Question #2: How do I handle watching the disappointment in my child’s eyes when they want to and try to do something very important to them and they cannot; I just hold them in my arms as they cry?
This question is tough and, if you are a parent of a disabled or chronically ill child, you know it all too well. I can recall when Sophia would desperately want to go to school, go play, or simply hang out with her friends yet could not because of illness. It is truly a gut-wrenching thing to know your child is in not only physical pain, but also mental and emotional pain. It messes with their psyche. I would have to leave the room and cry for her without her seeing my distress lest I cause her more suffering. For me, and I can speak only for myself, the only comfort I found was in knowing God has a perfect plan for Sophia, that, in His right timing, old things will pass away and everything Satan means against her for evil will turn for her good because I love the Lord.
Clinging to the promises of God are all we have in those moments, literally. The only solace any of us have in any tormenting or strenuous situation is faith. Faith that God is faithful when we are faithless. Faith that there is a God, that He is compassionate, and that He knows what He’s doing. I regularly went to Psalm 27, which reads, “I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living.” The next part is vital which instructs, “Wait for the Lord; be strong and let your heart take courage; yes, wait for the Lord.” It sounds much easier than it is, this is know. Regardless, it is the Lord’s instruction because His faith is in Himself. I can’t tell you how many times I had to cling to these Scriptures when all else seemed to fail. All the meds, the doctors, and anything I did to help her failed and miserably so. But God…these words, though cliché to many, are powerful. But God. But God has a plan for all the suffering. But God has a purpose for the sorrow, tears, and anguish of any given moment. All I know is that God is faithful to His righteous seed and, if you have proclaimed that Jesus is the risen Son of God both in word, heart, and deed, there is a brighter day ahead.
I would always remind myself that, beyond the terrible days, weeks, months and, yes, years, God will turn the curses into a blessing. It is an unbreakable promise of God written in Deuteronomy 23:5 stating, “Nevertheless, the Lord your God was not willing to listen to Balaam, but the Lord your God turned the curse into a blessing for you because the Lord your God loves you.” Brilliant! My hope has to be, your hope has to be in God alone. There is no other Source than He. It is a great time to encourage your child that God is faithful even when it doesn’t feel like it, that He will accomplish the impossible on our behalf in a way we cannot imagine. Teaching them to be content in all things, in every circumstance, is vital to whatever comes next. In our weakness, we are made strong through Christ.
Question #1: How do I handle watching other healthy children who easily forget about my child; those kids who move on and don’t look back. There are days when it is just too much as a parent and I want to escape from it all, but I know I can’t because my child cannot so I just continue feeling exhausted, overwhelmed, and sad.
As a parent of a child who was chronically ill ten years and, though recovering, still has bad weeks here and there, I can attest to the frustration and deep sorrow a parent feels watching healthy children live their lives with no thought of your sick child. I can’t count high enough to recount all the times I would be in church or around people with healthy, thriving kids and feel so compelled to cry aloud that I could scarcely contain my sorrow and utter agony. It isn’t that we want the well kids to be ill, rather we desire for our own child to have the freedom to run, grow, and thrive like their peers.
There is truly an inexpressible pain a parent feels watching their unwell child day in and day out with no signs of improvement. If one is not careful to self-adjust, jealousy can set in quickly. For those who know the Word of God well, you are aware that jealousy is a murdering spirit. It will annihilate the best of relationships, yourself, and those around you. Most parents don’t equate these feelings to jealousy but, if we are honest and if we look deeply enough into our soul so as to access the root problem, it is jealousy at its worst. I defer to I Corinthians 3:3 which reads, “You are still worldly. For since there is jealousy and quarrels among you, are you not worldly? Are you not acting like mere humans?”
Most liken this Scripture to different circumstances, but I believe it aptly describes the root of a parents’ problem when we feel such things. It is veiled jealousy in so much as it doesn’t at all feel like jealousy. It feels more like just wanting the best for your kid. This is how jealousy attacks – it is disguised as love. We want so desperately for our child to be well that we begin, in our heart of hearts, to pine after wellness. This pining, per se, comes from pure motives yet morphs into sin, the sin of jealousy. Believe me, I have experienced this first-hand and it is ugly! I’m not generally a jealous person so it took me quite by surprise when I felt it so strongly the first time. If I’m being completely candid, the spirit of jealousy stems from pride. Allow me to explain.
