4 Days and Counting

Yes this is my first blog post in a year ... we have been out of panic mode and just living life and watching our three amazing children grow and change.  Many days I forget about CJ's facial difference, until he tries to tell me something and I have no idea what he thought that word was supposed to be.

This morning my sweet little alarm clock (right on time) was precious CJ babbling happily in his crib ... his little (but very loud!) voice that I cherish and I am thankful for.  Before the first surgery I lamented the loss of that uniquely-beautiful gappy smile, and I look at pictures and miss it sometimes.  Now, I know I will miss his own little version of speaking ... the babbling and the volume (which has always seemed to us to be amplified somehow by that cleft ... it's like he is his own megaphone).

The next surgery is now 4 days away.  We will find out more (okay, actually ANY) of the specifics at his pre-op, but we are assuming the procedure will center around filling in that hole in his hard palate. It will be huge for him, enabling him to start talking more coherently. But will this change his 'voice'?  It probably won't be so loud or gurgly, as the cleft seems to influence some of the sounds he makes now, so those will likely be no more.

Some words for Campbell are clear as a bell: he says a great "Hiiiiii!" with all the enthusiasm in the world --he is almost certain to put a smile on any grumpy face with his ever-so-cheery "Hi!"  He loves saying "No" ... which most of the time sounds like "Na," but every once and a while he pulls out a very forceful clear "NO."  We have one of these: (http://www.usillygoose.com/nobutton.html) and he LOVES it.  We look forward to starting speech therapy after he heals ... he is so eager to communicate and we can't wait to understand all he has to say.

I was feeling pretty relaxed about the surgery until I met someone yesterday filled with tales of woe about the 2nd cleft palate surgery and the grueling recovery.  They caught a glimpse of my face mid-tale and said, "oh, I probably should not be telling you all of this horrible stuff." I smiled and politely said, "well I'd rather know than be taken by surprise." Since our surgeon is light on details and insists each cleft is different and every surgery is different, I have to have a lot of trust that God will work all this out for CJ's ultimate good, because God did not make a mistake giving this cleft him.  He has just been created a bit different.

We visited the pediatrician this morning for our follow-up sick visit:  thankfully his lungs are clear and his ears look perfect .. this is an enormous answered prayer! Thanks to all of you who have been praying.  My dad called today worried that I sounded worried, but after our appointment today and talking through everything I am feeling much better.  Our pediatrician (we go on and on about the blessing of our amazing surgeon, but our pediatrician is a very gifted man in his own right -- so thankful for both of them) also reminded me that it is proven that children need less pain meds post-surgery if the parents are calm and not stressed.  Hence, my prayers for peace and tranquility..... and maybe some wine (haha).  I was also reminded about how strong, healthy and resilient Campbell has proven himself to be.   The boy almost never cries from the typical toddler bumps and bruises -- he just dusts himself off and keeps motoring.  I know the Lord gave him this pain threshold because He knew what CJ would have to endure!

Many people have said, "wow, he looks so good why does he need another surgery?"  Well,  he needs a mouth without a moon-roof.   He needs to be able to form words properly, he needs to not sneeze food out his nose and he needs to not have the constant drip from his nose into his mouth that results in a cough.  He also needs room for all his teeth, so when his adult teeth do come in they may not come down in the roof of his mouth.  This is only the second of probably five or so surgeries ... so I suspect we might have this nailed by the fifth.   

 

Oh how He loves us!

There has been some curiosity around my lack of blogging lately. First my editor has not had a minute to spare.  Then,  I have had this David Crowder song mulling around in my head for some weeks now http://www.youtube.com/watch?v=GzfPHnoT0-0 some of the words explain this well, all of the sudden I am unaware of these afflictions eclipsed by Glory. How Beautiful you are and how great your affections are for me....Oh how he loves us.

Since CJ had his surgery in early December and Kirstens second surgery mid December, our focus has shifted  and really these afflictions have been eclipsed by the goodness and the Glory of God.

Cj is recovering well and eating purees and a few little finger foods, unfortunately his digestive system is not adjusting to the foods as quickly, so transitioning him to solids may be a longer processes than we had hoped for.   He is crawling up a storm.  At this point the predictions difficulty talking are not apparent to us or the speech therapist, Praise the Lord!  Getting him to stick out his tongue and make raspberries was a big this and we are thrilled by his success in this area.  I often Laugh at the things that now thrill me.  He is speaking words Tim and I can understand, "Hi Mamma", "Hi, Dadda", and "All Done."  Cj is still full of vibrant energy and now we say with joy "Look out !Here comes trouble." The Pictures say it all!

Peace in Trials

On the way to the hospital at 5 am

When  we got the call five days ago that it was time for CJ to have his first surgery and start on a new road we have not traveled before, my initial reaction was panic and I thought (and cried), "I am not ready."

