Sunday, October 20, 2019
Over 10 years ago when I first started Caed's blog, writing quickly became my "therapy" as I sat down at the computer each night to recap the day's events. It was literal, as though I needed to write down the words the Lord was pressing into my heart for them to become real and clear to me. I have found myself today desperately needing to release my heart. I have bottled things up, trying to remain strong and positive. To be the glue. To keep things running as "smooth" as possible....as a wife, mom, nurse, teacher, daughter, and friend. The truth is, most days I am on the verge of unraveling.
The past 4 1/2 months have not been the hardest days we have lived through with Caed. The years (particularly) of 2008-2010 do not compare. Yes, Caed has been admitted to the hospital 8 times with HSP, thus far, yet nothing comes close to actually having to LIVE in the hospital. Those months, both in Lubbock and Omaha, knocked the life out of us all. I am reminded of that very fact every single day. Caed is home. He is "good." He is attending school and doing lots of things any normal teenager would do. Yes, his daily medical needs are exhaustive and he has his limits, but...we have been forced to endure much worse days, much worse. In comparison, I would take these days of HSP 1000x over, compared to the early days of Short Gut. For this I am so very thankful. God has been good to us...to Caed.
Yet, being transparent, I will admit to the tremendous fear, overall sadness, and a mind/body/spirit which is beyond exhausted. Grief crept into my life on June 1, with Caed and Marilyn's diagnoses. All summer, I battled trying to be the mom and friend to both of them. Guilt consumed me. Caed's illness, auto-immune disease. Marilyn's, terminal cancer. My child needed a (chemotherapy) infusion the same day as her funeral, 300 miles away. How could I abandon my child....how could I abandon my friend?
For the past 4 months, event after event after event have entered our lives. They have been huge. I have found myself asking on more than one occasion, "What next God?...I just can't anymore...PLEASE make it all stop!" And in the same breath, so very thankful for this road, this season in our lives. I know beyond a shadow of a doubt, and from experience, it's in THESE times! These are the times the Lord uses to bend us, to mold us, and to shape us to be more like Jesus. As much as it hurts, and as much as I (humanly) want to take any pain away from my family...I know the Lord is at work within us all. As much as I sit in the stands during a football game and wish Caed's life looked like that of his friends, I know He is working in and through him. I know there are things He wants to show him, that Caed might not be as receptive to, if his life was "good and perfect and normal."
This afternoon I heard a preacher on the radio say "being thankful after your storm has passed is gratitude.....but being thankful during your storm is FAITH!" Yes! I believe it. I have lived it so many times, and yet...why is it so hard every time? My heart is guarded and full of fear. Yes, God miraculously healed Caed before...but will He choose to do so again? I don't have the answer to that question. I know God can! But I don't know His ultimate will.
I realize this post is all over the place. Just like the thoughts inside my head. Positive one minute. Full of fear the next. I am boldly asking for very specific prayer. Of course, Caed's healing is at the top! But we desperately need prayer as we wait, as we continue on this journey, through all the twists, turns and bumps in the road. That physically, mentally, and spiritually we will be renewed. We are very weak. I personally, am walking each day in a thick fog of grief. I am NOT without hope, but my body and heart are equally very sad and utterly exhausted. Please pray that the Lord will not only show us His new mercies every morning (I know they are numerous!)...but that He will also lift the fog of sorrow that has consumed my heart.
Saturday, August 10, 2019
I wish my heart would prompt me to write more often when I see them. Not specifically just this summer in regards to Caed's health. In general. Everyday. Just those small moments that we all experience throughout the course of a day. They are SO numerous, and I believe we would be stunned at just how many gifts the Lord truly gives us within a single 24 hr. day.
Life expectations take over. Not major milestones, but rather the thousands of "normal" things we do everyday. We expect to wake up every single morning. We expect food to be available at the snap of our fingers. We expect our daily work commute/responsibilities to be problem free. We expect friends, family, co-workers, even strangers to meet every need we have (and with efficiency). We expect excellence and have little tolerance for mediocrity. We expect to be entertained. We expect to not be inconvenienced in any way. We expect things to take minimal effort, while we receive the greatest benefit. We expect comfort and security. We expect to be acknowledged for all of "our greatness." We expect good health and great days. Although we would never (verbally) admit it, we expect a trouble free life.
I'll prove it! Try to mentally be aware every time you get upset during a day, from one of your expectations not being met. Then, count how many times you are keenly aware and thank God every time things go "according to plan." Our tally marks would circle the globe multiple times if we saw each daily blessing for what they really were. Gifts from God! Because they are so numerous, we have taught ourselves to not only expect them, but that we deserve them. We are so used to the "little things" (eating, walking, breathing, going to work/play), we don't see them as "gifts."
I know every one reading this has lost something/someone. A hundred times over. You understand the valley/mountaintop analogy. Life is made up of both. We will never remain high on the mountain, which tends to scare us, knowing loss is always around the corner. However, we also will not remain in the valley of despair forever. Our lives are a continual roller coaster.