When you or I are in a situation we do not understand, do not like, and is altogether gut wrenching, after a while, pride says, “You and your child deserve better. God is not in love with mankind as a whole, and definitely not you or your child personally. If He were, this would not be happening. How can such a good God allow such heartbreak and agony?” The thing with which I had to come to terms is that, if I am to tell the absolute truth about the matter, we all deserve hell because of the sin-sick nature of mankind. Anything short of hell is a bonus, at least so far as I can tell. In other words, anything less than hell is God’s intense mercy on me, my child, or anyone else on planet Earth. I recognize this can sound harsh but, I promise you, this is how I had to bring myself back to reality and by “reality,” I mean God’s truth v. my skewed perspective of how I believe things should be.
I like to reference Job in these matters. Job suffered and initially blessed God. He lost everything except his nagging wife. Eventually, he suffered intense bodily afflictions. By chapter 30, Job was complaining about his poor estate. Chapter 31 shows Job defending his integrity. By chapter 32, the young prophet Elihu rebukes Job as led by Holy Spirit and this goes on several chapters. By chapter 38, God rebukes Job intensely because of him defending himself and demanding the counsel of the Lord so as to question Him. Chapter 42:1-6, the last chapter, Job is humbled in the presence of the Lord and says to God, “I know that You can do all things, and that no purpose of Yours can be thwarted. Who is this that hides counsel without knowledge? Therefore, I have declared that which I did not understand, things too wonderful for me, which I did not know. Hear me now, and I will speak. I will ask You, and You instruct me. I have heard of You by the hearing of the ear, but now my eye sees You; therefore I retract, and I repent in dust and ashes.” Job repented. This is crucial to understand in any case of intense, long-term suffering of any kind. Job plead his case expecting God to “fix things” due to how well and long he had served the Lord. This point of view was ungodly and wrong in every way. In the end, once he repented the situation (surrendered to God’s holiness), his life was Spirit-filled instead of based on “things he didn’t really know.” In the end, life was better than before the trial started. God had a plan Job could not see or understand at the time. All God wanted him to do was relent, surrender, and watch and wait for God’s supernatural hand to move.
What is my point? As parents, we want the best for our children. When, in our exhaustion, we get caught up into the emotions of the situation, we cannot see clearly. More specifically, we cannot see God clearly, even though we say with our lips, “I believe. I have faith in God.” Too often, we say it out of habit, but not truly from the heart of faith. We are frequently so irritated that God isn’t healing our child as we believe He should or fast enough, we completely lose perspective. By “perspective” I mean heavenly perspective. We are to set our minds on things above and not things of this earth and illness itself is of the earth. Our focal point is wrong. Other healthy kids as a focus is incorrect. Our child not healing fast enough is not the correct focus. We are to be sober and vigilant in our communion with the Lord. The only way to combat the jealousy is to request of the Lord a change of perspective instead of constantly begging for a change of situation. Playing the comparison game in our minds is terribly misguiding.
It is completely natural to want our kids to be like normal, healthy kids. I feel the same way. However, normalcy should not be our goal. Holiness and God’s perfected will in every matter should be. God has made us supernatural in His image once we receive His Spirit. My favorite author, Watchman Nee, said something to the effect that God’s people are usually too quick to beg to be well when, all the while, we should have the patience to see what God is doing in the trial, and he was a man of severe ongoing suffering. I agree. The body in which we dwell is flesh, which means it is flawed due to the entrance of sin into the world. Some bodies hold up better and longer than others. I have no explanation as to the selection of who is who. What I do know is that, as a parent specifically, we get terribly caught up in the emotion of dealing with our children and, in our emotionalism, we miss the hand of God. We pray the wrong prayers or with the wrong motives, though we are sincere.
