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!

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!

Our Medical Day in Ohio

I drove ALL day Tuesday.  I slept very little last night!  There is this blue light on the ceiling that has lit up our entire room!!  I said I had my own stars in my room!  But nonetheless, today was clinic day!

How can one be in a bad mood when the inside of the hospital here looks like this??

Dr. M and his entire staff is awesome!  Too bad we won't be here next week.  Next week Dr. M will be Jack Hanna the zookeeper and all the rest of the staff are dressing up as animals!  So they will all be Jack Hanna's animals!  At least we got to hear about it!  But really, even the guy that registers us at the front desk is always super duper nice.  Very personable!  And Very Very Attentive!!    There's no waiting here.  Almost immediately, you are called to the back.

The nurse then takes weight, height, blood pressure, etc. and she is super chatty as well!  She then takes you to your room for the day.  And from that point on, there is always someone in your room!  First is always neurology!  That's Dr. M and his wonderful assistant Rachel.  Dr. M is 74 or 75 and is the world's expert in Duchenne Muscular Dystrophy.  And we love Rachel!  She is super super smart.  She is great at communicating with us each visit and she is who we email in between visits.    They were very assertive when it came to Chloe's headaches.  Someone who understands what effects a migraine can have on a kid with  muscular dystrophy.  They are starting Chloe on some different meds for headaches.  We are to check back in a month with them and update.  At that point, if it hasn't worked, then they will change a medicine.  In three months if we are still struggling, then they will make her an appt for next time we come with a team of doctors here that work with patients who struggle with difficult headaches.  So...we have a plan!  Thank goodness.  That will help anyone's outlook when you know the plan is and what to expect.  They also indeed verified that what was on her MRI is not from muscular dystrophy!  Her MRI will be repeated in December!  And then I guess we will go from there!

As soon as one person leaves, another person comes in.  And it is that way for 3 to 4  hours!!  You are never alone in your room.  They accomplish so much here.  It always amazes me.  Chloe's strength is still good.  Her hips and shoulders are weaker than everything else.  But we've always known that.  But as far as strength goes, initially she has a lot of strength.  But then as you expect her to keep repeating the same motion, the strength goes away quickly.  This is very common in manifesting carriers.  Fatigue, pain, and heart issues seem to be at the top of the list of symptoms for manifesting carriers.  Then fatigue leads to weakness!   We have learned that they see other manifesting carriers here as well!  So it's nice to know you're not the only one!!

One bummer today and that is it looks like Chloe is going to have to do ANOTHER sleep study!  Ugh!!!!  The pulmonologist believes she needs a bi pap machine instead of a C pap machine!!  So he is going to talk to our dr in Madison about this.  We may have to return here to complete a sleep study.  But hopefully, he can work details out with our drs at home.  Her sleeping issues could be a trigger for those headaches as well!  So we need to get it under control.  Right now she is arousing 10 times an hour while she sleeps with what they call respiratory effort arousals.  So I'm thinking if I woke up 10 times an hour I probably would be tired all the time too!

The cardiologist is also upping her heart medicine and will repeat her cardiac MRI next time we come!

Let's see she also saw three different therapists and had various evaluations today on top of three specialty doctors!  One of which we saw twice!  Once before some testing and once after the testing!

We did have some time this afternoon late to have some time outside in the park here at the Ronald McDonald House!

At least if you have to spend time at Nationwide Children's Hospital, there is a wonderful Ronald McDonald House to enjoyt!  We also went to the play room.  And while Krisann played, Chloe and I worked on some craft projects to leave here for the house!  Chloe can't go on mission trips, but no worries, she does mission projects every time she comes here!  This time she is leaving Create a Character bags that have some play dough along with googly eyes and pipe cleaners.  She is also leaving boxes of lego patterns cards with a few legos in each box.  So the kids can use the legos and try to recreate the patterns!  And lastly, she made the workers' desks here a sticky note holder!  I can't wait for her to give them to the office in the morning.

This girl has such a heart for others!  And I think it is absolutely wonderful that a place that has blessed us so much over the past two years is a place where she can leave a touch of her own blessings!

Pray for her as medicine changes are very difficult for her!  So to be making several medicine changes is going to be hard!

We are very, very tired.  A long day of driving yesterday and a long day of doctors appts today.  But the trip has been smooth so far!  It has not been stressful at all!  We are supposed to have storms here tonight.  But I don't know if we will even hear them in this place!  We are on the bottom floor!  So I'm thinking it could rain and we wouldn't know!  But if it thunders very loud...we might hear that??!!  

I have two girls that are ready for the lights to be turned off!  Thanks for praying for us today!