One of many issues with having a chronically ill child is knowing how to cope with other people who do not know what to do with or for you. I have found that people, even those who love us dearly, do not know what to do, so they do nothing and often pull away. They’re afraid to say or do the wrong thing, so they go silent. As the parent, it poses the problem of us becoming offended, angry, saddened or even depressed that friends and family seem to be disappearing left and right, especially when we need them the most. It’s easy to feel abandoned when we’re the most vulnerable because we are already stressed and feeling isolated given the nature of the situation.
What we parents must come to terms with is how to allow others to separate from us without becoming or, at the very least, remaining angry. Just as we ourselves often don’t know what to do, imagine how they feel. They have not endured as have we, they have not suffered and watched our children suffer as have we; they have no concept of what to do because they are not in our shoes. It is vital for our relationships outside the immediate family, as well as for our sanity, to allow people to pull away when necessary without us being embittered against them. Let’s face it, half the time we want to run away! How then can we begrudge others who have the freedom to do so?
Caring for our child is extremely difficult on a myriad of levels and we do not have the right to put that burden on others. We must keep ourselves accountable, but we cannot hold others accountable for not being able to deal with our situation. They cannot possibly grasp the magnitude of having a chronically ill child lest they have or are going through it themselves. It is selfish for us to want others to understand because that would require them having their child become ill as well. That is unfair and unreasonable.
It all goes back to staying our mind on Christ; keeping our minds and hearts set on His love, comfort and mercy. Just as He is considerate of our shortcomings, we too must be considerate of others. Not everyone can cope with the same things, not to mention other folks have their own crosses to bear and we don’t always know how to talk to or assist them. Let us be mindful of what we expect from others. Let us be mindful that we’re all going through something so that we don’t put pressure on our loved ones to be what we think they should. Allow them to be who they are and focus on what is most important – our child’s wellbeing. We must guard our hearts so we are not led astray by the actions (or lack) of others. Let the mind that is in Christ be also in us. Bitterness we allow to take root will hurt us and everyone around us, not excluding the sick child.
Proverbs 4:23: Above all else, guard your heart, for everything you do flows from it.
Hebrews 12:15: See to it that no one comes short of the grace of God; that no root of bitterness springing up causes trouble, and by it many be defiled.
Chapter 5b: Abdicating the Throne of Flesh
“For we are the true circumcision, who worship in the Spirit of God and glory in Christ Jesus and put no confidence in the flesh…(Philippians 3:3, NAS).”
“Among them we too all formerly lived in the lusts of our flesh, indulging the desires of the flesh and of the mind, and were by nature children of wrath, even as the rest (Ephesians 2:3, NAS).”
Definition of Circumcision: removal of the foreskin or prepuce of the male genital organ
In the natural, circumcision is a customary, religious practice of being set apart from other people groups by removing a layer of skin not required for life. It is removed as a symbol of purity. One is born with it but is not necessary to sustain life, much like the appendix or gallbladder. Spiritually, God calls His people to be “set aside” through circumcision. We’re all born with a fleshly, sinful nature, but it must be cut away so as to be set aside unto God. It has everything to do with characteristics and predispositions with which we are all born. To say, “I was born this way” as if to excuse sin or bad behavior is invalid before God. We’re all born with characteristics, flaws and temptations that, once in Christ, must be abdicated to God through spiritual circumcision. For that matter, we’re all born little babies, but we do not remain in such a form.
To be circumcised in Christ means you live only unto Christ and you willingly cut away that which is displeasing to the King. It is a matter of surrendering everything. “Put no confidence in the flesh” Paul says, by definition, the flesh is defiled. The fleshly nature of mankind is a heavy yoke no one can bear very long. It is condemned and can breed only corruption, no exemptions. There is no exclusive club comprised of people who are born into righteousness. We are all born into the nature of the world with our minds corrupt from birth. There are natural weaknesses that don’t need to be kept and controlled; they need to be forfeited altogether for the cause of Christ.
A baby or young child may be innocent from blatant sin, but a child naturally knows how to manipulate with crying, whining, begging, nagging and things of the like. It comes naturally figuring out quickly how to get what it wants. That isn’t innocence, that’s the sin nature at work without even realizing what’s happening.
It is crucial you and I understand we are all born into the sin nature of Adam. There is no good person good enough that God would look upon them and say, “Okay, you, you and you are exempt from resigning the Adamic nature because I like your style!” Jesus said, “Why do you call me good? There is no one good but God (Matthew 19:16; Romans 7:18).” True circumcision is spiritual and it is a matter of cutting away that which divides you from intimacy with God.