I talked to Tim on the phone because he was traveling and I said,"but we have not prayed enough about this."  He reminded me that we have been praying about this since before CJ was born.  He was right, of course: we started praying about it almost a year ago exactly, after the first ultra sound that revealed a possible cleft lip. 

Then I talked to my Dad and he encouraged me that though I love him so deeply now and I would keep his precious smile unchanged, it would not be the best for him.  If we did not do the surgery, he would eventually not thrive and likely face health problems, some of which could be critical.  So again, there I was saying, "yes, you are right." 

What once seemed so far off was now rapidly becoming our reality.  People had said to me I would learn to love his cleft and miss it ... I thought, "no way, not me."  Of course as with so many things I have proclaimed with such certainty, I had to take back my words.  I love that boy and that cleft and I am going to miss all that has been special about it.

The week was filled with calls and errands for preparation. One of the first calls/texts that went out was to our amazing praying friends. God knows exactly what we need, of course: that was also the morning of the week where I was host a Bible study at our house, so i was immediately covered in prayer. I'm sure you could guess the topic already prepared for that day: the fruit of the Holy Spirit--Peace.  God says in the book of Psalms all your days were ordained for you before one of them came to be. It was hard to concentrate on the study that day, but I did have that peace that surpasses all understanding.

I was also tying up all the loose ends for Kyle's 4th birthday party for that same Friday evening of what was now Surgery Day -- a day that would start with us getting up at 4am.  We had scheduled the party a month beforehand. We thought  about canceling the party, but Kyle was so looking forward to it and being the middle child he gets swept along with everything else that is going on and rarely gets the spotlight. So Marmi, Joe Joe, Noel and Steph took on a gaggle of 4 year olds at Monkey Joe's and had a great time and did a fantastic job standing in. Thank you all for making a 4 year old's year!  And also for helping us to feel less guilty because we knew he was in excellent hands.


 Prepping for surgery

Daddy playing with CJ during the long wait before surgery 



The peace of the Lord was upon me the day of the surgery and I was surprisingly not feeling anxious. Our pastor and friend Gabe was at the hospital with us at 5:30 am and stayed  to pray with us and give us encouragement until CJ's surgery was well underway.  Then almost immediately after Gabe left, Katherine (a sweet sister in the Lord) showed up also to pray with us and encourage us.  I need to brag on the Body of Christ at our church for a moment.  I feel like you all are a shining example of how the church should work in prayer, love and service to each other.  Truly showing one another love in the trench warfare of life.

So though the three hour-plus surgery was a pretty lengthy procedure for a six month old (or anyone, I think)m the waiting time actually went by pretty quick.  When we met with the doctor, he seemed very pleased with the outcome.  He literally had a spring in his step and a sparkle of excitement in his eye (not that he was dour or rude before, but clearly he felt very good about how things went).  He walked through how he had repaired the soft palate and uvula, and had done a partial repair on the lip intended to let the muscles develop in a way that when he makes further repairs everything should settle in nicely for the rest of his life.

When CJ was starting to wake, the hospital staff brought us back to Recovery.  The first thing I heard even before I saw my little man was a high pitched yelping sound, almost like a dog that got his tail stepped on.  When I realized it was CJ the tears and prayers began to flow.  One of the many reasons it was so shocking to see CJ in so much pain is his extremely high pain threshold: with vaccination shots and the natural head bonkings in life and such, he has displayed minimal reaction, so minimal at times I have wondered if he had that birth defect where he lacked pain receptors.  Now I have no doubt he has pain receptors.  He laid in my arms for hours like a dead weight, eyes closed, tears streaming down his little face and moaning in pain.  They would give him morphine every two hours and he would settle for about ten minutes and then be in pain moaning again. 

The Lord also blessed us to have my wonderful friend Dianne come and sit with us.  From the time she laid hands on him and prayed, he stopped crying.  While Dianne sat with me and CJ, Tim was able to run to Target and get additional socks and a neck roll for CJ, and Dianne helped me to eat my delicious salad she had thoughtfully brought to spare me from hospital food. After about eight hours CJ began to settle a bit, but still was not close to taking any milk. The Doc would like us to feed him out of the side of him mouth that does not have the stitches, this really makes him angry since he would drink right out of that cleft before.

Our night nurse was great, she made a cozy little nest for him in the crib, that let us free our hands and Tim and I would take turns standing next to the crib singing to him and gently rubbing his head.  Keeping CJ's hands away from his face was also a huge challenge.

The string you see was a suture that went all the way through his tongue so if his airway became

blocked they/we could pull on the string to get his tongue out of the way. Tim called it the 'dog leash.' This seamed to bother CJ at first, until he made it his friend and would chew on it and play with it in his mouth.  After they removed it the next day, he clearly missed it  and was looking for it.  We have heard stories about people allowing little children to make life decisions because they seam to like something -- if we did follow that "wisdom" CJ would have a piercing on his tongue right now he could play with.  Uggh.

