Christmas, ER, and Christmas Again

We have celebrated Christmas, had an ER trip the day after Christmas and ringing in the New Year sitting in our living room waiting for bedtime...which will most definitely be before New Years.  I feel like I have not had time to think much less write.

Christmas was quiet.  I didn't even take many pictures!  But I did get a few to capture some of the things I like the most about Christmas!

Krisann and her Christmas make up job
definitely makes me smile!

Wilder loves Candy Canes!
This cracks me up!

First of all, I have been having some quality girl time with a friend who has been teaching me to do some wood working!  I can't wait to finish this project with her!!  Krisann will be so excited when I am done!   So leading up to Christmas, I spent a lot of time working on this project in hopes to have it done by Christmas.  But on the 23rd, I finally realized it wasn't going to happen!  So on Christmas Day, I did reveal my work to Krisann!  She will have a new bed soon!!  But this consumed a lot of my time!

Christmas Eve is also one of my favorite times.  That is my family time.  I have fond memories of growing up going to my Aunt Chloe's house every Christmas Eve!  For the past three years, it has just been us and Christmas Eve has become our family time.  We haven't always done the same thing but we've always focused on family.  I love the candlelight service we have at our Christmas Eve service.   I just love the warm glow of candles and soft music. 

  

Another favorite of mine and our kids...the Christmas gift card extravaganza.  We started last year buying gift cards ahead of time and delivering them to the workers at gas stations near our house.  This year we had a few more so we blessed some firemen as well.  In the Mapco near our home, a young black African man told us how he had to get his young children up at 4 am so they could have Christmas so he could then come to work.  He went on to say we made him glad he came to work!  The smiles, the disbelief on those gas station cashiers faces were priceless.  The impact on our hearts...priceless as well!

Which one will the cashier choose?

Leaving a Mapco after blessing some workers!

Christmas fun was soon over as home health made Zine go to the ER on the 26th.  On Christmas Eve, we woke up with a cath bag pretty red instead of the nice yellow color it usually is.  Zine and I deliberately waited until the 26th to call.  We thought we would wait until Monday and then just go to the dr.  Well, as luck has it, the doctors were all still off on Monday.  With two full days of red cath bags, a husband who had quit talking and was white as a ghost, I called home health.  And they said he really needed to go to ER.  So we spent 7 and half hours in ER the day after Christmas.  Only to confirm what we already suspected...a severe UTI.

Yes we wore our masks in the ER to try to avoid other germs!

Just hanging out in one of his least favorite places!

They gave him a high powered antibiotic while we were there in the ER and then let us come home!  

On the 29th and 30th, we made a trip to Collierville to my brother's house.  It is super nice to be able to have my family there.  There's plenty of space.  It's a short trip.  But nevertheless, it was super super difficult for Zine.  Although his wheelchair will go in the house, it is not accessible.  My brother does all he can to ensure everything is accessible...from making a ramp to giving up his bedroom.  But there's not a commode that is easily accessible, there is no accessible shower, etc.  And from the last time we were there until this time, Zine's abilities have definitely changed!  It was super duper difficult! 

These two guy are my some of my faves!

I'm not as short as they make me look!

My relationship with my brothers has grown over the past few years.  My oldest and I have grown a lot closer than we ever have been.  He has come to my rescue and been a part of my family since moving nearby.   Love him!  And my other brother has always held a special place in my heart!  God has really changed the dynamics of our relationship in the past few months and I am excited about what God is going to do in the next year.  Love both of my brothers!  But....they sure do make me look short!  And of course all three of us were super sensitive to the fact that our time with mom is short.  No one uttered the sentence but I know it was in all our minds...is this the last Christmas we have with mom?  Bless her heart!  She would be soooo sad to know what has happened to her mind!  I sure am glad there are no tears in heaven because if there were, I'm certain my mom would have them over what her mind has become!  She's so pitiful!  And I'm very challenged in knowing how to love her well!  I feel like we are blindly walking this road with our parents and hoping we somehow do it right!  We definitely cherish your prayers for wisdom!

Opening presents! 

Fidget quilt Chloe and I made!

My dad has difficult task care taking.  He does most of it well.  There are those areas that he doesn't shine in...but I hope I love Zine Brooks Smith as much as he loves my mom!

And then Chloe and I (mostly Chloe) made my mom a fidget quilt.  It was a last minute decision to do this.  There's velcro, beads to move around, a button to maneuver into a pocket, flowers to touch and pull and rub, a buckle to open and close and a tree to feel beads and braids!  I was super proud of this work.  Hopefully, it will be something that my mom can put in her lap during the cold days to come!

