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!

Morning Conversation

I have the blessing to have one on one time with Zine every morning.   He would probably not call it good one on one time.  I help him get his feet dried off, I lotion his skin because I think that's important (and he disagrees....except the fact his wife is rubbing lotion on him lol!), I help him keep his cath clean, and I help him get dressed!  He would prefer no help at all which is totally understandable but he also says it makes things SOOOO much easier and safer when I help him.

But what this time does...it gives us quiet conversation time.  And there is this one conversation we have on a regular basis.  And for some reason, I feel prompted to share it today.  Maybe someone who reads our blog needs to hear this.  This is quite a personal look into our lives!

We have self worth issues at my house.  I see it in almost all my children, myself, and my sweet hubby.  We have identified it as a lie we believe about ourselves that we are not worthy of people's love.  And I have been righting a lot of lies in my life lately!

This morning I gave Zine the example...for a long time I questioned God's goodness.  It did not feel like God was good to us!  However, God's word clearly states that God is good.  He has plans to prosper us and not to harm us.  So what I did to correct believing a lie about God...every time I felt like God wasn't good I would audibly state out loud often and in my head, "God I know your word says you are good.  I know You have a plan to prosper and not to harm me.  God I don't feel that way right now.  It doesn't feel that you are good to me, but instead of believing that you are not good, I am stating this truth out loud and I'm asking that you help me cling to that truth.  And Father as I state truth out loud over and over, would you help my heart believe it?"

Sooo....once again this morning Zine and I are having this same discussion.  And please believe me when I say a discussion is not an argument.  This was not an argument!  This conversation comes up in a different circumstance, but the root cause is the same.  Low self worth.  I'm not worthy.  And that has gotten my sweet hubby hung up!  Don't get me wrong, I understand how he gets to this place.  I understand this place because I too live there on periodic basis.  However, it is owning his emotional thoughts right now.  And just to speak truthfully, it is not true!  He is worthy of being loved.  He is worthy of care.  And it brings his family great pleasure to love and care for him.   And I'm pretty certain his friends receive pleasure from opportunities to love him as well.  So in this conversation Zine asks, okay what do I do practically??  He went on to explain there was nothing he could do physically to fix the situation.  So what does He do to live in this place where His physical abilities are limited but not live in unworthiness.

So I took the same principle I applied in my life to come to understand and believe that God is good and turned it to help him hopefully.  When a desire arises, instead of commenting that the pepper is not on the table.  He could simply ask would someone get the pepper.  Because really he is worthy of pepper on his food!  When he desires to go for coffee, he could ask someone to take him to coffee because dog gone he is worthy enough to go for coffee.  When he wants to do something with a friend, he can ask a friend to come pick him up and they go do something because he is worthy of a friend taking him somewhere!  Every part of his being is going to scream this is selfish!  But...here's where we are wrong.  Asking is not selfish!  I know it feels selfish!  I feel that way!!  But the reality is selfishness comes when someone says no and we get angry or our feelings hurt.  That's selfish!  But asking is not selfish!  So Zine (and I for that matter) needs to put the request out there, and then he gets to choose whether he is selfish or not by the person's response.  And when he puts the request out there he needs to say, God this feels super selfish but I am a child of yours, I have friends and family that love me, and desire to love me well.  I know I am worthy of their love and of Your love.  As I state this truth out loud that I am worthy of love, would you help my heart begin to believe this truth?

And no, this truth does not take root overnight!  It is a choice maybe multiple times a day to speak this truth out loud!  And I'm confident that over time of speaking a truth out loud, that it will begin to take root in the heart that's willing to be obedient to continually take thoughts captive!

The enemy lives at my house!  He is active and alive here.  Not only in the physical aspects of my family but the emotional aspects as well.  And I may not can win the physical battles in the life of my family, but I can sure fight those emotional battles.  I do not want Satan to get victory in our spiritual and emotional well being.  So I'm arming myself for battle.  And I'm trying to help my family do the same.  And hopefully, this post will help you do the same!  However, there's one important fact that Zine has to remember and that anyone has to remember...no one else can make the choice to speak truth to yourself.  God can show you truth, but it is your choice to repeat the truth over and over!    How ironic that I had this almost exact conversation with Chloe last week!

