Fingerprints

It's that time of year. Walmart shelves are growing sparse in the school supply section. Malls are getting more crowded as everyone scrambles to find shoes, clothes, and supplies to begin a new school year. There is an excitement among most parents. A groaning echoing from most students. I am experiencing both. I teach 2nd grade in the small West Texas town I grew up in. I love it here, and I love my job. I have been working tirelessly up in my room for the past 2 weeks and am super excited for the first day to finally arrive.

But then there is the aching. The pain. The fear. The grief. The disappointment that this summer handed us, and the longing for a "do-over!" Yes, we have been through worse. Much worse. But, it's never easy. I'm getting to the point that the "easy stuff" is wearing on me. I am tired. So very tired. Will it ever end?

Last week at our (local) surgeon's office, she decided we needed to begin putting Silver Nitrate on Caed's incision. If you have never seen SN, then picture a fireplace match. That is what we have to put on the opening of the incision every 3 days. It turns coal black. (and by the way, the container is labeled with enormous letters 'POISON'. I was instructed to be extremely careful in handling it, storing it, and administering it.) For someone who is NOT a nurse, stuff like this sends chills up my spine every time. Dr. G said to come back in 2 weeks and we would reassess the progress. The problem is.....I don't think there is any. It looks the same to me today as it did 2 weeks ago before we ever started the SN. She said, "worst case scenario, we will look at a surgical fix."

My heart is hurting tonight. I feel it in my bones. Surgery will be in order. Granted, it probably will be a very quick, easy one.....but it's #5.

I'm just tired.

Tomorrow is Caed's 8th birthday. EIGHT! I honestly can't believe it. Would like to say 'I don't know where the time has gone', but.....I know better. I remember like it was yesterday standing beside Caed's bed in PICU pleading with God to let us see his next birthday! And He DID! Thus far, four more to be exact. I am humbled. I am paralyzed with gratitude for the mercy lavished on my little boy. He brings us SUCH unexplainable joy. There is something so special about him, of which I have a very hard time wrapping my brain around. The fingerprints of God are undeniably smudged ALL over his little body. I see them! With each and every scar (and there are many), I see HIM!

I don't understand why this most recent surgery has included the complications it has. This was an easy one. And yet.....2 months later, here we still are. A HUGE praise that I cannot fail to mention is that Caed FEELS great! He is as rambunctious and ornery and funny as ever. Other than a few emotional issues (dealt with daily from this incision problem), he is good. Really good. And for that, I am so thankful. We have experienced the opposite this summer, so I don't take these "feel good days" for granted.

I don't know what the future holds. But, I am confident in WHO holds it. Desperately clinging to His promise tonight:

For I know the plans I have for you, declares the LORD, plans to prosper you....not to harm you, but to give you a hope and a future.

He isn't promising 'easy.' But rather that He knows BEST....and will never let go!

Incision Issues

Well, we had a slight bump in the road (which is expected, I guess). The last of Caed's steri strips came off on Friday. We had quite the celebration! It meant that he could FINALLY swim again. Been a long *HOT* summer not being able to do that. He was absolutely giddy on Monday when we told him 'today was the day' he had been waiting for!

One more item on Caed's summer to-do list was of course go to JoyLand. (Lubbock's amusement park) We had canceled several weeks prior because we knew the rides that Caed would want to go on....might be too rough. I felt it would be cruel and unusual punishment taking him there, and him having to watch everyone else ride the rides he loved so much. And making him settle for the carousel and train! So, we canceled only a few hours prior. This week, more cousins were in town, so we thought JoyLand would be perfect timing (since all steri strips were gone).

However, looking at his incision, we could see one section that just didn't look right. We began putting Neosporin on it a couple of times daily and watching it carefully. Yesterday he came to me lifting up his shirt. He knew something wasn't right. Sure enough....that troubled section had opened up a little bit. We tried to reassure Caed all was fine, but secretly talked about the need to get it checked out. Simply heading BACK to a doctor (any doctor) would sky rocket his blood pressure. Even more so, we knew his heart would be broken having to cancel JoyLand again!!

We wanted to avoid the ER simply because we didn't want to pay $100 for a couple of steri strips. The plan was to head to a clinic instead. My sweet neighbor did some leg work for me calling around and they told her they wouldn't see him (due to it being a recent surgery and an open wound.) I wanted to cry at that point. Going to a clinic is one thing. Going to a hospital is entirely another. I secretly packed a small bag full of things we might need if they decided to keep him overnight. Just something you always prepare for when you take 'these kids' to a hospital. You never ever know! Even though deep down...I knew it just had to be an easy fix.

