In the Shadows

I decided that I needed to do something to be more intentional about gratefulness this year.  So in January I began Joy Dares every day.    I invited five friends do this with me...I think only one of them has stuck with me.  It is difficult!!  Each day I have a topic and I am supposed to come up with three things that I am grateful for.  Sometimes the topics are easy.  Sometimes the topics are incredibly hard.  Yes, I know the goal is to show gratitude but the topics are just what I need to think outside the box.

This week, one of the topics was 3 Gifts in Shadows.  Now, before I go any further, I must backtrack a bit.

This past week, I have been at the lowest and darkest place in my life ever!  There is a situation that has robbed my joy!  It has made me feel like a complete failure.  It has created anxiety and fear like crazy.  It has made me cry buckets upon buckets of tears!  It has overwhelmed me.  This situation is so much bigger than me that I can not even begin to put my thoughts around it.  When I look at it, I see an impossible situation.  And when I think something is impossible, I want to hide!  So....now that you know a bit of where I have been...I will get back to the shadows.

After feeling the way I have felt, the fact that I could not think of three things in the shadows that I would ever want to thank God for sent me spiraling into the mode of I'm a failure.  I'm thinking spiders and bugs, dead leaves, etc.  Shadows just don't seem like a pretty place!  So...here it goes again..."God I am a complete failure because I can't even come up with three things on this list!!!"  In my desperation to not feel like a failure yet again, I just kept meditating, pondering, complaining, thinking, etc.  And slowly God began to help me think of things to be grateful for in the shadows.

Shadows are dark places.  I have been in an exceptionally dark place.  But a flashlight can be shined in the shadow and it is not as dark.  In my dark place, I can be grateful that I can shine God's light into my shadow.  I know God's truth in my head but I don't believe these truths right now....but these promises are my light.  I am to speak them over and over and over.  God said, "One day...You will believe them in your heart.  But for right now, just speak the light of truth into this dark situation. " Wow!  To think I thought I had nothing to thank God for in the shadows!

I pondered some more.  Two more things...surely I can do this.  And the most beautiful picture came to me.  A few weeks ago we spent some time in Chattanooga at the aquarium.  I had sat down on a bench to rest for a few minutes and to my right was this corner that was pretty dark.  Not much light and covered by shadows.  I can't tell you how many people went into that dark corner.  Some hid and couldn't wait for their loved ones to find them!  Some found it as refuge.  You could just see them breathe sighs for a few minutes in that dark corner.  In the shadows of my life right now, there are times that I just want others and God to find me and rescue me!  And God has sent a few people to journey with me in the shadows.  Even though it has not been fun and it has been very difficult I am so grateful for those that God sent in the darkest shadows in my life!   And as I share that dark place with others, God will then send others to join me the shadows.  Also, as I am in the shadows, I need rest.  A friend reminded me the other day of a verse from Psalm 91:1.

Lastly, I can be grateful that from the shadows you can find new perspective.  I would love to NOT be in dark places...EVER!  But even in the shadows, I am gaining new perspectives.  I looked at Zine in the middle of a huge panic attack one night and I said, God better do something big with this!!!  Sometimes in the shadows the light is brighter and if you look hard enough through the tears there might be a rainbow. I am praying that in the middle of this shadow and as I continually speak the light of truth that one day I am going to see the rainbow through the tears.

A Difficult Week

It has been an exceptionally difficult week.

I went back to work.  That was 4 hours each morning.  Every afternoon but one someone had doctors appointments.  Sometimes there were two in an afternoon which made for very crazy days!

We have had numerous discussions on whether Zine is going to begin the process of moving to short term disability or just what to do.   Vacation Days are gone...so we have issues if he were to go back and got sick.   We started discussing short term disability even before this last chemo treatment.  Please pray that we would have great wisdom.   There are many, many things to consider in this process to the point that it can literally make your head spin!!

Krisann continues to really struggle!  Our hearts are broken for her.  We had hoped that when we got home she would settle down but she hasn't.  It has definitely been HARD!  We have her an appointment next week to be evaluated as to whether there is some anxiety that needs to be medicated or if we just need better parenting skills.

I have had some health problems which adds to the stress level in our home.  I am definitely not ready to share the details of what is going on, but we do cherish prayers as I navigate doctors appointments for me as well as the rest of our family!  But I think I have said it before, but I will say it again, stress does terrible things to our bodies!!

