Perfection?

I was not planning on another update so quickly but this remains the easiest way to tell those connected to us the latest news.

Carter, once again, has conjunctivitis – a word I no longer need help from spell check on. We felt it was possible and we were not entirely surprised when Donnie confirmed so today. With that news he decided we would try something new.  After we get Carter’s eye cleared up, and after Spring Break, we will try a unique approach to fitting his prosthetic a little better.  Donnie wants to place some molding element on the back of the current prosthesis and then put it back into place.  He thinks that will help make a mini impression that he will use to expand/alter the current eye.  This will help fit the lens better without having to sedate Carter and make a full orbital impression.

Just to remind you, the infections seem to be due to the prosthesis not fully fitting and allowing bacteria to get behind it and trapped back there.  Ultimately the best thing is to do a full impression and build a new eye. Donnie hopes this will buy us some more time.  I don’t know if he just wants to wait as long as possible to make a new eye or if this is just a temporary solution.  Maybe the warranty has already run out and he is simply trying to save us some money – I kid… kind of.   Amy and I agree that we trust Donnie and that he has Carter’s and our best interest at heart.

Until then, Amy and Carter have made yet another trip to the eye doctor to get drops to put in his eyes allowing the infection to be treated.  After 48 hours of the drops we have been instructed to take the eye out each night and replace it in the morning. Of course this is a lot less scary now that we made it through the process just a few nights ago.

When Amy called me this afternoon, to give me the report, I was listening to I am Not The Same by Unhindered.  Some of the lyrics say:

I bow before your cross this broken life made new 
So amazed at all you are, Lord 

And who I am in you 
Adopted, healed, and lifted 
Forgiven, found, and rescued

I am not the same I’m a new creation 
I am not the same anymore 
I am not ashamed, I will not be shaken 
I am not the same anymore, anymore

Carter and I were talking last night about how one day he won’t have to worry about his eye anymore.  We pray for the moment that Carter comes to a saving knowledge of Christ and then we will rejoice that he will be adopted, healed and lifted; forgiven, found, and rescued.  Then he will truly know perfection.

(*just a reminder that this is all about the prothesis and the implant is doing fine and unharmed.)

Not on the Bucket List

Exactly one month ago I mentioned in a post about Carter’s infections, that for the first time we had to remove Carter’s eye and clean it. We were in the middle of a rough patch of infections and Donnie, our Ocularists, said we needed to pull it out and clean it.

And now would be the time I confess that the eye never was touched. We didn’t remove it and we didn’t clean it. Yeah, that’s right, I chickened out. I didn’t see anyone else offering to come over and play with my kid’s eye. FaceBook and Twitter must have shut down because we were not inundated with friend’s wanting to help out in our medical need. Seriously though, we were blessed with kind words and plenty of people saying they would be praying for the situation and events that were about to occur.

That night in question, I told Carter that we really needed to pull his eye out and clean it but as soon as I said it he lost it. The look on his face and the alligator tears started to flow and I began back pedaling. I asked Amy if it was absolutely necessary to don the scrubs and put all of my medical knowledge to test in this arena. As soon as she muttered, “I guess we don’t…” I pulled the plug on the operation. I didn’t even let her finish the sentence. I just needed an out. The next day Carter was scheduled to see Donnie so before you go thinking I put my son’s health/life in jeopardy, we knew things would be better in the morning.

Fast forward to this past Saturday night. Carter was complaining a little bit about his eye not feeling right and when he got out of the shower he said, “my eye is looking left.” Sure enough it was easy to tell that his prosthesis was not moving like normal. In all of our medical expertise, which continues to grow with this situation, we determined the eye had shifted and was “stuck” in place. I had Carter close his eye and I proceeded to try and push the lens to the center but to no avail. Carter was getting squeamish and complaining that I was hurting him. Trying to get a better look, I pulled open his upper and lower eyelids and immediately noticed his prosthesis had rotated and was now sideways. I realize that sounds strange but if you recall our original post about the making of his eye, it is not a perfect circle and Donnie had painted a smily face on the eye to signify the top, which clearly needed to be up.

The Eye

Smily face = This side up

There was no doubt that this could not wait for Donnie to fix and Amy and I agreed that I would take it out. As he did a month ago, Carter freaked out and quickly began crying and saying he didn’t want to do it. He easily admitted he preferred Donnie do it instead of dear old dad. I COMPLETELY concur! Once I convinced him that we had to fix his eye, we proceeded with caution.