When we pulled up at the ER, Caed looked around...saw the sign and began crying. It took me forever to pry him out of the car. He was absolutely scared to death. He kept saying over and over...."I don't want to have surgery again!!!.....I don't want them to hurt me!" I tried to talk to him. Told him they were simply going to put another "band aid" on his incision. (and prayed like crazy for that to PLEASE be the case). Finally, Caed got out of the car, but then he wanted to wait for his eyes to "dry up." He did NOT want anyone knowing he had been crying. The entire 2 hours we were there, enormous goose bumps covered his arms and his eyes were full of tears (ready to fall at any time). Once again, he put on his brave face (even though I knew he was dying inside).

The ER doc was one we had seen many times before which was very comforting. He said that particular section was where Caed had been cut on 3x prior. It made sense. The top section was new. It healed beautifully! They weren't able to push it back together before putting on new steri strips. The skin has simply lost all elasticity. So, our prayer is that it will heal up on its own and for zero infection! ER doc was insistent that we come back immediately if we saw more 'oozing or redness.' Our plan is to go see his Lubbock surgeon next week for a follow-up. I feel good having not only a surgeon look at the site, but one that has had experience with Caed. Hopefully, it will be closed up and healing nicely. Telling Caed about this appointment with Dr. G will be another story...... Pray for that!!!

I sat Caed down this morning and together we brainstormed things he probably should avoid for 7 days, and then a list of things he was free to do. I told him breathing and walking were probably fine. ANYTHING else is not allowed!! (haha just kidding....kinda) He has asked me many many times today "What if...." questions. At one point he even asked "If my incision doesn't close up, will I die....?" I just wanted to cry for him. He has been through so much (unexpected) this summer. And now this. Even though this is simple. We are home. Nothing life-threatening. But, sometimes the emotional issues are just as tough (or tougher) as the physical ones.

We have 3 weeks left of summer. Our swimming days are out....again. At least for a week. JoyLand days are out...again. At least for a week. Praying this new bump in the road is resolved quickly and Caed can salvage what little of summer fun is left. His baseball team is having a swim party soon, and Caed was also wanting to swim for his birthday (also coming up). As my cousin said today...."HEAL BABY HEAL!!!!!!!!!!"

That is our prayer....

Doing GREAT!!

Caed is doing wonderful! His emotional "issues" are getting fewer and farther between. Typically they happen during bath-time. He is terrified that something is going to happen if he gets even ONE drop of water on his incision. We have tried and tried to explain this to him. He doesn't hear us. Caed has not been allowed to swim for almost 4 weeks. 2 of his steri-strips are almost off. The other 4 are still stuck on pretty good. Ugh! Partly due from his EXTREME fear of it getting wet.

(we are making tremendous progress: I talked him in to running through the sprinklers yesterday. He questioned me 80x...making sure everything would be ok. I reassured him. Already today, the kids are back out running through "Rain Town." haha)




I'm not certain of how Caed got these "broken" 3D glasses. (I think Uncle Mark probably had a hand in it) But....the child hasn't taken them off. At first, we thought he was doing it to be funny. We soon realized nope, he truly thinks he looks cool! (someone made the mistake of telling him he looked like Joe Jonas) I looked down at him in church Sunday and saw THIS! I about died. I'm sure the preacher was a bit distracted seeing Caed staring back at him from row 3! haha




Uncle Mark and Hayden got Caed ready for a game of hide-n-go-seek IN THE DARK...outside!





Reagan had a fun weekend celebrating her 11th birthday. She had a sleepover with 7 other girls. They had SO much fun! Stayed up til 5am.....until "Mean Mama" made them turn the lights out and get a little bit of sleep.




Caleb has enjoyed finally having both Reagan and Caed home to play with each day. He is Caed's shadow...

101

That's the number of questions we are hearing each day from Caed concerning his recent hospital stay. Quite honestly, they completely catch me off guard because they occur at very random times during the day. While walking the aisles at Dollar General I was told...."Mommy, I want you to tell me the truth! " (talk about a statement that makes a parents' heart skip a beat) I thought I was about to be hit with the infamous Santa Claus inquisition. I was ready for that one. Been there-done that. Nope. He proceeded to ask a question about his surgery. Ugh. I reluctantly answered as truthfully as I could without scaring him. That was apparently good enough, and he was on to search out the toy section. There have been so many questions just like this that come at very odd times throughout the day. Some of them are things that I honestly didn't even remember happening.