All God’s people should desire and pray that “the natural will become unnatural and the supernatural of God become natural.” Translation: you personally should be so attuned to and led by Holy Spirit that acting worldly becomes unnatural, and operating supernaturally, as God, becomes everyday life. In this condition, whatever unholy characteristics are present with which we are born, they are brought into submission to the Holy One so that He will reign in their stead.
“They (the righteous) will have no fear of bad news” reads Psalm 112:7. For anyone who walks with God who has a chronically ill child, this verse alone has the power to uplift the most downtrodden in the darkest of times. God’s promise to those who love Him and keep his commands is that the righteous will never be forsaken, they will never be shaken.
I speak as one who is, through Jesus’ blood, the righteous seed of Abraham. As such, I have no fear of bad news because I trust the One who upholds His word as well as our family. Over the last 9 years, especially the last 3, I have watched Sophia go up and come down thousands of times over. One by one, we hear a diagnosis for this and for that. Just last week they determined she has dysautonomia, a malfunction of the nervous system. Three times in a week she had to get IV fluids because her body can’t retain them. This is causing chronic dehydration, fevers and tachycardia. Our next step is to visit the neurologist and cardiologist.
I can say without hesitation, I have no fear of bad news because my confidence lies in the God of all creation. It does not mean I like what’s happening or that I am enjoying watching my daughter suffer. It does mean I believe beyond what I see. I trust all things work together for good for those who love God. My heart is secure in Jesus, the Christ. I will praise Him all the more until I see heavenly, divine results concerning Sophia. My encouragement is in personally knowing who God is; in such intimate knowledge, it overrides temporary discouragement.
“Surely the righteous will never be shaken; they will be remembered forever. They will have no fear of bad news; their hearts are steadfast, trusting in the Lord. Their hearts are secure, they will have no fear; in the end they will look in triumph on their foes. They have freely scattered their gifts to the poor, their righteousness endures forever; their horn will be lifted high in honor (Psalm 112:6-9).”
One of many issues with having a chronically ill child is dealing with the emotional and psychological toll. As a parent, when your child is sick for an extended period of time, for many people, there’s no escape because you are with them 24/7. You’re administering medications, taking them to the next doctor’s appointment or simply holding and comforting him or her hours at a time. To say it is “draining” and “overwhelming” is a gross understatement.
I can only speak from my perspective as I have not journeyed with any other parent and their sick child. I’m certain it is different in each situation but, at the root, we’re all exhausted which makes us the same. Since I don’t have a mountain cabin, a beach house or even a separate office at my disposal to which I can get away and I don’t have the means to hire a nursing staff to care for Sophia, I have to go in my room, shut the door and simply sit in quietude, just me and God. There I am able to regain my sanity once more as I talk to mine and Sophia’s Creator.
Being a caregiver of anyone is difficult in its own right, but caring for your baby of any age is quite another thing. Life can become so overwhelming you don’t know which way to turn. Graham Cooke said this and they are life-changing words by which I choose to live: “We are not here to be overwhelmed by life, by circumstances, by the wickedness of people, or by what the enemy is trying to accomplish. We are here to be overwhelmed by who God is for us.”
As I continue on this path with my God-created daughter, daily I remind myself that God is in love with her and with me. In this remembrance, I rest is who God is in every situation. I am at peace knowing Christ carried this specific burden at the Cross of Calvary. His Kingdom has equipped me with everything I need in each and every moment. When I begin to feel overwhelmed by the circumstances before us, I breath; I commune with the sovereign, holy God, and I choose rest instead of allowing chaos to ensue.
The tactic of Satan is to get us to panic because, when we do, we lose sight of God and His purpose. I am sustained even when I do not know what to do in a given moment. God is faithful, He is just, He is loving and He has a plan; I have walked with Him long enough to experience this fact. According to Romans 8:28, all things (good, bad, uncomfortable, painful, etc.) work together for good to those who love God, to those who are called according to His purpose. I bank on this promise every single day. He will not let us down despite how bleak things can appear. I rest in His greatness.
Psalm 27:13-14: I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and let your heart take courage; yes, wait for the Lord.
Chapter Three: Gaining a New Perspective, part I
“The Lord opens the eyes of the blind; the Lord raises up those who are bowed down; the Lord loves the righteous (Psalm 146:8, NAS).”
“The Spirit of the Lord is upon me, because He anointed Me to preach the gospel to the poor. He has sent Me to proclaim release to the captives, and recovery of sight to the blind, to set free those who are oppressed (Luke 4:18, NAS).”