I have had a huge struggle this week of feeling like a failure!  There is a circumstance that is overwhelming to me.  And I see no way around or through it!  So it leaves me feeling hopeless!  And I wouldn't lie if I didn't say this situation sends much fear in my heart.  The struggle is real!!!

On the other side of difficult is gratefulness!!

We are grateful to be at the end of 2 weeks post chemo!!  Yoo hoo!!!!  We also enjoyed our first visitors this week.  One of Zine's friends visited on Sunday.  And Tuesday night a couple that we love came and hung out with us for a bit.  We were so grateful for both of those visits!!

We are very grateful for the cards and acts of service we have received.  We have been loved well!  And the meals....I still don't have it in me to walk in my kitchen so the meals have been a total blessing!!

Zine is feeling better and stronger!  No more sleeping 6 hours during the day.  Some days he has managed to not nap.  Others he has definitely needed a nap!!

As I look back over the past month, I have no idea how we have survived!  Guess that's called God's grace!

Continue to pray for us!  The road ahead is long and difficult in more ways than one.  So just pray that we would rely on God's strength and not our own.

Back to hospital

We made another trip to hospital today!

I noticed Wednesday night Zine's left foot was purple!  However, Thursday morning it looked much better.  However, last night and this morning it was not looking too good.  He's been carrying lots of fluid in his feet and now one was quite purple.  I decided it warranted a call to the doctor this morning.

Actually---his feet were not this purple.


But the pictures below doesn't do purple justice either.

And the doctor did think we needed to check it out so he sent us to Madison Hospital for an ultrasound to look for blood clots in his leg!  We have a very special friend there!  And guess who took care of us today...our very special friend!  Talk about an opportunity that God provided for us to be able to say thank you and share how she continues to be a part of our lives on a regular basis!  It was so fun!  She remembered us and we no doubt remembered her!!  We exchanged phone numbers this time!  So our lives will continue to interact with each other....some place other than the hospital!!

It didn't take long for a phone call from the doctors office.  There was no clot in the legs.  However, the doctor was very concerned!  With Zine's history of blood clots and the fact that he has just finished chemo, there was great concern that he could have blood clots.  We were told to watch very carefully for any thing different.  And to GO TO the ER and NOT wait until Monday to call the doctor.  I reminded him that last adventure with blood clots Zine almost died and that obviously we weren't very good at recognizing changes until it was almost too late!!  And that's why I was very cautiously reminded again that ANY change in his leg, foot, how he felt, fatigue level, short of breath, funky heart beats, etc.  those were all reasons to go to the ER!  The wording used was IF you make it until Monday without going to the ER, we are going to do ...... to try to help improve the circulation!  But that sounded like a big IF to me!  But needless to say, I am on watch for any changes.  But...he doesn't complain so it is so hard to know for sure.  I've talked to him about the importance of being honest about how he is feeling!  So I'm definitely praying for great wisdom as we go through our weekend!

I do think getting out wiped him out.  We came home and he settled in for a long nap!  I was grateful to see him resting!!  And going to the hospital and trying not to get any germs is quite an adventure to say the least.  Masks, sanitizer like crazy over and over again...I'm learning how many things we touch in a day can add up when you leave your house!!

3 clean heads today at my house!!!  I was super grateful for that!  However, now that that chaos is settling down, I am crashing!  No energy, don't want to move, extreme fatigue, and some other physical symptoms as well.  Praying for renewed energy tomorrow!

A Broken Record

Do you ever feel life is a broken record?  You know, same few lines of a song keep repeating!  Oh wait...I think that is showing my age!!  But...that's exactly what our life is right now!

Exhaustion continues to be a major issue.  My back is still worn out.  Zine is still locked in his room.  Conner is still sick.  And I have yet to have a completely clean head day on any of the three children!  Washing machine is still going non stop.  Hot water continues to depleted on a regular basis.  Our meals continue to be irregular and unhealthy...with the exception of dinner! We continue to wear masks constantly.  We continue to not eat meals together.  I continue to have a cleaning session every morning about 7 am and clorox wipe everything down!