I'm praying today that God will speak truth, His truth, into the lives of my individual family members and myself.  I'm asking that we will have the desire to take that truth and start speaking it into our lives.  And I'm praying for release from the lies that have us entangled right now.  I'm praying that as each one of us allows God's truth to touch our heart, that we will claim it, we will hold onto it, and we will speak His truth out loud, and eventually I have faith that we will feel it and believe it in the depths of our hearts!  And if you want me to add you to my prayer list, I will be glad to say this same prayer for you!  And I ask that you join me in praying that we can have victory in the emotional battles in our home!

 I want God's truth to penetrate these kids hearts.  I want God's truth to penetrate Zine's heart.  I want God's truth to penetrate my heart.  And I want His truth to radically change us.  I want His truth to sink into the creaks and crevices of our hearts.  And I want us to live in that place of being saturated with His love and His truth!

PS:  I have not read and reread this post for grammar.  So forgive any mistakes.  Most posts are read and reread and reread and filtered and reworded numerous times.  This one though...it's different...it was burning my heart to get it out!  And I don't know if it is for someone else that I needed to share or if it was for me or if it was a proclamation for the enemy to know I am on a serious mission right now...but whatever the reason, forgive all grammar mistakes!  :-)

Oops a fall!!

Zine celebrated his 42nd bday this week!  We didn't do much to celebrate.  I had always said I was going to plan a party for his 42nd bday.  But planning parties...not much my specialty right now.  But tonight, he and I decided we were going to Starbucks.  He had a bday drink coupon that expired today.  I am cleaning up kitchen.  He decides he is going to try to put on his shoes??!!  To help me out at that!!  Ummm....bad idea!  Oooops!!  Conner gone.  Zine fell.  Not a good combination.  No one but me to get Zine up out of the floor.   So I thought I might just give you a glimpse into what that looks like...

1.  I take his socks off.  No one can get up with slick socks!

2.  I try to move his leg and he very grumpily says let go of my leg before you break it.  So when Zine is grumpy and not working with me I have learned to just disappear.  I used to get mad but now I just stop.

3.  Zine wiggles around in the floor.

4.  Zine asks for help.  I ask if he's going to yell at me if I move his leg.  He says no.

5.  This time I try to put Zine's knees up under him and twist him around to his chair.  Didn't work.

6.  I say can I call our neighbor to come help before we both exhaust ourselves.  The answer...not yet.

7.  I now pull Zine's pants legs up so his skin on his knees will be on the floor.  Less slipping.

8.  He reminds me about the gait belt.  Oh happy day, why had I not remembered to get the gait belt.

9.  Gait belt on, pants legs pulled up, socks off,  knees underneath him, his feet between mine so they won't go anywhere, 1, 2, 3, let's go.

Success or not?  This was the last try before I said we're done.  And somehow someway, I was able along with a little help from him to pull him up and sort of get him in his recliner.   But he was all crooked.  

10.  Recline chair and get straight.

11.  Untangle the cath bag that has managed to get all wrapped around him.

12.  Crisis solved.  This time.  My upper body is exhausted.  My right arm is still shaky hours later!  Sure am glad I have been working those scrawny little arms out some!  Think they need some more weight lifting!

But a few awesome things happened...

I didn't get mad at him for being rude at first.

I worked towards a solution alongside him.

I didn't panic nor feel overwhelmed.

I put his shoes on as I almost always do.

And...I still took him to Starbucks for his bday drink.  

Ha...he thought after the fall, he had missed his trip to Starbucks! However, my friend's husband fell today and he is in hospital with bleeding in his brain. So I just went back and finished cleaning the kitchen, giving thanks that Zine wasn't hurt, and then enjoyed about an hour with my man at Starbucks.  Wonderful weather to sit outside.  All was going great until my wonderful hubby decides to do this...

Really, what makes him think he can lean back, recline, and put his feet up in the air at Starbucks???  Really??!!   LOL!!  I told him he was embarrassing me acting like that!  He said it's my birthday I can!  