I feel like if you’ve read this far you might as well stick around for the details. I took Carter into the bathroom and picked up the little suction cup we received in our goodie bag the day we got his new eye. I squeezed the suction cup and, while holding his eye open, I pushed it up to his eye. It took three or four tries before I finally got it to stick. With a simple rocking motion I pulled up on the bottom and the eye just slid right out. Carter calmed down until he looked in the mirror and saw the cavity that was left behind. It’s interesting how it was just months ago we walked through the surgery and process yet he had quickly forgot what that looked like. I think he was partially intrigued by what he saw but mostly fearful of seeing himself “eyeless” for the first time in months. I held him for a few minutes and we talked about how everything is fine and that one day he will look back and better understand why all this happened. We didn’t take the time to get into all the theology.

Amy (for some reason this was one part I just couldn’t do) flushed out his eye socket with a special solution, also from the goodie bag and I cleaned the prosthetic and lubricated it. It was time to put it back in which was the part I feared the most. Once again, using the suction cup, I held Carter’s eye lids and tried to replace the eye. As I was moving towards him my right hand was visibly shaking uncontrollably. I was trying to use my left arm to cover his right eye so he wouldn’t see me struggling so much. The first attempt was an epic failure as I was pushing both his eye lids in and his eye lashes were getting stuck on his implant. Yeah, you read that correctly.

I don’t know if it was the obvious look of fear on my face or if I verbally asked her, but Amy stepped up behind Carter and pulled his upper eyelid real high. This gave me a huge opening to put the eye back in. Opposite of the extraction, the top part goes in first and then I used my left thumb to wipe the lower eyelid and allow it to pop out and cover the prosthesis.

And just like that it was over. Amy and I tag teamed it and it worked. We conquered it. Now if you’ll excuse me I need some more Advil. It seems I hit my head when I passed out half way through the ordeal. Just kidding – I think. Many of you saw the Tweet/FaceBook post and asked what had happened. Now you know and more importantly you know not to ask next time.

I don’t officially have a bucket list but there are things I would like to do over the years to come. This was not something originally on the list but you can bet I’m checking it off.

Inflammation of the conjunctiva

Now I know why they call it pink eye. I don’t think it has anything to do with the actual color of the eye.  I think it is simply a cop out from having to say a word that, in itself, just sounds dirty.  We do not have much of a history of pink eye at our house but I am quickly learning more and more about this conjunctivitis.

It’s been two months, to date, since we first walked into the Ocularist’s office and walked out with a brand new eye.  It’s also been two months since I’ve given any updates on Carter’s eye but praise God there have been no news because there has simply been, nothing to update.  However, these past few weeks have brought forth a situation that I felt was worthy of sharing and asking some prayer for.

Carter has now had his third bout of pink eye since Christmas.  The first one happened over the holidays when we were spending time out in Ruidoso. We were warned that well water would cause problems and sure enough it did.  Wasn’t a big deal and we worked through it.  Unfortunately he has had two more infections over the past two weeks and these are completely unrelated to well water.  Mr. Donnie Franklin, you might know his as the one who walked away from dental school, said Carter’s tears were getting trapped behind his prosthesis. Some of you, like me, may be amazed that he can continue to cry even after the eye removal and implant surgery. Others, may be surprised to think that this even matters.

It seems his trapped tears are preventing the proper flushing out of the bacteria in his eye, thus causing the infection.  Donnie removed Carter’s prosthetic a couple weeks ago and drilled some holes in it to help drain the tears.  Obviously this didn’t completely solve the problem and will require some adjusting when we go see him again tomorrow.  Good news: Carter’s eye does not hurt at all during these conjunctival issues. It looks gross and needs continual wiping and attention but at least he isn’t in pain and it doesn’t affect his daily routine.  Bad news: the time has come, the time we had hoped would never truly arrive, although we figured it was inevitable.  Tonight, we have been asked (and by we I mean me) to remove Carter’s prosthesis before we put eye drops in.  Then in the morning we (and by we I still mean me) are supposed to put it back in before he heads out to school.

Now we have watched Donnie do this process many times over.  We have been back to Donnie’s office on a couple occasions to have him remove, clean, and replace the eye.  We have not done this on our own yet. I can’t say this was on the top of my to do list for the week but when it comes to your children, you do what you have to.