However, this morning when I awoke at 3 am..I had just a tad more peaceful spirit, now understand that's not saying much...but at least for a moment I didn't feel as stressed and heart broken.  And I'm hopeful that today at least one child will have a completely clean head!!   If not, you will hear me cry!!  Today I'm on duty by myself.  I've thankfully had help for the past couple of days!  Today is my regularly scheduled massage!  So it better not snow too much!!  Or else you might hear me cry again!   I think the hair routine is about to start very soon because Krisann is scratching crazily right now and so that I get an early start and don't miss my massage.  My back and neck definitely need it!  One of the benefits of this life...between some awesome cleaners last week and my continual clorox wiping and Krisann dumping half a picture of sweet tea out yesterday, this house may be as clean as it has ever been!

In the past few days, our hearts have been broken, our eyes have cried, our spirits have been weary, and our hope has been lost!  But we continue to work towards applying the truths we know in our head to our hears!  Head knowledge is so much easier work than heart knowledge.  Krisann and I have been talking a lot lately about knowing things in your head and knowing them in your heart.

And everyday we listen to some praise and worship music.  And yesterday this is the song that we listened to over and over.  Steady My Heart is another song that we have come to listen to on a regular basis!  Krisann wants to listen over and over and over so she can learn them.  Trust In You is another song we listen to over and over again!

To give you a glimpse of some of the discussions we have had in our house...many of them have started, "I'm afraid my daddy is going to die" "Is it time and how can we live on disability?" "Is dad going to get sick?"  "My heart is broken that you have to go through this." "I don't like you being sick."  "No one understands what it is like to live in this place."  "I feel like my friends don't understand."  "Did you sanitize your hands?"  "Do you have your mask on?" "Do people get remarried after their husband dies?" (That one almost sent me over the edge.  Thankful there were people here when she asked or else I might have fallen apart.) "It's okay, put your mask on and come see your daddy."  "I need a hug" (followed by tears and sobs).

But in the middle of all those painful difficult discussions....there have been moments that I can not even begin to share.  Here are some that I think are just priceless.

Krisann has been the most attentive one to her daddy with Conner being sick!

Zine and I have shared some very tender moments together.  Yes, they have brought us to tears numerous times!  But for once, we really haven't argued.  They have just been peaceful discussions!  And moments of emotional tenderness and emotional caring going on.

This picture to me captures so much!  Last week, we had the blessing of our pastor being with us!  And I saw my pastor be a servant in its truest form!    There are many things I can learn from his servant heart!

And these two men...there is nothing but love and admiration on both of their parts.  I was blessed to have the opportunity to watch these two for a week.  I was very nervous and anxious about someone being with Zine and I in our worst moments.  But God was so good.  The awkwardness was far out weighed by the love and compassion!  And I could have never done this alone!  To think I thought I could was absurd!!

And even this....a time of family bonding for sure.  We would rather our bonding be in different ways...but we have gotten lots of time together this week.  Guessing God wanted to bless me with their continual presence since I was away from them for a week.  :-)

Just a glimpse...and I do mean glimpse...into what life is like these days!

Home to Pure Craziness and Exhaustion

We arrived home Friday afternoon about 4:30.  It definitely did not take long for Zine to find the bed and sleep for awhile!

And then I got my lesson in taking care of head lice.  It took two and half hours with my aunt and I both working to go through Krisann's hair.  I suggested a hair cut but she was not too fond of that idea.  And goodness knows, this girl has enough anxiety right now that I don't need to be adding to.  So we will keep going through strand after strand after strand of LONG hair!!  Thankful to some ladies who came on Thursday to help at my house!!  They did some acts of love for sure!!  Oh my!!

As I literally sobbed and sobbed on Wednesday night and wanted to come home so bad, my pastor said, Karen....I've already got Heather getting some help for your kids and your aunt.  You just get to watch and see what God does!!  I didn't like that answer.  I think I might have cried some more and said but they aren't mommy!!  But...that's exactly what happened!  God sent just the right people. And to hear just a few of the stories from my aunt of those that came to the rescue just warmed my heart!  And although I didn't like it one bit, God did do exactly what Michael said He would do!  Thank you ladies for giving so sacrificially!

