Disqualified...Really?

I have always had the blessing of being able to give and pour into others.  One of the ways, God has blessed me to do that is that I love to listen to my friends and then give them out of the box advice!  I'm always thinking outside the box for them.  Sometimes, I have to catch myself and make myself backtrack so that I can offer them some comfort before I start thinking outside the box for solutions!  I have had the opportunity to bear a lot of other people's burdens alongside them!  So...keeping this mind...when overwhelming struggles hit my life...my friends and family were so sweet.  They wanted to do anything possible to relieve some of my heartache!  But you know what else happened...it seems that since we were going through struggles of our own, I became disqualified to listen, care, and think outside the box!  Now...I know this all happened out of love for me!  But really?  Disqualified??

I have one friend that just about two weeks ago for the first time shared intimately with me!  And then you know what she immediately did...APOLOGIZE!  I'm so sorry I shouldn't even be telling you this.  You have enough to deal with without listening to my woes!  If I had a nickel for everytime someone said...well, my struggles are nothing compared to what you are dealing with...I might could pay off my Uncle Sam bill and have some left over!  Even my own dad spent six hours in an emergency room and kept my mom with him but didn't call me nor anyone else until he was on his way home.  When I asked why he didn't call me, he said you've got enough problems without me adding to.  My sweet hubby even does his very best to not weigh me down with his struggles as I have enough to deal with he says!     Uughhhh!  That's a nice word for how all that makes me feel!

If I were sitting in a counseling session I would say it has made me feel exceptionally alone.  No phone calls from friends hardly.  There's nothing of importance to talk about now.  Even my own family communication has changed.  It has made me feel quite inadequate and not needed.  And to cope with these hurts and struggles, I have put up some very big fortress walls around my heart.  When I feel alone, inadequate, and not needed that seems to be my coping mechanism...castle walls!  Nice big sturdy ones at that! And for most everyone, they ask how are you doing and I say ok.  End of discussion.  But tonight someone asked the same question, I responded the same way, but then they said are you really?  And I felt tears rise to the surface!  But no, take a deep breath and swallow.  Then change the subject!  But the truth remains... Even in the quiet moments between chemo treatments, even in the middle of a friendly brave face, there is still a struggle.  A much different kind of struggle though!

I have been left struggling through questions like God how are you going to use me now??  I know I have some struggles of my own, but God does that disqualify me?  God will you ever take me back to that place of long conversations and sharing life with others?  God will I ever take my family to Honduras or China or Africa?  Probably not.  But God, what are you going to do with our family to make us beautiful servants?

I'm not angry at friends and family.    I'm not angry at God.  (Right now anyway).  I'm actually quite desperate for Him.  I want His comfort and assurance that I'm not disqualified.   I desire Him to give me a glimpse of how I will be able to serve Him even in the midst of fiery trials.  I do recognize my limitations but there's got to be a way to still serve Him.  He has a plan.  And I'm counting on the hope that my dents are simply to keep me desperate for Him...not disqualified for serving Him. And I will continue to wait with eager expectation in what beauty God is going to bring from these ashes in our lives and how that beauty is going to be used in His kingdom work. 

Kingdom Friends

As I look back over the past four months I find it very interesting how God Himself works in your life and how He uses people to do His work in your life as well.

When trials come, you think you know who your friends are.  And I know when my life fell apart, I thought I knew who was going to be there for me.  But then as I barely managed to function for a few days, the ones I thought would be there were silent for the first day or two.  At first, it was very easy to take offense.  Why haven't they come?  Why haven't they called?  As I thought and thought about this, God made it very clear that they were so hurt with us and for us that they literally had no clue what to say.  You see, they only had tears for us!  And as they began to put their emotions together and talk with us, it became so clear we were not forgotten but rather we were loved and cherished!  And those that were closest to us were so broken for us!  I wonder if this is part of what was going on when Jesus didn't come immediately to see Mary and Martha after Lazarus had died.  Maybe Jesus was so broken because Mary and Martha was so broken!  But Jesus knew what He was going to do but that didn't keep Him from being broken for Mary and Martha!  In our situation, what God did was in those first couple of days, He sent some people that we would not have considered our very best friends to minister to us!  And they did that well!  A sweet friend from church immediately began to plan meals.  A lengthy phone call where someone just prayed over the phone and brought calmness.  A visit from an elder and his wife who just loved us and prayed with us.  God definitely was at work in our lives through His people!

Some times, people come into your life for a season.  I struggle with being bitter when they are there for a season and then they are gone! I often feel like I share my life and heart with them and they are not good stewards of that!  But what God is teaching me, is that He puts the right people in your life at just the right time.  Those people are there for a season and that's His purpose!  Maybe their season was when I spent a lot of times in a hospital and they were called to be with Zine and I.  Maybe their season was to get us through our messed up holidays.  Maybe their season was to take Chloe to get her allergy shot several weeks in a row.  God sends people for the right season! My human side still struggles with this but God has so plainly showed me this truth!  And I walk in confidence knowing that God will continue to send just the right people at the right time.

Others are our prayer partners.  They carry us before the Lord on regular basis.  They have no way to know how much of an impact their prayers have in our daily lives.   But I can testify that often these prayer partners, whether "virutal" or "local", send notes, emails, facebook messages...and there are no words to say how often the timing of those notes or messages meet a need in our lives.  Just two weeks ago, it was a rough day.  And in the mail, was nothing but a simple card!  But it meant the world to me!  Several weeks ago, as I was leaving church, a friend who is always the one who is happy and keeps everyone upbeat hugged me and said I'm not good with words in circumstances like this but I care about you and pray for you all the time.  Can I say, how much that ministered to my heart?  So...even if you consider yourself a prayer warrior, your  messages and prayers, God orchestrates them to enter our lives at just the right time!