Happy Birthday to this wonderful guy!  And as I shared with him tonight, there's only one Zine.  No one will ever replace him.  So he just might as well want to stay here with us for as long as possible because him not being here would leave holes that would never be filled.  So when he thinks he has no purpose, to just look around his family and understand that he will NEVER be replaced!   He talks to much to be replaced!  Ha! 

In all seriousness, pray for Zine.  To go from working full time to being at home on disability, is really hard.  He is really struggling through some issues right now and rightfully so!  So just join me in praying that God would make it very clear His purpose for  Zine's life and our lives!  Our hearts desire has always been to serve God where He plants us.  Now it feels like we are planted at home.  Which can tend to leave us feeling a bit self focused but yet not much time nor energy to serve elsewhere.  God has a plan.  God has a purpose for each circumstance.  I do not doubt that.  And I know that God will use each and every circumstance.  Even an ooops circumstance!  

So Many Things At One Time

There have been so many things going on at one time I haven't even been able to keep up with it on my blog.  So get ready...this is a lot of info in one post!

A week ago...

 This girl is a trooper.  She had to have sleep study done.  She already sleeps with a machine!  However, she has been extra tired lately.  And then she started having headaches extra bad.  And if her sleep is  messed up then that could be a trigger for headaches.  So, we repeated that darn sleep study.  But because Chloe is soooooo special...she doesn't just get to sleep there...she gets to spend the entire next day there as well!

At least in the picture below you can see where she got to lose some of her extra attachments during the daytime.  They woke her up at 6 am!  From that point on every two hours, they would turn her lights off, and have her try to go to sleep.  However, they would only let her sleep for 30 minutes and they would wake her up.  So technically every hour and half she was supposed to nap!  And this girl...had no problems with napping!!  She couldn't wait for 8am, and then she couldn't wait for 10 am.  At 12 pm nap time, she did not even respond to their calls.  They literally came in and woke her.

At 2 pm, she was just tired and ready to get out of there.  Which we were grateful after the 2 pm nap, they let us go.  She didn't have to stay for the 4 pm nap!  Hallelujah!  We should hear from them this week regarding her testing!

Wednesday I left at 2:30 pm for a 9 hour trip to Arkansas!  My parents were in need of a visit.  My mom is declining rapidly with Alzheimer's right now.  So I spent a very stressful three days with my parents.  I crammed so much in my visit that I felt overwhelmed when I left.  I took my mom to the doctor.  I took my dad to visit a memory care center so that he could see and get a feel for what it was like.  I cleaned out my mom's bathroom and the medicine cabinet.  One would think that would be an easy job....nope....it most definitely was not!

My parents favorite sitting spot is on a bench swing out on the porch of one of their two storage buildings.  Yep, they have so much stuff they have to have 2 storage buildings.  A His and Her storage building!  And they are leaving it all for me to clean out one day!  :-)  I didn't say that just to be funny either!  It is a true statement!





On Friday mornings, my dad takes my mom every week to get her hair done.  So I know once a week she gets a clean head.  And my dad told her 100 times how pretty she looked with her hair fixed on Friday.  He is still smitten with her!  But trust me when I say Friday is the only day she looks this pretty!

However, with as normal and as pretty as she looks here, this lady is just the shell of my mom.  There is nothing about her that resembles the mom I knew.  There are crazy things that happen all the time.  For example, 

covering some peanuts with a wet napkin.  Wonder if she thought the wet napkin might make them sprout and grow leaves.  Not sure.  But this is simply one example of the crazy things that happen ALL the time there.

She didn't know who I was not one time the whole time I was there.  One time she said she had only boys.  Very few sentences made sense.  Most of them were words put together in no certain order.  She doesn't know what her last name is or how to write it.  She is still able to remember her first name.  She could never call my dad my name or know what relation he was to her.  She was centered on seeing her mom.  She missed her mama tremendously twice while I was with her.  Another time, she got real upset because she thought she was moving and then later she thought my dad was moving and leaving her with me!  Zine feels the same panic sometimes...I really have to stay with this woman!!  LOL!   The trip was the absolute worst!  However, I wouldn't have wanted anyone else to be there doing what I was doing!  I used to be able to guess what she was talking about but no longer can I even do that.  I did find out she had a UTI at the doctor, so I am praying that she will get better once that is cleared up...but really...better is not anywhere close to normal!  There are so many things happening.  On the Alzheimer's Function Test she is entering the last level. So she is in the late stages of this horrible disease.  This lady was my best friend most of my life.  I love her dearly and it breaks my heart to see her mind be totally gone!  We are trying to decide what our next step is.  My dad has been the absolute best caretaker ever.  But goodness, it is more than one person can handle!  This guy is a saint...sometimes!!

