So confused, but trusting

Well - we had cleft clinic today. This is the time all of Chris' doctors are all under one roof. It is the hub of all cleft teams - they all have a set aside time for their patients to be seen by every professional responsible for their care in quick succession . Short visits, notes are exchanged. No appointment - line at each door. We've been doing this since Chris was an infant. Nothing new. But - a word of advice, it's a challenge to see a doctor after you have transferred away from their practice. Not fun. But necessary. Especially when they are still a part of the patient's care.

We've apparently set off a firestorm with Chris' care. Not a one of Chris' doctors is excited about giving up their part of his care. This is both flattering and frustrating. Apparently the doctor's office in Lancaster didn't represent the Oral Surgeon properly. Neither the oral surgeon, nor Chris' plastic surgeon are excited about any transfer of care at this stage. The surgeon reiterated again that he absolutely will take our insurance - and if not will absorb costs. We only have to worry about the hospital - and he will do everything in his power to make sure everything is completely covered. Anything. He was quite annoyed with his office staff and explained that he would have to have a little talk with his receptionist. Didn't mean to do that. Didn't even know that's what we were doing (causing trouble over the insurance).

I met with Chris' plastic surgeon after the oral surgeon and ortho, and he reiterated that he would prefer his original oral surgeon as well. So now we have had two consultations with two other oral surgeons that have to be "undone"?? Not sure how to do that...

Woke up this morning with the song from Laura story "Faithful God". Particularly the chorus. It says:

"Faithful God - every promise kept. Every need you've met - faithful God. All I am and all I'll ever be is all because you love faithfully - faithful God!"

The line that stuck out at me this morning was that line "Every promise KEPT. EVERY need you've met."

Wondered when I got up why it was on my heart. I think I needed a pre-med. A reminder before I went into the clinic today. I am grateful for that thought being up front in my mind before facing the day. At the same time we got home and all I wanted to do was to sit down and cry - both out of frustration and out of confusion. Really don't know where to go from here. Just feeling very overwhelmed with all of this. Putting Chris through this procedure at all is painful for me. The negotiations, the constantly changing courses is really starting to get to me in all kinds of ways. So - I am trusting in our faithful God, and yet feeling very weak and confused. I know He has it and eventually I will look back on this and see how much of His hand has been on this. It's just that, for right now, it is hard to go day by day.

On a happier note - here is a recent picture of all my crazy kids!! We had some peanuts we had to roast ourselves (did you know you have to do that sometimes? I didn't - see I'm learning stuff!), then we made it into peanut butter. Yup - the peanut butter comes out a hole in the elephants arm.... is that bad??

A Great Message!!

Nancy Guthrie: "Pain that Can’t be Prayed Away" (Audio)

Nancy Guthrie:

My Needed Reminder... because I am still too thick headed to learn yet!!

This passage has a tremendous amount of significance for me. It is a struggle for me to keep my focus - and I find myself repeating Peter almost word for word sometimes....  Here is the passage in the ESV.

John 21:15-22

When they had finished breakfast, Jesus said to Simon Peter, "Simon, son of John, do you love me more than these?"

He said to him, "Yes, Lord; you know that I love you."

He said to him, "Feed my lambs."

He said to him a second time, "Simon, son of John, do you love me?"

He said to him, "Yes, Lord; you know that I love you."

He said to him, "Tend my sheep."

He said to him the third time, "Simon, son of John, do you love me?"

Peter was grieved because he said to him the third time, "Do you love me?" and he said to him, "Lord, you know everything; you know that I love you."

Jesus said to him, "Feed my sheep.  Truly, truly, I say to you, when you were young, you used to dress yourself and walk wherever you wanted, but when you are old, you will stretch out your hands, and another will dress you and carry you where you do not want to go." (This he said to show by what kind of death he was to glorify God.) And after saying this he said to him, "Follow me."

Peter turned and saw the disciple whom Jesus loved following them, the one who also had leaned back against him during the supper and had said, "Lord, who is it that is going to betray you?"  When Peter saw him, he said to Jesus, "Lord, what about this man?"