For me personally, I had to regularly and repeatedly take my eyes off my child, off other children, off what I believed should happen and when, and begin to praise the Lord for His goodness and mercies which are new every day. What I am saying is not for the novice Christian but rather for the one who desires the perfect will of God in everything. It doesn’t mean we don’t have emotions, that we don’t ever feel frustration, sadness, or irritation. It does mean we must filter all our emotions through the Spirit of God. We must inquire of the Lord, “What should I pray? What should I do or not do? Reveal to me how to rest amid this horrific storm. Father, I believe, help me with my unbelief. I trust You with my life and the life of my ill child. I thank You, Father, that You are more in love with my child than I ever could be because they are Yours first and then mine secondly. Father, orchestrate my footsteps. Lead me to the right place so that I will properly do my part as a parent, but help me relinquish the other parts which are not mine to fix. Thank You that those other children are healthy and do not know the anguish of my child. Help me to set my mind on things above, to meditate on Your Word night and day, to be sober minded and vigilant in Your will above my own, to see as You see, to respond in accordance to Your righteousness, to cast down imaginations and strongholds, and every high thing that exalts itself above the name of Christ in my life, and to think on whatsoever is true, honest, just, pure, lovely, of good report, of virtue, and of praise. I surrender this situation to You completely. Thank You for the rest which only You can supernaturally provide for my soul. Selah.”
Chapter 8: Prayer and Encouragement
Accompanying kindness, compassion and the other attributes of the Spirit are prayer and encouragement. If we are correcting a brother and we are not encouraging them back to spiritual wellness, we are not operating under the directive of the King. The entire written Word of God is based 100% on compassion. Even in the Old Testament when God would annihilate entire cities and tribes, it’s because they would not relent in their wickedness and they, by their own actions, forced God’s hand so as to protect His righteous seed. It is never God’s desire for anyone to perish (I Peter 3:9).
This life should only be a pre-cursor to better things to come, not worse. Blatantly or inadvertently, most people purpose to cause this life to be the “best” through worldly lusts of the flesh (sin); as a result, only hell to follow. This life is temporary and we must approach it as such or we will be consumed by the evil one. Sin is death and it is our command as Kingdom citizens of Heaven to cause those in darkness to most earnestly desire the Light. In this mindset, we will devote ourselves to prayer; prayer for the lost, the dying, the sick, the poor, the haughty, the wicked, the righteous, and so on. Prayer is encouraging, both for the one for whom we pray and for the one praying. I’m always encouraged when I stand before the throne of Grace regardless of the reason. We must encourage one another and pray that the faith of our brethren not fail in the hard times. We are to be people builders, not people destroyers.
Not Destined for Wrath:
“For God has not destined us for wrath, but for obtaining salvation through our Lord Jesus Christ, who died for us, so that whether we are awake or asleep, we will live together with Him. Therefore encourage one another and build up one another, just as you also are doing (I Thessalonians 5:9-11).”
We can look at these verses two ways:
- we are not designed for God’s wrath against us, but for His love to consume us
- we are not designed for wrath against other people, but for His love to come through us so as to turn others toward the Kingdom of God
When I hear of or witness firsthand a “Christian” extending wrath against any other human being, I am saddened because I know it saddens the heart of God. For example, recently Joy Beher of the TV show The View referred to Mike Pence, the current VP of the USA, as one having a “mental illness” because of his faith in Jesus Christ. The multitude of the Christians of the land was ready to lynch her at high noon for such disrespect.
Let us recall Psalm 119:165 mentioned earlier: “Great peace have they who love Thy law and nothing shall offend them.” Christians, different from authentic followers of Christ, are quick to offense and quick to criticize the world when they say foolish things against God. She later apologized to the Vice President and, as one would imagine, Christians were once again offended because her apology was a day late, a dollar short, and altogether insincere, allegedly.
When will people of God recognize that the world will speak and act as the world, as the one running the world’s system? His name is Satan, the devil, Beelzebub, Lucifer, etc. When the peace of God rules in our hearts, we will be able to extend love and honor to those in and of the world. We will begin to have a Kingdom perspective instead of an earthly, fleshly, limited view.
Prayer is required in such situations, not criticism. It’s equated to being mad at a baby for screaming for not getting their way when what is required is discipline and instruction, not anger and wrath. Worldly people, aka those not of Christ, are like those babies. They don’t know any better. The only way to spiritually handle it with efficacy is to encourage those in Christ so as to not combat the wrong entity or in the wrong way.
People are not the enemy, Satan and his legion of demons are. The war is between Heaven and Earth, between God and the devil. We mere mortals are caught in the crosshairs. When mere mortals surrender to Christ, we become something more than mortal; we transition into the supernatural strangers and aliens from Heaven sent to Earth so as to pronounce and expand the Kingdom of God.