So...back to the home front.  After going through Krisann's hair on Friday evening, I said alright you two big kids....let's look at your hair...and sure enough I found nits in both of their hairs.  I had no energy to go all through their hair.   We washed hair and that was it.  After the lice session, we did settle down and rest.  Krisann usually sleeps with Zine and I but right now she can't so that's proving to be interesting and a bit tiring for me.  It's much much easier to just let her climb in my bed.  But we did get some pretty good rest!

Saturday, it was non stop.  My Aunt Elaine had come this past week. I had prepared her for what was to be a difficult week just because our kids were stressed and anxious.  Little did I know she would get to deal with head lice!!    :-(  She'll probably never come back again!!  But she definitely earned some gold stars this week!  We love you Aunt Elaine.  We hope in a few weeks, this whole week will be remembered as a week where God provided for each and every need!  We also hope it will be a bit humorous and not stressful memories!!  We did take moment to take our pictures.  We look like the lunchroom ladies Aunt Elaine said!!

Also on Saturday,  Krisann kept wanting me to hold her and I think she felt bad but had no fever.   It took me almost 5 hours to go through Krisann's hair.  Every muscle in my back hurt when I was done and my eyes were having a hard time focusing and my head hurt from straining my eyes so much.  I still had Conner and Chloe to do.   I also was washing like crazy and packing stuff away.  Pretty soon my garage will be full and my house will be empty!!   A little after lunch I could tell Conner felt bad and he said I have a bad headache.  We checked his fever and it was almost 100.  He went to sleep which he never does!!  And then I woke him up to check his fever again and it had come up to a bit over 101.  Lovely!  And this...is where I just about lost it!!  Thankful that others recognize when I am beyond functioning and pretty soon help was on the way.  So with a couple ladies help, we finished the nit picking, vacuuming beds, etc. about 5.  Without help it would have been at least 7 or 7:30 before I was done!!  So once again, thank you just not seem adequate!

One of the things that was told to us over and over again was for Zine NOT to be around children.  Unfortunately (in this case), we have 3 of them!!  Kinda impossible!!!  So we did discuss the importance of using masks.  And now....I have one sick.  Definitely raises the fear factor!!

But we are beginning to figure out how to work things.  If there are people here, Zine stays in the bedroom.  Which is okay because he's weak.  His voice is even weak and shaky so he is resting and sleeping a good bit!  When we go in the bedroom, we wear masks.  We are having others wear masks to try to reduce the risk of bringing in germs.    When it is just our family, we are letting him out of the bedroom some.  But right now...we won't let him and Conner in the same room!!  We are eating in shifts.  We eat.  Then we wait a little bit for air to circulate through our filter and then we wear masks and Zine comes out to eat!  It is by far not the best family situation to live in.  So...it is definitely still very stressful around here.  Just this part of living in itself would be stressful for the family!  But then add in lice and sickness, it's just crazy!  But seeing Krisann in her little mask is starting to not shock me as bad!  At first, everytime I saw her put her mask on and go in...it made this big lump in my throat.  But last night, that was getting better.

I truly don't think I have ever been as exhausted as I have been this week.  There was very little rest!  This was MOST definitely the worst week ever!!  I assure you, we don't have the ability to do what we have done.  And we don't have the ability to do what we have to do this next week.  But God continues to sustain us.

I got up very early this morning to finish some work for my aide who is teaching for me next week.  I know when the nit picking continues I will be at it all day so I needed to get stuff to her before that started.  I also just needed some alone time.  I struggled with my perspective on life yesterday.  And my relationship with God has not been at it's best to say the least lately!  I have been struggling to take truths I know in my head and apply them in my heart.  And yesterday was indeed one of those difficult days!  So I wanted a bit of quiet time alone this morning!  And now everyone is still asleep so I thought I would take a few minutes to update our blog.  Time is priceless around here right now!

Continue to pray for us as we try to figure out how to live life, protect Zine, rid these heads of lice, etc.  And that somehow someway God would give us rest!  That Krisann would sleep in her bed without struggling.  Last night was particularly difficult for her.  That in some unexplainable way, that no one else would get sick!  I've had runny nose and scratchy throat but I wouldn't classify myself as sick yet!  So I'm praying I don't get down sick!! Pray for Zine as he has just gotten up and is feeling very, very weak!