So this brings our Christmas to a close.  All that is left, taking the Christmas Decorations down!  And I am ready!  I have been so busy and so out of routine, I feel very scattered.  So I am looking forward to bringing some routine and organization around here in the next couple of days!

Too long since my last post...

Since my last post...

I spent a week in Arkansas with my parents.  It was a good week but a difficult week.  My mom definitely was not well.  You know music is supposed to soothe Alzheimer's patients.  So one night, I even found myself right up in that bed with my mama, rubbing her head, and singing to her!  I wonder how many times she did that for me when I was growing up?  However, when I found Dawn  dishwashing soap in my sour cream, I didn't sing too sweetly.  I actually just had to smile!  I will probably always remember singing to my mama and I will probably always remember Dawn in my sour cream!  I was blessed to be with them for a week!  I was blessed that I got to meet all the workers from Hospice!  And I got to be there to interview and hire a new CNA.  Departing was actually difficult!  It sure crushed my heart that I had to leave them there!

Here my sweet parents working a puzzle.  Tried to engage my mom a bit!

Sour cream with blue dawn dishwashing liquid.

But I had to return to my family!  I left all of a sudden and didn't prepare them for my departure.  The boys made it fine but Chloe missed her mama.  Chloe has been so sick the past few months that she just needs her mama nearby!  Please pray for her as we continue to battle headaches.  She's also had walking pneumonia and just been quite a sick girl!

I think this was her very first breathing treatment!

Here's my headache sick pale face girl!

Krisann went with me to Arkansas and did very well until the last day.  Then I think she had had all the stress she could take!  But I so enjoyed my sweet girl being with me.  We returned home just in time for her to have dress rehearsal and participate in her Christmas musical at church!  She had started on anxiety meds but it was making her VERY impulsive.  So we weaned her off of that and started on a new one.  3 and half weeks on new med and she woke up one morning this past week like a different child.  Impulsive and uncontrollable!  So...we have now taken that sweet girl off of anxiety meds.  We are going to try to treat her anxiety with other means.  I am so sad that she has such anxiety in her life.  But...living with an uncontrollable and impulsive child is not very awesome either.  So pray for us that we can learn to help her manage her anxiety well.

Love this girl!  God knew I needed her!

Lastly, Zine has had a difficult week this week.  He woke up Monday morning with his shoulder really bothering him.  We don't know what is wrong with it.  We thought maybe he slept wrong on it. But here we are at the end of the week and it's not any better.  Could be MS related.  But I think we are going to have to get it checked out just to make sure.  But poor guy...when your mobility is very limited and you lose the use of one arm...it makes it very difficult.  So yes Wednesday morning this is how I started my day...

No, he's not taking a nap in the floor!

Despite his and mine best effort, he fell with us trying to transfer from his wheelchair to his recliner chair.  But it's truly amazing how God orchestrates details.  Conner was having his weekly accountability meeting with Will.  So I called Conner to come home and help me get Zine up and who else came...Will!  I was so thankful!  I just sat down in the floor and rubbed Zine's head and talked to him while we waited for some help! Thankful he wasn't hurt and for two strong guys to pick him up!

I decided on Wednesday after we got him settled in his chair that we would put some heat on his shoulder to see if that would help!  So over the course of the day I heated the rice bag up 3 different times.  I heated the bag exactly like Chloe and I use it!  However, Wednesday night when he took his shirt off to get ready for bed, Chloe realized that he had a sore on his back.  So I looked and was immediately horrified.  It wasn't a sore...it was a burn!  My rice bag at some point had burned him!  I felt so terrible!!  And it wasn't like a red skin burn.  It was...a blister burn!

He says, "My wife abused me!"  "She burnt me with an iron!"
Good thing people know better!!

Needless to say, the last thing we need is for this burn to get infected.  He already has a UTI and a yeast infection which I found out about on this same Wednesday!!  So off I go at 11 pm to get nonstick pad to put over this burn in effort to keep it clean and dry!  I was so thankful for a place that was open 24 hours a day!!  I made it a point to be extra nice to the folks working in the store!

Never mind it's 11:20 at night!

OPEN 24 hours a day!  Thank you Jesus!

I could go into many more details  But these are glimpses into what has been going on!  My plate has been full the past two and half weeks.  I finally just put up our Christmas tree last night!  I have been pretty anxiety driven myself in a lot of ways.  I have also been super sad!  My mind has played over and over again, my last night home with my mom when she was so distraught and confused.   I am also back to sharing my bed most nights with my 7 year old.  I have often felt overwhelmed and thought what else God?  Wednesday my car was in the shop, my internet and phone were out, my husband fell, my oldest girl has a horrid headache, my 7 year old is coming off anxiety meds yet again, a couple whom we love dearly is fighting for their marriage today, and now I have burned my husband.  Really...what else shall I need to handle today Jesus?

