A caregiver truly needs to take care of herself. Since May 2018 my focus was not so much on healthy eating.   Every bit of my energy was focused around John and his needs. I didn’t put my physical needs ahead of my husband’s for obvious reasons. I traveled three hours a day (nearly 1000 miles per week), every day while he was at UVA. At this point, I was losing my hair and both my hands developed eczema.  It’s amazing how our bodies react during stressful times in our lives, isn’t it? It’s so important to take time to rest our bodies and take care of them.

Because it was winter, I would leave the hospital around 3:30 and try to get home before 5:30 because I don’t like to drive in the dark.  Too tired to cook dinner for myself, I would often order out. Healthy nutrition was definitely not the goal at this time. Not only did I have to take care of John’s chores, but all of mine as well. I was not able to catch up and get things done on the weekends because John wanted me there with him.  Each night, I would finally crash in my recliner around 9:00 and promptly fall asleep. John was not the type of patient to understand about all that I had on my plate. He was in a strange place and wanted me there no later than 8:30 every morning. I would stay all day and there were times when I was unable to leave by 3:30 because we would be waiting to talk with his physician. Those days were especially long.  I had absolutely no time to myself and in hindsight, I can now understand why my body was exhibiting physical signs of distress. 

John had responded very well to the nutritious IV’s and was now healthy enough to undergo surgery. On January 15th the doctors performed an ileostomy.  Procedure began at 3:00 pm and it required two surgeons to work on him at the same time. I prayed with both doctors and asked God’s blessings upon them and that He would guide their hands as they worked on my beloved. We were told that the operation would take anywhere from four to six hours.  His surgeons expected it to take every bit of six hours because of all the scar tissue from John’s previous hernia surgeries. My dear friend, Sandy, and my son Adam, sat with me as we waited for the results. Countless prayers were being laid at the Throne of Grace by friends and family. Psalm 77:14; “Thou art the God that doest wonders: thou hast declared thy strength among the people.” 

We all prayed that the Lord would show up in a mighty way and display His power and grace…and that He did!  Surgery took only three hours! The surgeon called at 6:00 p.m. to notify me that all went better than expected and without any complications!   Oh, how we rejoiced!!!  We were all relieved and in tears! The Lord had answered our prayers!  Sandy knew we’d be there late waiting to see him so she had reserved a hotel room so we wouldn’t have to drive all the way back home that night. 

We got to see John around 9:00 p.m. He was awake but still very groggy – they had him on some pretty strong painkillers. Despite all that, he was in good spirits and resting comfortably!!  Thank you, Lord Jesus!!!  

Needless to say, I didn’t have any trouble falling asleep that night!   

asleep that night!   

This day began like a spiraling roller coaster ride! Little did I know that this would be the reason why the Lord allowed me to stop working. This night, January 8th, 2019, would mark the beginning of a long and arduous road of caregiving as never before: a period of time when I did not take the necessary steps to look out for my own physical and emotional needs.  My body was completely drained and, unfortunately, I ignored the symptoms and plowed ahead. A mistake that caregivers often do!

My youngest son, Adam, and I drove down to the University of Virginia’s Hospital Center to meet the Medevac unit. At this point, I did not expect my husband to survive. He was ghastly thin and weak – a mere 124 pounds! He had a dangerous blood clot just waiting to cause a pulmonary embolism. What is that? In John’s case, this pulmonary embolism could possibly occur due to a blood clot coming from the veins in his leg and going to the lungs. This condition is known as deep vein thrombosis. It seemed that my beloved husband’s body parts were lined up like dominos and the first domino fell when this whole ordeal began on May 21st, 2018. It seemed each day had another “domino event” and I felt overwhelmed by it all! The caregiver must keep her eyes focused on God’s will and plan and not her own.

We arrived around midnight and John entered UVA in the wee hours of January 9th. He was very close to dying according to the ICU nurse. As everyone knows, tests don’t happen immediately nor do they happen one right after the other.  Much time was spent waiting and waiting by Adam and I… as we prayed for answers. We all knew that it was serious. Finally, we were told to go home around 2:30 a.m. as there would not be any test results until morning. It was such a comfort to have Adam with me. He did the driving and I was able to calm my spirit. I recall that still small voice of the Lord impressing upon my heart. 

Isaiah 41:13 reminded me that He will help me through this storm…..fear not my child! How blessed we are to have a loving Heavenly Father who gives us comfort through His word!!

Isaiah 41:13 reminded me that He will help me through this storm…..fear not my child! How blessed we are to have a loving Heavenly Father who gives us comfort through His word!!

The Commute:

This marked the beginning of my daily treks from Warrenton to Charlottesville. It’s only 69 miles and should only take an hour and 20 minutes.  However, because Charlottesville is a college town, there’s a lot of traffic! It would take me at least an hour and a half, if not more. Doing this twice a day was exhausting; especially the drive back home at night. On occasion, I would stay with Adam since he lives only an hour away from the hospital.  What a blessing! I’m so very thankful to have sons who were right there. Both their wives would reach out to me regularly and encourage me! Family is so important and I thank the good Lord for mine!

I arrived home around 3:30 and was able to get a few hours of sleep … then drove right back down to UVA to be with John. The doctors scheduled another colonoscopy for the 10th so they could have the latest information before surgery which was crucial. 

John was not too happy about having to, once again, drink the prep solution. In fact, he downright refused to do so because he had undergone two previous colonoscopies not too long before. But, the doctor was finally able to convince him that the procedure was absolutely necessary; so John relented and agreed to go through with it.  My day was spent trying to get him to drink the prep. They were giving him pain meds to help him, but being so thin and weak, I spent a great deal of time trying to keep him awake. At this point, John’s weight was critical. In order for surgery to be a success and give him a fighting chance at healing, the Nutrition Doctor would begin a weight gain regimen which would include nutrients and fats. Later in the day, a nutrition line was inserted in his upper arm and he was to be given two bags: a bag of liquid fats and a bag of nutrients daily, along with blood transfusions. The blood transfusions always seemed to perk him up but he was far from being out of the woods. He was still passing blood so his hemoglobin levels were consistently low and because of this, had to be constantly monitored.  Any time they were below 7.0, he would have to be given another transfusion. 