Jesus said to him, " If it is my will that he remain until I come, what is that to you? You follow me!"

Let me start out by saying this isn't a theological treatise.  In fact some of what I say may not be exactly right on...  The thoughts you are about to read are me personally having this passage take a dig into my heart and mind attitude. 

 Jesus is risen and the relationship between Jesus and Peter has been restored.  Peter had denied Jesus three times.  In a row.  Three times.  He had even been warned ahead of time that it was going to happen.  And when. He even swore that he would never do it.  So, you can imagine, from a human standpoint what it may have been like for Peter when he saw Christ again, after the resurrection, for the first time. This was the third time for the disciples however.  Here is the scene.  Jesus calls to the fisherman from the shore as they are coming back from fishing.  It was the morning after a long night with no success.  He tells them to cast their net on the other side.  This is unusual for two reasons. It's morning, and Jesus is instructing professional fisherman.  But at the same time - this is also not the first time this has happened, and John - the disciple Jesus loved - recognizes the situation and his beloved Lord first.  John seems to have a knack for that kind of thing.  Peter however, being the man of action that he is, puts on his garments and jumps overboard (not the first time Peter has done this either).  They get to shore and a breakfast of fish and bread is waiting for them.  Already ready.  After they had eaten, this dialog between Jesus and Peter is recorded.

There is a lot in this passage.  For instance, Jesus asks Peter three times.  Three.  In a row.  He asks if he loves him.  Peter (I imagine very eager to right himself - just my feeling) answers three times.  But after each answer Jesus calls him to respond with an action - specifically to feed and tend His sheep. The third time Peter slightly changes his answer by acknowledging that the Lord knows all things - He knows Peter loves him.  Jesus answer is stunning.  He explains to Peter that tending and feeding his sheep will come at a great cost to Peter.  His freedom.  He is prophesying Peter's death by crucifixion - a death John describes as the kind of death though which he would glorify God.  And immediately after giving Peter this glimpse of cost he says "Follow me."

Peter is really captivated by Christ during this conversation - his focus is on the Lord and on Him only. But then he does something interesting.  He turns his gaze and allows it to rest on John.  And he just can't help himself.  He has to know.  Um... what about him? And Christ arrests his gaze again as he reminds Peter - John's future is His business.  Not Peters.  Peter is to focus only on one thing. 

YOU FOLLOW ME. 

I can totally relate to Peter.  If I am focused on Jesus - I am captivated.  He leads me to follow Him.  As each opportunity to follow Him in one way or another comes into focus, it brings a similar response - "Lord - you know all things. You know I love you!" These are some intoxicating mountaintop experiences.  I wish SO much that this was my normal.  It isn't.  The fact that is ever happens at all is the grace of God - and it is a grace I am thankful for - and also leads to some pretty heady promises - again, like Peter - "I will never deny you. Not me. Never."

But my more natural tendency is to look to my left and right.  To look at those around me, focus on what they are or are not doing, or what blessings they are receiving, and say "What about this one? What are you going to do through them / or for them / or in them? Will they have the same cost as I do? Or will they have it easier / harder?" 

Kindly His answer is the same to me. "YOU FOLLOW ME." 

And that's hard.  I want the same treatment.  The same promises.  The same challenges.  I mean, if there is going to be suffering or challenge it's only fair if we are all in it, right?  That's "just".  Peter wanted to know if John would have the same experience.  The same challenges.  The same cost.  The answer wasn't given to Peter as to what John would experience.  It had to be enough for Peter to refocus on the following instead of the balancing of the scale. 