Definition of Perspective: a particular attitude toward or way of regarding something; a point of view.
Definition of Surrender: cease resistance to an enemy or opponent and submit to their authority. Synonyms: forsake, deny, stand down, resign, disclaim, relinquish, forgo, cede, abandon, concede, yield, submit, relent, renounce, abdicate, transfer
Graham Cooke said, “Obstacles are a part of life. There is often no way to avoid them. However, there is a way to change our perspective so they can be used to our advantage.” Everything we do hinges on our perspective of what’s happening to us, for us, against us and around us. It is common knowledge that, with every action, there is a reaction. How we respond to things around us is always based on what we perceive is happening, be it good or bad.
For example, when my first husband left me with a note on the coffee table, I perceived it as the worst thing that could possibly happen to me. I was raised that Christians do not divorce, no matter what. Even though he had cheated, lied, mocked, neglected, shunned, and altogether broke our covenant vows in every conceivable way, I deemed his departure as a negative. I cried, and cried and cried and cried some more. I begged him to come home and be the man he was supposed to be. I willingly forgave him and was willing to put it all behind us.
When he did not comply, I began tail-spinning into a dark, sad, lonely, angry, desperate place for the better part of seven years, to which I refer as my “seven years of rebellion”. I slept with men not my husband, cussed like a sailor, I spoke harsh words to a long-time friend, and couldn’t stop pretending I was fine. Because I couldn’t see the grace of God causing him to leave, I couldn’t properly respond. My eyes were blinded and I blamed everyone except the culprit: me.
Yes, he did horrible, despicable things but, had I initially sought the face of God, I wouldn’t have married him. Looking back, the signs were evident. I simply refused to acknowledge them. If I could have perceived God’s voice prior to marriage, the marriage would not have happened; hence I would not have experienced undue pain and suffering. It is only when we seek God’s vision in each situation of life that we are able to see as He sees so as to respond according to the Spirit instead of according to the flesh.
Once I returned to and resigned my whole life to Christ in 2000, I began a new, fresh journey with Christ as I had never known or experienced. I began to see that, even though I had made a huge mess of my life due to poor decisions, God’s promise to “turn all things for good for those who love Him” was for me personally. Instead of trying in my own strength to “pick up the pieces,” I was fully able to leave all the pieces behind me and allow Christ to make a whole new me. The old pieces were not required and certainly me having to “pick up” anything of the old was not necessary.
Understanding this, my decisions, little by little, began to morph into something new, something altogether other-worldly. My discernment sharpened and continues to do so today. Every time I need to make a decision and I don’t readily know what to do, I rest in Christ and wait. I allow Him to show me what to do when the time comes.
In the worst circumstances, in the weakest places of life, before you do anything, ask God to grant you His vision, His perspective, and His will so as to go forward in His strength. A changed perspective will change the course of your life because it will change how you respond to everything. When you surrender your fleshly, natural, limited vision to the Holy One, you’ll be amazed at how darkness will be turned to light!
When All My Strength Has Failed
Alexys V. Wolf
Hebrews 11:1, 6: “Now faith is the assurance of things hoped for, the conviction of things not seen. For by it the men of old gained approval…without faith it is impossible to please Him, for he who comes to God must believe that He is and that He is a rewarder of those who seek Him.”
Some of my all-time favorite Scriptures are found within the confines of Hebrews 11. When I first returned to the Lord nearly 18 years ago, I poured over these so as to learn how God views faith, what faith is at its core. All these years later, I am having my faith tested around every bend, one thing after another, after another. There are moments when it feels as though the roof above me is caving and the floor beneath me is sinking. But, I thank God I don’t function in feelings but in faith. Ninety-nine times out of one hundred, feelings are not in sync with the Kingdom of Heaven.
Michael’s job has had threats of termination for at least a year, but that didn’t bother me, not once. Wednesday, he was terminated; that didn’t move me to fear. We found stachybotris black mold in our home two years ago and had to find money, even after insurance, so as to make the necessary alterations to a 1/3 of our home. No fear. Now we discover we still have mold in our home causing Sophia’s illnesses and insurance will not pay. No fear. Numerous issues have transpired over the last 6 or so years and I have been unwavering in my faith in our Mighty God. But, as I live and breathe, nothing has tested my faith more than having our child’s life in peril. I would venture to say that, for any parent worth their salt, whether there is imminent danger such as cancer or heart disease, or chronic illness that never seems to end, faith is always on the line in an inexplicable form.