Then, there are those random act of kindness friends!  They are those who care deeply and hurt for us but simply put their lives do not allow them to be a constant support in our lives.  But they have loved well through monetary gifts, gift cards, house keepers, meal providers, surprise gifts left at our door, Christmas presents, and invitations to take us to dinner just to get us out of the house kind of friends!  Some of them have been known people to us such as a neighbor, a long time friend from out of state, a church member or a  Sunday School class.  Others have remained anonymous such as the secret Santa or the movie basket that was left on our porch!  But each of you have played a huge role in lifting our spirits and meeting needs in our lives!  I think I want to do more Random Acts of Kindness for others!!

Another group of people that God uses are the no shows.  Yes, God uses the no shows!  You know...those friends who you just knew were going to be your confidants in your life as you walk through difficult times, but then they run and hide!  They are no where to be found!  I'm so grateful that God has not sent a lot of these into my life!  However, it's not my job to judge those that don't show up!  I don't know their story.  Maybe our story brings back a hurtful experience from their past and it is simply too painful for them.  Maybe they are simply overwhelmed with their own life.  It's not my job to judge why those I think are going to walk with me are no shows.  My job is to learn from God, even in the no shows!  And allow God to freely use people to fulfill His purpose here on earth!

New friends emerge from difficult times!  Some of the people who have entered our lives are new friends.  They weren't close to us in the past.  But God has gifted them with a heart or a service that He has used to meet needs and minister to us.  And they are well on their way to becoming what I call an "all in" friend.  I'm grateful for new friends!

An "all in" friend...they are "all in" to encouraging, giving, supporting, loving, listening, calming, etc.  And not only are they all in, they are all in for the long haul!  They will be here in 10 years.  They will be here tomorrow.  Not everyone can be an "all in" friend.  God has selected certain people to be the "all in" friends.  And personally, I think I feel sorry for my "all in" friends!!  But I'm so grateful for my "all in" friends.

God's plan is to use people to fulfill His purpose in our lives.  He uses each person individually and uniquely.  My goodness, I wouldn't want eight bowls of spaghetti to show up on the same night!  So why would I want God to use people all in the same way??  I'm so thankful that I have people surrounding my life who are obedient to God and responds to His prompting!  I'm so thankful that God is teaching me about how He chooses to use people to accomplish His purpose.  And I'm so glad that I'm learning so much about how to love others well.  And I'm learning that I don't have to be the "all in" friend to everyone.  I might be the random act of kindness friend!  That's still part of God's purpose.  And I think that God wants us to continually to be looking beyond ourselves.  He wants us involved in the life of others.  I'm so grateful that even in my chaos, God has allowed us to see beyond ourselves and provided ways we can meet needs in others lives in the middle of our chaos!

Where are you?  Are you self focused?  Or are you allowing God to prompt your heart and are you being obedient to His prompting?  If so, then let me assure you, you are Kingdom Friends!

As a concluding remark, I struggled with this post because I'm afraid I might have hurt feelings or I might have friends that are going to be wondering where they fall in these categories.  My purpose of this was not to hurt feelings nor was my purpose to slam anyone for being a no show.  My purpose was to show that God uses people for His Kingdom purposes and He uses every one uniquely.  And He is about providing for each and every need.  He has the power to orchestrate the timing of a simple card or a simple text message to be part of His Kingdom plan.  And I want to urge us all to be Kingdom Friends!!  Listening and being obedient to God's prompting!  Moving beyond ourselves and learning to look at the needs of others!

Two weeks of chaos

Do you ever feel like when it rains it pours??  I've kinda felt that way the past two weeks.

--A week in Ohio doing medical stuff in a new place with new doctors alone.
--A 5 year old with  croup quickly followed by two ruptured ear drums.
--A husband whose MS decided to shut his body down.
--A day of doctors phone calls, blood work, trip to Cancer Center to have port flushed, and to the urologist to have cath changed.  Yep...all in one day!
--A broken heart at just watching my spouse suffer to no end.
--A marriage that has had its moments of struggling.
--A mom with Alzheimer's disease.
--A week with technology problems at work.
--A daughter starting new medicine and working to figure out how to reduce side effects.
--Another daughter who decides to be allergic to some medicine and develops horrible hives.
--A lot of phone calls and emails to follow up from trip to Ohio.
--A foot that hasn't healed as quickly as desired.
--A special prayer of healing and I was forgotten about in that process and missed being a part of that or even watching it happen which resulted in a lot of sadness when I should have been thankful and grateful.
--An overwhelmed feeling of being alone.

I'm sure I left things off that list!  No wonder I'm feeling tired, exhausted, and just plain depressed!

But in the middle of this chaos, God has sent blessings.
--A therapy dog to love and cuddle on the first night in a strange place.  We won't even mention the Ohio Buckeyes that came that night as well.
--A Ronald McDonald house right across the street from where we spent so much time.
--A mom and 14 year old daughter whom we had never met just happened to come see Chloe and I minutes after Chloe had emotionally broken down.
--Nice doctors and nurses.  Always worry when I meet new ones!
--Dinners provided on crazy days.
--A neurologist who cares deeply.
--Pediatricians who will see patients on Saturdays.  Two Saturdays in a row at that!
--Sweet friends who have cared for and loved my children.
--A free movie night.
--A friend who sends me messages and says I care about what you're going through.  And who listens even when I'm so mad and upset that I say not nice words!  A friend who speaks truth to me!  A friend who loves so well even from afar!
--Snow and Ice days that made recovering from chemo for my husband much easier!  In the weeks that his blood counts were the lowest, numerous days he was stuck at home.  Totally positive that helped in the recovery!
--A son who will chip ice away on the part of the driveway that gets no sun even after taking care of a sick 5 year old for a week!
--A daughter who will babysit so Zine and I can go watch our free movie!