What Kirsten, Kyle and friends were doing at the birthday celebration while we were in the hospital

Every time time pain meds would start to wear off he would scream in pain and tense up his whole body.  It was a long night.  Thank you for all the prayers of comfort.  When morning came Tim got the first smile, that was so sweet ... and then it very quickly turned to screaming.  He was getting antsy so we wheeled him around the halls in a wagon filled with blankets and pillows. Tim pulled the wagon, I trailed behind with the IV.  He liked that for a little while, then we tried the swing which did not really work out between the IV and the oxygen monitor and him being a chunky little monkey ... the swing offered little comfort.

Big man in a little seat; I could barely got his seat belt on with those chunker legs!

Finally around 2:30 he drank 4 ounces of bottle so they started the process of releasing us from the hospital, and we had him home shortly after 4pm. 

Now the long road to recovery. This will be hard on all of us. For the next four weeks we have to keep his hands covered. so he doesn't stick his hands in his mouth and bust open the stitches.  My sweet Friend Noel sewed together the hands of some footie jammies, so he will have protected hands.  I give him some hands free time too.  Although covered has or not he still finds a way to get something in his mouth.  It will be a miracle if we can get through this with out anything busting open. So now we are home doing life. 

In an earlier post  I made reference to Kirsten (6 1/2) having a little surgery to remove a blood vessel. The pathology report came back with irregular cells, so they sent it out again for an expert opinion and the expert says the same thing as the first report.  Kirsten will have to have another surgery before Christmas to see if there are any more irregular cells. The Doctor says in 25 years of practice he has never seen a 6 year old with melanoma but even though it is rare it can happen.  Lately the Spolars specialize in rare.  Please pray for Kirsten.

We are running this race, a marathon not a sprint, with perseverance, hope and faith ... that in all of this God would be glorified. We know God has great plans for our family.   It helps me to think that God has a reason for all of this and somehow He will use it for our good and His Glory and for the good of the Body of Christ.  All of this is not futile. We just have to remember everyday that he is at work and all the troubles of this world are preparing us for the future weight of Glory.



The Hospital gave him a monkey he loves, in his cozy nest.

Still looking pretty swollen  on day 2

Day 3: Starting to look better already

God's Perfect Workmanship through pictures

Campbell is God's Perfect Gift and Perfect work! My close friend and sister in the Lord Kori Hoffman is an amazingly gifted photographer. She took these pre-surgery pictures to show the world what an amazing gift CJ is, even if he is not perfect in the worlds eyes. He is perfect in Gods eyes and these pictures are a tiny glimmer of the perfection God sees.

 

Surgery....So Soon!

 The below message is from Tim, about CJ's upcoming surgery.  We have been Praying about this day since before he was born.  It is inching up on a year now.  Even so, hearing the surgery is in less than five days felt like a punch in the gut.  My first thought was, "so soon." My second thought was," I like him this way, what if the ruin his cute face?" Ironic,huh? 

Message from Tim:

Praying friends,

We just got a call from the surgeon's office this morning that a spot has opened up for six month old Campbell's cleft palate/lip surgery this Friday morning.  This is great news, as we were hoping for several reasons that this would happen in December rather than waiting into the new year.  The timing is a bit sudden ... we are thankful that it looks like we will have good help from out-of-town family, but we certainly covet your prayers for this precious one over the next few days!

The plan is to take Campbell in to the hospital at 5:30 am, then his surgery is scheduled to start at 7:30 and run about three or four hours.  He will stay overnight and we expect to be able to bring him home late Saturday morning.  We are so thankful for the Lord's provision of a surgeon who is truly an expert in this niche, as I have mentioned to many of you along the way.  He isn't the strongest communicator though, so we are a bit "blind" about what to expect (what he will look like post-op, what the timing and steps of his recovery are, etc ... let alone how many of these he will undergo over the coming months/years) ... and those unknowns serve to remind us again of our need to wait at the throne of our great God.  The Gospel of Mark records our Lord Jesus commanding the wind and the waters "Peace! Be still!"  He is certainly just as sovereign over this surgery.

Please pray for:

- Campbell's health leading up to the surgery: by God's mercy he has been generally very healthy all along, and got a great report at his six month checkup a couple of weeks ago.  The usual coughs and sneezes are around our house these days -- please pray he doesn't catch anything (the next available surgery date is Jan 11)

- The surgery itself: please pray that there are no complications, with the general anesthesia, the procedure and his recovery (near- and long-term)

- Our peace: the aforementioned unknowns, and just the fact of our six month old "going under" for most of a morning ... The Holy Spirit will be our peace and our hope.  Also for Kirsten and Kyle, as the extra attention their baby brother needs in the next week or so could be challenging for them

Thanks in advance for your faithfulness and love.