January 11th was a good day! I was glad to have some positive feedback at this point. The colonoscopy was done and we were told that surgery could proceed if John responded favorably to the nutritional treatments. His large intestine was diagnosed with ulcerative colitis. This poor man not only had Crohn’s Disease in his small intestine, but now this. With the large intestine soon to be removed in the not-to-distant future, that problem would be alleviated. I pled with the Lord, as David the Psalmist did:

On January 12th, John was moved out of ICU to the progressive care floor!!! Praise the Lord!!  He had heard my prayer and was working on John’s body. Now began the work of getting him healthier and preparing him for surgery.

The end of 2018 was spent going through the motions of Christmas and New Year’s.  John was on a downward spiral and there was nothing I could do to stop it! My beloved had lost a total of 60 pounds at this point and he looked like a Holocaust survivor. 🙁  He weighed 187 when this journey began. Oh how helpless I felt …my heart was breaking!! I was watching my precious husband dying before my very eyes! Lord, please, I beg You to work a miracle because this is what it would take. Diarrhea was frequent and Crohn’s was causing John to bleed more and more.  Each time we were in the hospital, they could not determine the origin of the bleeding but attributed it to his intestines. He was starting to get weaker and would probably need yet another blood transfusion in the not too distant future.

My worst fears came true on January 7th, just eight short months ago! I called John to dinner and I heard him get up out of his chair and walk toward the kitchen.  I was setting the table and as I turned around, I saw him falling forward in the hallway, half way into the kitchen! It was like in slow motion: he reached to grab the refrigerator to regain his balance but fell flat on the kitchen floor, face first. He cut his forehead a bit and was bleeding.  I tried to pick him up but he was dead weight! He was laying in the center of the hallway and I could not roll his body one way or the other. “Oh Lord, please help me,” I begged in prayer!  Both my sons live about 30-45 minutes away and I could not imagine John laying there for that long.  I called Tripp, our “son from another mother,” to come help me get John off the floor. Meanwhile, I cleaned and bandaged his forehead, praying all this time that Tripp and I could convince him to go to the emergency room. Tripp arrived less than 10 minutes later and was able to help John get back up on his feet.  How I thank the Lord for this dear friend who came to assist us in our hour of need!

God’s Word says in Psalm 18:1-2 that He is our rock, our fortress, and our strength! I trusted in the Lord to provide help for me and He surely did! Tripp filled in where my sons could not.  Being a firefighter and trained to handle medical emergencies, he felt John’s blood sugar might be off. The count was in the mid 300’s, according to our glucometer!! John’s speech was also slightly slurred and he insisted it was due to his diabetes, but we suspected differently.

After much convincing, we were finally able to get John to the emergency room.  Once there, it was like being on autopilot. We had done this so many times! Tests were ordered and John’s sugar was only slightly elevated. I went home to get his glucometer so we could compare it with the hospital’s at the next blood check. It turns out that our glucometer needed to be replaced. Thank God this “error” brought John to the ER.  We could have lost him that night. Tests revealed an elevated white cell count and the doctor wanted to find out why so he ordered more testing to be done. Since there weren’t any beds available in the Progressive Care Unit, John was placed in the Intensive Care Unit.

Once again, God was working in the background for John’s benefit!  He would end up being exactly where the Lord wanted him to be!  

About an hour after he arrived in ICU, the Hospitalist noticed swelling in John’s right leg and ordered a doppler ultrasound to be done. This is when they discovered a clot!!  Had he been in the Progressive Care Unit, they may not have been “looking” for this at all. Once again, the Lord put John exactly where he needed to be in order to fulfill His plan! Praise be to God!

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Although this hospital was equipped to deal with clots and strokes, they were not equipped to deal with excessive bleeding caused by Crohn’s Disease. Due to this complication, there was a possibility that the clot could travel to his lungs!  He was given fluids and blood through IV’s and the decision was made to Medevac John to the University of Virginia Hospital in Charlottesville, where his specialist was.  It is hard to put into words how I felt at that very moment.  As a wife and caregiver, it was such a difficult and fearful time.  The uncertainty of what was happening was so stressful. Your loved one is suffering and in danger……you feel absolutely powerless.  My mind was racing…..is John going to be alright?  Will this clot find its way up to his lungs before he gets to UVA?  Oh Lord, I prayed, please protect my dear husband…..give us both the strength and grace needed to persevere in this ongoing and unpredictable trial. I was told that the stress (emotional and mental) carried by a caregiver will surface in some way at some point in time if the caregiver doesn’t take take of herself/himself. This was something I was going to have to concentrate on because I truly felt like I could not go on anymore.

As soon as John arrived at UVA, more tests were ordered to determine if he might have experienced a stroke and, thanks be to God, test results came back negative.  However, his leg and part of his face were still swollen.  His specialist was also very concerned regarding his massive weight loss.  So much had to be done in order for John to be healthy enough to undergo and survive the surgery.  This day would mark the beginning of a very long stay at UVA.

To view Day 14 click here

The days all seemed to blend together at this point – filled with taking care of John and trying to keep up with work.  I was exhausted and some days were a blur. But, the Lord knew what was needed in my life, as well as John’s, in the upcoming days. Isaiah 40:28-31; “Hast thou not known? hast thou not heard, that the everlasting God, the LORD, the Creator of the ends of the earth, fainteth not, neither is weary? there is no searching of his understanding. He giveth power to the faint; and to them that have no might he increaseth strength.  Even the youths shall faint and be weary, and the young men shall utterly fall: But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.”

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As if John’s illness wasn’t enough, I was forced to quit my part-time job. I was so disappointed because it was a joy working with great people. My heart was broken but I knew the Lord’s will was better than my own. Jeremiah 29:11; “For I know the thoughts that I think toward you, saith the Lord, thoughts of peace, and not of evil, to give you an expected end.”  God knew what was coming but I did not. That was my comfort and encouragement. This was my testimony to others who would ask me why I wasn’t frightened.  Notice the verse says that God’s thoughts for me are NOT evil, but thoughts of peace!! I can only have that peace if I rest in His care and His plan for not only my life, but John’s as well!