And in the middle of this chaos, God has whispered secrets to get me through the days.
--Be strong and courageous.
--Do not be afraid.
--Nothing can separate you from My love.
--I have plans to prosper you and not to harm you.
--Trust Me!  Press into Me! Cling to me.
--I can calm the waves.  I can calm your heart.
--Stand firm!
--Let me bless you with My grace and My peace.
--Let not your heart be troubled.  Trust in Me.
--Come to Me with your heavy burden.
--My Strength is made perfect in your weakness.
--I am interceding for you when you don't even know what to say.
--I will never leave you alone!  I will be with you always!

I'm thankful for the whispers and the blessings.  And if there weren't the struggles I might have missed these blessings.

Now...for the fleshly human moment...some times...I think I'd rather get my blessings and whispers from somewhere else!  Waiting for that transformation day when I will be able to say thank you for the struggles.  But...I'm not there yet!  I am not thankful for those struggles.  But I am thankful that in the midst of them God is faithful.

Doing the Difficult, Revisited Because My Wife Asked Me To

I hate to write a separate entity for my take on this day. I don't even want to remember it.

I try to 'protect' Karen from the MS monster. In my attempts I have not allowed her into my world and have therefore rejected her love and her. If you read her last post concerning me falling in the floor and telling her to go back to bed in a very unkind matter, you'll know what I'm writing about.  What a bonehead. I love her and I would be deeply hurt if she continually rejected my support.

I want to fight this disease, and I really don't want this disease to impact her at all.  Not even a little bit.  That is me living in fairytale land rather than reality.  When I get back to reality I know that she is very effected by MS and I can't stop it.  By trying to keep her out, I just make matters worse by making her alone with a husband with MS.  The more I look at things from the outside, I can see this truth, but from the inside my logic seems so sound.  What horse manure!

I want and need Karen with me.  I love her and want to do nothing to hurt her.  I want to protect and defend her no matter the cost.  Through MS I'm learning that the cost I must pay to defend and protect her is to allow her to hurt with me and beside me if I truly want to love her.  I'm not a fast learner though

I am just now starting to get this and I am sure I will forget what I currently know, but this selfish action needs to end if I want to love my wife well.

Faith Walking

I count myself as a Bible-thumper. I believe every word in it. The Bible is God's revelation. My problem with His book has been and continues to be my walking in His truth. I don't understand every word and I don't want to 'step out of the crowd' when His word says to if I desire to receive His blessing. I came to a crossroads today of my desire to be in the crowd and His word / leading. I stepped out of the crowd.

I have had MS for ~7 years. I have had aggressive MS that no medical treatment has worked for. I have read the Bible cover to cover > 9 times. Thus one would think that I would have sought out the elders to pray for my healing, as the Scriptures say, years ago. No, I have not. I have liked the crowd and traditional church way. I haven't been desperate. Today the Spirit got my attention. I went before the church to have the elders pray for my healing. Way outside my S.O.P. (standard operating procedure).

So now you're wondering if I still have MS? At last walking attempt, I would say yes. What's up with that?! I don't know. When Jarius was told his daughter had died, Jesus told him to keep on believing. I am therefore going to keep on believing; keep on trying and keep on faith walking.

Doing the Difficult

This week has been most difficult.  Came home to an incredibly sick little one.  Nursed her for several days.  All the while, doing research and talking and emailing doctors in Ohio from whence I had just returned.  Then about the time Krisann felt better, Zines body decided it wasn't going to work.  Tuesday night he needed help to get up off sofa.  He then "laid down gracefully" in the floor that night after showering.  Those were his words not mine.  I would call it falling!   But if one must be all professional we will say he laid down gracefully.  After much trying he called for help.  Conner and I together was able to get him up.  There are no adequate words to say how hard it is to get someone out of the floor who can't move their legs!  It is really difficult.  But we are beginning to learn some tricks.  Finally, the bed was conquered.  Getting in and out of bed is near impossible task for him.  And Tuesday night it was impossible.

Wednesday morning at 5:45, Zine decided he wanted to start his day in the floor again!  I think we should call this laying down not so gracefully this time!  We won't mention that his wife had suggested he not get up at 5:45!  But in my nature, I'm always ready and willing to serve.  How was I supposed to know that my simple turning the lamp on and walking around the edge of the bed could have been so life changing??  I was met with a grumpy Gus because I turned the light on.  "Why did you turn the light on?"  "So I could see to help you get up."  "Well, turn the light off and go back to bed."  I know that my husband laying in the floor didn't just tell me turn the light off and go back to bed.  But oh yes, yes he did!  Now, I'm always willing to serve, but when you cop an attitude with me or you are disrespectful to me while I am doing such, I lose my servant spirit REALLY quick.  So...what I did do?  I did exactly that.  I turned around, turned the light off, and got back in bed.  Sleeping...well...that was NOT going to happen.  But I did exactly what grumpy Gus told me to do.