Once that transition occurs in an individual’s life, we no longer see, think, act, walk or talk as our old nature. We are no longer to function in the “tit-for-tat” mentality. We are no longer to be offended by the foolish deeds of darkness. Joy Behar, for example, is a person whom God loves and for whom He gave His life. Our human enemies of this life are people for whom Christ died. Pray for them. Stay away from them if the situation warrants, but do not retaliate in a manner of hatred and wrath. Do everything offense-free and with a heart to turn them toward the heart of God.
“but I have prayed for you, that your faith may not fail; and you, when once you have turned again, strengthen your brothers (Luke 22:32, NAS).”
“These all with one mind were continually devoting themselves to prayer…(Acts 1:14, NAS).”
“For I have come to have much joy and comfort in your love, because the hearts of the saints have been refreshed through you, brother (Philemon 1:7, NAS).”
“Yes, brother, let me benefit from you in the Lord; refresh my heart in Christ (Philemon 1:20, NAS).”
Chapter Fifteen: Strength for the Weary
I’ve Fallen and I Can’t Get Up!
It is the enemy who tries to make you wallow in self-pity when you make a mistake. He wants you permanently derailed. God says that, if you get off track, get back on. If you sin, repent and stop sinning. If it was an honest mistake, repent and correct it. If it was blatant rebellion, do the same. God is not going to remove His Spirit from you because you missed a step unless you will not relent. So many find themselves in a frightful state thinking God will leave them abandoned. That too is a lie. His promise to the believer is, “I will never leave you nor forsake you.” When doubt tries to enter, take the authority over your own mind and pull down those imaginations and strongholds which try to take you captive. Quote the Word to yourself; it will not return to Him void.
In chapter 5, verse 7 of Nehemiah, when Nehemiah set out to rebuild the city wall, he “consulted with himself”. David encouraged himself in the wilderness. At your weakest, most vulnerable condition, if you have no one to encourage you and remind you of the promises of God, remind yourself. Pick up the Word and start quoting Scripture until you believe it again or for the first time. Allow God’s Spirit and truth to comfort and encourage you in weakness no matter in what form it presents.
There is a Holy Bible full of examples of God’s anointed missing the mark a time or two. Adam missed it. So did David, Moses, Noah, Abraham, Elijah, all the disciples, and many more in between. Get up and dust yourself off! Bind away a spirit of fear, doubt, depression, unworthiness, and anything else not of Holy Spirit and move on with God. Take up the authority Jesus Christ gave you at the cross and command all evil spirits to leave. Take up the mind of Christ. Take up the armor of God and press forward. You have a Kingdom destiny which only you are called to fulfill. Don’t let weak flesh have a foothold. Abdicate the flesh and all soulish emotions that quench Holy Spirit. A tragic weakness is in not knowing the power God has given you, or worse, refusing to use it.
“Only be strong and very courageous; be careful to do according to all the law which Moses My servant commanded you; do not turn from it to the right or to the left, so that you may have success wherever you go. This book of the law shall not depart from your mouth, but you shall meditate on it day and night, so that you may be careful to do according to all that is written in it; for then you will make your way prosperous, and then you will have success. Have I not commanded you? Be strong and courageous! Do not tremble or be dismayed, for the Lord your God is with you wherever you go (Joshua 1:7-9, NAS).”
“For God has not given us a spirit of timidity (fear), but of power, love and a sound mind (self-discipline) (II Timothy 1:7, NAS).”
In my 50 years of life, jealousy has never been something to which I have commonly subscribed. I’m always elated to witness success and assist others so as to catapult them into greatness. That being said, having a chronically ill child has, on more than one occasion, provoked a spirit of jealousy within me. I deal with it in the throne room of grace, to be sure, as soon as I feel it. Nevertheless, the pangs of such a vile emotion rear their ugly head when I least expect it. When I see all around me the kids of friends, family, acquaintances and even strangers who are perfectly healthy and thriving, as awful to admit as it is, I feel the sensation of jealousy. It is not for money or possessions, but for good health for my daughter. I weep for my sweet Sophia as I know others weep for their suffering children.
From family to family, it’s a sliding scale of illnesses and severity but, I assure you, pain is pain. I don’t have less sorrow for my child than a parent of a child with cancer or more sorrow than a parent with a kid with an infection which is taking longer to subside than average. Hands down, it is all horrible watching your child suffer while other children run, play, go to school and do the things healthy kids do. Sophia has begun a two month regimen of medication specifically for her issues. It’s been two weeks and we’ve seen some improvement. She’s been getting caught up in some school work and able to spend time with friends here and there. It has been encouraging to watch as slow progress is still progress.