The Lord has providentially led our family through a valley this summer. We believe with all our hearts that He wants to use this trial for our good and His glory. Not to harm us, but give us HOPE and a future (Jer. 29:11). By believing this, it doesn't make it any less painful. We have cried, begged, and pleaded for healing to come. It has sucked so much out of us (physically and emotionally), and there are days I feel I am gasping for breath. The past few months I have found myself back in a place I unfortunately remember and one you as well can probably relate to. You know in the movies where the scene is focused on someone in a crowded place (Times Square in NYC) and then they purposely blur all the movement surrounding them? As if to say, "here I am, surrounded by millions of people moving about, and yet I can't see or hear them. Things are continuing to spin, life is moving forward (seemingly) for everyone else, and yet I am frozen and no longer a part of it."
It's an awful place to be, yet we have all been there. Scrolling fb these days is ((HARD!)) You see everyone else's normal/happy pictures, and yet it just drives the knife a little deeper at what you have lost. Bitterness can set in quickly and oh so easily. Instead of this sounding like a scolding at all those who are posting the amazing summers you are having, ha!....let me clarify! Three months ago, it was me. I was exceeding my social media limit of postings with a daughter who was graduating high school and experiencing so many GREAT Senior memories. Our lives were not without their problems, but we were truly experiencing a high as a family, with much to celebrate. What a fool I would be to think of the hundreds of posts I have made over the years that have not caused the same sadness and bitterness in someone else crawling through their own valley. How seeing pictures of our "happy" was causing someone else incredible sadness.
So what do we do? We continue to LIVE! We continue to work and play and enjoy life's blessings. We recognize that our mountaintops may be occurring at the same time as someone else's valley. Even though it's hard seeing them in pain, we love and encourage them the best way we can, and know that soon.....the tables will turn. We will be the ones walking through the shadows, as they are dancing in the sun.
And it's ok.
Loss is required if we are ever going to truly LEARN how to appreciate all we've been given.
When you begin to see the thousands of "little" gifts the Lord gives us daily...earthy concerns (usually pettiness) fade, God receives the glory, and we gain a beautiful eternal perspective.
The problem, as I have found, is that we tend to SEE GOD so much more clearly when we are suffering. Why? Because we are hurting and our desperate. We cry out to Him and ask for our pain to be taken away. When He does, and the last cloud is lifted...where do we then turn? Inward! We instantly become "self-sufficient, " we quickly forget the pit He just delivered us from, and all of our life expectations take over again. We don't run and cling to Him like we once did...because we don't "need" Him. We've got it all under control and we imagine God yelling out to us, "Call me if you need anything else!" And that's exactly what we do. We carry on with life, rely on our own desires/"control", until the next problem comes....then we find ourselves frantically running back to God for help again. A horrible, vicious cycle.
I wish I had the magic answer to stop it. I don't. I believe our sinful nature will always cause us to turn inward. We will fight the urge of self-sufficiency and control as long as there is breath in our lungs. And we will run to God in the valleys and say "I've got this!" when on the mountaintops. As believers, it will be a daily battle we will fight for the rest of our lives.
The goal? Cling to Him EVERYDAY. Be desperate for His intervention in ALL AREAS of your life, regardless if you are on the mountain top or valley. See His fingerprints EVERYWHERE. Acknowledge that every good and perfect gift is FROM HIM. (that even includes the air you are breathing, the words He has graciously allowed you to learn to read, the sounds your ears are catching, the cool breeze or air-conditioning you are enjoying, the warm comfy bed you will sleep in tonight, the creativity of the food He has provided for you to not only fuel you, but also for your pleasure, the vibrant colors your eyes are detecting, and the hundreds of other amazing abilities God has given us with our bodies.) They are as numerous as the grains of sand on a beach. Look for them!
Our God gives GOOD GIFTS and lots of them.
Saturday, July 13, 2019
As we were driving home from Cook's yesterday, the radio was on an 80's/90's station. Normally Todd and I love reminiscing our old glory days of high school/college with each song that is played. Suddenly the first few notes of the next song made both of us chuckle. Oh! The glorious Bette Midler. We laughed how preachers (back when this song was released) loved using this big hit song "From a Distance" as the main focal point of their sermon. We quickly began talking about something else, and I never thought about it again....
Until this morning.
You know how songs, even silly ones like this one, get stuck in your head? Well, all morning I've been humming it; then appalled at myself when I realize what I'm singing. ha!
"God is watching us from a distance...."
Pure blasphemy right? Of course! That's why all those preachers loved using it as an illustration back 30 years ago.
But this morning and most every day of the past 40+ days, I think my heart has been believing this lie. Not in full, but pieces of it. This summer Caed has experienced so many things that liken an old (horrible, unwanted) friend. Been there. Done that. A thousand times over and then some. The awful abdominal pains, the frailty of his body, the logs I have to keep of everything entering/exiting his body, the scary rides to the ER, the hospital admissions, the blood draws and countless procedures/tests, each time his gurney is pushed through "the double doors," and the fears of living each day not knowing what lie ahead...