BUT...

In the middle of all this chaos, God has given me strength.  He has given me wisdom.  He has overflowed my heart with love for those in my path.  He has given me confidence that my mom is in good hands with hospice and my two sitters.  He has protected me from many enemy attacks because He knew I was having weak moments!  He has provided human touches just at the right time.  Even when I was in Arkansas, God sent me His love through people!  He has allowed me to never feel out of control or stressed that I had too much going on and couldn't handle it.  (well, except for Wednesday night) And He has allowed me to see life through grateful eyes!  This time last year I was in a huge battle with God.  I think over the last year God has grown me in unbelievable ways!!  Despite all our chaos and heartaches, God has given us a deeper faith!  I think the chaos and heartaches is what has developed in us a deeper faith!  And I am choosing to look in the past and see that God has been faithful in every detail.  So why not trust that since He has been faithful in the past that He will be faithful in the future.  He will be faithful to help us parent our children in difficult times.  He will be faithful in decisions regarding Chloe's health.  He will be faithful in preparing us for whether we repeat the next round of chemo!  He will be faithful to care for my parents.  He will be faithful no matter what!  Can't I just rest in that...God will be faithful no matter what...I just must trust!

My Mom and Very Hard Decisions

I don't normally post about my parents.  But this post is devoted to them.  I want to use my blog today to communicate to folks about a part of my life that many don't get to hear about!

My mom was diagnosed with Alzheimer's Disease 7 years ago.  It has been quite an adventure! I asked the doctor about life expectancy when she was diagnosed.  I was told that no one could predict but the doctor predicted 7 years!  And here we have surpassed the 7 year mark by a few months!

These past few months my mom's health has declined pretty rapidly.  I made a trip to be with them back in October for a week.  My dad has had his plate full to say the least!

Over the past few months my mom has lost about 40 pounds.  Her mind has gotten worse.  She has also had some other health issues going on as well.  Some intestinal problems.  Several UTIs.

Last night about 11 my dad called me to tell me he had taken my mom to the ER and I needed to talk to the nurse! Over the course of the next two hours, I had two conversations with the nurse and I made some very difficult decisions.  Actually, I think my mom made the decisions years ago, I just chose to say it is time to follow advance directives.  So I instructed the nurse that yes she could give my mom fluids and do blood work.  But nothing else.  No GI testing.  No Cat Scans.  No MRIs.  Nothing!  We will no longer take measures to sustain my mom's life.  We are not going to figure out what is going on in her intestinal track.  My mom will go home fully hydrated!  But from this point forward, we will focus on treating symptoms and making her comfortable!  We will love and care for my mom well!

No matter how much you think you are ready for this decision, when you speak it out loud, it is a heartbreaker.  But beyond a shadow of a doubt, I know that it is the right decision!  My mom knows Jesus.  Her future is secure!  And there is a day when her mind will work, her body will work, and she will talk coherent sentences.  Yes, there is a sadness that comes with this decision for family.  And yes, there is somewhat an overwhelmed feeling as well. But there is a place of healing and wholeness for mom in the future and that's hard to be sad about!

My mom will be released most likely tomorrow from the hospital and will be going home.  She will be under the care of hospice.  We will be hiring a CNA to work alongside our sitter so that my dad has help 7 days a week.  Please understand, this does not mean I expect my mom to die in days or weeks.  There is nothing that leads me to believe that is true.  Her vital signs are good.  They have been off due to dehydration but are leveling out with fluids.  I can't predict what her future holds.  What I do know, is that hospice will provide much needed resources for our family.  They will help us love well in the last season of my mom's life.  And they will remove some aloneness for my dad as he cares for my mom!  She is alert, smiling today, and feeling much better.  She wanted our wonderful sitter to put her clothes on today!  That means she's ready to take flight!  Good thing there's an alarm on that bed of hers!

I decided I wanted to go ahead and write a short update on my mom so that others will not be left to make assumptions.   My dad and I talked about this and thought it was a wise decision!   Is my mom in the last season of her life...yes.    Is she on her death bed today...no.   We can not predict what her future holds.  We can not predict the number of her days.  She may have three weeks and she may have six months, heck, she might have a year!  We simply don't know.  We will also never know what is causing the extreme intestinal problems.  Nor will we know how those health issues will impact her life span!  But we will love well!  I told my dad today that it is somewhat overwhelming to look to the days ahead.  But instead we are going to look back and see God's faithfulness in the past and walk confidently knowing that He will be faithful in the season to come.  We believe this is the best decision for my mom!  And we believe that this is my mom's desire to not prolong life any longer!  And in this season, we believe that God's grace is sufficient!  And in this season, I am so grateful for my dad's strong faith!