Yesterday, just as Michael and I had embarked on a much needed date night, we had just sat down at the restaurant to order and the phone rings. Sophia called bawling her eyes out because, while at her friend’s house, she threw up repeatedly and was in a lot of stomach pain. What’s more, she was/is very frustrated she can’t seem to kick this and the correlating problems. This morning at church, a friend was excited to revel in our mutual friend’s daughter’s achievements where she had deservedly, once again, taken 1st place. Of course, I am thrilled for my friend’s daughter; in fact, she’s my best friend. Our daughters are only a year apart and we are each other’s daughter’s god-mothers.
I thought to myself how astonishingly disgusting it was that I would feel such pain and jealousy for one I love so dearly; its a bit of a paradox. Even as I type, I weep at the unbearable thought that I would have such emotions. It was all I could do not to cry the entire service knowing my baby was hurting and feeling the way I did. Notwithstanding, the fact remains, people in my shoes do feel surges of jealousy with the desire for our kids to be able to enjoy childhood/teenhood just like everyone else’s kids.
Just the other day, a friend wrote asking me to pray for peace for her because she was feeling jealousy for reasons I just described. She is a follower of Christ and knows God has a perfect plan for her child, yet struggles with such feelings. She mentioned that watching photo after photo of other kids doing so well and having such joy brought her more pain.
I responded like this (roughly): “My personal peace comes from reminding myself that, at the conclusion of this part of Sophia’s life, it will catapult her right into the perfect will of God. If I may be frank, you do not need prayer for peace, you need to believe God has a plan and that it is good; belief is where the peace lies. I don’t know what God has designed for your daughter’s life, but a part of that is not you feeling devastated as if there’s no hope. I say this to you as I must daily remind myself.” Knowing, believing, trusting and accepting God does have a plan is the key. This knowledge is how I am able to:
- Call myself to accountability in my incorrect emotions
- Pull down (away from) my mind all thoughts not of God
- Pull those thoughts into the obedience of Christ until my obedience is made complete
- Refuse to allow my mind to continue a process of comparing Sophia’s life to anyone else’s
- Remind myself God is faithful, He has a plan, He is in love with her and He purposes the best for her
- Believe all things work together for good for those who love God, for those who walk according to the Spirit
- Trust God with all my heart, soul, mind and strength – regardless of what my eyes see or emotions feel
- Reestablish peace that passes all understanding
If I may help you in any way, please reach out to me on Facebook, email or in the comments section. If there’s help for me and my child, there’s equal hope, help and peace for you. Jealousy of others will only lead to further destruction, chaos and confusion, it is a murdering spirit. Just because we feel something in a moment of weakness does not mean we have to allow it to overtake us. Focusing on the love of God chases out feelings which are not of God. Blessings!
Proverbs 14:30: “A heart at peace gives life to the body, but envy rots the bones.”
It’s been 7 ½ weeks since I last wrote because Sophia has been very ill. Shortly after the April 4th blog, she was admitted into the hospital 6 days; it is 2 hours away making the struggle a bit more intense. Test after test, lots of pain for Sophia and many trips back and forth to her specialists (also 2 hours away), they ruled out leukemia and Crohn’s disease, to which I am eternally grateful. Notwithstanding, we’re awaiting other tests to figure out, not only what it isn’t, but what it is. We go to her endocrinologist next week to explore other issues.
In the midst of it all, I must admit, I became wearier than ever before, spirit, mind and body. So much so that, on one occasion when my dad called and said “There are a lot of people praying for her”, the thought crossed through my mind, “for whatever good that’ll do”. I was shocked that even entered my mind, truly. I am a person of faith, nay, great faith. Christ is my life through and through and I make no bones about it. Regardless, that vile thought of faithlessness flitted right in and right back out. At that moment, I realized just how out of spiritual sync I had become. There are times in this life which, left unattended, have the power to utterly crush us. Watching your child in pain 24/7 years on end is one of those times. However, when I heard those words in my own mind, it called me to take notice of my spiritual condition.