Right before Christmas, John was given the go ahead to have the surgery to remove his large intestine in early January. God said that He had an expected end for us but what was that end to be?  Now that we had a date, it seemed to make the procedure definite. Countless trips to UVA had to happen prior to surgery. Whatever circumstances we would have to face, we had to leave all those worries and trepidations in the Lord’s capable hands and rest in His care.

The sounds of Christmas made this difficult time much more bearable for me.  I love everything about Christmas: the cold weather, the songs, the festive spirit! All these helped me to focus on the Lord and what He went through so that we could be saved! God Almighty left His glory and throne in order to come to earth as a baby. He knew what the earthly physical life had in store for Him, yet He did this anyway; just so we could be saved! Oh how He loves you and me!

O Holy Night is my favorite Christmas song.  To me, it is the “Amazing Grace” of Christmas music. I especially love the second stanza and chorus. 

Truly He taught us to love one another;

His law is Love and His gospel is Peace;

Chains shall He break, for the slave is our brother

And in his name all oppression shall cease,

Sweet hymns of joy in grateful Chorus raise we;

Let all within us praise His Holy name!

Chorus

Christ is the Lord, then ever! ever praise we!

His pow’r and glory, evermore proclaim!

His pow’r and glory, evermore proclaim!

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The family gathered together and tried to go through the motions, despite John’s illness. There was absolutely no way to make the holiday joyous due to the pain and suffering he was experiencing. All of us were trying to care for him and help him to feel “normal” but we weren’t very successful. John was with us but he “was not really with us”! When you love someone with the deepest of love, you would rather go through their trial than to have your loved one suffer!

I so looked forward to the surgery date of January 4th.  A new year – a change in John’s body with hopes of Crohn’s disease being gone! But on the other hand, I was anxious because John is not the usual patient. What else could possibly happen after surgery?  Would there be any postoperative complications that would emerge?

January 4th, 2019, came and we anxiously went to UVA – we had to be there by 7:30 a.m.  My dear friend came to sit with me and I was so happy to have her near for moral support. We were directed to the surgical waiting room in order to sign in and then wait until they would take John back. They gave us a buzzer (similar to those you get in a restaurant) that would vibrate once it was his turn. About an hour later, the buzzer went off and I went to the desk to turn it in.  As I turned around, I took one look at John’s face and exclaimed, “John, your face is drooping!” The lady at the desk heard me and called the stroke team.  Within two minutes they showed up but his symptoms had totally disappeared! Needless to say, the surgery was postponed and we spent that entire day and night in the emergency room.  Tests were ordered and it was concluded that John had experienced a mini stroke, known as a TIA. No new clots were found in his brain or anywhere else in his body. It was determined that it was caused by low potassium levels and a low hemoglobin count. But to be on the safe side, they put a 30-day portable heart monitor over John’s heart so that it would record any AFIB episodes, should this be the reason for the TIA.

It wasn’t until midnight when we were finally released. It was a long drive back (almost 2 hours) and we were both exhausted. Surgery had been postponed indefinitely.  My heart sank! John was exhausted and slept all the way home. All sorts of thoughts went through my mind. Was this surgery ever going to happen? When, Lord, would my beloved finally see some relief?

Click here for Day 13.

Can you believe that at this point of the devotional, we are already at November 21, 2018? We had our visit with John’s specialist and surgeon and both of them recommended that his entire colon be removed. Oh dear Lord, I prayed, that is so drastic!  Lord, You have to show us the way and give us wisdom to make the right decisions as this is a permanent “fix.”  We knew that once the large intestine is removed, there is no turning back.   

How we needed guidance in making this most difficult decision!  I lifted my heart and soul to my Heavenly Father praying: Lord, please show us what to do!

Once again I found myself sitting by the window and watching God’s beautiful creation. This Thanksgiving was to be very different from any other Thanksgiving Day in my past. There was no physical rest to be had. I’m an early bird and wake up no later than 6:00 a.m. I’m thankful for that because this is the only moment  I really have to spend time with the Lord and be by myself without caring for John. Caregivers have to take advantage of their alone time as much as possible. I was told multiple times by family and friends that I needed to take care of myself as well. Little did I know at the time that this was wise counsel. I felt myself physically and emotionally starting to drag. The only good thing about my personal life was that I was drawing closer to the Lord. 

But, on this Thanksgiving morning, I was in desperate need of a hug from the Lord!  John was so sick and frail. He cried in pain and anguish and I felt so very helpless!  Oh how I wanted to take this trial away from him! I truly would have been happy to carry that burden for my beloved!  All of a sudden, what I saw from my living room window was God reaching down to me! I’d only seen this squirrel once before.  He answered my prayer by sharing His beautiful creation! An Albino squirrel is quite rare and HE shared it with me! Oh how He loves you and me!!!  God lifted my spirit that day and gave me the spiritual energy to carry on with my mission. 

Thank You, Lord, for your endless grace! 2 Cor. 3-4;  “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God.”

We had been invited to join our dear friends for Thanksgiving dinner at Columbia Grill in Manassas Park. At this point, John had lost a good 40 pounds.  I was praying that the bountiful meal he was about to experience would energize him. This picture was taken at that meal and it truly shows the weight loss! It just did not look like my husband 🙁 I recall thinking how empty he appeared. His whole life revolved around pain and he tried so hard to enjoy the moment. Most foods tasted salty, although they weren’t. His taste buds just did not want to cooperate that day. I asked the doctors about this and they had no clue as to why he was experiencing this symptom. My husband has always been “the exception to the rule.”  Normally, medications list a whole slew of side effects and the average patient won’t experience any, or maybe just one.  But John, on the other hand, would and even invent one or two of his own. 

That’s why being a caregiver can be such a challenge.  I never knew what the day would have in store. I could not even trust in doctors or their prescribed medications because I knew that John was not the “typical” patient. I have to admit, it was very frustrating.  My sons and I would be encouraged by the doctor’s comments of how great this new medication was and how it could really help John.  Then a week or so later, he was not feeling any better and the wind was, once again, taken out of our sails. ***Sigh***  I am so thankful that God has me in the palm of His hand and knows exactly what I need, when I need it!  I trust in Him to do the same for my precious husband. 

Click here for Day12.