As far as ministering to my parents, they need lots of prayers.  You can pray for the changes over the next few weeks as we will have a new CNA joining our care family and hospice coming on board as well!  My dad is going to have to change his way of doing things and that is going to be hard.  It's just plain different to have someone else living with you most all the time!  You can pray for my dad's sadness to be met with some wonderful compassion.   And pray that we would all walk in confidence that our decision is a good decision and not spend our time second guessing ourselves or wondering if we should do things differently.  I want us all to walk in confidence knowing we are implementing my mom's desires!  Practically speaking, my dad loves visitors!  So anytime you want to stop by you are welcome to.  My dad could use some encouragement to get out as well.  Ask him to meet you for coffee or lunch or go to a Bible study with you.  He is going to have more help in a week or so and he is going to be able to venture out a little bit more.  I'm sure he needs encouragement to do that!  He doesn't do well getting out these days!  And I forsee that being even more difficult in the coming season.  Also, feel free to surprise them with some treats on occasion!  I've never known my dad to turn away food!  :-)  My mom isn't eating much these days!  But I've never known her to turn away cookies or lemon cake.  Hmmm....I wonder where I got my love for those two items!!  Those are the things that pop right to the top of my mind when I think about others loving them well!

So my Foreman and family peeps....please know our hearts and the facts of where we are.  We don't want dad to have to face rumors!  Nor do we want to leave people wondering what is going on as that causes rumors!  So please don't let the word hospice scare you!  Hospice is a wonderful program and it is a good thing for our family!  And hospice doesn't mean my mom is going to die in the next week!  It simply means we have more support and more help in this place!  But do let the word hospice cause your heart to be quickened to pray for this season of life for my family!

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!

6 Year Journey

6 years ago, Zine Brooks Smith walked.  6 years ago, few people knew he was sick.  6 years ago he had a limp that wouldn't go away.  6 years ago, our lives were full, busy, and incredibly happy!  6 years ago we began our journey to Mayo Health Clinic in Rochester, MN to find out if indeed Zine had Progressive MS like the dr here thought he did.  If you've never read our story you can read about the beginning of our Mayo Story here.  This was the first blog in our journey.  Keep moving forward in our blog and you can read our complete Mayo story.  Six years ago, life was totally different than it is now.

6 years ago Zine walks in lego stores and is full of life.

6 years ago Zine could walk on the beach!

My personal favorite 6 years ago picture!

6 years ago we spent many nights at the Miracle League Park where Zine coached a team!

6 years ago, Zine could squat down to the ground!

Often I find myself looking back at the changes in our lives and grieving.  I think I can honestly say six years feels like an eternity ago.  Oh how I wish we could go back to these days 6 years ago where life was full!  Friends, don't let a day go past that you don't thank God for your health, for a busy home, for a happy full life, etc.  I know I took these things for granted six years ago!

Now, Zine sits on a screened porch and reads for fun.  

Our lives have been full of hospitals, chemos, and doctors.

And now family activities are few and far between.

Six years has definitely been a journey!  A difficult journey!  God has done amazing things in this journey!  He has sustained us through each and every situation.  From blue chemo and permanent cath to week long chemo and head lice, from multiple blood clots in lungs to a broken hip to acute pancreatitis...God has been our sustainer.  From depression and severe anxiety to eating struggles...God has been our comfort and strength.   From daughters who struggle emotionally to a guy who is so much like his mama it's scary...God has sustained even our children.  When we have felt like we could not take one more thing to the overwhelming gratefulness...God has been in each and every one of those places.  When we have felt deserted and unseen, God has been there!

His faithfulness is our comfort.  Whatever the next six years hold, we can hold onto with confidence that God will be in each and every moment!  But even with that knowledge and comfort, our hearts still have to process and grieve here on earth.  Our hearts are full of gratitude and confidence that God is at work but our hearts are full of grief and sadness, fear and uncertainty, and often just an overwhelmed spirit!

MS we despise you!  We despise how you have wrecked our family!  We despise how you have robbed our dad and husband of his physical abilities.  We despise how you have wreaked havoc in our emotional well beings.  But MS...there's one thing you must know...I know the end of the story!  One day you will not exist!  There will be victory over you!  But in the meantime, we will continue to grieve and we will continue to let God be our strength, our sustainer, our comfort!