The next 30 minutes were some of the longest minutes in my life.  Most likely some of the most difficult minutes I have ever spent.  For 30 minutes, I listened to my husband in the floor, wallering around, sighing, grunting, doing everything within his power to get up out of the floor.  Yep, for some reason, sighing and grunting are supposed to help in the process.  For me to lie in bed and listen to the struggle and do nothing...heart wrenching and such a helpless feeling.  The outcome..two words...Mission Impossible!!  But I had decided that I would not say a word, I would not interject my two cents.  This was something that he needed to wrestle through.  Literally wrestle through!  My heart was broken.  My heart was broken because the man I love sooo much found himself in the floor.  My heart was broken because the man I love wouldn't allow me to serve Him with a willing spirit.  My heart was broken at the struggle that was going on inside of him.  My heart was broken at the thoughts that Satan puts in my brain when Zine refuses my help...you're not good enough to help, you're not important enough to help, you've not smart enough to help, you're not loved enough or else he would let you help him.  And I'm sure I can add more to that list.  My heart was broken!  Almost 48 hours has passed since that moment, and I'm still heartbroken. Think I might have to do a lot of revealing and receive a lot of care over this event in my life!!

I won't even begin to explain what was going on in Zine's heart and mind.  He'll have to do that for us sometime.  But I imagine it included some determination that this disease was not going to win quickly followed by a feeling of defeat.  Not to mention, I'm pretty sure he had to swallow a lot of pride.  30 minutes by the clock, I hear Zine say, "Karen if you're still willing I need some help."  So I got up, turned the lamp on and walked around the edge of the bed.  This time I encountered a much different person.  There was no complaining this time.  There was resignation.  Once again, need I remind you how absolutely difficult it is to get someone out of the floor who can't help very much??!!  So it took awhile but I was finally able, with his help, to get him up out of floor and into wheelchair.

This was doing the difficult!  Struggling through situations, giving it your all, swallowing pride, having to forgive enough that you are willing to help and serve once you've been wounded, working together to accomplish a task when your relationship is not healthy at the moment, but persevering through...doing the difficult.  Doing the difficult...seems to be what we are each called to everyday.  Stay the course...do the hard!  And in that process God's grace is sufficient!

You're difficult situation is different from mine!  But we all have them in our lives.  Just remember doing the difficult is hard, but God's grace is sufficient.

For this very serious post, I do have a funny picture.

Sometimes even dogs have to do the hard thing like boy dogs wearing pink costumes.  Our poor boy dog, has been glittered and had make up put on him more times than I care to count!  So doing the hard...it's not just for the human race!  :o)

Great Big Bear Hug

Have you ever wanted a great big bear hug?  I think part of the reason I married Zine was because he gives the best hugs!!  I used to tell him that all the time!  I need to work on telling him that more!!  Because despite MS, Zine can still hug me and bring a calmness like no one else can!  I sure do love that guy!!  And I sure do love his hugs!  

I  love this bear hug picture with the gigantic teddy bear and Chloe! It gives me a beautiful picture of being loved, cared for, and protected.  When Chloe was sitting here, those were some of the thoughts that came to my mind.  We are in a strange place and dealing with strange doctors and this place inside the arms of a gigantic teddy bear brought comfort, love, and protection.  Sounds a lot like what God does for us.  I'm wondering if I'm the only person here who has struggled with understanding God's love for us.  

If I'm not perfect, then God will not love me.  Surely no one else has bought that lie before.  But actually I bet you have because I have. I'm the good Christian girl.  I was raised in the church and other than a few rebellious moments, I was a good girl as well!  So if I have struggled with that concept I bet others have too.  Why in the world do we put such tough expectation upon ourselves?  The truth is God is love!  1 John 4:8 tells us that God is love! So why in the world if God is love would I question that He would not love me if I am not perfect. Romans 8:39 tells me that neither height, nor depth, nor any other creature, shall be able to separate me from the love of God which is in Christ Jesus our Lord. God is love and I can never be separated from His love!  

But even with those truths, I still struggle with God loving me.  I thought I understood what love was!  When I birthed babies and raised children, I thought I got a better glimpse of what love looked like.  But when life fell apart, I think I came to realize I really didn't know what God loving me really looked like.   Or rather maybe I struggle to know how to allow God to love me.

God's used a crazy Santa in a parking lot to teach me a bit more about His love for me.  And now, He's used a gigantic teddybear to teach me even a bit more about His love for me.

If I could feel that same comfort, protection, care and love in the arms of Jesus who reaches down and gives me that great big bear hug,  that is represented here in this teddy bear... I think Jesus is there ready to do exactly that.  I'm still struggling to figure out how to accept.  Hmmmm....must be part of the transformation happening in my life!

Feeling and Revealing

Zine and I had the opportunity years ago for some counseling sessions with a grief counselor.  He came and spoke at our MDA Support Group Meetings several times.  I never will forget my first encounter in a support group meeting with him.  And I would guess he may never forget his encounter with me that night!  But he taught us some things that have helped us so much over the course of the past 13 years!  And what we learned then, is even more beneficial in our lives today than it was 13 years ago.

Here we are, sitting in a conference room with other parents who have children with muscular dystrophy.  And maybe some adults who have muscular dystrophy as well.   We were educated about the grief cycle.  When you experience the death of a loved one, grief is inevitable.  When you experience the loss of a job, grief is inevitable.  When we go through any tragic situation, grief is inevitable.  When we can understand the stages of grief, it can aide us as we walk through those seasons.

When you experience a child with a degenerative disease or when you are dealing with a long term illness, families experience open ended grief.  Families continually find themselves in a grief cycle.  You will work through the shock and denial period.  You might have been angry and thought you were over that and then a few months later you find yourself back at the anger stage.    When dealing with long term issues, the stages of grief never go away.  You  simply fluctuate from one stage to another.  Then a situation will happen which will trigger something inside and you go to a different stage.  For someone who likes a process and an organization chart, I found this very difficult to accept!  Once I go through this chart, then life should be normal.  I should never go backwards for sure!!  Well, to be honest, grief doesn't work the way I want it to work.