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The Lord was calming me in the midst of my storm and I was so grateful! John was still in the hospital and finally the Prednisone was kicking in and the inflammation was subsiding. It was discovered, however, that he had a type of e-coli infection and a round of antibiotics was added to the mix. Doctors said John could have contracted it from a buffet food bar or public restroom. My oh my, would this force us to be housebound? I was praying that he would be out of the hospital for his birthday, October 21, 2018, and the Lord heard my prayer! John was released from the hospital on October 15th with instructions to schedule his first Cimzia infusion. Although he was feeling better, the symptoms still existed and we had not seen any reprieve from the frequent bathroom stops. 

I was born again in 1980 and still had great faith that my Heavenly Father would step in and “save the day” and bring an end to all of this! I truly did! Surely this trial would have an end!  But, my storm continued and the dark clouds hovered. God’s mercy was endless and He continued to strengthen my heart through His precious Word, regardless of what John and I were going through. I would lift my eyes unto the hills crying unto the Lord for help.  So many tears fell during those difficult days of uncertainty.

I often wondered how many bottles were on my shelf in Heaven? God has every tear written down!  This verse, found in Psalm 56, shows a beautiful depiction of the depth of the Father’s love for me!!! 

On top of spending my days with John, I had all of his day-to-day chores to do including my own; paying bills, housework, cooking, dishes, laundry, groceries, trash, etc. I was still working part time so my hours at home were numbered! (John was still able to care for himself while I worked so I prepared meals ahead of time and all he had to do was heat something up.)  Each working day, I was a tad nervous driving home from work, anxious to see what was in store when I walked through the door. Would the Prednisone cause John to be agitated and angry today? What hurdles would I need to jump over once I got home? But still, I praised my God because He always sent an encouraging Bible verse, song, or words from my sons and friends. Oh how He loves you and me!! 

How often I beseeched the Lord’s throne of grace asking: “When will You bring this storm to an end?  How can I continue? How can I live another day bearing this burden?” 

I remember praying that I wanted to be able to hear His still small voice during my raging storm! I needed to hear from Him every day just as much as I needed to breathe! My God was so faithful, each…and…every…time! So I continued to lift my heart and my voice to Him in prayer and in song! I praised His Name to those around me with each word of encouragement the doctors gave – with each ray of hope the Lord provided. If John was in good spirits when I arrived home from work, that was my Heavenly Father reaching down and hugging me … AND John, for that matter! 

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Psalm 23 has also been one of those “go to” books when I need encouragement.  Did you ever notice how David said, “The Lord is MY shepherd”?  David did not write, “The Lord is a shepherd” or “The Lord is as a shepherd.”  No, Jesus is MY Shepherd and He treats me as a shepherd would treat his sheep. When a sheep is hurt, the shepherd carries that sheep on his shoulders to give it rest and time to heal. When the sheep goes astray, the shepherd uses his hook to draw him back. My Shepherd carried me while I was hurting and I thought about this and personalized these verses from this blessed psalm to my needs of the day. When I took my eyes off Him, He would gently prod me back to focus on His Word and He set me straight. Praise the Lord for the living Word of God! It ministers daily to those searching for answers!!!! I never wanted my testimony to be one which indicated that God was not able… for He most certainly was able to carry my burdens!  Matthew 11:28-30; “Come unto me, all ye that labour and are heavy laden, and I will give you rest. Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls. For my yoke is easy, and my burden is light.”

Click here for Day 11.

29. July 2019 · Write a comment · Categories: Devotionals · Tags:

Living day-to-day with Crohn’s is a difficult life filled with pain and suffering.  Some days were better than others but not a day went by that John was not hurting. If you’re a caregiver who is not related to the patient, you are able to separate yourself from this. However, as a spouse, I felt as though my heart was being ripped out of my chest. I wanted to take away his pain away so that he could have a  “normal” day for once!  At the beginning of this journey, there were more good days which gave him reprieve.  Oh, how that comforted my heart! However, as they say, it was just the calm before the storm. There would come a time when reprieves would be few and far between for my dear husband, or for me. I thank the Lord that I could not see what the future held because I would have wanted to give up!

Here we were, October 9th, 2018, and John’s poor bottom was on fire due to anal fissures. It seemed as though there were weekly phone calls to the doctor’s office to provide John with various compound prescription creams created to help soothe and provide relief. Unfortunately, the prescription’s directions only allowed for 4-5 uses per day and he needed to use this after each time he went to the bathroom, which was 15-20 per day! He went through countless prescriptions – not all pharmacies are equipped to do compound drugs so I had to drive back and forth to another city in order to get these.

How my heart grieved as I watched John hurting so much! There was nothing I could do to help him. I felt extremely helpless 🙁 So the things I could do, I would strive to do my very best. I would cook meals that he was in the mood to eat. Most of the time, he would want soup. I would make home made soups, filled with nutritious ingredients to try to boost his immune system. Little did I know at the time that the countless medications he was on would change his body chemistry.  John’s taste buds changed and everything tasted extremely salty. What a challenge it was to think of things to make because he had no appetite. He was so skinny at this point. He was down to 130 (he started this journey at 187)! John looked like one of those pictures of a Holocaust survivor. My heart just  broke. I pleaded with God to heal him! This prayer was on my lips continually! My strong healthy husband with muscle and strength was now a tiny man with no muscle mass whatsoever. 🙁   

I seriously thought I was going to lose him at this point!

But God is faithful, Amen? He doesn’t leave us abandoned and without hope! He is ever ready to help and provide for His child. God doesn’t always calm the storm, but He does calm His child, amen? I don’t know how the unsaved do it during tempestuous times in their lives. I just don’t!  What would I have done without my Lord & Saviour? Both my sons live about 45 minutes away. They actually live less than 20 miles away but Northern Virginia traffic can make it feel like a thousand miles sometimes. I would have leaned on them more but that was not always possible or feasible.

The blessing that came from that is it caused me to whole heartedly lean on the Lord to supply each and every need!  This is what God wants – He wants us to realize that He is there to lean on and to help us during our times of trouble. And that He did! He calmed my spirit daily and healed me through His Word so I could be a better caregiver to my beloved husband!  My precious Lord also gave me strength and grace to persevere as I faced each new day with all its challenges.  Phil. 4:6-7; “Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God. And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.”  If I had thought too much into the future, I would have been overwhelmed by the circumstances. Praise the Lord that He is faithful!!