I needed to run off some stress Saturday morning so I took them with me to sit on the park bench and watch Krisann play while I ran.  And what do I see at the end of my run, my dad has been walking around picking up the trash at the park!!

Unfortunately, with a heart as big as his, he believes everything people say to him.  He will give the shirt off of his back to anyone!  With crazy people in this world, that is not always a good thing.  But this man, carries a ton of stress on his shoulders.  He is weary and rightfully so!  And when my dad cries, this girl is always going to cry alongside her dad!  And some of that happened this weekend!  But I will count that as a healthy time for him to be able to do that and for me to be able to do that too!

Krisann went with me and the big kids stayed here with Zine.  We divided and conquered!  The big kids and Zine made it very well!  The kids are so good to help Zine.  And I've never met a teenager that didn't like to just hang out with Zine.   Krisann could not have been better.  She was a near perfect angel the whole trip!  She didn't like it when her memaw got really upset and crying!  She had sympathy tears!  And she wanted to bring her memaw's clothes home with her.  I'm sure that was some emotional response to our time there that she just couldn't communicate!  She slept with me every night and on the trip there and back, she never needed to stop, she didn't ask a gazillion times how much further.  She just entertained herself and we listened to her Christmas musical CD at least 100 times.  That's the only  music we listened to there and back so I'm pretty sure if a soloist is sick I could fill in!!  Oh, how I love that girl.  And although she has her issues, I continue to sit and watch and wonder what God is going to do with this child!  Oh how I love her!

Despite my worn out body, I got up and took this girl to school this morning because I am in a mode of trying to be very consistent with her!  Consistency is good for this one...especially when it comes to being away from home!  I skipped lunch at school today, and came home and took Zine to Cullman to see his neurologist.  As usual, that took us several hours.  My body rebelled to driving again today.  It did NOT want to sit in that car seat and drive.  Thankfully, our appt was pretty uneventful.  We don't have too many of those!  I did talk to Zine's neurologist about Chloe's MRI and he was not too happy at all about that.  As a matter of fact, he wanted us to sign release so that he could get a copy of her MRI.   My concerns are definitely valid concerns in his mind! I didn't even have to verbally speak my concerns, he was shaking his head before I could even get them all out.  Thankfully, he will be glad to see Chloe and evaluate her if indeed there is scar tissue in her brain.  I was relieved to hear that he would treat her even at 16!  I do think he is a most wonderful doctor.  We have shared many experiences with him.  Even today as we got ready to leave, he wanted to know about my health!  He is so caring and loving...not to mention brilliant when it comes to MS!  In January, he will repeat Zine's MRI scans and we will finalize whether Zine takes the second round of Lemtrada.  Dr. L wants him to take the last treatment despite the fact that we swore we were not taking any more.  We are definitely praying for great wisdom in that decision!

Whew...if you're tired just reading all that...imagine how my body and mind feel!  I am honored to be able to walk with my parents, with my husband, and with my children!  However, I am feeling the need to have some down time, some quite time, some time to grieve my mom, some time to process emotions, etc.  But I haven't found that time in my schedule yet!  Tomorrow, I have an appt and Chloe has an appt.  In two weeks, I have to make trip to Chloe to Ohio for medical appts. there.  Which means, I will keep pushing until something breaks me and everything comes crashing down.  I know how this works!

But despite all that is going on in my own life, my heart is burdened tonight for the people in Haiti. And for my friend who is back at the hospital with her husband who has 102 fever tonight!  

I can't wait to share in another post a revelation God gave me today!  My spirit needed that Word from Him today!  And I do LOVE how He knows just how to reach my heart!