Also, on that evening as we gleaned as much information that we could so that we could better handle the storm surge going on in our life, this counselor made a statement and what happened next I will probably never forget.  This counselor made this statement, "You can only heal what you choose to feel and reveal."  Now my little self-sufficient, prideful, have it all together self took great issues at this statement.  So...without thinking...I said to this well trained counselor...that is totally wrong!  First, I can't walk around crying all the time because my life is moving forward.  So I can't be feeling because when I feel I can't function.  And... I don't know even know where you get that crazy idea about revealing.  No one wants for me to tell them what is going on in our lives.  My goodness, we tell them about doctors appointments and test results but if we were to reveal what was going on in our minds and our emotions...well our friends do NOT want to listen to that!  This counselor walked right over to me and very calmly and plainly said, you can choose whether you want to believe this statement or not.  That choice is up to you. But I can most certainly assure you this statement is true. He went on to say that if we didn't have friends that wanted to listen and give us care, that He would listen and comfort.  Or he could find people that would listen.  But as long as we kept our thoughts and emotions pent up inside of us and never allowed others to speak love and care into our lives, we would never move forward from where we were.  This statement I've chewed on for 13 years!  And I have learned through the years, this man was a smart man!  I simply did not like what he said.

You see, to feel is sometimes difficult.  I would much rather put my mask on and the gates closed to the fortress in my heart.  That's just easier.  To feel is difficult.  It's hard.   For me it was much easier to ignore the emotions!  But months later, I found myself in the very same spot.  I hadn't moved much from that spot.  Someone could mention my situation and I would find tears well up in my eyes, my heart would feel a bit of anger, my tone of voice would either be sharp or it would simply change the subject and try to forget the emotions that just surfaced.  But this happened EVERY time someone would talk about my situation.  Talk about tiring...that's exhausting!  Not to mention frustrating because then I would get mad at myself for not being able to handle things better.  

Yep...I definitely ride the short bus sometimes.  Just wondering how long it will take me to learn that this counselor was correct.  Hate to say it...I've come a long ways in 13 years but I still have a long ways to go!  I've spent some hard counseling sessions struggling through this issue.  I've had times where I have felt and revealed and healing did come!  So I now know that statement is true.  But for some reason, it still feels much safer to keep those feelings and thoughts to yourself.  

So...God calls me often out of my comfort zone regularly.

Thankful for those who allow me to feel and reveal with no fear of being judged! Thankful for the counselor who rocked my world years ago.  Thankful for a counselor who has poured many hours into my life and my marriage.  Thankful for opportunities when I get to be God's hands and feet in other's lives.  Reminding myself that when I receive from others, then I can freely give to others!   I sure thought I was good giver before!  I can't imagine what God can do after I get through this season of life!  

Not my Plan

I know many people are waiting expectantly for this update.  I, on the other hand, don't really want to write an update.  Sort of just want to forget and move forward.  The way things turned out were definitely NOT MY PLAN!  My plan was that when we met with the doctor, we would get our marching orders.  A checklist so to speak.  We would be out of there never to return.  But that's not how it worked at all!  Instead, we have a couple of possibilities, no long term checklist, and the few marching orders we did receive was to return in three months!  Not even to mention our emotional cups have been turned over and dumped out and then crammed all back and all out of order!  We have lived 13 years knowing Chloe was a manifesting carrier of DMD.  But then when all that gets relived, and then added to, it is terrible on the emotional state.  To compound that our emotional state was not the best to begin with!

As we sat down with the doctor, he reiterated again just how Chloe's muscle biopsy showed a mosaic pattern of dystrophin.  But it also showed inflammation.  Inflammation is not common in DMD.  So there is definitely something going on that is not DMD.  This doctor hopes that by treating the inflammation, it will remove her pain and she will feel much better.   However, he was not able to give us a name for what we were dealing with at this time.  He truly feels like she has some type of inflammatory disease.  A lot of inflammatory diseases are considered auto immune disorders.  Which Zine's MS is an auto immune disorder...so if this doctor could have labeled the disease we might have had more insight.  But he was unable to label it despite his efforts.  There are a couple of opinions that he has in regards to this, which he has shared with us and I have done some research on.  I have some questions to email and ask before I can better grasp the details.  But after doing a bit of research, I'm thinking that he may be on to something!   I just want my marching orders.  I want a long term plan.  As I asked questions on Friday, he simply said, this is where we are starting mom!  This is a starting place...it's not an ending place.  He looked at Chloe and said I'm gonna do everything I can to get you to where you don't need your wheelchair...which to Chloe is a fantasy dream.  She doesn't believe that is a statement of reality at all!  But...it has been her life for as long as she can remember.

He recommends treating Chloe for an inflammatory disease.  The concern is the medicine used to treat can cause mood fluctuations and emotional imbalance.  That just happens to be what I've spent the last year working on--getting her in a better emotional place.  So the thought of messing that up scares me to no end!  The doctor shares my concern!  However, he says we'll never know until we try.  Three things could happen:  she could take the medicine and it helps her and not bother her emotional status, she could take the medicine and it do nothing, or she could take the medicine and it helps her but it messes her up emotionally.  The first is his desire.  The third option is a nightmare situation to say the least.  The second is a possibility!  So on Monday, Chloe will begin some new medicine in an effort to treat an inflammatory disease.  Another option is another type of muscular dystrophy which does cause inflammation in the muscle.  But they are both treated the same way.  So his immediate plan is to treat to see if we make a difference at all with the new medicine.