Grace and peace,

Tim & Kimberli

The Defense

Standing on the stage at church, holding Campbell, my arms aching because he is now 16 pounds and I wanted  to hold him forward so all the covenant family who has been praying for him could see God's goodness through the sweet face of Campbell. I feel so much love and so little judgement in our Christ Covenant church family and CDS school community ... and I am so, so thankful for that.  As I stood there waiting for his turn to be baptised, I tried everything I could to hold it together and not break down in tears in front of the entire church.  I looked out at the Body of Christ and saw smiles and waves from the dearest family and friends.  Early on Tim had mentioned baptism for Campbell and the thought of standing in front of over 1,000 people with a baby that had a facial deformity (the PC term is facial difference, but we know I am not PC) was mortifying.  I thought. "well, we will just baptise him after he is all fixed up." But as I have said before, God has a way of changing my mind and my heart to work in harmony with His plans.  Because of God's plans for us and Campbell, there we stood on the stage before any surgery has taken place.

Thankfulness welled up that because Christ died and rose, we could make a covenant with God concerning Campbell, and that in faith we will raise Campbell for God's Glory and he will accomplish God plans for his life through the power of the Holy Spirit.  I googled famous people with cleft palates and wow there are many who have done amazing things in the sciences, mathematics, politics, social causes, medicine and even entertainment.  It seems what they lack in facial structure they make up for in brain power and tenacity.  I have no doubt Campbell will be the same way: he turned 5 months yesterday and that little power ball is already standing up and walking forward in the walker (for about three weeks now).  When I texted Tim to tell him about our little over achiever, He texted back "Ruh Roh!"  Yes, we are in for it.  We never baby proofed with the first two, but I think we have a weekend project in our near future.

The details of the upcoming surgeries are still unknown, but God in His grace and mercy continues to send us little reminders of His control.  Reminders also that I don't need to shelter CJ from the world because God has a plan.  Last week we were having our regular Friday night pizza (not me: I had a salad since I have gone grain-free). Since the baby was born we have been having pizza night at home, but I had a little cabin fever so we decided to go to Tim's favorite and our old Friday night institution, Mellow Mushroom. I have a new bad habit of scanning the room and looking in baby carriages for people or babies who have had cleft palates ... I have not quite figured out why yet.  We were seated and I did not see any. Campbell does not like the car seat but is enthralled with the jumper, so he was standing on my lap jumping.  Two tables away I noticed a family sit down ... sweet family: girl, boy, mom, dad and grandma, nothing unusual. But, I did notice the mom looking at CJ ... the type of moment when you catch their glance and you both look away. A little while past eating my salad, I had to bring Kyle to the bathroom and I look up and that sweet mom was standing next to me.  She came over to tell me that her son had had a cleft lip.  I could not tell from  two tables over.  We talked about surgery and some different concerns I had.  I gave her my info and she so kindly e-mailed me. I felt like this interaction was a little gift from God to ease some of my woes.  They had different doctors, and I thought about our discussion about the doctors a few times that week.   Putting away my inclination to keep CJ from being seen and allowing him to stand and jump like he loves to do opened the way for God to bless me ... and He did.

We ventured out again today and I thought it would be easier to manage the older two if I was wearing Campbell in the wrap. I needed to stay on top of them so my kind friend who was with us didn't have to chase the kids around the pumpkin patch on her own (which she ended up doing anyway).   For the first time I wore him facing out because I know he loves to look around and kick those little legs.  This was also a challenge because I knew he was in plain view for the world to see. But God has been working on me in this area.  I opted out of the hayride with CJ, not wanting to cause him shaken baby syndrome.  My wonderful friend took K&K on the hayride as I waited in line to pay for the pumpkins.  I found myself standing there thinking "I am in line ... why is this man sort of loitering around, not really in line?"  I fought the New Yorker in me and did not ask him if he was in line or if he was going to move up, because he was cooing and talking to Campbell. Then he looks up at me and asks, "so, is Dr. Matthews going to do his surgery?" With surprise in my voice I said yes, and he brought over his 8 year old son ... who had a cleft lip that was fixed by Dr Matthews at 7 months old. His son looked *great* and some of the concerns I had about lip shape and a few other things were all laid to rest. 

Many years ago someone counseled me that trying to alleviate other peoples' problems sometimes is getting in the way of the struggle God wants them to have for their own good and for God to bless them in their struggle.  I have been trying to cover up Campbell and keep him away from the world, but that has also been closing both of us off from the opportunities to see God's blessing and work through others.

My dad used to tell me when I was little and got a cut not to put a band-aid on it because it would heal quicker if it could breathe.  Healing will happen ... breathing in all God has for us, instead of trying to put a band-aid over the situation.  Thanks be to God for being so much bigger than the roadblocks my self defense puts in the way of His work.