Yet in the same breath, Caed has experienced brand new things this summer. We are now having discussions with doctors regarding new organs/issues. This week, it all came crashing down on me like the weight of 10 men. It wasn't anything specific. It was the tremendous sadness of seeing Caed where we have seen him so many times before. As he fell off to sleep one night, lying peacefully in his hospital bed, it was just the two of us. The lights were dimmed, the night shift had taken over, and it seemed as though the whole 5th floor was at peace. Instead of crawling onto the "comfy" couch to catch some Zzz's myself, I was suddenly overcome... The quiet. The stillness. It hit me, hard.
The only word that comes to mind in describing my heart at that moment...was exhaustion. Not physical tiredness, although I have definitely been stretched paper thin this summer in that area. But rather, emotionally. I'm speaking solely for myself, but guessing most parents (of kids with medical issues), live with a highly guarded heart. After the initial shock of your child's diagnosis wears away, it just becomes the norm. It's simply how you live, day in day out. Medical jargon and various procedures/medications don't faze you like they once did. They are now routine. We have always felt this way with Caed. And I have always found myself performing various "nurse duties"with large thick walls around my Mama Heart. Do the job. Don't "think" about it, even for a second. But then there are those moments, sometimes just split seconds, where I think the Lord purposely tears down a portion of that Great Wall so that we don't become hardened. Pain, grief, sadness. They unfortunately are not just unwanted villains during trials, but are necessary characters that need to be confronted and even embraced. He knew my "tough exterior" heart needed to feel. Tears needed to fall. Grief needed to be released.
I let my heart cry a few silent tears that night. Not just for the things Caed is currently having to endure, but ALL OF IT! Every ounce of pain and suffering that he has been forced to swallow the past 11 years. It's an enormous amount, and as a parent, it's paralyzing to watch. The past few weeks, I honestly have felt as Bette Midler infamously sang, "God is watching from a distance...."
As I have previously shared, there has been an enormous amount of pain and suffering in my circle this summer. Not just Caed and our family, but also my precious friends, Marilyn and Colleen. I struggle, a lot! Tremendous guilt, in knowing either of them would trade my world in a heartbeat! They would give anything for an HSP diagnosis. Oh, how I am reminded of this truth daily! Yet, it's not "my suffering" compared to "theirs." It's all of it. Every tear I have been forced to shed this summer is wearing on my soul. "Where are you God?...Why Caed (again!)...why Marilyn!!!...why Devin! What on earth is your purpose?"
Yesterday morning, it came. Just like it has so many times before, and with certainty, will again in the future. The doctor finally brought us the news we had been waiting for/dreading. The biopsy results. Her thick accent was a mixture of beauty and frustration. We painfully strained to not miss a single syllable. I had her repeat herself several times just so I could hear it again. The results overall were...good. Not great. But, doable. We would have much work to do over the next few weeks/months, but it would be ok. The high wire balancing act of HSP + SBS (complete opposites in dietary needs) would be our greatest challenge. What's ideal for one is bad for the other, and vice-versa. Overwhelming thoughts spun wildly in my head. Again, "God, where are you? This isn't making sense. How are we supposed to handle both of these diseases simultaneously?"
With impeccable timing, my phone alerts me of a message. My stomach is still tied in knots of both joy and sadness. We are going home! But...heading there not only with the same issues we had when we walked in, but new ones to add to our already overflowing plate. As I opened the message and began reading, I couldn't believe it. It was exactly what I needed to hear. The exact things that I had been wrestling with all summer. "God, you say you are near....but I don't feel you anymore."
He was answering me. (through the obedience of the Spirit's prompting from my dear friend/co-worker, Kim)
Lysa Terkeurst - (excerpt from) "When Pain Leads to Praise"
"...I now have a completely different picture of God standing beside my hospital bed. He wasn't ignoring me. No, I believe it took every bit of holy restraint within Him to not step in and remove my pain. He loved me too much to do the very thing I was begging Him to do.
He knew things I didn't know. He saw a bigger picture I couldn't see. His mercy was too great. His love was too deep. Indeed, He is a good, good, Father.
He was not far off like I'd imagined I lay there with pain. He was near. So very near. Just like David tells us in Psalm 145:18, "The Lord is near to all who call on him in truth."
He was loving me through the pain. It was necessary pain - life-saving pain I can look back on now with new eyes. It's given me a whole new outlook on the times when God seems silent.
His silence was part of the rescue. And now I see pain as a reason for praise. "
So, I laugh again at the silly lyrics of Bette Midler's 1990 hit song. He's not leisurely sitting back watching. He's alive. He's acting. He's allowing/not allowing things into my life and the lives of those around me for a beautiful God-glorifying purpose. He's not far away. He's so very near. Orchestrating every meticulous detail, not to harm, but to bring good.