At this point, he does not recommend adjusting any of her other medicines.  He says we start slow.  We don't go change a lot of stuff at one time.  Although I agree with that statement, I still want my plan!  But God has put us in a place of no real long term plan.  We only have a plan for three months!  After that...then what??  We don't know!   Only time will tell!

Chloe is just purely sick!  She is very unsettled!  Zine and I are both very unsettled as well.  Still wading through exactly what it is that is causing our unsettled hearts!  Is it that our plan didn't come together as we expected?  Is it because God has given us an inclination so we don't get our hopes up for something grand?  is it...the questions go on.  So we are really wrestling through trying to determine the state of our hearts!

Instead of feeling hopeful that this doctor is going to fix a problem, instead it feels like an additional problem has been added.  I would love to have an excitement that "the authority" was all over this and was going to work great things in Chloe's life.  But instead, I feel frustrated my plan didn't turn out as I planned!  I'm fearful of what is to come.  I'm really hating that Chloe has to feel like she has one other something wrong with her.  I'm confused at some of the thoughts he presented to us.  I definitely should have paid better attention in biology class!!  Probably should have even taken a couple of biology classes to prepare my mind for what it has received this week!  Instead, I sat at the back of the class and gave the professor fits!!

I am reminded tonight that God's ways are not our ways neither are His thoughts my thoughts.  So...I am working on trusting that God is in control of this situation.  And I am having to trust His plan...but deep down...I just want my plan!  I want my marching orders and a long term plan.  Yep, sounds quite selfish!  But...I'm not perfect.  I am a work in progress.  So I am working on desiring God's plan instead of mine.

 

Even I'm afraid...

So...we are packed except for our computers and technology devices.  I have my room clean as you are responsible for your own room here!  There is nothing left to do but wait another hour two hours before heading out to hear the results of all these medical tests.

I know all the Christian answers!  I am constantly telling my mind truths from the Scriptures.  I don't need people to email me Scripture verses.  I don't need people to tell me God is in control.  I don't need godly advice!  Well, maybe I do need those things, but that is not what I want!!  I want two hours to roll by and let's face the reality of life.  Not waiting very gracefully at the current moment.

I sit here with tears and the sickest feeling in the pit of my stomach.   No idea what to expect to hear.  No idea what emotions we will be experiencing as we board an airplane in a few hours and head home.  No way to communicate the uncertainty and the fear that exists in my heart!  No pictures for how my daughter looks at the clock and says, "2 hours to wait," and falls back onto the bed and covers her head up.  Anxious thoughts abound in both my heart and Chloe's heart.  Sadness is overwhelming in my heart.  Listen to what my daughter says about her trip...

"In many words, I spent 6 hours in a doctor's office to be told nothing useful to me.  Here they are too smart.  I don't understand.  Other than I might have something else wrong with me.  It would be an auto immune disorder.  My diagnosis I have is correct.  I had 8 viles or more of blood drawn.  I had a cardiac MRI.  I had an IV.  I have been told to raise this leg and that arm while I push or pull on it and it makes my muscles cramp more times than I care to count.  It's absolutely freezing here.  I haven't really liked the food.  I'm ready to be home.  The doctor will either tell me I have something else we missed or he will tell me I have no clue what's wrong.  The few positives I have experienced are trampled by negatives.  I just want to be home."


But even in the midst of all this, our faith remains!  Even when we are afraid, we trust! Despite the anxious thoughts, the sadness, the overwhelmed feeling...we continue to trust in the One who holds our future.   Love how this picture puts Psalm 56:3 into a different perspective.

A Graceful Waiting...

First of all let me say to our friends in Alabama who are stuck inside with ice, Chloe and I started out the door this morning and one lady that the front desk said be careful it's freezing out there.  The other lady said, "It's not freezing, it's 18 degrees.  Tomorrow it will be -3.  That's freezing!"  I told her I thought it was exceptionally cold.  It literally hurts to breathe!!  Chloe and I often will cover our mouth up when we are waiting for the crosswalk to change.  Thank goodness, we only have to walk across the street!!

Years ago, a sweet friend gave me the book entitled A Graceful Waiting.  She actually gave it to me when I was in the middle of waiting on this test result and that result with Chloe.  Waiting is hard  If you ever find yourself in life in waiting...whether you're waiting on medical tests results as I often find myself or whether you're waiting on God to move in ways you cannot begin to fathom I highly recommend this book.   And this is exactly where I find myself today...waiting yet again!
 

A Graceful Waiting

I find myself frequently having to remind myself when there's nothing more that you can do God's deepest work has just begun.  I sit here after two long days, and remind myself of things I read in this book.  I am fully confident that God is doing a deep work in our lives!!  My job continues to be to press into Him and await the transformation that is happening!

We have had a full day yesterday and a half of day today filled with hospital and medical staff.  As I watched a couple entertain a toddler today, I was grateful that Chloe wasn't a toddler!  I've been there and done that with a toddler on more than one occasion and it is hard!  But...as I discovered today...it's still hard to leave your 14 year old child in the hands of medical professionals.  

Yesterday, we spent six hours with numerous doctors.  They each play a critical role in the care of these children.  They each look at different areas of your child's health from someone as simple as a nutritionist to someone as complex as a Director of Center of Gene Therapy.  At this point, they haven't told us anything concrete.  There were numerous assessments of muscle strength and neurological exams.  There was numerous lab work that was done.  The lab even had to call the doctor due to one lab test they weren't even sure how to draw!  And other than a CBC and one other lab, not one of the lab work requests even came close to ringing a bell.  I'm pretty sure if I even looked them up on the computer I wouldn't understand the information!!  But I haven't even tried to look them up!  Lesson learned a long time ago, it's definitely not worth the stress and trauma you put yourself through when you do look things up.  So...I just go through life with the information I need to know at the time!   That philosophy doesn't always prove beneficial but for the most part, I find it the least stressful and best way to work.