My work must begin.  Zine needs meds.  We need some breakfast!  And then it is time to start hair and laundry and vaccuming!   Once again, I'm thankful that once again God has provided a sweet lady who is going to come just help from the beginning today!  Hopefully doing it that way, I will have a bit of time to be with Zine before the day is over.  Staying in a room almost 24/7 with no company is very depressing!  So pray for his emotions as well!

 

Finishing Up Chemo

As I write this, Day 4 is complete!  And Day 5 is in progress.

Zine continued to have side effects that just make him feel very bad.  We got back to the room Thursday and it took us a bit to settle down.  Zine was very uncomfortable.  He asked for meds and when Zine asks for meds we know it is bad!!  But he finally settled down and slept for couple of hours.  He woke up about 6:30 and said I think I need to wake up to sleep.

We have had numerous struggles everyday.  Each day has brought a new heartache or struggle.  I am pretty certain it has been the MOST difficult week of my life!!

We have not posted any pictures because that has just been such an awful experience.  But here's a pic that in a nutshell gives some insight into how we have felt this week.  And at least Zine has his eyes open in this picture.  Zine has slept a lot this week or he has laid with his eyes closed from just feeling so bad!

But last night brought a renewed sense of accomplishment for a few minutes.   It's almost over!  And then we quickly realized this part was almost over but there was more to this season.  As we began to discuss how to live upon our arrival, we began to discuss the many, many precautions that needed to be taken.  And it quickly sent us, back to that place of this is going to be difficult.  And when we get home, there will be no one else to tell us what to do!  We will be on our own.  Feeling a bit overwhelmed by that at the moment!  We have needed much wisdom and guidance this week.  And to think about going home and getting back to it on our own is a bit overwhelming!  But we do have a nurse that we can call 24 hours a day so that helps a little bit.  But I'm anxious about returning home.  Not only are we going home and preparing to protect Zine from illness as much as we can, we are going home to a 6 year old with head lice!   So that brings an entire other level of stress.

Pray for us as we return home today.  Pray that Zine will make return trip okay.  Usually after chemo things are really rough.  So just pray that God would sustain him on the trip home.

Pray for us as we adjust to the "sterile" environment as much as we can create!  It's really not in my specialty area!!

Pray for our children as I feel that us returning home, might bring a new level of stress.

Pray that Zine will be protected from illness in the coming weeks.

Thanks for journeying us with us!  And just because we are home, doesn't mean the season is over. Even as we discussed and prepared last night for coming home, we realized that this is definitely NOT over.

Chemo Day Three

Zine had a great night Tuesday night.  He rested well.  I think we all rested well.  He woke up with pretty good fever, swollen and puffy eyes, and just looked terrible.  But we headed back bright and early for our 3rd treatment.  It was hump day.

The treatment went as expected.  He slept about 2 to 3 hours Wednesday morning.  And then he was awake until we got back to our hotel room.  He became very miserable pretty quickly.  He was miserable.  He said anywhere something touched him hurt.  He just could not get comfortable.  So...I gave him some meds to see if that would help ease the total and complete discomfort.  And I had him move to the bed instead of reclined in his chair.  He finally settled down and slept another three hours.

We kind of woke him up.  He needed some medicine and it was dinner time as well.  So...he got up and felt some better.  But he wasn't talking hardly so I know he still felt very bad.

We had to get him some meds at pharmacy yesterday.  He has a yeast infection.  It's always weird to walk in a pharmacy that's not ours!!

I had two experiences yesterday that just sent me over the edge emotionally and neither of them revolved around him.  So...I'm glad I had a better day during treatment yesterday!!  Or else I would have been a wreck.  Panic attack central happened late afternoon!  It was terrible!  And then complete melt down happened at 10:00 pm last night.

I have a very torn heart.  I really need two of me!  One to be here and one to be at home.  The stress is high at our home!  And I know there are some warriors that even as I write this preparing to go to my home and do what can be done to help alleviate stress.  But...mama isn't there!!  At 10:00 when Chloe is in a work and Krisann is crying and scared, it was more than my mama heart could take!!

Thank goodness for Zine and Michael stepping up and just shedding godly wisdom on the situation.  And thankful that in one of my worst moments, there was wisdom, love and comfort from both of them.

Wednesday night Zine was very restless all night long.  He could not get comfortable.  So here we are at Day 4...