So I ask that you might pray for Carter’s situation.  Pray that we could figure out how to prevent the frequent infections.  Every time this happens it means he misses school and multiple trips to multiple doctors.  You can pray that he continues to do well in school. We were so proud of him for making straight A’s last semester, a semester that had a ton of days missed with all the appointments, surgery, etc. You could pray that when, not if but when, I pass out tonight and/or tomorrow morning, I land softly. And you can pray for Amy. This takes quite the toll on her and she is really the one managing Carter’s appointments, driving to and from, and not missing a beat of her routine.

We are continually blessed by your kind words and encouragement.  Every Sunday someone stops Amy or I in the hallways asking about Carter and reminds us they are praying. Many of you have encouraged Christopher after his baptism and spoken highly of him being such a good big brother.  Thank you!

I updated the map as we have learned of people from several more parts of the world praying for us.  The community we have in Christ is simply amazing.  Praise God.  Here’s to more uneventful months, infrequent updates, and less reasons to speak or write about  the conjunctiva.

Disconnected

From CJ:

This past Christmas break I allowed myself to do something I have never recall doing before.  I went on vacation.  Of course we have had family vacations over the years but none like this one.  For maybe the first time, that I can remember, I left work behind and spent a week with the family without the occasion mind drifts back to church/ministry life.  And in the end, I lived to tell about it.

After the crazy Fall that our family endured and with Carter’s eye situation finally seeming to be sort of normal, I looked forward to getting away for a little vacation.  I doubt it was a coincidence that this year’s Christmas festivities were already set to take place in the mountains of New Mexico.  Now when the in-laws first bought the place I was informed there would be no WiFi.  Whether that be due to the inability to access it or the parentals simply wanting to stay disconnected, it was a decision that I was going to have to deal with and a decision that was clearly going to alter my ability to stay in touch with the real world. Thanks to cellular service the occasional Tweet, text message or phone call to family in Houston was possible but less frequent.

So what does a city boy with technological dependencies do in the mountains? Every day started off with a great cup of Columbian coffee, thanks to my Compassion International trip last November with Jason Paredes, and a view that screamed of the greatness of God.

IMG_0948And each night ended with a designed playlist of worship songs streaming from my iPod and laying in the darkness of a world a lot less polluted without all the city lights.  The many moments in between were filled with casual conversations with Amy and her family as well as moments of watching the boys play with their cousins.  And then there were the random times I found myself looking out the window staring at the view and having scripture flood my mind.  Some were versus I learned through the growing up days in Southern Baptist world and weekly Bible drill practices.  Some were passages sent by friends over the recent months to encourage us in light of our situation.  All of them pointing me to the very reasons we have them; to glorify the One who inspired them.

I think it is safe to say that over the course of the past months, I have found myself drawn closer to God.  There is no doubt my prayer life was much more active with each and every step of Carter’s journey.  With that said, I look back and remember so many prayers asking God to help us understand what He was doing.  I remember the many prayers for healing in Carter’s life.  I recall those moments humbly asking Him to bring glory to Himself even if we did not understand what all was going on.  But during this sabbatical in the mountains, I found my prayers turning less from a cry of help in a desolate time to more of a genuine adoration for who God simply is.  Worship songs that meant one thing through internal perspective a couple months ago seemed completely different when the lyrics pushed forth a more external adoration towards God.

I’m not sure how to translate the thoughts into words but what started months ago as a “God help us” eventually morphed into a “thank you God” but even then was focused on us and our voyage.  But this week was different. As I spent the week in the mountains it never seemed like it was about our situation.  It truly played out as a week of admonishing God, not for what He had done for us, but clearly for who He is.  I would find myself tearing up just thinking about God giving up His only son.  I remember those nights full of fear thinking that Carter could have cancer in his eye and how threatening that was.  Just the thought made me physically hurt.  And yet God was not dealt a situation where His son developed some illness.  No, He chose to send His one and only son because of our illness.  Who does such a thing?  Who is so selfless?  So I cried, I prayed, I sang songs of adoration, and I thanked Him; but not because of Carter, but because of Christ.

As we drove off that mountain and headed back to the real world, I distinctly remember hoping that this be a year where God doesn’t need to use some life altering situation to get my attention and remind me where my focus should be.  I may not be able to turn off all the city lights but maybe being disconnected isn’t always such a bad thing.