Upon further investigation, I found I had been excessively agitated, frustrated and altogether ill at ease all the while begging God, pleading to Him to heal my child. At that moment, I became aware of the ponderance of the situation. I am well aware that, when someone is begging God for anything, they have either lost sight of the nature of God or they never grasped it at all. I was the former. It was then I positioned myself to repent, recalibrate my relationship with Christ and move forward in power and confidence in His purpose.
Our God, the Great I AM, is loving, kind, longsuffering, forgiving and merciful, among many other astounding characteristics. As His child, His bride, His ambassador, I know without question I never have to beg. I am to function in obedience which lends itself to His authority so as to utilize His power in any situation. If when I am not seeing things alter immediately while spiritually sound, I can rest in His ultimate plan. Before the foundation of the Earth, God devised a perfect plan for my life, Sophia’s life, and the life of every human ever to enter the Earth. I trust that plan. I believe in the greater heavenly good no matter how things feel or appear in the moment.
Proverbs 3:5-6: Trust in the Lord with all your heart and do not lean on your own understanding. In all your ways acknowledge Him, and He will make your paths straight.
II Corinthians 5:7: We walk by faith, not by sight…
Romans 5:3-5: Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.
I’m baffled it’s already been three weeks since last I blogged, but that’s how it goes when you have a child who is perpetually dealing with various illnesses. I’m writing today just to share my heart. I think, no, I know there is a misconception floating around that those who are followers of Christ are never down, never upset, bothered, or affected by their surroundings. As a Christian author and minister, I teach with voracity how to overcome the obstacles of life and I purpose to live that which I preach to others.
Notwithstanding, people of the deepest levels of faith have bad days. Just because we function in absolute trust in the Lord does not mean we’re bubbly and overflowing with positivity like we live in a bubble. The bottom line is, there are days I cry or rather, days I want to cry but literally have no opportunity to do so. There are days when I am just shy of being overwhelmed by the situation. Case in point, Sophia has been throwing up 11 or 12 weeks to date. In that time, I’ve attended multiple meetings with the school, an attorney, doctors, and the superintendent in the attempt to fight the school system so as to keep them from calling truancy (which was successful), dealing with losing our insurance due to Michael having lost his job of 20 years the end of December, attempt to pay bills with money we do not possess because his new job won’t render any real money until May, run back and forth to MUSC (2 hours away) for multiple doc appointments, run a household as well as minister to others.
With all that, I have zero time with my husband – ZERO. Frankly, I miss him. He’s working long hours so as to build a sales clientele and, by the time he comes home, we try to spend time together as a family and then everyone passes out. We have lost all our saving paying for doctors and medication along with the loss of his job. In our nearly 16 years of marriage, we have had 1 vacation and that was a trip to the beach with two two-year-olds…not what I would call a vacation as that is a lot of work! Life is hard enough with a normal setting with healthy kids, but life with a chronically ill child – I have no words. I cannot properly express the exhaustion, sorrow, and altogether madness of dealing with the day to day. No one could possibly understand other than someone in these shoes.
Here is the “so what?” No, we are not to remain in a funk or depression as that is not of God. We are not to spread our sorrows to any listening ear. Yes, we are allowed days where we can admit to the difficulties. Confess there is a present struggle to someone you can trust who won’t be judgmental and will lend godly counsel as needed. Sometimes we simply need a friendly ear and prayer.
God is faithful. God is good and great and kind and merciful. Above all, God is loving. Knowing this, I am sustained. Knowing this, I am at peace. Knowing this, I can push through the worst of days. Knowing this, I maintain the Living Hope, which is Jesus Christ. Knowing this, I can allow myself a moment to cry or even a moment to be frustrated without beating myself with guilt for having a bad moment. The best of people can have the worst of days. Cut yourself some slack and then allow the hand of God to raise you in spirit, soul, body and mind. He is faithful.
I Peter 1:3-4: Blessed be the God and Father of our Lord Jesus Christ, who according to His great mercy has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead, to obtain an inheritance which is imperishable and undefiled and will not fade away, reserved in heaven for you.
Caring for a chronically ill child requires dealing with the school system. I must say that, after six years of Sophia being on homebound, it is still very tricky to handle the school without unleashing a merciless verbal assault on someone; this would come easily to my natural man. It isn’t just the home office but each and every teacher as they are all different people with varying personalities and modes of operation. This year, Sophia’s freshman year, has been the worst dealing with the homebound committee. I have battled against a homebound assigned nurse giving false information leading to the rejection of homebound tutoring as well as false information making things appear one way when they were altogether another. I have had to battle all school year just to attain the proper accommodations for Sophia so as to be able to accomplish her work while in and out of school.