Caed is definitely doing better though. He has been sleeping through the night the past several nights. I guess he is just processing it now through all his questions. It saddens my heart that he even has to go through this, but I know it's just part of the process. And unfortunately....it's life.

This too shall pass..............

"I'm scared....

....something else is going to happen."



These were the words Caed said to me last night before bedtime. He was crying as his entire body trembled with fear. I tried desperately to calm him, reassure him all was going to be ok; however, I realized at that moment, it was deeper.

Caed has had a rough several days. He has woken up many times during the night (or while napping on the couch) crying out for me. Our first response is to ask him WHERE he is hurting. Oh God! Can this really be happening again? He never responds to us. Just continues crying. A few times he looks at us with eyes that are completely glazed over. Then when questioned about it in the morning, he has zero recollection of what took place.

One of two things might be happening: Our first assumption is that his hernia is beginning to hurt. He is currently on medication for it, but the drug the IRP team wanted him on....was NOT what the insurance company agreed to (for now). If this indeed is hernia related, I know we can begin the process to get the "big gun" drug approved. However....this might be something entirely unrelated to any kind of physical pain. Caed experienced night terrors on and off after the '2008 Crisis' as well as Post Traumatic Stress Disorder. I in no way am comparing that to the last 2 months, but am wondering if some of his fears (from ALL that he has gone through this summer) may be the cause of the night waking. ??? I truly have NO idea. We are still on the fence.

I must admit however (even though the shingles kinda blew my 'everything's fine!' cover), Caed's words last night mirrored my own heart's cry. What if something else happens? What if the next shoe falls? I am scared.

This morning in church our pastor spoke on the sovereignty of God. There were many things I got out of the sermon, but one in particular was that.....my God is BIG, no HUGE! His thoughts, plans, and purposes are completely incomprehensible to us. But they are good. I don't know what's going to happen. To Caed. To me. To anyone. Worrying about it though accomplishes nothing. It doesn't change the outcome....only robs you of living life and ENJOYING all the blessings God has graciously given.

Thank you for praying for Caed (and our family). We have been absolutely overwhelmed at ALL the love and support shown to us once again! You have blessed us!! I guess I shared all this for you to know how to pray specifically. Either we have a painful hernia to get under control or a little boy who has some tough emotional issues to get through. Or BOTH!

You will not fear the terror of the night, nor the arrow that flies by day.....If you make the Most High your dwelling - even the LORD, who is my refuge - then no harm will befall you, no disaster will come near your tent. For He will command his angels concerning you to guard you in all your ways. (Psalm 91:5, 9-11)

Happy 11th Birthday

...to our July 5th Firecracker!!

Reagan, it's hard to know where the years have gone. Seems like yesterday you were having to be lulled to sleep by the VACUUM CLEANER! (vacuum off = screaming / vacuum on = quiet) Needless to say, back in those days, my carpet was spotless! You were a very strong-willed (wild-haired) little baby/toddler with a princess-filled imagination. You have grown into a beautiful young lady with a caring, sensitive heart. Daddy and I pray that you continue to follow Jesus and grow more in love with Him everyday. HE has big plans for your life! It won't always be easy, fair, or the most fun......but TRUST HIM. His ways are always BEST...and HE will pour blessing upon blessing onto your life.

PROVERBS 3

^1-2 Good friend, don't forget all I've taught you; take to heart my commands.
They'll help you live a long, long time,
a long life lived full and well.

^3-4 Don't lose your grip on Love and Loyalty.
Tie them around your neck; carve their initials on your heart.
Earn a reputation for living well
in God's eyes and the eyes of the people.

^5-12 Trust God from the bottom of your heart;
don't try to figure out everything on your own.
Listen for God's voice in everything you do, everywhere you go;
he's the one who will keep you on track.
Don't assume that you know it all.
Run to God! Run from evil!
Your body will glow with health,
your very bones will vibrate with life!
Honor God with everything you own;
give him the first and the best.
Your barns will burst,
your wine vats will brim over.
But don't, dear friend, resent God's discipline;
don't sulk under his loving correction.
It's the child he loves that God corrects;
a father's delight is behind all this.

Praise You in This Storm

I have so much I want to write about, and yet for the last several days, I have felt completely paralyzed. I don't even know where to begin....