Click here for Day 10

26. July 2019 · Write a comment · Categories: Devotionals · Tags:

With this next step of bi-weekly and monthly infusions of Remicade, we had a hope that John would begin to feel better. Unfortunately, this was not the case. The infusion had no effect on John whatsoever! It was then that I realized my hopes were resting in a medication and not the Lord. God reminded me that He was in control and He would not forsake me or John! Deuteronomy 31:6 – Be strong and of a good courage, fear not, nor be afraid of them: for the LORD thy God, he [it is] that doth go with thee; he will not fail thee, nor forsake thee.

Yes, Lord, You are right! In my heart I began to accept God’s will, not John’s, nor my own. God’s will may be something totally different … but one thing is for certain, it will be perfect!!! His love for John and I is perfect and pure and He wants us to have a perfect peace. I knew there was a reason my poor husband was going through all of this pain, but I surely did not know that reason at the time. I pleaded with the Lord each morning (and throughout the day as well) as I sat in my chair! I remember distinctly talking to the Lord saying, “Father, what are You trying to teach me? What do You want me to do? Please, Lord, give me the right words to encourage John. I can see how discouraged he was through his weakness!” I would leave my tears there at my chair, not wishing for John to see me. It reminded me of Psalm 56:8-11 Thou tellest my wanderings: put thou my tears into thy bottle: are they not in thy book? 9 When I cry unto thee, then shall mine enemies turn back: this I know; for God is for me. 10 In God will I praise his word: in the Lord will I praise his word. 11 In God have I put my trust: I will not be afraid what man can do unto me.

One thing I had learned throughout my years of walking with the Lord, whatever we experience in life, we should use that experience to help others. 2 Cor. 1:4 Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God.  Would this be what God had in store? I have seen one of my dearest friends suffer with fibromyalgia for years. But, the testimony of her faith in the Lord and His faithfulness never failed. She used her illness for the benefit of others and I learned from that.

At the beginning of September, we had a follow up appointment with the Specialist. He suggested running tests to see how John’s body was responding to the Remicade. We received a call with the results a week later. John’s body was forming antibodies against the Remicade and these antibodies were fighting against the medicine. This was why he was not responding to the treatments. I can’t say we weren’t disappointed but I trusted in the Lord that He had other plans. He lovingly reminded me of my life’s verse Proverbs 3:5-6. And, yet again, I would turn to His word and encourage myself in Him. The Specialist said that this was not unusual and started John on a different infusion called Cimzia. I remember praying and asking the Lord to please let this be the medicine that He would work through.

On September 20, 2018, I came home from work and John’s speech was slurred and his face was drooping. I hurriedly took him to the ER.  Sure enough, my beloved had a stroke! Countless tests were performed and thankfully there was no bleeding on the brain according to the CAT scan. The MRI showed no clot or plaque in his heart and arteries and his heart was in great shape. The Neurologist said the stroke could have been due to low hemoglobin count since Crohn’s was causing blood in John’s intestines. They administered what was to be the first of many blood transfusions.  The transfusion helped immediately, along with some fluids, and after four days in the hospital, John was released. The picture to the left somewhat shows you how John appeared. Please take note of this so you know what to look for in the one you are caring for. 

However, the very next day, I noticed his speech was once again slurred so the doctor recommended he go back to the ER for more tests. He was placed in ICU and more tests were ordered. They thought John may have an infection in a heart valve so they performed a TEE. A transesophageal echo (TEE) test is a type of echo that uses a long, thin tube (endoscope) to guide the ultrasound transducer down the esophagus (“food pipe” that goes from the mouth to the stomach). This lets the doctor see pictures of the heart without the ribs or lungs getting in the way. The test showed that John’s heart valves were in good shape! Praise the Lord! They administered another round of Prednisone through IV and, as before, John’s body responded well and he began to feel better. His stools became less watery and the constant diarrhea he was experiencing slowed down – thankfully this was a remarked improvement.  A week later, he was released from the hospital.

What a roller coaster ride!!! Crohn’s causes so many other problems in the body – it’s like a domino effect. I wondered what would come next. Now, not only did my husband have Crohn’s but he was also a  diabetic and now we added stroke history to the mix. I remember praying, “Oh Lord, only You can heal the mess that is in my husband’s body!

Click here for Day 9.

22. July 2019 · Write a comment · Categories: Devotionals · Tags:

Our journey continued and after a few follow-up appointments with the gastroenterology group, they decided that John was to be prescribed  Prednisone once again. That worked for a few days and then the same thing happened as the last time he was on it. Here we were, July 27, 2018, and diarrhea continued and John’s personality changed yet again. I was back to dealing with a paranoid and angry patient, which made my days unbearable at times. I remember sitting in my rocking chair by the window in desperation, crying and shouting out to the Lord in my heart. I can’t bear this much longer. Please, Father, I beg You, remove this burden. Then Psalm 121:1-2 resounded loud and clear in my heart and mind and I realized that my help came from the Lord. I remembered that verse 2 of Psalm 121 ended with “which made heaven and earth”! I believe that this phrase was added to remind me that the same God who created the heavens and the earth is certainly able to help me! I can’t limit God – He has no limits.

If I had not experienced desperation, I would not know the joy that comes later when the Lord answers prayers. I would not appreciate it as much. Instead, having been desperate for God to work in this situation, I was able to rejoice and give Him glory for each little blessing! Simply sitting in my chair watching the birds eat at the bird feeder gave me peace.  It helped me gather my emotions and focus my thoughts on how best to help John. 

As I meditated on God’s Word it encouraged my heart and reminded me to “take therefore no thought for the morrow: for the morrow shall take thought for the things of itself…”  (Matthew 6:34a) I’ve included other verses here which also greatly uplifted my spirit during those difficult days.  1 Samuel 30:6; “And David was greatly distressed; for the people spake of stoning him, because the soul of all the people was grieved, every man for his sons and for his daughters: but David encouraged himself in the LORD his God.”  1 Peter 5:7; “Casting all your care upon Him; for He careth for you.” James 1:5; “If any of you lack wisdom, let him ask of God..”  Proverbs. 10:28; “The hope of the righteous shall be gladness.” 