As recently as last week, I had to make a call to both the superintendent as well as a friend on the school board. The homebound board was refusing to grant Sophia homebound hours when she was out three straight weeks. They cited that, because her days were previously excused, they would not accept the newly submitted backdated homebound form so as to get the necessary tutoring to cover those three weeks. When I finally received a call from the head of homebound after she must have received a call from a superior, her response was, “Oh, so all you need are the homebound services? We thought you were requesting her days to be doctor’s excused and they already were.” This was a lie as she knew exactly what I was requesting. Honestly, I cannot for the life of me understand why the school system uses the motto “no child left behind” when they’ve proven time and again they couldn’t care less about my child or her education. There are times over the last 6 years where I have lost my temper in utter frustration listening to them flim-flam their way through the litany of excuses as to why they cannot provide this or that. They love looking good on the surface but, underneath, in my opinion, it’s all about reputation and money.
I say this to say that walking with God and having to confront the school system is challenging at best. As if it isn’t enough having to wrangle with the doctors and their ever changing assessments of what’s going on any given occasion and having to care for my sick child knowing that, in the moment, I can’t do anything to ease her suffering, insult is added to injury having to deal with the school threats of calling truancy if I don’t immediately comply to their system.
I find myself having to regularly and specifically apply God’s Word to my life, my attitude and my overall posture when dealing with the school system at large. I perpetually call myself to accountability so as to not lose my tempter with someone merely delivering a message. I must remind myself they are people too; that the individuals with whom I am dealing are just that – individuals – they are not the system itself. I long to be perfect as Christ is perfect, but there are moments when I lose sight of Holy Spirit, if even for a moment, and have to force myself into obedience to Christ. I surrender each instance to God so I do not become what I hate – a fleshly, worldly, loudmouth mom going off on a tangent. As tempting as it is and as easily as that would come to my natural man, I must resist.
These are some of the lessons within the lessons drawing me closer unto the bosom of God. Choosing to resist temptation at all costs is vital. Though I fail from time to time, God is faithful. I remind myself all things DO work together for good for those who love God and I am in love with God.
James 1:13-16: When tempted, no one should say, “God is tempting me.” For God cannot be tempted by evil, nor does He tempt anyone; but each person is tempted when they are dragged away by their own evil desire and enticed. Then, after desire has conceived, it gives birth to sin; and sin, when it is full-grown, gives birth to death. Don’t be deceived, my dear bothers and sisters.
“Why me, Lord?” or rather “Why my child?” The question of “why” has to be the most commonly asked question of anyone throughout the ages. “Surely God who is loving has forgotten us. Doesn’t He love us? Is He punishing us? Is He lacking in power, goodness or greatness? Surely a good God would not allow this. If He were great, we wouldn’t suffer so.” To be clear, God is equally loving, good and great. He is all powerful and able to heal in any capacity needed; in fact, His healing is fully intact and is complete in the spirit-realm. The problem lies not in who God is, but in how we perceive Him and our circumstances.
We read in the first few lines of the 73rd Psalm of Asaph, “Surely God is good to Israel, to those who are pure in heart. But as for me, my feet had almost slipped; I had nearly lost my foothold. For I envied the arrogant when I saw the prosperity of the wicked.” He continues citing how the wicked prosper and the righteous suffer. Here we witness the candor of a man who was in love with God. He begins with stating the truth about God, that He loves His people, then goes into the confession of his envy of the wicked who prosper. Envy, as shown in numerous verses of God’s Word, is sin. Not only is it sin, but it is mercilessly destructive.
I deeply appreciate Asaph’s confession of his envy of those who flourish yet are wicked. When one has set their cap to serving the Lord yet suffers greatly, it is all too easy to become prideful assuming God should be more mindful of the righteous; this is pride. In our prideful spirit, we believe God has wronged us, forgotten us or altogether forsaken us. This simply is not true. There are a multitude of Scriptures preparing God’s people in how to stand in the evil day, how we have overcome the world yet beset by a myriad of sufferings.