I would go strongly, unshakable in my faith long stretches without a wince of fear but, in a moment of absolute frustration and sorrow watching my child suffer day in and day out, believe me, I had flickers of doubt. They never lasted long as I would quickly realign my mind, heart and spirit with Holy Spirit, but they would appear nonetheless. I love II Timothy 2:13, “If we are faithless, He is faithful, for He cannot deny Himself.” Spectacular! My God is always faithful. When I look at my beautiful teenage daughter, I am reminded of God’s faithfulness. She’s alive, whether sick or well. There’s hope. We are here on Planet Earth another day, there’s hope. God is alive and stronger than any danger we may face, there’s Hope.
Fortunately, my hope is not on man’s version of limited hope which is utterly fickle and fluctuates according to how I feel in any given moment. No, my hope is living; it is alive through Jesus the Christ. My faith is not in medicine, doctors, nurses, or anything made by hands of man. Though God may well move for a time through the aforementioned, God is the only healer and comforter. In Him I always rejoice! My faith is anchored in Christ alone, the One who created Sophia. Through it all, both mine and Michael’s faith have soared to places I didn’t know existed until we began this journey with a chronically ill child. Do not lose faith. God is faithful. He has never forsaken us and He has not forsaken you.
I Peter 1:3-9: 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, 4 to obtain an inheritance which is imperishable and undefiled and will not fade away, reserved in heaven for you, 5 who are protected by the power of God through faith for a salvation ready to be revealed in the last time. 6 In this you greatly rejoice, even though now for a little while, if necessary, you have been distressed by various trials, 7 so that the proof of your faith, being more precious than gold which is perishable, even though tested by fire, may be found to result in praise and glory and honor at the revelation of Jesus Christ; 8 and though you have not seen Him, you love Him, and though you do not see Him now, but believe in Him, you greatly rejoice with joy inexpressible and full of glory, 9 obtaining as the outcome of your faith the salvation of your souls.
“Beloved, do not believe every spirit, but test the spirits to see whether they are from God, because many false prophets have gone out into the world (I John 4:1).”
One of many issues with having a chronically ill child is feeling bad about questioning their diagnosis and/or prognosis. I have questioned every single doctor at some point in time. Many people struggle with this because they feel as though, because the physician has the education, they can never be incorrect in their analysis. I say to you, “Always question everything!” No one is perfect and no doctor knows everything. I accept nothing at face value because the Word of God demands we test every spirit, bar none.
I am a firm believer in being proactive. Some of the confidently stated diagnoses in the world were 100% inaccurate. People across the globe have received death sentences and lived to tell the story of their miraculous recovery proving their doctor’s prognosis incorrect. God always has the final say. Do your research. Leave no table unturned. The person who takes the best care of a child is the one who loves them the most; more often than not, it’s their parents. We who are in Christ must place our faith in God, conduct spiritual warfare and do our homework. You are the one paying the doctor’s salary; hence, you have the right as well as the responsibility to ask pertinent questions.
Personally, I deem it irresponsible to blindly take a doctors word because that renders their word as gospel. If I had not questioned Sophia’s pediatrician, she’s be in a much worse situation today. I had to get her to the right people who would acknowledge what is seen as well as what I know as a mother. No one knows your child better than you because you live with and care for them day in and day out. No one else witnesses all you encounter daily. If a doctor attempts to intimidate you when you inquire, do not back down. Doctors who are worth their crust don’t mind questions and, in fact, welcome them.
Additionally, even if you recognize what the doctor is saying is accurate, speak the promises of God over them instead of the problem at hand. Just because the diagnosis may be right in the moment, God can turn it around. Speak life over your child and not death; speak wellness over them and not illness. For example, I can be in conversation with someone and respond to their questions, “Currently, Sophia has a condition of _____________.” But I will continue with confidently speaking, “But I know it isn’t forever. I know God has a perfect plan and purpose for her life and I fully expect it to manifest in the days to come. What Satan has devised for evil, God will turn for her good.” Now, I may not say those exact words, but you get my meaning. Always speak life, never death because words are potent, they are fiercely powerful. Life and death are in the power of the tongue (Proverbs 18:21). Test the spirit from which you are speaking. If it’s negative, full of doubt, depression, or anything of the like, it is not of Holy Spirit.
In fact, I purpose, though I falter occasionally, never to vocalize how arduous this is lest I find myself drifting into depression, sorrow and self-pity. I cannot stress enough that our words matter. The same spirit that raised Jesus from the dead lives in you if you have surrendered your life to Christ. Allow your focus to be on God instead of the circumstances and your words will follow suit.
“These things I have spoken to you, so that in Me you may have peace. In the world you have tribulation, but take courage; I have overcome the world (John 16:33).”