One concrete thing we did learn...Chloe is indeed a Manifesting Carrier of DMD.  Even when we came here, there was apprehension about the possibility of this doctor telling us Chloe had been diagnosed incorrectly.  However, very quickly, he put that one to rest.  He says there is no arguing the fact Chloe's diagnosis is correct.  However, he was very quick to tell us he was pretty confident that we had missed something along the way.  He pulled out her muscle biopsy and would explain things like no one had ever done before.  Sometimes I would get this glazed look in my eyes and he would say do you understand?  I would shake my head know and he would start drawing pictures.  Let me just say the pictures helped more than any word he said.  I couldn't even take notes because I couldn't even begin to write most of the words he used down.  But I would say did I understand you to say _____?  And he was very sweet to listen to my take and let me know if I had taken information in correctly or not!  So...we made a good pair!  But he would point to pictures and explain and say this is indicative of muscular dystrophy.  Then he would point to another picture and explain and say this is not indicative of muscular dystrophy--this indicates something else.

For the sake of time and my typing, I won't even begin to explain what he thinks is going on.  I will wait until we find out if his inclination is correct or not.  I will say that if his inclination is correct, this has the potential to be life changing information.

The cardiologist that saw her couldn't believe she wasn't taking any heart medicine.  Not sure exactly what raised that concern in her.  The only thing she told us yesterday was she didn't have adequate tests to let her know what she needed to know about Chloe.  So today, Chloe had a very detailed 2 hour heart test done.  That was a bit difficult from a mom's perspective to watch people I don't know in a hospital I'm not familiar with roll her away!  Just killed my mama heart to say the least!  I hope I'm as brave as Chloe one day!  But I'm pretty sure I haven't gotten that brave yet!  She just does phenomenal.  Sometimes I can look at her and know she's worried or upset because her face will get really red!!  But she never says anything but I'm okay!  

So after a stressful yesterday and a stressful morning, it was nice to have a relaxing afternoon.  We tried to get some school work done...both of us.  But folks, our brains just won't focus.  I've tried a gazillion times to write this post.  I keep getting distracted.  My brain just won't focus.  And neither will Chloe's!  So...we honestly tried to do our schoolwork...but this is what it turned out looking like...

I would love to tell you this is what our faces have looked like all week, but that would be a misconception for sure!  It has not been all smiles for sure!  There actually have been pretty few smiles yesterday and today!  So I think we needed to smile some today!!

Tomorrow at 1:00 CT, we will meet back with the doctor and get results from all of our medical testing!  So, I can definitely say apprehension abounds!  But in the same breath I remind myself God is in control of all things!  If you think of us, please say a prayer for us and for Chloe.  Chloe is definitely struggling with the idea of "something else" being wrong with her.  So just pray for us that a peace that passes all understanding will wash over us! And pray...that tonight and tomorrow...we would wait gracefully!!   Thanks for journeying with us!  

Our Arrival in Columbus

We left home about 6:15 Tuesday morning.  Drove to Nashville to catch a plane.  Getting through security was a bit stressful with a wheelchair and Chloe's a pap machine gave us issues as well.  Very nice lady gave me some pointers for return flight in effort to keep bag from being pulled and gone through.  Finally through security things settled down.  Still unsure about having Chloe's power chair, we check in at gate.  Pretty soon a young lady rolled over in her power chair and we began to talk.  We soon discovered she liked to travel and knew the system well.  So we told Emily God must have sent her to us.  Emily grew up going to Nationwide Children's Hospital.  She was sure a help in airport!!  Thank you Emily for sharing part of your story with us and giving us such great assurance and insight!!

Guess what picked us up?  Not our blue bus...but a yellow bus!!  Check it out!  We were excited when we saw that this was the vehicle!!

Our taxi driver was even nice enough to stop at Wendy's for some much needed lunch!!

Check in here at the lovely Ronald McDonald House went very smoothly.  Really, even with all my complaining, this was exactly where God wanted us to stay.  It is definitely relieving stress off of me!  We have had much fun exploring this wonderful place!   It is truly an amazing place!

Some girls just have to enjoy a game of hockey!  There was a huge long hallway with hockey goals at both ends.  Under the stair "storage" has been turned into a large play area under each set of stairs.  There was a hockey table made into a plinko type board with a goal at the bottom.  That was fun!  There are tunnels to climb through at different levels.  It was just a beautiful piece of art as well.

Chloe's favorite place was the library.  They have a room with lots of books and lots of cozy seating places.  Chloe loved the big bears.  Maybe we will have some time to just rest in this room sometime this week.

There was also a music room.  It had a trumpet, a piano, an organ, boxes upon boxes of kids musical instruments, a large piano that you stepped on the keys and it made sounds.  You are free to play in any of the rooms.

There was a room that was decorated with red boots!  Quite cute it was.  There was a room decorated like a princess as well.  It had dolls and lots of fun stuff for girls.  There is a manicure room with lots of fingernail polish.  There is also a place to get your hair cut.  Free haircuts today for anyone who wants them.  And I've not even told you about all the rooms. This place is full of things to make your stay here much better!