 

Life happens. I Promise.

I think we all have times when we can recall a moment we made a promise with every intent of keeping it. Whether we were caught up in the moment or with all sincerity and premeditation spoke words of conviction, we made a heart felt promise to someone. When I think of promises my mind often darts to Matthew 5:37 where Jesus says, “let your ‘Yes’ be ‘Yes,’ and your ‘No,’ ‘No’; anything beyond this comes from the evil one.” But the reality of life is that often we make promises that we simply fail to keep. I can think back over my life at promises I have failed to uphold and I can think of promises made towards me that have ended poorly (says something to the forgive and forget idea.) Promises are typically good at the moment and situation in which they are made. It is when life starts to happen and circumstances change our situations that we see how true a promise really is.

December 14th, 1996 I stood before the love of my life, a dear minister friend in Jerry Hendrix, and a room full of friends and family to exchange promises with Amy. Clearly in love and with the dreamy idea of a perfect life in front of us we said that no matter what; we would always love each other. And then, life happened. First there was a moldy rent house that was supposed to be considered “home,” and then several church changes which included saying good bye to old friends and hello to new cities. There were sleepless nights as our first born struggled with reflux and weeks of doctors not knowing the best way to fix it. We encountered a drawn out adoption process and 48 hours of pure torture as we waited for the birth mom to sign papers. We found ourselves in a season of limbo when I wondered if my time as a vocational minister was coming to an end. And now the most recent part of our journey – Carter’s black eye. Life happened all right. I look back over the 16 years and through all the memories, all the decisions, all the questions, all the prayers, all the cause and effects of life, and I am amazed at two things.

First and foremost, never can I recall a time where I felt outside of God’s loving care and plan for our family. Don’t get me wrong, I did not always understand His plan but I never felt removed from His grasp. The second thing that simply floors me; my wife was divinely ordained to play a large part of that God-given plan. We vowed that in sickness and in health we would do life as it happens. We agreed that for better or for worse we would always love each other. Those words sounded so good back then but have meant so much more now that they have remained true through the trials and tribulations.

Many have heard the story of Amy, I, and one other student sitting in IHOP prepping for our first psychology test of my Senior year of college. To recap for those not in the know… I was being asked theological and practical church questions from the third person at the table, seeing that I was a ministry major and on staff at a local church. That night I found myself staring at Amy as she spoke beautifully of Grace, Truth, ministry, the purpose of the church, and ultimately her passionate love for God, among many other things. I knew then that she was special. Just months later I had the courage to propose and as Paul Harvey would say, the rest is history. The point of going back to that encounter at IHOP is simple. I saw then someone who understood life is bigger than us. And today I see that same person. It has been incredible to watch Amy handle the trials we have encountered and these past few months have been no exception.

Since that gut wrenching September day when we learned about Carter’s situation, Amy has been as impressive as anything. Sure we have had our moments of breaking down in tears and it’s not like any of us never questioned exactly what was going on. Still, it was as if my wife was not going to let this define us. She refused to quit and pressed on with each day as there were more meals to be made, more loads of laundry to do, and the house was not going to clean itself. She continued to fulfill responsibilities at church helping me launch a new initiative in the student ministry and still found time to make meals for friends in need. She made sure the Operation Christmas Child boxes were complete and delivered on time. She made it possible for me to take a trip to Columbia with Compassion International, missing a full week of life at home. She did all this and so much more knowing that life happens but we still get to decide how we will react to the hand we are dealt.

In sickness and in health. For better or for worse. Promises made that have proven true over time. I remember another promise, this is one from a guy named Matthew quoting Christ who said, “Come to me all who are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you. For my yoke is easy to bear and my burden is light.” Obviously this means Jesus wants to help us in times where weariness surfaces, and that help comes in many different ways. I am grateful He placed Amy Denice Malott in my life to help me make it through the tough times where the burden seems to heavy.

Amy, thank you for 16 amazing years. Thank you for sticking to your promises even when it’s hard. It is true, “there are many virtuous and capable women in the world but you surpass them all.” You truly are more precious than rubies!

IMG_0730

Speechless – the New Norm

From CJ:

For those reading this that know me, you understand I’m not one to find myself speechless.  Most often, when I am amazed I tend to get a little overly excited, talk a mile a minute, and become more fidgety/active than a caffeinated squirrel.  And yet speechless is a term I have used many times throughout these past months to describe this journey.  Today was no different.