He has started his pre-meds and getting ready to begin the four hour chemo drip.  Followed by two hours of observation.

No words my friends for how difficult this has been.  God is definitely the sustainer.

Looking at two more difficult days!  One more night here.  We can do this...we can do this...we can do this.

Day Two

Last night was definitely horrid!  None of us slept much at all!  Zine was definitely one sick guy!!!  He had some respiratory problems last night as well as just restless.  

Today, he slept for probably 3 or 4 hours while there.  He was awake for awhile, we made it back here and he slept some more.  He's been awake for couple of hours and we must get on shower and nighttime routine soon! That's not the easiest task to say the least.  Getting in the bed and getting out of the bed is very hard too!  Soooooo glad I have some good strong muscles with me.  It's very nice to feel like I'm not the only caretaker.  And it has been nice to be cared for as well!  Now sometimes when I'm being cared for myself, I balk a little bit.  But I am learning to listen!

Today at the end of chemo, Zine's blood pressure was raised as well as his heart rate.  He also had low grade fever.  They say those things are side effects of the chemo.  So we are not surprised.

He has talked some this evening.  So that says he feels a bit better than last night.  But I"m not sure you could get a lot worse than last night!  It was incredibly difficult.

Our children have definitely been concerned!  Krisann has really struggled!  So we mustered up energy to FaceTime with them tonight!  I hope it helps them settle some.  But it took about every ounce of energy to do that!

Continue to pray.  It is definitely a challenging week!  We are pleased with how Zine has tolerated the chemo.  Although difficult, we haven't had any near death experiences!  So for that we are grateful.  Now last night I was worried...his heart was having to work really hard!  At 3:30 I was up checking respirations and everything!

We are simply put exhausted emotionally and physically!  Very very tender and emotional to say the least!  Decisions are near impossible for us to make.  We've both had tears today!  So we definitely continue to cherish your prayers for continued health physically and emotionally.

You guys are keeping us going with your texts and prayers.  Please know if we don't respond to text, we have read them and they are each special!!  It literally keeps us going sometimes!!  So thank you so much to those that have texted or messaged us!   We are a bit short in our responses I know.  But once again, please understand we are overwhelmed and exhausted.  But we are very grateful for all the texts, messages, and prayers!!  Please keep us going the rest of the week.   I think the longer we are here, the harder it gets for me to be away from my kids!  But I love their eyes in this picture.  I will look at those eyes a gazillion times between now and Friday!

Good night friends!  We must prep for another early morning!  And another long day!

Chemo Day One

Well, we have almost survived this day in pieces.   We have conquered one mountain, and then another and then another.  We still have to shower and do night time routine which is going to be very difficult I forsee.  But...thankfully I have great help!!!!!  Thank you Jesus!!

I have had a horrible day to say the least.  Cried bucket loads numerous times today.  Just about fainted.  Really thought I was going to while nurse was going over the details.  Was glad someone was behind me that I could lean against.  But have been loved well in this difficult place.  Our pastor has done a fantastic job of loving me and loving Zine!  Lisa Peck has been with us today and she too has been loving well.  Despite the fact, she doesn't like my eating habits!!!  :-)

Zine was quite a bit amped up from the steroids he got before chemo.  He also thrives in a group setting unlike me!!  So he talked almost the entire 7 hours we were there.  He tolerated the chemo well.  His heart rate went up but not to a point that they had to do anything about it.

He definitely doesn't feel well tonight.  Seems to be dizzy or maybe just weak!  He's kinda achy.  Says he feels like parts of his body are going to sleep.  Not real comfortable I don't think.  But the guy never complains so it's hard to get an accurate view!  And he's not sick unless he is throwing his toenails up...then you can call him sick.  (I say as I roll my eyes.)  He's not talking tonight so that says a lot!!! But my perception is that he feels pretty bad!  And based upon the only time he has been up since we got here, I think my perception is quite on target!  :-)

Thank you for your prayers.  We continue to cherish them.  It is going to be a long, difficult week.  Not sure I can think of many things in my life that has been as difficult as this has been.  This might be tops!

Know that God is in control of this week!  And am extremely grateful to have some physical help this week! Sorry for the short lack of details update.  Just don't have it in me to write.  But wanted to be courteous of you who are covering us in prayers.  Keep them coming!!