The plans I have for you

My husband sent me a wall street journal article recently on anaesthesia and  how researchers suspect that among children under the age of 4 who have had repetitive surgeries, the anaesthesia can cause learning disabilities.  My first though was oh great, why did I have to see that article now, right before we start a string of repetitive surgeries?  You have read in my other blog posts my preferred approach is often attempting blissful ignorance. That never wins out -- God won't let me walk around with my eyes closed knocking into things for too long.  The whole time I was reading the article, I kept looking for the paragraph that said the research is unreliable and this is nothing to worry about. My heart sank when I got to the end of the article and I did not find the happy ending I was looking for.   Now I know we need to do our research before blindly subscribing to a path that will help one thing for Campbell but hurt another that may never be able to be fixed....sigh. So I was telling one of my top five besties about this article and how well maybe we could fix just the essential things he needs for eating solid foods and talking, and take care of the cosmetics / and structural after he is four. She laughs and says wow what a change from what you were saying nine months ago.  Yes, she was talking to the same girl that wanted to have in-utero cleft repair so he would come into the world "unflawed". God has a way of changing your vision, to see what He sees and to follow His plans not our own. Often the road is not easy and we don't just ease into it. 

There is a devotional I enjoy reading and recently the author gave an illustration that every morning her dog will walk around the fence and then slam himself into the gate just to check to see if it is open. She went on to talk about the fences God puts in our life for our own good. I think of this with myself and everytime I plead with God for a different outcome, I am kicking the fence to see if it will open ... rather than saying, "OK God, this is what you have given me, now give me the tools, the strength and your spirit to bring Glory to you in this situation."  O that I would be at peace with that!!

At the recent funeral of a sweet friend this verse Jeremiah 29:11 was read: "For I know the plans I have for you declares the Lord, plans to give you a hope and a future."  This verse was also the key verse for our in-town summer mission for the youth group at our church, where a faithful young man went to Glory in a tragic accident.  I have heard this verse so many other times recently. However it was not the first time I had heard it or even meditated on it.  Years ago working in NYC as a fashion designer, I felt like the Lord had sent me there as an exile ... a foreigner in a strange land I wanted desperately to get out of. In the times when I felt like I had nothing left in me and I could not take the scrappy city life anymore, I would read this verse and remember He had plans for me, for a hope and a future.  But how would I live in this place where I was an exile? If you pop up to Jeremiah 29:5, it talks about the Lord carrying you into exile and to make the best out of it: build houses, plant gardens, marry.  Basically the Lord has you in a place and you have to live in it and make the best of it until He carries you out.  With Campbell's cleft, I have chosen to accept God's perfect plan and live where He has placed me, not lament daily that my son has a facial deformity and wonder what the future holds for him.  In Proverbs it says do not boast about the future because you do not know what a day may bring forth.  Now I can only say, "I don't know."  I used to love to talk about the future, now all I can say is, "I don't know what the Lord has in store."

Standing in the visitation line at the funeral with some 250 plus people, the funeral director spotted Tim and me and came over to say hello.  It is a strange feeling to be known by a funeral director for no other reason than we have given him our business two times in the past four years.  It was also a strange feeling driving through the cemetery and knowing the twists, turns, trees and monuments.  As time goes on we have a choice to accept the reality of what the Lord planned for us or wallow in self pity.  God is working everything for good in all of these life events and carefully carrying out His Plan to give us a hope and a future and bring us back from captivity. 

There is another verse right before the delivering from captivity that says you will seek me and find me when you seek me with all your heart.  So, when you find Him he will deliver you from captivity.  He is in the process of delivering me from a captivity in my mind, the captivity of self pity, wondering "why me, why all this?" ... because He has plans for me for a hope and a future and they are very good.

Be Merciful to Me

As I am making the lunches at 9:00 at night for school the next day and mildly grumbling about the fact that making lunches is not on my list of favorite things to do, Tim says, "what part of being a stay at home mom  is good for you? You need to be thankful." I quickly retort with, "I always told you it was easier for me to work ... I am good at work and I don't consider myself particularly good at keeping house."  But I am not choosing what is easiest for me.  Tim goes back up to finish the children's bed time routine and I glance over at the scripture cards sitting right next to the toaster oven.  There is Psalm 51:12: "restore to me the joy of your salvation, and grant me a willing spirit to sustain me."   I thought, "I need thankfulness ... yes, but I also need thee, joy of my first love, and a willing spirit to sustain me." 

In the first days and weeks Campbell was in this world my prayers consisted of Help, Have Mercy, and Why Lord?  Over time the Lord has given me the answers "Kimberli, I am giving you help, I am giving you mercy and this is why and how ... You have been crucified with Christ. The life you live in the body, you live by faith in Me, the Son of God who gave himself up for you."  (Galatians 2:20)

Over the past ten years, I deemed myself an underperforming perfectionist. Where do those standards come from?  How we were raised, who we are around, who we are influenced by?  I could never meet my own expectations for perfection. Tim says it is because my standards are unattainable and not gracious to myself (or, too often, others).  Only when our creator sets the standards are they obtainable.