The unbeliever, the one who does not have the Lord at the center of his life, cannot rely on God’s Word for encouragement.  1 Corinthians 2:14; “But the natural man receiveth not the things of the Spirit of God: for they are foolishness unto him: neither can he know them, because they are spiritually discerned.”  It saddens me that the world cannot gain strength and reassurance from the Holy Scriptures.  Instead, they rely on others but, what happens when those others are not available? What happens when all you have is yourself?  Are you able to encourage yourself without turning to drinking, drugs or other things that will take your mind off your troubles? We know that resorting to things like drinking, drugs, etc. will not remove the affliction you’re facing.  It deadens your senses and emotions for the moment, but nevertheless, the trial remains. As a born again Christian I am reminded of what the Apostle Paul wrote in II Corinthians chapter 12 verse 9.  He regarded “tests” as opportunities for the child of God to grow spiritually. Instead of despairing in my trial, the Lord fortified my heart and lightened my load. Praise His Holy Name…..His promises are sure!  Matthew 11:28-30; “Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls. For my yoke is easy, and my burden is light.”

As July 31st rolled around and I finally believed we would get answers, we met with a specialist at UVA. He came highly recommended and we entered that appointment having beseeched the throne of Grace with much prayer.  My sons and friends had been praying that this would be the moment when we would get some answers – and answers we got! We finally received a diagnosis: it was Crohn’s Disease. We had no earthly idea what that was, however we surely did know its symptoms. Dr. Behm was kind and compassionate and he gave us hope that there are medications that would help alleviate John’s symptoms. He scheduled John to receive Remicade infusions over the next few weeks and said that he would begin to see remarkable relief within a week or two.  How happy and excited I was for the possibility of having a cure – and if not a cure, a medication that would control his symptoms. What a wonderful birthday present God had given me 🙂 My heart jumped for joy and praises came from my lips!

Click here for Day 8.

19. July 2019 · Write a comment · Categories: Devotionals · Tags:

As life continues all around me, my life seems to have come to a screeching halt. Normalcy had ceased and each day brought its own set of problems. I dreaded going to bed at night because I knew that challenges would be waiting for me the next day! I recall walking the beaches of Florence, Oregon and being in awe of how huge the waves were! They are so much bigger and louder than those of the East coast. Stepping into the water was disconcerting for me because I don’t know how to swim and the waves would nearly sweep me off my feet.

It brought to mind Hebrews 6:19; Which hope we have as an anchor of the soul, both sure and stedfast, and which entereth into that within the veil; Jesus is my anchor and during the times that I feel as though life’s waves of problems would overcome me and drown me, my Anchor would surely hold, protect, and help me. He is my hope, both sure and steadfast!  Granted, this verse refers to our salvation, but it also is very comforting that God used the word “anchor” here!  An anchor steadies a ship and keeps it in place. My Anchor helped me to focus and keep my emotions in check – Jesus was my steadying force!

Four days after our visit with the primary care doctor, John was extremely lethargic and not himself at all. I tried so hard to get him to drink and he would take a sip and that was it … repeat go back to step one! He became quite upset with me and called me a nag. I knew drinking was important but he was not cooperating. I desperately wanted to take him to the E.R. but he didn’t want to go. Thank God for John’s best friend who lives just a few minutes away! He was able to help me convince John that this was the best thing for him. Not only was he ill with this “colitis-type” illness, but he is also a diabetic so this adds to the mix of problems. 

Once at the E.R., more tests were ordered and all would come back negative (blood work, C-diff, CT scans, etc.). Some blood was found in his stool, and at this point, it was attributed to colitis. He was also extremely dehydrated so fluids were administered. Inevitably, he was admitted for observation and more testing. Oh Lord, please let this be the visit that finds a cure!  Please, let there be a pill that John can take and make this nightmare stop! I found comfort in God’s Word knowing that I was not alone in this battle. Psalm 77:1-4; “To the chief Musician, to Jeduthun, A Psalm of Asaph. I cried unto God with my voice, even unto God with my voice; and he gave ear unto me.  In the day of my trouble I sought the Lord: my sore ran in the night, and ceased not: my soul refused to be comforted. I remembered God, and was troubled: I complained, and my spirit was overwhelmed. Selah. Thou holdest mine eyes waking: I am so troubled that I cannot speak.” 

I cried and pleaded with God to bring an end to this nightmarish ordeal. I always had hope that this would end “soon.” I’m thankful I didn’t dwell on the “what if’s” as that would have most certainly pushed me over the edge. Being John’s caregiver had its own trials, I didn’t need to add depression and anguish to the mix. My Heavenly Father, in His faithfulness and mercy, provided me promises from His Word that would encourage and uplift my heart.  Psalm 55:22 is one of many verses which did just that!  “Cast thy burden upon the LORD, and he shall sustain thee: he shall never suffer the righteous to be moved.”  Again, He brought to mind that He was sure and steady – He would not permit me to be moved if I cast my burdens at His feet… and this I did continuously!

Since all the tests were negative and the fluids were exactly what John needed, he was released from the hospital on July 8, 2018, and was told to drink plenty of fluids. I was hoping they would keep him there longer so they could “find the cure.”  However, hospitals (and Medicare) don’t keep patients if their symptoms are relieved. I dreaded going home knowing in my heart what was in store for me.

Just as I suspected, once John was home he went back to being immobile. I was very frustrated because all he was doing was sleeping and sitting in his recliner.  He had no strength and was quickly losing weight. He would eat very little and the weight was just melting off of him. In just six weeks, he had lost 30 lbs.! The important thing was getting him to drink water. He was not putting in as much as he was letting out. I felt like a broken record! ***Sigh*** I would sit in my chair by the window, praying and listening to music to try to keep my spirits up so I could, in turn, be a help to John. I watched him sleeping and pleaded with the Lord to remove this burden.  But, that was not to be just yet.

Click here for Day 7.

15. July 2019 · Write a comment · Categories: Devotionals · Tags:

I learned so much about being a caregiver during this time. We read about people’s illnesses and their trials but very rarely do you read something about the person who took care of them. What did that person feel? What did that caregiver go through? How caregivers do it without the help of God in their lives, I’ll never know! 