He's a good Father who only writes good stories.
Lord make my heart believe this truth, every day!
Tuesday, June 18, 2019
We are technically only 3 weeks into the summer, yet I’ve already labeled this as “A Summer of Suffering.” On June 1, Caed came to me with what looked like tiny bug bites all over both feet. I doctored them the best I knew how, but a day later reached out to Facebook for suggestions after the “bites” began spreading up his leg. Finally, after our 3rdattempt to get a confident diagnosis from a doctor, we were told he had Henoch Schonlein Purpura or HSP. Everything we read about this strange auto-immune disease matched up perfectly to what Caed was experiencing. A horrible rash has spread up his legs, arms, and abdomen. The worst, thus far, continues to be the severe intestinal pain he experiences; three of which have led us to the ER desperate for relief. Two of those visits ended with hospital admissions. Caed’s mobility has also suffered greatly. His movements mimic a 90 yr. old man. Numbness and painful “knots” have popped up randomly all over his body. (he hasn’t used his right hand in several days). Doctors have closely been monitoring his kidney function because HSP tends to not only cause an awful rash/ joint, muscle pain…but also can hit the bowel and kidneys. Due to Caed’s medical history having Short Bowel Syndrome (losing the majority of his gut), the doctors have been overly cautious in regards to the intestinal pain from this HSP. So far we are only on week 3 of a disease that is supposed to last 4-8+. Some days we feel sure we must have reached the peak. Then, quickly are slapped in the face when the rash and pain are more severe and widespread than ever before.
Watching Caed suffer is not new. In fact, it’s unfortunately more the norm. However, watching him lately in this amount of pain, is unexplainable. Unless you have lived it. Unless you have sat beside your loved one as they scream hour after hour in agony…and you can do nothing to help, you just can’t fathom the heaviness. The helplessness. The number of times we have been forced to do just that over the past 11 years with him…is numerous. It never gets easy.
We are certainly praying that the 8+ week estimation of the HSP in Caed’s body is wrong, and for God to show up BIG and allow Caed to heal much sooner than expected. Yet, we also are gearing up for the long haul and praying for perseverance if it indeed goes as expected. Caed should eventually heal from this, and Lord willing, not have any lasting effects. For that, to God be the Glory!
Simultaneously, the same time Caed was being diagnosed with HSP, one of my dearest best friends was also being diagnosed with Stage 4 pancreatic cancer. She was a God-send my sophomore year of college, as the Lord knew how desperately I needed her in my life. We were bridesmaids in each other’s weddings and had each of our 3 children 18 mos. apart. Right now, I just don’t have the words…my heart feels like it might explode. She is one of the best friends I’ve ever had. Oh, how God blessed my socks off when He gave me that friendship!
“A Summer of Suffering…”
Whether it is the health my own child or of my dear friend…the Lord is calling me to suffer right now. And although it is not me physically enduring the pain, the emotional searing of my soul (having to sit back and watch both Caed and Marilyn in unspeakable torment) seems almost too much to bear some days. I am in NO way comparing what these two are going through. Marilyn has been called to walk the ultimate. She is fighting for her life. There is nothing harder…
I have spoken of “heavenly anesthesia” before. It’s something I discovered probably 10 years ago when Caed was at his worst. There are days you feel numb. You see close family members and friends around you in anguish and you find yourself without tears, no emotion, as though wandering through a thick fog. People call you “strong,” yet deep down you know the truth. It has absolutely nothing to do with you, but everything to do with God. In hindsight, it was those moments I knew he was mercifully administering the perfect dose of heavenly anesthesia to help with the bulk of the (emotional) pain, yet not numbing me fully, so that I would hurt just enough to not lose reliance and desperation for Him.
The past few days the Lord has put two words on my heart: Suffer Well. He continually keeps whispering them to me, even though my flesh wants to scream out “Why won’t you just make it STOP, Lord?...if you really were a loving, caring God, you wouldn’t allow all this pain and suffering!”
Romans 8:17-18 - “Now if we are children, then we are heirs – heirs of God and co-heirs with Christ, if indeed we share in His sufferings in order that we may also share in His glory. I consider that our present sufferings are not worth comparing with the glory that will be revealed in time.”
2 Corinthians 2:4:16-18 – “So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light and momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.”
I’m still learning what it means to “suffer well”, but I’m confident what it does NOT mean. It is not happy all the time, in fact you might rarely ever see a smile. It does not live in a false reality, pretending the bad is not happening. It is not 100% numb; it feels deeply. It does not constantly have God’s word or the most beautiful Christian melody on its lips; sometimes it might even have its fists raised to God questioning His presence.
I think “suffering well” is possibly quite messy in appearance. I think it rises and falls just as the ebb and flow of an ocean tide. There will be good days. Days in which you not only feel God, but see Him in every tiny detail. You can’t thank Him enough for His tender and compassionate mercies in your life. Then…there are the bad. Days in which the darkness overshadows any glimpse of sunlight. Fear, Despair, Frustration, and Exhaustion are your ever-present companions. The night seems never ending.