We’re back to the problem: is it God or is it man’s prideful thinking? Without question, it is the latter. When we lay down our fleshly mindset (conscious or unconscious) of “I deserve better because I love the Lord,” already we can deduce we do not love God as much as we think. In fact, we think too highly of ourselves and love ourselves in an unhealthy fashion. It isn’t until we get to know our Sovereign King that we can take hold of a major paradigm shift. The bottom line is, we are all unworthy of God’s grace, yet He extends it regardless. All of humankind deserves hell, yet, in His supreme compassion, He allows us to partake in His worth, His Kingdom, His grace and kindness.
When our children suffer, it is far worse than suffering in our own bodies. Nevertheless, God is sovereign; He is just in all His ways. I believe 100% in supernatural healing, binding away spirits and releasing Holy Spirit in their place, anointing with oil, laying on hands from elders, repenting of known sin and going to sin no more, and breaking generational or other curses. When, however, one who walks with the Lord has done all this through faith and they don’t immediately experience a shift in the situation, we must stand in faith and trust that the Lord is all He proclaimed. His promises remain steadfast and sure.
II Corinthians 1:3-4 states, “Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.” Instead of asking, “Why”, we need to begin to humble ourselves and turn the “why” into praise. Let us come to the Father on behalf of our children so as to praise God in faith that He is who He says He is as well as stand in the faith we proclaim. Additionally, stop thinking only of your situation and begin to ask, “Lord, in all this suffering, how may I aid and comfort another in theirs.”
Asaph closed his psalm with the words, “When my heart was embittered and I was pierced within, then I was senseless and ignorant; I was like a beast before You. Nevertheless I am continually with You; You have taken hold of my right hand. With Your counsel You will guide me, and afterward receive me to glory. Whom have I in Heaven but You? And besides You, I desire nothing on Earth. My flesh and my heart may fail, but God is the strength of my heart and my portion forever. For, behold, those who are far from You will perish; You have destroyed all those who are unfaithful to You. But as for me, the nearness of God is my good; I have made the Lord God my refuge, that I may tell of all Your works.”
As parents, let us release the bitterness and embrace the God we say we love. Though our feet nearly slipped, allow God to rescue so that our feet are once again planted on solid ground. It isn’t enough to entrust our lives to the Lord, but we must equally, or more so, trust Him with our children.
I Peter 5:10: And the God of all grace, who called you to His eternal glory in Christ, after you have suffered a little while, will Himself restore you and make you strong, firm, and steadfast.
Having a chronically ill child has killed my OCD; there’s literally not enough energy remaining in my body to lend to cleaning my house and ordering things as I am accustomed. Maybe “killed” is overstating a bit. It’s more like a deep suppression, which is worse. If the OCD were dead, it wouldn’t bother me how dirty my house gets! Nevertheless, the point is, I am no longer able to lend attention to detailing my house in a way that meets my approval. I’m severely embarrassed when someone stops by because of the common disarray.
As I’ve previously stated, it is exhausting caring for a chronically ill child, or any person for that matter. The medial tasks one could accomplish prior to their child becoming ill can no longer be done lest you pay an outside source. I’d give just about anything to have the money to hire a cleaning person twice a week. But, when all your money goes into the care of the child, there’s nothing much left, at least for the average family.
Here’s my point. To the parents with OCD who expect certain things of themselves to be executed a particular way at a certain time, allow yourself to let it go. There are, as a matter of fact, more important challenges to daily life than having a spotless house. Would I be more comfortable with a tidy house? Without question! Notwithstanding, I am no longer able to accomplish it. I’ve had to learn to rest regardless of the mess surrounding me. It doesn’t mean I never clean. It does, however, mean I don’t go into a dither when it isn’t done when I believe it should be. I have had to adapt to the circumstances because I surely haven’t discovered how to force life to adapt to my OCD.
Life is hard enough with an ill child, regardless of their malady. We need not heap further pressures to our schedules, especially when they have no real value. Your life and the life of your entire family superiorly outweigh the irritations of an untidy house. For me, learning to lay down the internal pressure of OCD was difficult, but altogether necessary. Rest is hard to come by with a sick child, so I choose to use my “down time” to rest instead of clean. It is of the utmost importance to be as rested as possible so as to not become unable to care for your child and other family members. Learning to let things go has been a huge step in my mental wellness. It really is okay to rest. Let’s not add heaviness to the yoke of life. I encourage you to lay down the stress.
Mark 6:31: He (Jesus) said…“Come to me by yourselves to a quiet place and get some rest.”