The last 6+ weeks have been a gradual nightmare that I begged God to please stop. The amount of pain and the severity of Caed's attacks got to the point (up until hrs of boarding the plane to NE) that I couldn't continue sitting helpless at his feet watching him suffer. I was desperately needing to cash in my 'good actress card.' Even though the sbs, colonoscopy, and endoscopy all showed his bowel looked ok (minus the finding of the hiatus hernia), we still felt it had to be Short Gut related. As I began explaining to the IRP team at UNMC what the past 6 weeks had been like for Caed, immediately Dr. M asked, "Does Caed still have his gallbladder by chance?" Gallbladder! What in the world are you talking about? No other organs need to be discussed here. ONLY bowel! I knew during Caed's initial surgery 3 yrs. ago, the surgeon did remove his appendix (along with the majority of his intestines). But, I didn't remember them ever mentioning the gallbladder. They immediately scheduled an ultrasound to find out, as well as keeping a close look at the pancreas. Caed was very scared about this "new test, " but later informed me it was now his favorite! Mine too. The dark, cool room.....with the hum of the machines lulling you to sleep while someone gently oozed warm jelly all over your tummy and back. It lasted almost 2 hrs, and Caed dozed off more than once. Todd and I of course were feeling torn. Nothing wrong with bowel = GREAT NEWS! A problem with entirely new organ = sick to our stomachs. Obviously, we knew between gallbladder and pancreas, we definitely wanted it to be gb. At this point, I knew our 3 day scheduled trip to UNMC was going out the window in a hurry. I was alone and scared.

Meanwhile, while all of this was going on with Caed......our dearest UNMC friends from NZ had just lost their 5 yr. old daughter. This wasn't supposed to have happened. They had journeyed long and hard to get to the US for Aria to have a shot at life. (multi-organ transplant x2) God had done amazing things in this little girl's life. He indeed had preformed miracle after life-saving miracle in her 5 short years of life. My heart was absolutely broken. Broken for a hard fought battle that had been 'lost.' Broken for this amazing Dad who had to let his baby girl go. And broken for a Mom who held her one and only daughter in her arms as she went to be with Jesus. This was my friend. I couldn't even fathom the pain, the grief, the hurt, disappointment....coupled with the joy, HOPE, and unspeakable peace they were dealing with. The timing of our trip to NE was 100% providential. Our apt wasn't scheduled for 3 more weeks. But, due to the (gallbladder) attacks Caed was having, it was imperative we get there ASAP.

God knew.

He knew 4 friends needed each other. He knew we each needed comfort and encouragement. We needed to say good-bye..........

I needed more last week. I needed a reality check. I needed perspective. As much as my heart was hurting for Caed, I needed to be reminded of families who would long for a simple gallbladder removal surgery. My fears then turned to thankfulness. I was thankful for God's mercy on my son. Selfishly....thankful for my 'normal, healthy, thriving 7 yr. old.' Sure, Caed has issues, chronic ones...but he is alive. Guilt soon began flooding my soul. WHY GOD? WHY?? Why do you spare some children and allow others to suffer.....suffer hard? We will never know the answer to this question and many others like it this side of heaven. But, maybe I got a glimpse.....

Aria's funeral was streamed live on the internet. Chills raced down my spine as the picture loaded and I could see my friends sitting there on the front row. Across thousands of miles and many time zones. There I was. (Seemingly) sitting right up in the balcony overlooking the congregation below. Puddles of tears formed on my kitchen floor. My heart was exploding for Anita and Hamish. I simply couldn't imagine the pain they were feeling at that very moment. The denial. And yet....the tears fell harder and longer as I watched these precious 2 raise their hands and sing PRAISES to their Holy, Faithful, Loving God. He was there! He was holding them up. And He was TRULY honored in that service. Maybe I had it backwards. Maybe Aria was the one that was 'spared.' And Caed is the one that is still left to suffer on this earth awhile longer. Either way, God knows and He has a plan. A plan that will bring Him the most honor and glory. We PRAISE Him for Aria's life. I think it's impossible to count the number of people (ALL over the world!) that God lovingly allowed this little girl to touch.



Hamish and Anita have become our life-long providential friends. The story of how God led us to each other is.....amazing! We don't know when/where our paths will ever cross again (face to face), but the unlikely friendship that was formed 2 years ago.....will last forever. We love you both SO very much!!