But the Galatians verse has it: dying to myself so Christ can live in me, to be used for God's purposes. This means dying to my desires for my idea of perfect - perfect baby, perfect children, perfect house and blah blah blah. 

Campbell cruised through every one of the pediatrician's milestones with flying colors except for one ... when he looks in the mirror does he smile and coo at his reflection?  No, not at all.  When I hold him up to the mirror, I talk to him and smile and laugh.  He does nothing but stare with a confused look (of shock?) on his face.  All I can think is he does not recognize himself.  He looks at all of us all day, his sister and brother, other babies in the church nursery ... Campbell thinks he looks like everyone else, but when he sees his reflection he does not understand it.  The other day when we looked and he stared and stared until I thought he was going to burst into tears, I told him how handsome he is.  And as we walked away, I said "don't worry we will get you all fixed up." 

Are we all a little like Campbell, horrified when we look in the mirror and see who we really are? And do we need God to do radical surgery on us so we can look in the mirror and see the beauty we were meant to exude? Our creator holds us and says "you are wonderful .. and don't worry, we will get you all fixed up."  It is going to be long, painful and hard, it will take up a lot of time when you are young, but after all is said and done you won't even remember that person in the mirror (perhaps only an occasional glimpse of the past ).  His plan is that perfection my heart seeks.

Don't Send Me!

Since my earliest days as a believer in Christ, I always thought I could be a missionary in Africa or some third-world, hinterland type of country.  Or that I could take on the hardest things in the name of Christ.   I used to think and pray (like Nehemiah and David), "Lord send ME, pick me to carry out your purposes...I can sell everything and move to the jungle."  Now I realize the sending is not just off to some place, the sending starts in our own hearts and lives here and now. 

So after a very difficult four years ... years of prayer and struggle saying "ok, this is what you have for me ... I will deal with it."  Then we found out we were having a baby with a cleft palate. NO, Lord don't send me ... not this.  I need a break, I have enough tools in my ministry backpack.

This week a sweet friend of ours, who was literally the first friend we had in Charlotte other than my sister,  went home to Glory after a two year battle with breast cancer.  Selfishly I only want to hug her and say, "don't leave!"  Even though, wow, after all that misery in battling the disease won't it be awesome for her: no more pain or suffering ... pure joy in the arms of Jesus.  I look at my whole family this week with more adoring eyes, especially little Campbell.  My hugs for them are tighter and my words are sweeter.  We don't know what this day has in store so we have to listen very carefully for the Holy Spirit saying "love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self control -- practice these things." 

So when Campbell blurps some of his 'cottage cheese' down my shirt for the fifteenth time in a day (seriously, the child has some amazing drool ... and this upchucking is something else), I have to remember my joy, my love, my thankfulness for him.  When Campbell is crying to be held (and the boy has some pipes! Does the cleft come with a built-in amp?) and I am cooking hot food on the stove, Kirsten is pouting and pitching a fit about not being allowed to watch tv for hours on end and Kyle is at my heels complaining he does not like what I am cooking, I have to plea with the Holy Spirit who gives peace and patience and self control not to go flat-out loco.

The list is growing longer of "no, not me's" turning into me eating my words ... the Lord has been saying to me Kimberli you need to not say "no" ... If I choose this for you, you will do it.  

Bottle feeding is a great case in point. I have always been a staunch advocate for breast feeding,  Campbell tried  for about two days, but because of the openness of the cleft through his nasal passages he has no suction. This is surely God's plan to give me patience:  one of his feedings with his special compression-based bottles can take anywhere from half to an hour -- he seems to have a growing preference for the hour variety -- and since no one has invented a hands free bottle yet, I have to enjoy the moment ... or hour. 

(I can give another example of my impatience: on the way to church on Sunday, I did not like that my coffee was coming out of the travel mug lid so slowly, so I took off the lid and ended up with coffee on my face,  in my hair all down my dress and sweater.  And I am supposed to be learning this lesson...hmmm.)  

We went apple picking yesterday and it was our first excursion out besides school and church stuff. As I was setting up a picture in the apple orchard with all three children, a little boy pointed and yelled to his mom, "hey mom, look at that baby's face!"  The mom hissed 'don't stare' and pulled the boy away, then I heard the mom say again, "don't stare."  As we finished our pictures and walked on, another mom gave the "oh, that poor dear" look.  I have gotten so used to (spoiled by!) the love and acceptance of our covenant family at church and school that this totally took me off guard and tears started to come.  But then I thought don't give in to the pity, there is nothing wrong with this sweet little gift from God.  Campbell is made to reflect the Glory of God, just like everyone else.