Suffering well is clinging to Jesus with every fiber of your being. It is a moment by moment choice to not give satan a foothold of unbelief. It is fixing your eyes on what is unseen, and believing He is working all (yes, even the suffering) for your good and His ultimate glory.
Suffering well points others to Jesus, despite your unimaginable pain. That's just what my precious Marilyn is doing. Oh, there is hurt and agony, in the middle of the night while the rest of her world is soundly asleep. There is fear. Fear of the unknown and fear of what lies ahead. Yet, there is still a joy and a peace that passes all understanding. As the door of their home opens, it rushes out and consumes all who enter in. Are there messy, no...horrific ugly days and nights occurring in their home this summer? Without a doubt, yes. But, what we all see is that Jeff and Marilyn (and their 3 amazing kids) don't stay in the pit of despair for long. You see, they have built their marriage, their home, their lives on the solid rock of Jesus. Hurricane force winds and torrential rains are ripping through their family this summer, and it hurts....so badly! Yet, with joy they are standing FIRM. With joy they are holding tightly to a sovereign God, who promises He will NEVER leave or forsake them. With joy, they are sharing in the sufferings of their Lord. And with joy, they will one day receive an eternal weight of glory, which is incomprehensible here on this earth!
Marilyn shared with me back in January that God had given her a 'word' for this coming year. Keep in mind, her cancer diagnosis was months away. She had absolutely no idea what 2019 would hold. God laid on her heart the word "HOPE."
Psalm 33:20 - We wait in HOPE for the LORD; He is our help and our shield.
Psalm 52:9 - For what you have done I will always praise you in the presence of your faithful people. And I will HOPE in your name, for your name is good.
Psalm 71:5 - For you have been my HOPE, Sovereign LORD, my confidence since my youth.
Psalm 119:147 - I rise before the dawn and CRY FOR HELP; I have put my HOPE in your word.
Isaiah 40:31 - ...but those who HOPE in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.
Lamentations 3:29 - The LORD is good to those whose HOPE is in Him, to the one who seeks Him.
Micah 7:7 - But as for me, I watch in HOPE for the LORD, I wait for God my Savior, my God will hear me.
Romans 12:12 - Be joyful in HOPE, patient in affliction, faithful in prayer.
Philippians 1:20 - I eagerly expect and HOPE that I will in no way be ashamed, but will have sufficient courage so that now as always Christ will be exalted in my body, whether by life or by death.
Titus 3:7 - ...so that, having been justified by His grace, we might become heirs having the HOPE of eternal life.
Hebrews 11:1- Now faith is confidence in what we HOPE for and assurance about what we do not see.
Suffering well is opening your heart daily to receive new HOPE.
HOPE for today. Strength for tomorrow…
Jesus, YOU are our living HOPE!
Friday, August 10, 2018
"Jesus looked at them and said, "With man this is impossible, but with God all things are possible."
Two months have passed since my last blog post. Two months of provisions, results, gratitude, fear, anxiety, hopelessness, and tears. How can all of those things co-exist? Easy...
This all began back in January of this year with Caed's Nebraska team concerned with his lack of growth. It is a very common need in Short Gut kids, so they encouraged us to get an appointment with a Pedi Endocrinologist as soon as possible. That first step seemed "simple" enough. (insert laughter) Getting appointments with specialists, particularly when there is only one Pedi Endo team in the Lubbock area was...a battle in itself. We felt "time" was our biggest enemy, so booking an appointment 3 months out was so disheartening. From that point on, it seemed as though each and every step was not just an uphill journey, but rather a steep vertical climb that continually tested our endurance and belief that we would ever make it to the top.
For the past 2 months, insurance has continued to deny coverage for Caed's growth hormone shots. "Short Gut is not an indication for the need for growth hormone therapy." I wanted to scream! And on more than one occasion, I had to apologize to the innocent drug rep for simply delivering a message. I knew it wasn't their fault. Yet I vented to them often! "How can just being short stature warrant coverage, but when you've tragically lost 90% of your GUT and suffer from malabsorption...sorry, we can't help you!?" I was angry! SO very angry!
Maybe it seems silly in comparison to other major (life-threatening) issues Caed has gone through or others are currently fighting. Yes. In many ways, it seems so. It's "just growth." Otherwise Caed is healthy and home and acting as any other normal 15 year old boy. I knew there were worse things. We've lived through so many of them. But...this time it was different. This new issue was affecting him emotionally. We saw the change in Caed about a year ago. His personality changed. Instead of seeing a confident, energetic, funny kid...we began to see him withdraw. The gap between he and his friends (physically) was widening by the day. He knew....and it hurt.