We know that John was the only disciple that was not martyred.  It's not that he didn't have a cost to follow Christ.  He was exiled.  He suffered much.  But the truth is, we are all called to follow Christ differently.  It is helpful for me to remember that the call is to follow.  And there will be a cost.  But how that works itself out in others around me is going to look different than it looks for me.  I need to focus more on challenging and encouraging those around me to follow Christ.  Not what I think Christ calls believers to do.  I understand there are the obvious ones.  I am not promoting a "Just do whatever feels like a call to you." - not at all.  But what I am saying is that when I look around at others and answer Christ's call with, but why them?  Or why not them?  Or any other comparison I want to make, the answer remains.  He calls me to follow HIM.  Only him.  Spend my energy on the pursuit of Christ and what he is calling me to - and trust him for the results.  Don't lose focus by looking to the left or right.  Focus on one thing.  Him.  Hoping to be a faster learner!!

Sick...

Yup - 3 down - one to go.... Stephen started us out, Chris was right behind him, Katie went down today. Michael says he is not so good either. So - we've been staying close to home and enjoying a bit of a reduced schedule. Looks like we'll be staying home this weekend as well (except for Mike - he has class). That's OK. I need some slower times to process things, and I'm not so sure I am 100% healthy myself, so that plays into it as well.

Croupy cough, fever, a little bit of vomiting, and sore throat. All resting a little...

Giddy...

Off the beaten path post running in my head all weekend. Here we go!!

Remember these?? Not a lot of them left really (them being an insurance issue and all...). My kids live for the one at camp every year, and if it weren't for that one, I'm not sure they would know what this is (and by the way that one is SO small!!). Having just run a web search, finding a merry go round that even barely resembled the one I rode on as a kid..... what fun!! It was huge!!  And you could ride in or out! And that wood was virtually indestructible. You could jump on and off and it barely shook - and the metal  could really take a beating - none of this molded plastic stuff - no siree - we got SPLINTERS!!  But I am now officially off topic on my off topic...

Remember being a kid and approaching the merry go round..... the risks? The attraction? The spinning until you can't even walk straight and OK, maybe every once in a while feeling really, really sick? And waiting until the ground was just firm enough to walk you right on back over there and jump on again? And yes - getting back on even after you have been spun off or maybe even dragged along? Just have to get your wind back into you and back on you go!! Um why? Why in the world did we do that to ourselves (notice I just made that all of us, not just me...  : P )? 

Have to say the last few days have been much like that ride on the merry go round. I recently answered a friend who asked how I was doing with these words:

"I am spinning. It is a giddy kind of spinning at this point, but spinning none the less!  You know - like when a kid is on a merry go round too long? Really excited and giddy, but possibly vomiting at the same time??  : ) Good stuff."

I'm not even sure what  mean. I can point to certain things that occurred over the weekend that sent the world spinning - for good and bad. We had a wonderful time with a dear family that not only watched our kids, but "put us up" - AGAIN last minute on Friday night. I became aware of something over the weekend that broke my heart. I was able to spend time with a wonderful group of ladies Sat. morning that grow me in ways I never anticipate. Sunday was our church service - another oasis in this busy life. Sunday night we were finally able to get another precious family all to ourselves that we had been trying to connect with for awhile. The weekend definitely had it's hiccups, but o-so-many blessings as well. That can send me spinning and giddy right there.

 But I  have to be honest. I don't think that is it. There's also something going on in my heart. There is an anticipation stirring there that I haven't felt in a very long time. Just this feeling that something is just over the horizon. Something that is going to change us, change our life that is just starting to fall back into a routine. And I have no idea what it is. Just spinning and giddy and jumping on the merry go round ready to spin again. And, being the control freak that I am (there, I said it...), there is also that slightly sick feeling as I anticipate that routine that feels like it is finally settling in won't be a comforting rut much longer. It feels like the current is picking up, and it's time to cling - because we all know when the current picks up it's both a scary and exhilarating ride! I wish I had more detail. Then again, maybe I don't. Because I know His power is made perfect in weakness - and the clinging - that's just where He wants me.

Morning by morning new mercies I see...

Well - we're all set. Christopher has an appointment at CHOP on Oct. 31st in the afternoon. All doctors have been contacted that his care is being transferred, and I am in the process getting a hold of all his medical records. The decision behind us, I am actually looking forward to meeting with the "new" team.