When we first found out Campbell had a cleft lip and I heard about a specialist in France that does repairs while the baby is still in the belly, I thought well, that is the answer (my impatience kicking in). Then after our first consult with Dr. Matthews I quickly realized that was not the answer, and I thought waiting 6 months was way too long and couldn't we do the lip sooner....

When Dr. Matthews told us last week he may do the lip in November, I thought really, is that not just a little too soon?  This is my precious boy!  Maybe God is making me more patient, or just altering my perspective, or maybe some of both.  In any case, trusting in His plan is the key. Trusting that each and every day, every task, every hardship, every loss ... God has a grand plan far bigger than us.

DeNILE ain't just a river in Egypt

I have been living in the land of denial with my sweet son Campbell, but I know as an exile in a foreign land the Lord does not want me there.  Did you ever have something in your life where you knew better but nonetheless thought, "if I ignore it or act like everything is ok, than maybe it will be ok?" Or, in a room full of people there is an bull smashing all the china ... no one is saying anything and you're just smiling with the dust pan and broom in your hands. Maybe if someone just opened the subject of getting the bull out of the room, before all was lost, there might be a chance.

So many people have asked me why I started this blog, what was the catalyst.  Simple really: to find a way to get the bull out of the room.  I have always looked at hardship and trials through the lens of a scripture that says "The God of all comfort, comforts you so you can in taurn comfort others, with the comfort you received."  In this particular trial I have been so closed, I could not get the words out to give or receive comfort. This time I could not package my trial with a pretty bow and convince myself of God's goodness in this situation.   So I chose to say nothing at all nod and smile or just say good, good, yup everything is good ... at the same time hiding Campbell.  God spoke to my heart and told me to share what I was going through, so it would not be rot to my soul and at the same time would be a comfort to others.  The Holy Spirit prompted me to share through the written word, because the spoken word was too hard, I just could not bring myself to talk openly about the struggle.

We have been in the honeymoon and I have chosen up until this point to remain blissfully ignorant about what is to come. Until this week I have stayed away from cleft palate web sites, support groups and foundation resources, choosing to ignore the challenges ahead.  Just this week I have read about foundations, camps, conventions, scholarships, schools and on and on, all for children with (the politically correct term) a cranial facial difference.  It never came to my attention that CJ would need a special camp, school, scholarship or foundation.  It never occurred to me that we could have surgical complications, that require more surgery.  Oh FYI cranial facial difference awareness month is July, I guess I am a few months late on my awareness this year.  A whole new world is opening up to me ... do we embrace this new world, or do we try our best to act like and treat him like every other kid that does not have a "facial difference."   I guess it falls into the category my Grammy Margaret always touted but rarely followed: everything in moderation, so maybe a little of both.

I have heard a few people say that when God builds you into a spiritual house for His purposes, He wants the keys to every room ... even the dark closet in the basement.  I literally have a room in my house I call the Room of Shame; it is where I stick all those things I don't know where to put until I can deal with it, it is the room I lock up when guests are coming over.  Isn't it funny how life imitates heart?

First, I need to let God into this room to clean it up and make it presentable, then I can show off His great plans through this process, I know He is at work.  Every day we have a choice let God reign, take charge and lead us a guide us in what He has for us and our family. Or we can try go it alone making choices that may or may not turn out well, because without God in control my motivations are me-centric ... and that has never turned out well.  

So where are we now? Campbell had two doctor appointments this week, one with the renowned cranial facial surgeon, and the other the four month check-up with the pediatrician.  Both appointments went very well.  He is growing better than expected for a cleft palate baby and is healthier than most.  The Lord has been good to us in shielding Campbell from the frustrations of fever and ear infection (because of which 80% of cleft palate babies have to have ear tubes before six months old).  Dr. Matthews (the surgeon) would say the grain free diet of mommy is a large contributing factor.  When I questioned him on this he basically said clean eating=healthy milk= healthy baby. 

We had confirmation that the first of Campbell's surgeries will be in November, as Dr. Matthews says every cleft is different and it does seem like Campbell's scheduled surgeries will be in a different order than other cleft babies we have heard about.  The soft palate will be closed first, then the lip to promote muscle growth and formation, this will be a temporary lip closure for the purpose of the muscle.  After the first surgeries we will attempt to start him on solid foods.  Our other two did not start solids until 6 months anyway.   He is doing great with the mama milk so the doctor said let's leave well enough alone.

Many years ago, probably 17 or so my sister Kari knew the struggle I had with self image and diligently prayed and shared a scripture with me from Psalm 139 that she reminded me of everyday:  I was created in God's image, fearfully and wonderfully made; He knew my days before one of them came to be and they are all written in his book; He has every hair on my head counted and His thoughts for me outnumber the grains of sand.  Like my sister did for me I will pray this for Campbell, I will remind him of this scripture ... because God did not make a mistake in creating Campbell exactly how he is he is wonderfully made.  So when kids are kids someday and someone says something ugly to him. Campbell will know God's truth about this cleft without a shadow of a doubt: that He has great plans for him and made him perfect exactly how he is ... different. Now I pray that the Lord will give me the strength and perseverance to live out His promises, even if they look different than I thought they would.