A week ago we were told "the door had been officially closed with the drug company, " who had been working with us this summer while we waited for insurance to make their final decision. Several appeals had been made, but to no avail. Caed had been graciously given 7 weeks of free shots this summer, roughly 42 pokes he's endured. We have been so grateful! And.....drumroll please.....he has grown 1/2 inch in the past 8 weeks! :) May seem like a rather insignificant number, but it is HUGE to us! You would have thought I told Caed he grew 5 INCHES this summer....the way he held up his head and chest and confidently walked away. ANY growth means more to him than any of us know. Oh, how he has struggled!
Caed's next endocrinology appointment is this coming Tuesday. What was supposed to just be a "3 month growth check," would turn into a PLEA from Todd and I to our doctor. "Is there anything else you can do? Any other avenue we haven't tried yet? Please help us get coverage!" This doctor would be our last hope. I had already told myself that until she said the words NO...I would continue to have hope. Yet, having heard that word over and over this summer, my faith was small, so so small. I knew in my heart that if this door completely closed, God was still in control. Even though I couldn't wrap my brain around WHY in the world He would allow Caed to get 7 weeks of therapy started, only to be ultimately denied. What would have been the purpose, Lord?
Caed has been amazing with his shots this summer! Throughout his life, I have always been the one to do the hard stuff, the pain-filled necessities that he has needed (medically). Not anymore. Our little boy has sure grown up. I never once had to remind him to do his shot. Every night he would gather up all he needed and administer his shot to himself (alternating between both legs and arms). This kid is so used to be sticked and poked and prodded. Needles don't faze him in the least, but I was more impressed with the responsibility he took to do it all himself. I knew the reason. These shots were not just normal shots to him. With every needle stick, it represented HOPE to a kid who is not just suffering physically, but more importantly, emotionally.
We've discussed in length with Caed that these shots aren't magic. He isn't going to turn into the Hulk overnight...or ever! These shots will help get him to where he should be genetically. We have told him if he wants to build muscle and definition however, it's going to be totally up to him! The past week we have seen a more mature, self-driven side of Caed than we have ever seen before. He gets up early, eats breakfast, then has begun a pretty tough workout regimen (Insanity) in our garage. Todd has been able to be his personal trainer and teach him techniques, etc... Even when his dad is working, he still continues to get up every morning and push himself, alone. He's a tough kid! Outwardly he may not look it, but internally he is SO VERY strong.
We have watched Caed work...hard! Yet my heart has wanted to fall apart. I knew what was on the horizon. No more shots! How would we break the news to him? Would he understand and believe that God still had him in the palm of his hand, and obviously had a "better plan?" Could we trust that God might be telling us "he doesn't need the shots...I'm going to help him grow MYSELF!" Yes! I knew I could trust God, period. I have seen him move mountains for Caed the past 10 years. I knew in my heart that everything would be ok....even though we couldn't see it.
My heart has been trusting God the past few weeks, not for the "YES, " but rather for the "NO."
...this morning my phone rang and it was the Endo dr. My heart stopped briefly when I saw the number, yet told myself, "they're just calling to confirm our appointment on Tues." (sigh...)
The nurse quickly said, "Hi, Lori, just wanted to let you know your insurance has approved the shots!" I sat silent and stunned. I didn't understand. Just last week I had several conversations with our case manager (as well as the denial letter that came in the mail) which all said "It's over. Caed's case has been closed!" HOW? WHY? The nurse simply said "there was some miscommunication, but we got it all worked out."
I hung up the phone as my hands continued to shake. Just this morning, Caed had "informed me" that he only had 6 days of shots left. My heart sank. I sat down and tried to explain to him that we didn't have anymore because insurance wouldn't cover it...and how we didn't have an extra $2000 a MONTH to pay for them ourselves. I tried to encourage him that Dad and I would talk to his doctor and see if she could try something else with the insurance company.
One hour. Just 60 minutes later God would show up BIG in our home today! He would remind us that there are going to be times that by human standards we would be backed into a corner with no way out. There would be absolutely nothing we, nor any doctor or case manger could do. He would put us in a position in which we had no other choice than to just HOLD FAST, not to our prayers getting answered the way we wanted, but rather just to HIM. Plain and simple.
I have cried a lot this morning. Tears of joy, yes! But rather tears of just...God being God. On Monday I posted something on Facebook that the Lord was showing me. It wasn't easy. In fact, it was down right HARD! When things around us seemed to be falling apart one right after another (trust me, we had a ((TOUGH)) week in many different areas in our family, not just Caed), I kept hearing from the Lord, through various people, the same message....
"Want ME! Not just the things I can do for you! Stop worrying about them. Slow down and just SIT in my presence! I can do exceedingly MORE than you can possibly imagine. It just may not be done in the way you think. Trust me."
I can honestly say that even though all the issues I had been worried about this week were still very present, I had peace. Not because I knew God would "fix" everything, but rather...just began focusing on Him, alone. Wow! Is there ever tremendous POWER in that!