Between May 21 and June 26, 2018, I learned that being a caregiver is the most difficult thing I’ve ever done in my life! It caused me to dig deep and pull out all the strength I had. I did not miss a day being with John. I would spend 10-12 hours a day with him at the hospital. Thank God the hospital was only ten minutes away from home. Many times he would ask me for something that I had left at home and I would have to go back and forth to accommodate him. I cared for him so the nurses would not have to constantly be called to help him go to the bathroom or clean him up. By the time I would get home at night, I was totally exhausted. I’d sit down in my chair and promptly fall asleep only to wake up a couple of hours later and go to bed. All of John’s previous illnesses were a cake walk compared to this one, including his colon cancer in 2008. With each passing day, I leaned more and more upon the Lord – looking unto the hills from whence cometh my help. Once again, during my morning time with Him, I would quote these verses back to God.

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In these moments, the Lord drew me to His side and pulled me close. He blessed me beyond measure with family and friends who provided wise counsel. He blessed me with encouraging words and encouraging reading. I came across “Footprints in the Sand” and boy, did THAT ever speak to my heart! I’ve read that poem countless of times, but this time, it meant so much more. The Book of Psalms also spoke to my heart more than ever before. Bible verses jumped off the page and inspired me to keep moving forward. Thank God for my sons as well as my two precious friends who would faithfully pray and give me words of encouragement. They were hurting inside as well. Their father and friend was declining before their very eyes! I also felt a responsibility to encourage them, but they ended up uplifting my spirit!  God is sooooo Good! Isaiah 41:10; “Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness.”

Click here for Day 6.

12. July 2019 · Write a comment · Categories: Devotionals · Tags:

With all tests negative for infection, the gastroenterologist group of doctors agreed that John may have some kind of colitis. We now had the possibility of a diagnosis – a name to put to John’s illness. It had been a whole month and and now, June 21, 2018, we were finally at this point! We were now going to learn a lot about the different types of colitis there are. Romans 5:3 “And not only so, but we glory in tribulations also: knowing that tribulation worketh patience;” I was learning just how much this tribulation would teach me patience. Not only did I learn patience with God’s plan in progress but patience toward my husband’s illness!

John was in the hospital for over two weeks at this point.  They began a prednisone regimen through IV and that produced results within a day! Oh the joy my heart felt when I saw my beloved having some relief! John’s abdomen began to soften and decrease in size, the intestines were calming down, his stool was no longer watery but was now similar to pudding, and he was feeling better! Praise the Lord! \o/ His bottom was hurting less….the anti inflammatory medication helped tremendously to reduce the ongoing diarrhea he was experiencing.  Joy filled my heart, the Lord heard my plea! I could not wait to share this wonderful news with family and friends who rejoiced along with me. Psalm 5:11; But let all those that put their trust in thee rejoice: let them ever shout for joy, because thou defendest them: let them also that love thy name be joyful in thee. I kept in touch with family through a group message on Messenger (and friends through texting) and would update them almost daily of his progress. All of our siblings live in various states so modern technology was a good way to keep everyone abreast.

After three extremely long weeks in the hospital, John was finally released to go home on June 26, 2018! He was to continue the prednisone by mouth. As much as this is a great drug, we quickly learned that it also has some nasty side effects. John became very agitated and angry and his personality changed almost overnight. It was peculiar that it did not happen with the IV prednisone while he was in the hospital but only with this pill form. Little things in our day-to-day lives seemed to upset him. He misinterpreted so many things I said – I felt as though I was walking on eggshells so as not to upset him.  I kept remembering Galatians 6:9 “And let us not be weary in well doing: for in due season we shall reap, if we faint not.” Oh how I prayed that I would not grow weary in caring for John. It’s easy to care for someone who is loving and appreciative. It’s quite another thing when that person is cranky and mean. As they say, “Love conquers all!” John and I have been together since 1968 and it was this love that sustained me. This and, of course, the love of Christ!

As if the side effects weren’t enough, the prednisone stopped working and the diarrhea had returned full force. From what I understood, had this been true colitis, this prednisone regimen would be working. Now I had a husband who was not only angry all the time but his symptoms had returned. ***Sigh*** Once again, this roller coaster ride took me into a downward spiral. Like Habakkuk, I cried to the Lord: Habakkuk 1:2a “O LORD, how long shall I cry, and thou wilt not hear!”

I found myself pleading with the Lord for His healing touch upon my husband’s body.  As Moses pleaded with God on behalf of his sister Miriam, I pleaded with God on behalf of John: Numbers 12:13; And Moses cried unto the LORD, saying, Heal her now, O God, I beseech thee. But I also knew that His ways are not my ways and His plans are not my plans. I was coming boldly before the Throne of Grace (Hebrews 4:16) but I knew that the Lord’s will needed to be done as this the only way that would have a perfect outcome. 1 Thessalonians 5:18 “In every thing give thanks: for this is the will of God in Christ Jesus concerning you.” So here I was thanking Him for this trial and begging the Lord to teach me through this.

On July 2, John met with his Primary Care Physician and the doctor took one look at him and said “You do not look well”! He wanted him to go back to the hospital but John refused. Understandably, he had reached his limit!  After spending three weeks in the hospital he just did not want to go back. Unfortunately, that would prove to be a mistake. 

Click here for Day 5.

09. July 2019 · Write a comment · Categories: Devotionals · Tags:

On my last devotional, I pointed out that John was taking Augmentin which exacerbated his problem with diarrhea. My word, what a struggle it was for him! He got out of the hospital on June 3, 2018, but three days later he was back in the Emergency Room. 

The E.R. admitting worker actually remembered us and got us in fairly quickly and another battery of tests were done. I remember telling my girlfriend that I felt as though we were on a roller coaster ride!  What a roller coaster ride it was indeed. 

John was dehydrated once again. He had been drinking but apparently not enough to keep up with his output. They gave him fluids and antibiotics as his temperature went up again. At this point, the doctors thought John might have C. diff. This was a new term to me.

C. diff is an abbreviation for:  Clostridium difficile (klos-TRID-e-um dif-uh-SEEL), also known as Clostridioides difficile (and often referred to as C. difficile orC. diff), is a bacterium that can cause symptoms ranging from diarrhea to life-threatening inflammation of the colon. In older adults, it’s typically caused after using antibiotics. Severe C. diff infection may also cause severe intestinal inflammation, enlargement of the colon (also called toxic megacolon) and sepsis. 

