chronically ill children
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.”