  Surgeries, chemo, pulmonary embolisms, week long chemo, broken hip, acute pancreatitis, etc.  She has lived from this person keeping her, to that person keeping her, to this person staying at our home to being raised by her siblings, etc.  Not to mention that the emotional health at our home is not always the greatest.  So her raising has been NOTHING like my other two!  And to expect her to live her life without fear, anxiety, and grief would be crazy!  But I find myself desiring that for her daily!  And helpless to make it happen!

Humbled...On top of the emotional stuff that's been going on...I have had two men here working on replacing some fence posts, power washing and getting ready to re-stain my privacy fence.  It is KILLING me how many hours they have spent here!  Some days I can't hardly stand it!  I know they are doing it because they desire to but it is definitely teaching me humility!  I haven't even had the energy to make them cookies or anything!!!  I feel very sad that they are spending so much time here.  But on the other hand, I am truly grateful because that job was just beyond me!  Learning humility is not fun though!!  I just gotta say!

Because of my out of sync week, everything got out of order and out of routine to say the least.  So my laundry got piled up.  Today, I went to tackle the laundry!  And I just decided it was hopeless!!

These pictures do not even do the laundry justice!  It was crazy how much laundry I had!  No wonder I had no capris to wear this morning!  There are probably four more loads of clothes in my bathroom!  So...it was time to buckle down and laundry it today!  After three loads, I'm thinking I'm going to be gone this afternoon, there is no way that I will ever get this laundry all done!  It is hopeless!!  For that matter, I may never get my laundry caught up!!!  Those were the thoughts going on in my head.  But I was committed to spending every waking moment that I was at home on my clothes today!  And y'all, in the middle of my third load of laundry a sweet friend texted and said, I wondered if you had any laundry that needed to be done.  I'd love to come pick some up for you today!  Really??  How in the world did she know I was in the middle of laundry and feeling pretty hopeless?!  I told her I was working on it today.   Then I was telling Zine that she had offered, and Zine said,  "Heck yes we would like her help!"  So needless to say she came and picked up a lot of laundry!!  I still hear my washing machine going tonight but one more load and it will be done!

Today I have just found myself in a grieving cycle today.  I want life to be the way it was!  I want my home to be a happy, joyful, content home!  I want my little one to be raised in the same environment my others were raised.  I want my husband to get up and go to work.  I want to be the best homeschool mama again!  I want to know at lunch what I'm cooking for dinner!  I want to clean my house.  I want to do my laundry.  I want my husband to fix my fence.  I want us to go and do as a family again like we used to!  I want to be a friend other than a texting friend.  I want to teach.  I want to organize.  I want my family to be busy on Halloween like we used to be.  And....I can't have life that way!

Despite my little grieving cycle I have found myself in today, I am slayed by how God orchestrates all the details in our lives together!  From counselors, to beloved men from church, to friends who love to do laundry, to a friend who knows what it is like to raise children of trauma, to a friend who unexpectedly drops Dunkin Donuts off at my house, to a friend who texts with me regularly and keeps me sane...God is always orchestrating details of our lives together! And I am super duper grateful for how He continues to orchestrate details together in our lives and how he weaves other people's lives into ours!