The staff is mostly volunteers!  There are groups that come in and cook each day.  Dinner is guaranteed.  Breakfast and lunch happens but not necessarily everyday.  God does know what we need and He has a way of making things happen even if we try to rebel!!  Each room here is "sponsored" by someone or some group.  Some rooms just have the name but other rooms they have a quote.  So each door has a sign with who sponsors the room.  This sign on one of the doors I just fell in love with!

I have always loved rainbows.  Now I like them even more!

We were so blessed on Tuesday night by a visit from a therapy dog named Cleo!  Chloe needs a therapy dog!!  That has definitely been decided.  And it needs to be hypoallergenic so it can get in her bed!

Believe it or not, a friend from Huntsville, is from Columbus.  And her sister own this therapy dog.  So she came for a visit with Cleo.  She also brought us some "ohio buckeyes" that look delicious!!  Peanut butter with chocolate around it!   Ummmm!!!  When my kids are grown, I want to have a therapy dog.  My favorite thing this dog does is goes to Kindergarten classes and the struggling readers get to read out loud to Cleo.  I just LOVE that idea.  Cleo also visits regularly at a Physical Therapy with senior adults.  The senior adults get some PT and exercise by playing games and things with Cleo.  An amazing opportunity to be able to do these things.  I think I would really like doing this!  I have definitely filed this idea in my folder for down the road.  We were so glad to get a visit from Cleo!!  And Cleo's owner Tracy!

So...enough for now.  I'm actually finishing this post while we sit in the doctor's office on Wednesday!  But didn't want to get to far behind in getting you up to date on our trip so far.

Right now our room is a revolving door of numerous doctors, therapists, nutritionist, etc.  So I will definitely post an update in regards to medical stuff later.

Our next medical adventure...

So far, this blog has centered around our journey with MS.  We have another journey that we've lived with for 13 years and that's our journey in the world of Muscular Dystrophy.  In many ways, our journey with MD, has helped prepare us for our journey with MS.  Although they are two totally different diseases, in some ways, they look similar.  So I'm very thankful that doctors, specialists, wheelchairs, handicap accessibility knowledge, etc. were things we had already learned!  To be where we are today, with no prior knowledge would make this season a hundred times worse if we were having to educate ourselves at the same time!  I can't even imagine!

Our now 14 year old daughter was born totally healthy!  Or at least we thought!  But then as her friends began to develop in their motor skills, we began to see a difference in Chloe's abilities.  As I was gathering records just two weeks ago for an upcoming appt I was reminded in great detail of her accomplishments or lack of accomplishments as an infant.  Some of those that stuck out to me is Chloe didn't roll over until she was 8 months old. Many of her friends were crawling and she was just learning to roll over.  Chloe made no babbling sounds until she was a little over 10 months old.  But trust me, she caught up!  She has no problem saying words now!   She definitely wasn't walking when she turned a year old.  No where even close to walking!  She was just learning to sit up without falling over!  At 15 months old, she still wasn't eating food!  Her main source of nutrition was still from a bottle! So needless to say our early days with Chloe were full of physical, occupational and speech therapy.

At 15 months old, she was sent to Atlanta, GA where she saw a specialist in Mitochondrial Disorders.  As a result of that doctors appt, followed by a muscle biopsy, we eventually received her diagnosis of being a Manifesting Carrier of Duchenne Muscular Dystrophy.  That, in itself, is a very rare diagnosis.  DMD is a boy's disease as it is an X-linked disease.  A female has two X's so if one X is flawed, typically the good X will be the working X!    However, research has now proven that it does indeed affect girls.

Being a Manifesting Carrier, no one has ever had any insight into what Chloe's progression would look like.  Today she struggles immensely with muscle spasms!  She takes a muscle relaxant to help loosen her muscles and help with the pain.  If I took as much as she takes, I would not emerge from the bed for a week or more just with one dose!  But...it keeps her going!  She still walks short distances.  She has issues with picking up heavy items such as a gallon jug.  Pouring from a full gallon is very difficult and at times impossible.  She struggles with muscle fatigue so things like washing her hair is very difficult for her where she has to hold her arms up for awhile so I wash her hair.  We have figured a way she can now dry her own hair! Which gives her some independence.  Then I typically come back and straighten her hair.  She tires exceptionally easy so therefore uses a wheelchair to aide in the fatigue level.  She has muscle pain all the time.  Some days, the pain is so bad, she struggles to move around.  Other days, she puts her determined spirit into action and does whatever it is she desires to do.  And anyone that knows her can say, she's not only determined she has a fighting spirit!  We love that about her...most days!!

Two years ago, she was diagnosed with a movement disorder.  To our knowledge, a movement disorder and muscular dystrophy are not connected.  A year ago, she was also treated for the second time for depression.  The past year and half has been a battle to get her medicines regulated and able to get her on a more stable ground emotionally.  But we have definitely made progress!

Today, we are preparing to travel to Nationwide Children's Hospital in Columbus, Ohio.  There she will see a specialist in Duchenne Muscular Dystrophy.  He is quite the famous doctor to say the least.  I read about him all the time in the MDA's Quest Magazine.  We fly on Tuesday morning into Columbus, OH.  The goal of this trip is to see if there are new things out there that we should try, to see if he can give any prognosis for how this disease will progress, and to obtain some guidance on the drugs she is now taking and what we need to do in the future.  Our next medical adventure awaits us there...

I have said before, music speaks to my heart all the time!! I have a friend who sends me songs to listen to as she knows it's a way to my heart!  She sent me this song and it has captivated my heart right now.  And it is so true for where I am.  I must learn to stop holding on and just be held!  Just wanted to share!

Just Be Held by Casting Crowns