"And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:7
Thank you God for not just answering some of our prayers this week, but more importantly in HOW you did so. It wasn't easy. It hurt. Yet in your infinite wisdom you knew...we needed a reminder of your POWER and SOVEREIGNTY. You knew you needed to get us to a place in which we had reached a 'dead end.' You had the events and tiniest of details of this summer planned out impeccably. Once again, with joy (and a little laughter), we can sit back and reflect on the past 8 months and see how it was perfect. I don't believe you simply "intervened" into a hopeless situation, but rather...you were there in every detail, in every step of the way. Your faithfulness has been abundantly evident in Caed's journey his ENTIRE life, yes even in the womb as you carefully and lovingly twisted his body into knots... You had a plan for his life! Yes, there would be pain and fear and sorrow. Lots of it! But you knew. You knew the magnitude of Caed's journey would impact so many people's lives. Jesus would be made famous and you would continually show us just HOW MUCH you love us. We have been face-down in the pit of Caed's journey so many times. We could have never imagined all the twists and turns to this plot. You are the author and YOU are so good! Yes, with every tear shed, YOU have been good. With every "no, " YOU have been good. Every time we cried out to you and no answer would come, YOU have been good. This journey has been long. This journey has not ended. In days ahead, more pain will come. Yet, YOU will forever and always be our GOOD LOVING AND FAITHFUL FATHER.
Wednesday, June 6, 2018
The last time Caed needed a medical backpack, the year was 2009. It held his feedings/pump during a time when he needed 24 hr. enteral feeding via G-tube. This little blue backpack sits on a shelf up in our closet. To see it, brings both smiles and tears.
Today, the UPS man delivered a box to our door, and when I opened it, my heart stopped for a few brief seconds. Not sure I was prepared to see another backpack! The rest of the medical supplies packed inside honestly triggered nothing in me, but it was like deja vu staring at that bag.
Yet another chapter of Caed's medical journey will soon begin...
He has always been small, and of course Todd and I are neither one expecting any of our kids to be 6 ft. giants. However, Caed has always been the one that has barely hung on the growth chart for years. Finally this year, with him falling OFF of it, his doctors grew concerned. Nebraska wanted us to go see a Pedi Endocrinologist. This has not been our first rodeo with an Endo Dr. We saw one in Dallas when Caed was 5 or 6. At that time, they felt like he was growing well (considering...he was also being supplemented with tube feeds), and saw no need for any help such as growth hormone therapy, which most Short Gut kids need.
Now fast forward almost 10 years, and things have changed. He has undergone several tests and the doctor feels he desperately needs help in growing. Almost every Short Gut parent I have talked to (either in person or via FB support groups) have been shocked that we haven't needed growth hormones before now. Most all of these kids need it due to the fact they are missing the majority of their bowel and cannot absorb nutrients the way normal people do. Malabsorption has been our unwanted, evil houseguest for 10 years! People are shocked when they are around Caed very long and see just how much that child eats! "Where does he put it?" they ask. ha! I won't go there.... Let's just say 'what goes in, typically goes straight out!'
We have been on this new journey (concern for lack of growth) for most of the year. We have seen changes in Caed. Ones that have secretly bothered us. Caed is different. Sure, we still see that crazy, funny side to his personality when he's around those he trusts, but not as much anymore at school. He seems more withdrawn and has struggled greatly with confidence. (anyone who has ever known Caed, knows he has always had more than his share of confidence!) :)
Things have occurred this year. Awful things have been said/done to him either unintentionally by friends, etc....or intentionally from strangers. Mama Bear has had to restrain herself on more than one occasion. Some of it is just part of growing up. But...my sensitive heart wanted so badly to shield him from hurtful comments regarding his size. People (typically) watch their words with someone who is overweight. Yet, I've found that no filters are in place when someone is underweight. Those who desperately want to GAIN weight, but can't. Commenting to them about how small they are only deepens and twists the knife that is already stabbed into their hurting heart. And no, "just eat more!" is not the answer. At least not with someone who has lost the majority of their intestines. Pain and frequent trips to the restroom will most definitely occur, but thanks for your "expert weight gaining tips." Lol Caed's doctors always used to laugh and tell him "Hey, look on the bright side (of SBS)...you'll NEVER have to go on a diet!" It's true, and we are thankful for that. I'm betting as a girl, that would be the best news ever. For a teenage BOY...not so much right now.
There are still a few hurdles to jump over and we are praying (no pleading!) with God for a full green light. Yet not forgetting all the ways He has got us to where we are sitting today. We continue to wait (almost literally) on pins and needles, as well as pray for his body to absorb the hormones. We honestly have no idea how well it will work or how much time his body has before his growth plates close.
This decision has not been made lightly. I was terrified in the beginning. Yet...the alternative (stop growing altogether) scared me more. We didn't want to do anything that would cause him more harm. Peace is now overflowing, and we are thankful for doctors who not only stay on top of his health (even though we are 1000 miles away)...but also just love our boy and want what's best for him.
So we wait. Patiently, expectantly, and full of hope.
"He who began a good (miraculous) work in you, Caed, will bring it to completion at the day of Jesus Christ."