I love my feet, see the foot

Joy comes in the morning

     "Sorrow will last for a night but joy comes in the morning."  -- ancient Hebrew proverb

In the morning when I hear the cries coming from Campbell's room, I am thankful for the cry, because he is crying and the specter of SIDS is put away for another day.  But at the same time I am exhausted from being up multiple times a night ... if I could just get five more minutes.... 

This is not all Campbell's fault however, or even the fault of the other two who pitter patter down the hall in the middle of the night talking about bad dreams or bugs imagined in the bed (no we don't have bed bugs ... I wonder what Kyle will think we he learns there is such a thing!).  I have an obsession about checking on Campbell.

Whether in the middle of the night or at nap time, I have to look in on that boy.  Is he breathing?  Trusting God that Campbell is in His hands is a huge challenge for me. I know in my head and in my heart that when God wants Campbell in Glory, He will take him.  I also know now that He would somehow give me the strength and courage to handle it as well as use the experience for good, because that is what God does.  One of those truths you wish was for someone else, but once it is yours you understand that it is good.  Every time I put him down in the crib, I put my hands on him and pray for his protection, that God would charge his angels concerning Campbell's safety and most of all that he will not succumb to SIDS.  I even plead with the Lord, "God I know I just have to trust you...." 

[Wait, I have to stop and run up and check on him now.  Ok, sorry, I am back....to quote Forest Gump, "Crazy is as Crazy does."]  

I even bought one of those motion sensor monitors (the ones the pediatricians say are a waste of money), so I would not have to run up the stairs every ten minutes.  But the silly thing is going back to the store; good thing I saved the box.  One night while feeding Campbell I forgot to turn it off when I pulled him out of the crib and the alarm that can instill pure panic did not even go off!  The ceiling fan, of all things, was causing just  enough movement on the mattress to keep the alarm from sounding...ugggh. 

Do you think God is telling me something?  Asking me to surrender my fear, trust Him rather than expensive little machines (that do not work anyway).  You were right honey: just a waste of money that did not bring me peace.  God and Tim are so patient with me they let me chase my tail in a circle like a little puppy until I am so exhausted I pass out.  Then surrender. Break this pattern in me, Oh Lord.



I can pinpoint the starting point of my fear very easily.  That providential night four years ago when the Lord took my sister Kari home so suddenly.  She was 35, staying overnight with us while attending a church women's conference.  I was restlessly sleeping in the room across the hall from her. I was up about five or six times that night and every time I woke I prayed for Kari's protection and healing from her seizures.  She had her alarm set for early that morning because she and her BFF Lydia were going off to the conference.  I got up early to make one of her favorite breakfasts: biscuits, and all the trimmings.  When she didn't come down I thought, "goodness she must be in the shower, her alarm keeps going off."  When I finally decided to go in to tell her about the biscuits, her body was still there in its sleep, lifeless, but SHE was in Glory with Jesus, the lover of her soul. 

God did answer my prayer for her that night -- he healed her and he protected her -- but it just wasn't at all in the way I had wanted.  I am a little more specific now when I pray....When Tim goes on a trip and I don't just pray for the Lord to bring him home safely.  I pray the Lord would bring him home to our house in Charlotte safely.  I know the Lord has a  better plan, so much bigger than my life or what I want and pray.  I do pray that my prayers would be in line with His plan. 

[Oh yes I did ... I just ran up and checked on Campbell one more time in the last paragraph!]



I was telling a sweet friend today a story of when Kirsten was around two just after Kari had gone to her eternal rest.  Kirsten was not feeling well and napping, I was overcome by fear that the Lord would take her too, crying in my bed, praying and waiting for her to wake up.  Then I heard the whisper of the Lord say to me Kimberli, I am not going to take her from you now, I have given her to you for your sanctification.  I thought, well yes Lord she is a very spirited child (and she does keep me on my knees, still to this day).  I know this is true for Campbell as well.  Kyle was born 6 months after Kari passed and he would be what some people call a rainbow baby, always offering hope and promise.  I have two that keep me on my knees and one that caused me to remember Gods love for me and good promises.

God commands us to "be strong and courageous, do not be terrified or discouraged. God will be with you wherever you go."  I need to whisper this to myself in those weak moments of distrust.   And there, there is that hoped-for cry,  just as I am finishing the blog. Why do I distrust?


                                                                              

Just home from the hospital, and Daddy is comfy (but tired!)

Game Day ... Denard crushes the Irish again ... and I can match him smile for smile.  GO BLUE!!    

                                                                        4 months old now !!!