Now, back to Caed. The ultrasound showed everything to look great....except the gallbladder. It was enlarged, contracting, had very thick walls, and just didn't look right. So, what do you do? Take it out! I knew this was a very common surgery and people could live normal lives without them. However, Dr. M decided against doing it laproscopically and instead would cut on Caed's original incision. He wanted to take a liver biopsy (his numbers looked good, but just something you want with these SBS kids when you get a chance). Todd was able to fly up the Thurs before the surgery and stay through the weekend. Such a blessing! I was really nervous about telling Caed. This time he wasn't in shock.....bleeding internally....and close to death. We had 2 days to think about it....dwell on it, and allow our minds to go to places it shouldn't. Memories, awful memories flashed in my mind continually. We hadn't experienced "easy" surgeries and hospital stays. My mind couldn't fathom what that would be like with Caed. But, we simply had to trust God and remind ourselves Caed was still being held ever so tightly in His arms. He hadn't let go...even 3 years later. The day of the surgery was very difficult. Caed was now almost 8 years old. He had past experience and knowledge of things that 'happen' in hospitals. He knew being put on a gurney was a scary thing. He knew he would be wheeled away....alone.....with strangers, and that pain would occur. He was SO brave. Fear filled his eyes. He whispered for us to please help him. To make it all stop. And continued saying over and over how he just wanted to go home. 'Good actress card' had to be pulled out yet again as I remained cool, calm, and collected and reassured Caed this would be 'quick and easy.' (even though my heart was screaming the exact same words as Caed)

The surgery was successful. Lasted almost 2 hours. Pain did indeed pay Caed an uninvited visit over the next several days, but he was so strong and brave and did exactly what the drs and nurses told him to do. As Caed recovered those next few days, I caught myself just starring at one amazing little guy. My heart was so very proud of the person he was. He has had to endure so much these past 3 years, and yet you would never know it. His personality is magnetic. And I knew God had such wonderful plans for his life. At the same time.....my heart was also so very broken. He is 7. These past 3 years have been filled with so many tests, procedures, surgeries, medications, tubes, lines, sticks and pokes. What will be next? Yes, this surgery fixed our current problem, but will it just continue...? One problem after another for the rest of his life? Again, thankfully I don't have the answer to that question. Only ONE person does, and it's imperative at times like these we don't forget that. That ONE person has promised that He has plans for Caed's life. Plans to prosper him. To give him a hope and a future. We have to cling to those words. To trust.

Caed is most certainly our Rockstar! He is healing wonderfully. Back to his old self...minus a little slower and hunchbacked. The awful pain that he had been suffering with the past 6 weeks....is GONE!!! Praise God! We truly hope the gallbladder was the cause and now is taken care of. Caed will need to 'take it easy' the rest of the summer which will be a chore in itself for Todd and I. (please pray for us! ha) I think Caed understands....but again, he's 7.

And by the way....we have learned that this was Short Gut related. Over the past week, so many of our SBS friends have confirmed this as their children also had to have their gb's out at some point during their journey. I don't remember the entire anatomy lesson Dr. M explained to me...(or was it actually that most of it went over my head?), but it has to do with the ileum, bile salts, and gallbladder. Since Caed does not have his ileum (section between sm and lg bowel) anymore.......the gallbladder most always goes 'bad.' Dr. M said when he performs surgery on these kids for whatever reason, he always removes the gallbladder (even if it looks perfectly healthy). The surgeons here in Lubbock who took out Caed's bowel initially were not looking long term. They were not thinking "short gut life." They were solely focused on saving Caed's that night. And for that, we are thankful.

We are home. Ready to finally start our summer. I, on the other hand, came down with a case of shingles while in Omaha. I wonder how that happened?? ha I certainly have not been under any stress this past month.... I am hurting pretty bad, and medicated.....but once again questioning God's timing. ;) This too shall pass.

Here are a few pictures from Caed's homecoming Wed night. As my dad, Caed, and I made our way home from the airport, this is what was waiting for us. It was SO sweet. 12 friends/cousins painted signs for Caed and hung them on the bushes, front door, and walkway. Tears fell again that night. I was reminded of God's compassion and how He provides just what we need when we need it most. This was simple. Created by children. And yet exactly what my heart needed right at that moment.

We have been overwhelmed once again at the outpouring of love and concern for Caed during this time. Our hearts are FULL! And we are truly humbled by the thoughtfulness and generosity of so many. Our cup runneth over......






I will leave with Caed's theme verse:

Consider what God has done. Who can straighten what He has made crooked? When times are good, be happy: but when times are bad, consider: God has made the one as well as the other. (Ecclesiastes 7:13-14)

....which is how we can still praise You in the storm!