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.



Wife of 20+ years. Mom to 3 children. Love sharing my life with weary hearts so that we can know the One who is Good, who is in Control, and Whose strength is made perfect in our weaknesses.

This Post Has 2 Comments

  1. Renee

    Praying the new meds do what the doctor wants them to do with no negative side effects.

  2. Terry DeBrow

    Faith is most difficult when it involves your children's health in any way. It's difficult when it's family, but it's really difficult when it's your child. We are praying for the best outcome for Chloe, for the best outcome for Zine, for each day to bring renewed strength and faith in the Lord. We are asking the Lord to rain his blessing and grace on your entire family. Love and hugs, Terry and Sam

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