Mayo Clinic – Diseases-Conditions

People who have these conditions are often admitted to the intensive care unit and isolated.Tests and scans thus far showed an inflammation of his intestines so this suspicion was a logical conclusion. John’s abdomen was so swollen and he was just miserable. The nurses told us that there’s a certain smell that indicates the possibility of C. diff and they were certain he had it. However, the tests for C. diff came back negative. 

They continued with all kinds of tests, scans, x-rays, etc. You name it, John had it done. They thought he may have some kind of infectious disease so the infectious disease doctor was brought into the picture. I recall begging the Lord and asking for answers! I felt like David when he questioned God. Psalm 88:14;  LORD, why castest thou off my soul? why hidest thou thy face from me? How much more can my poor husband take? I desperately wanted answers. I poured my heart out to the Lord and shed many tears on my beloved’s behalf. Psa 62:8  Trust in him at all times; ye people, pour out your heart before him: God is a refuge for us. Selah. John was so sick of being in the hospital, sick of hospital food and just plain sick! I felt so helpless at the time. I wanted badly to help my husband but I knew in my heart that the Lord had His timing and He was the Great Physician. He would heal John in His time.  Psa 42:11  Why art thou cast down, O my soul? and why art thou disquieted within me? hope thou in God: for I shall yet praise him, who is the health of my countenance, and my God. 

Click here for Day 4.

05. July 2019 · Write a comment · Categories: Devotionals · Tags:

So now we had embarked on this journey – one with an unknown destination; one filled with uncertainties; and one that was to produce extreme anxiety in the days ahead. What direction would I take? Who was going to help John? My precious husband was undergoing so much pain and suffering! My heart was breaking! He spent his time in the bathroom and having accidents. 🙁 Needless to say, mountains of laundry and unending cleaning was becoming my life’s story. Even when John had colon cancer in 2008, I was totally not prepared for what was about to happen.

It’s not like these symptoms could be attributed to chemotherapy or radiation like in 2008. These symptoms were the result of the “unknown” and we were baffled. How I hated to see my husband suffering. I’m sure you’re all aware as to what happens when you have diarrhea after a few hours of “going.” Your bottom becomes raw and oh the pain! John was going all the time! There was no end in sight and he was absolutely miserable! I was heartbroken as I watched my beloved, my best friend, suffer! :'( My days were overwhelmed with emotion, questions, and confusion!  I didn’t know why he was suffering so much. We did not have a diagnosis and we definitely were perplexed. This continued for another five days and my poor husband had become lethargic. In just a week’s time, John had lost nearly ten pounds! 

At this point, here we were on May 28, 2018, and I knew we were dealing with something bigger than just post-surgery issues. My husband was just not “my husband”! Something was off so I brought him to the Emergency Room and sure enough, he was extremely dehydrated. They had to administer more than two bags of IV fluids in order to bring his numbers up. However, test results showed that not all was well. One of the doctors from our GI practice was on call that weekend and diagnosed him as having caught a “bug” of some kind. The fluids they gave John intravenously helped him to feel better but diarrhea was still very much an issue. The doctor released him from the hospital with a prescription for Augmentin. We went home thinking that things would change and would get better. Had I done my homework, I would have seen that one of its side effects was diarrhea! Prayers were being sent to the Throne of Glory on behalf of my husband – prayers begging for help!

But sadly, things did not get better. By the 4th of July, John had lost 20 pounds!  His life had now forced him to stay close to home and close to the bathroom. Everything ceased for him – everything ceased for me. How I pleaded with the Lord to help my poor husband. I recall sitting in my rocking chair, watching God’s creation outside my window.  Life was passing us by and no one was aware of just what my poor beloved was going through. I could not understand why the Lord was not hearing. I would plead with the Lord and in those dark days I grew to love Psalm 121:1-2 as never before. These verses would flow from my lips continuously. They brought such comfort because I knew that although we could not figure out what was going on, my Heavenly Father knew and He had a plan. 

Click here for Day 3

28. June 2019 · Write a comment · Categories: Devotionals · Tags:

Have you ever looked back on an event in your life and be thankful you didn’t know just what you would be going through ahead of time? I’m about to share a journey that was just that! What makes my journey so different from yours? You and I may be on a similar path; however each human being reacts differently to the same set of circumstances. Some people rest in a “higher power” to help them through. Others try to deal with life’s blows in their own way and by their own strength.

Personally, I don’t know how people make it through life’s trials without being able to lean on the Lord. In most of my 40 years of salvation, I have had these two verses as my “life’s” verse: Prov. 3:5 and Ps. 121:1-2. These promises from God’s word were on my lips and in my heart each and every morning.

Little did I know that when my husband, John, entered the hospital for outpatient hernia surgery on May 21, 2018, we were actually embarking on a year-long trip of pain, heartache and uncertainty! The hernia surgery was a complete success and was actually the answer to my prayers! But there was much more to follow – things I never bargained for!  John was experiencing so much pain – this surgery brought something different from his previous hernia surgeries. A couple of days later, his abdomen began to swell and he was “backed” up. We attributed this to the surgery and consulted his surgeon. The doctor recommended Dulcolax which worked like a charm; however, from that point on, John continued to experience frequent diarrhea, which never really abated. This was the first hurdle in our journey to the frightening unknown. We would be catapulted into countless days of doctors’ visits and hospital stays! 

We embarked on a virtual roller coaster ride of highs and lows – a ride where I would repeatedly beg the Lord to take me off. Ailments and hurdles would surface over the next year that would test our faith. I’m so thankful we do not know what lies in our future! I’m thankful that we can draw on the Lord’s strength as we need it! I came to see that strength and wisdom were given to me as I drew to His side with each hurdle! My Heavenly Father numbers the very hairs on each of our heads Matthew 10:30 – surely He would know John’s needs (and mine, for that matter) better than me.

This journey has caused me to dig deep into my soul and I began to seek His face even more than before! Each day began with me searching His word – seeking His will – seeking His strength. I began to look at the Lord as my only source of strength! He gave me strength from His word: Psalm 121:1-2 became part of my daily thinking. I thank the Lord daily for His unending grace and mercy!

Click here for Day 2.