Thursday, March 1, 2018
It's March 1, 2018. As I stare at the date, my mind instantly is overwhelmed. Has it really been that long? Caed is 14 1/2 years old today. This afternoon you will find him sprinting and jumping in this year's first track meet of the season. His coach called him the "Flying Squirrel" last year. He's fast... and can fly. Not only does he have 3 short months left as an 8th grader at Idalou Middle School, more surprisingly...he will be in HIGH SCHOOL next fall!
Caed was 4 1/2 years old when his life instantly changed on March 1, 2008. Trauma struck his body that day, as his surgeon shook her head in disbelief that he had survived it all. Todd and I, of course, found ourselves sitting in the PICU in paralyzing shock over what had just transpired.
To reflect back over the past 10 years and everything this child (and our family) has endured is bittersweet. On one hand, flashes of the most painful months/years of my life can literally suck the breath out of me. Yet, to look back...also forces us to see where we are today. For those that walked (no, belly-crawled) this journey with us from day 1 are possibly as speechless as I am finding myself now. Are we really here? Did we honestly survive that horrific nightmare?
The days were long. The nights were even longer. The separation of our family was almost too much to bear at times. All we were....was instantly gone! To adequately summarize the past 10 years of Caed's health is rather daunting; however, these numbers help put in perspective the magnitude of our miracle:
4 - years old when Caed's midgut volvulus surfaced
19 - days I had with my newborn son before "losing him" for 9 months
4 - days on the ventilator
10 - days spent in PICU
8 - surgeries
90 - percent of small bowel lost
40 - percent of colon lost
4 - blood transfusions
1 - NG tube
3 - catheters
23 - times under full anesthesia
15 - Upper and/or Lower GI's
7 - endoscopies
3 - CT scans
1- J tube
3- nasal feeding tubes
6 - G-tubes
5 - intestinal drains
12 - adverse drug reactions
7 - hospital rooms
73 - consecutive days spent at Covenant Children's Hospital in 2008
117 - days before Caed or I stepped foot back in our home (weekend visit only)
158 - consecutive days of vomiting up to 8-10 times/daily
9 - trips to the ER
164 - days on TPN
1 - Home Health nurse
2 - staph infections in his central line
4 - play therapy sessions for Post Traumatic Stress
84 - consecutive days living in Omaha, NE for Intestinal Rehabilitation
260 - days with a central line
44 - flights Todd took back and forth from Dallas to Lubbock to Omaha
278 - consecutive days away from our home in Celina
283 - consecutive days our family of 5 was separated
25+ - doctors caring for Caed
3 - times with c-diff
437 - days Caed wore an enteral feeding backpack
7 - more trips back to University of Nebraska Medical Center in Omaha
10 - weeks on antibiotic therapy for bacterial overgrowth
1- unbelievable Make-A-Wish trip
1 - hiatal hernia
1 - gallbladder removal
3 - incision revision surgeries
4 - bowel preps
13 - weeks burning his incision with Silver Nitrate
2 - open surgical wounds which had to be packed for 6 weeks
365 - days Caed's gallbladder/incision issue lasted
541 - days Caed was not allowed to swim or take a bath
1, 520 - approximate days Caed had a feeding tube
4 - bone scans
1 - ambulance ride to ER
150 - dollars Caed collected in his "penny bank" for his smiles
1,000 - dollars for 1 month supply of Caed's enteral formula
865, 000 - dollars of largest single medical bill
2,000,000 - dollars in total medical charges thus far...
600 - blog posts...and counting
1 - amazing MIRACLE who was chosen to walk an incredibly tough journey
10 - years the Lord has shown His Faithfulness in our new world of Short Bowel Syndrome
countless..... - abdominal x-rays
countless..... - syringes and other medical supplies used on a daily basis
countless... - vials of blood drawn over the past 10 years
countless..... -nurses who loved Caed deeply
countless..... - cries and screams in agony from Caed
countless..... - times Caed asked "When will I be normal again?"
countless..... - times Todd and I cried out to God to heal our son!
countless..... - tears shed from all who followed Caed's story
countless..... - family and friends who met tangible needs
countless..... - prayers, cards, gifts, visits (from strangers around the globe) which BLESSED us!
countless..... - ways God has and continues to show His Faithfulness...
"Your eyes saw my unformed body; all the days ordained for me were written in Your book before one of them came to be." Psalm 139:16
God continues to be so so good to Caed. Not only has healing taken place in his physical body, but more importantly, the Lord has "healed" Caed's heart too! More on that story later...
Currently, we are waiting to hear back from our endocrinologist. Nebraska has been concerned with Caed's lack of growth (which is obviously very normal in Short Gut patients). If he has a delayed bone age, that's a great sign! He still has plenty more time to grow. If, however, his bones measure that of a 14 year old....he is running out of time. The doctor has a plan of action if that is the case, and we have felt nothing but peace after meeting her and discussing Caed's history. Definitely an answer to prayer!
God's faithfulness continues.....