Mike went to see his surgeon - and it looks like he will not, in fact, have to have surgery. This is another huge answer to prayer! He will have a CAT scan, just to be sure, on October 31st... Hey - if he had to take off for CHOP anyway, may as well get everything done, right?

So - what seemed like such a huge set of challenges all at once - slowly behind us step by step. GREAT is His faithfulness!!

A copy of an email I recently sent out...

Hi Care Group(s) and dear friends and family!!

Wanted to ask for prayer for our family again....  

Over the last week we have had several things happen - both blessing and challenge. On the blessing side, Mike applied for and was hired for the position "next in line" after his. This position comes with a raise, and an opportunity to deal with some products and services he hasn't been able to do yet. It also comes with some changes in the way things are done. He will have training for 2 week in November for this position, and is both excited and nervous about what that may mean. His schedule shouldn't change as far as we know at this point. Also, on Monday, Michael Ben was checked out by his allergist (whom he hasn't seen in a really long time because of insurance over the last few years). After doing the testing, he seems to feel that Michael is outgrowing his asthma, and we are beginning the process of weaning him off of his steroids for the first time in 9 years... That was unexpected and such a great thing to hear. Chris was also able to visit with his ENT for the first time in 4 years to have his hearing "officially checked". We had some concerns, but according to the ENT, the boy could hear a pin drop. Again - so wonderful to hear!

After our Allergy appointment yesterday (yes - I'm going to start calling them medical Mondays....), we went over to Chris orthodontist hoping again for a surgery date. She checked him and made arrangements to have his spacer removed at our next appointment. I asked if that was a good idea - I thought he needed it to support the jaw repair as it strengthened. She said, "Well, since he already had the surgery, he should be fine at this point." 

I just sat there and stared at that point. When I recollected my wits and nerves, I reminded her that, NO, he hasn't had the surgery. We go to cleft clinic now on November 17th where she and the surgeon will again be in the same room. I was warned about the challenge of using a "newer" team here in the Valley when Chris was born. That communication would be a challenge and that it would be my job to keep it moving. I guess I didn't really take it that seriously. Anyway - I called the surgeon's office  and they told me again that they don't take our "new" insurance either. The surgeon is going to be in the office today, so I am hoping that I will have some kind of a plan by the end of the day. Then we have to attempt a pre-certification to have Chris procedure covered. Our insurance has pretty much already said they will deny coverage. Please pray that they would allow us to use the doctor on our team, and that the communication might finally be resolved between the Ortho and the surgeon. Chris is scheduled to have his spacer removed on November 20th - even though I told her he hadn't had the surgery. I need a lot of wisdom here as I try to "play" doctor.

Mike had an appointment next yesterday afternoon. He has been having some pains for about 4-5 months at this point at a site of a previous surgery (like 17 years previous). We were hoping for a "Get over it you big baby!" response. Instead he has an appointment with the head of surgery at St Luke's Allentown on Monday. The receptionist assured me it was probably minor, but when I told her what was going on, she (kindly - if you can imagine) laughed at me and told me that more than likely, we were looking at surgery - just a question of whether it is an emergency or not. The last time he had this surgery it was a nightmare. He really didn't do well. I am kind of walking around here today like I got hit with a brick. Oscillating between telling myself that we are really doing well, we really are, and wondering when this kind of stuff every ends. I am sick of doctor's and dentist's offices - feels like we live there. We are at one appointment or another (sometimes multiple ones) every single monday. I'm tired. Then I feel guilty for not trusting and being grateful that we can go to the doctor and that the things we are dealing with, when compared to others are majorly minor... Don't know if that makes sense. If you read all the way to this point.... thank you! And thank you for praying for us!

A prayer of my heart today....





As an update - no one got back to me yesterday. At this point we are considering moving Chris' care to CHOP as we had a good experience there with Katie. Much fear with this as we are truly mid-stream in treatment and that may be complicated. And I feel bad about leaving his doctors. Much to work through...

Some desires are good, but not what is best for us (even if it is a yearning for a "boring" season!). As we walk through this time, I am reminded that I need Him to capture my heart with HIM. That will give me true rest...