We returned to the Ocularists office this morning to find out he wanted a “do-over” on the eye.  He didn’t approve of his handiwork and ended up spending extra hours last night making a new eye. He sat across from Carter once again to strategically paint the perfect eye (I added some more photos to yesterdays post if interested.)  He said of all the countless eyes he has done, none have been so hard and so challenging as Carter’s.  It seems Carter has a rare color scheme in his eye, which fits nicely with the rare Coat’s disease that started this journey in the first place, that makes his eye glow.

Hours later Donnie Franklin finally felt good enough about his work to call it finished and sent us on our way.  I dropped off Amy and Carter at the house so I could get to the office and they could go pick up Topher from school.  Half way to work I simply had to pull the car over and sit there, speechless.  I was speechless as I thought of how this all comes back to the depravity of our broken world and how this proves our need for a Savior.  I was overwhelmed to think that, even in our depravity, He would allow us to meet Him in the middle of our trials and circumstances.  Words couldn’t express how grateful I was that He loves us and how He wants His best for our lives; even when it means we don’t understand the suffering we must endure. I was dumbfounded as I tried to understand my appreciation for the doctors and specialist He allowed our paths to cross.  I couldn’t put into words how I felt when we learned of the science behind the human eye, the intrinsic details of Retina Blastoma and Coat’s Disease, and seeing how uniquely we were designed by our Creator.  Speechless is a given when I consider the friends, family, and strangers that have loved us and prayed for us during these times.

And as I sat there songs flooded my heart and mind. Countless words of praise we have sung over the past months.  There were words of thanks I wanted to scream at the top of my lungs and yet I couldn’t utter a single peep.

Oh no, You never let go, through the calm and through the storms. Lord, You never let go of me.

Never once, have we ever walked alone.  Never once, did You leave us on our own.  You are faithful, God You are faithful.

Your plans are still to prosper, You have not forgotten us; You’re with us in the fire and the flood. Faithful forever, Perfect in love; You are sovereign over us.

Christ alone; cornerstone. Weak made strong; in the Savior’s love. Through the storm, He is Lord; Lord of all.

Songs that I have listened to and sung countless times over these months.  Songs with truth that is founded in Scripture and straight from our Sovereign Lord.  I don’t know what the couple that leisurely walked by thought as I sat there, full of emotion ready to burst at the seams.  I’m sure it seemed odd but still I simply sat there.

I sat there thinking of all the details of these past 3 months and how confused we often found ourselves, only to be reminded that God knew all of this before Carter was even born, let alone before time began.  I thought of that day…   back to that day were God allowed Carter to be delivered, not only into this world, but into our family and then that October 6th afternoon when the judge legally deemed him ours.  Who knew what all we would have in front of us? God not only knew but He had the perfect plan.  He knew that through this we would have our faith tested and have to choose how we would respond – October 16th comes to mind.  He knew that this would be one of many countless ways that He would prove His sovereignty.  He knew that through this our oldest son, Topher, would realize his need to trust only in Christ as His Lord and Savior.  And praise God, He knows what the future holds for Carter and how He will continue to use this for His glory.

So maybe this brings closure to the “Journey of the Black Eye.”  Maybe this finally signifies that we have made it through this storm.  Sure there are plenty of follow up visits and more prosthetics in the future, but it seems we have reached a level of normal.  It’s a new normal, but normal none the less.  And I’m sure we will have plenty of chances to praise God publicly or maybe just sitting on the side of the road; but I have no doubt there will continue to be times where the Grace of God will leave me speechless.

The New Norm

The New Carter

Maybe you’ve been following our Journey and wondering how in the world we have survived these past three months.  Maybe you don’t understand how we could be ok with what has happened to our boy and the fact he had to lose an eye at the age of 6.  Maybe you look at Carter and think, life isn’t fair.  If at any point during this trial you’ve struggled with thoughts like these, I would love to sit down over a cup of coffee and expand on our story and share with you just how we made it.  We aren’t special people with some magical ability to weather the storm, but I know someone who is and I would love to share with you the hope that only comes from Him. cjmalott@fielder.org

Carter's original eye on day of surgery and his new eye.

Carter’s original eye on day of surgery and his new eye.