Encouragement for Parents with Chronically Ill Children

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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.”

 

When All My Strength Has Failed

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Chapter 6: Becoming Base and Foolish, part I

“but God has chosen the foolish things of the world to shame the wise, and God has chosen the weak things of the world to shame the things which are strong, and the base things of the world and the despised God has chosen, the things that are not, so that He may nullify the things that are, so that no man may boast before God. (I Corinthians 1:27-29).”

Most view weakness as foolishness, as if it’s the worst thing that can happen to someone. Adversely, it’s when we weaken ourselves completely before the Father we are able to go beyond human ability. God purposes to nullify the things that are (anything of human ability) so that we have nothing left from which to boast or pull strength.

God has graciously granted mankind His image which includes a great many assets, gifts, attributes, talents, brains, brawn, and so on. His directive for such assets is so we may glorify the King and flourish in the Earth, subduing it as was intended in the Garden of Eden. We are to bring Heaven down to Earth. Unfortunately, mankind, in all its pride, has become more dependent upon such gifts from God in lieu of God. Instead of leaning upon Christ, we use them when we should submit them allowing God to utilize them for the good of all mankind. For instance, if you have a gift of prophecy, you may speak something out of your great intellect instead of waiting upon the Spirit to lead. This is using human power instead of Holy Spirit revelation. Furthermore, if you have a talent of painting, you may for the sake of a huge paycheck paint something not approved of God because you can. You did it with the mindset, “God must be blessing me” when it had nothing to do with God at all.

People who do subject everything to God are considered foolish, childish, silly, and worse. People say, “You can accomplish____________ in your own strength. Why do you call upon God?” These same people, in due season, become humbled by the same God on whom they spit. We who are hidden in Christ recognize we are nothing and no one outside the perfect will of God. We are to become as dust and ash as did Job at the end of his trials. He once leaned heavily on his abilities to accomplish all he did pre-trials. He stirred God’s wrath by justifying himself. Unlike the norm, Job finally saw the error of his ways, humbled himself and was then positioned before the Almighty to be doubly blessed.

When will we see from the perspective of Heaven? When will God’s people humble themselves, make themselves as nothing so that God may intervene? We’re so busy being angry with God for not stepping in or having allowed our predicament in the first place. We are remiss simply because we do not understand He’s attempting to bring us to foolishness so that He may be our wisdom, our solace, our Savior, our everything.

When All My Strength Has Failed

Chapter 6, part I of III

Alexys V. Wolf

 

Encouragement for Parents with Chronically Ill Children

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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.

When All My Strength Has Failed

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Chapter 5b: Abdicating the Throne of Flesh

True Circumcision:

“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.

Encouragement for Parents with Chronically Ill Children

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Caring for a chronically ill child is marital stress. Ladies and gentlemen, this is no joke for the strongest of marriages! Trying to find alone-time to spend with one another is like searching for a needle in a haystack. If found, attempting to have the energy to enjoy one another’s company without falling asleep tout de suite is virtually impossible! People, such as in our situation, who are caring for a sick child nearly 24/7/365 scarcely have a moment alone for themselves, much less for their spouse. It is sad, but all too true. It could easily crumble the most virile of marriages. Here are a few tips I’ve picked up along the way: 

  • Purpose to steal a moment here and there with a touch, a wink, a conversation, a text; find whatever is intimate between you and your spouse. These little nuances are where your marriage will be sustained until you have actual quality time to spend with one another.
  • Always say “I love you” regardless of how exhausting our day has been. Never neglect one another even if you’re bone tired. The little things matter.
  • Stay attractive even when you want to slob out every moment of every day. Seriously, this is a thing! For me, I put on make-up, do my hair and put on clothes (not a bathrobe!) regularly (though I miss a day here and there), even when I know I won’t be leaving the house that day. It is important that I maintain who I am even though it feels like I’m completely swallowed in care-giving.
  • Find something to watch you both can enjoy in between the stopping to attend your kid’s needs. Togetherness, even sporadically, is more important than you may think.
  • Remind yourself you are not a “team” as that would depict two separate entities. You are, rather, “one” as Christ has brought you together as such. Do not function separately together, but together as in “there is no divide” – you are a united front. 
  • Share the responsibility even if one has a larger role than the other. Don’t be afraid to allow your spouse to help – this is vital to your sanity as well as your marriage.

 

It is of the utmost importance to remind yourself you are in this together and you must face life’s challenges together united as one. Otherwise, it is all too easy to internally go your separate ways without even realizing. The busyness of life is hard enough but, with a chronically ill child in the mix, the busyness can become an insurmountable barrier like the Great Wall of China. Find the time to say “I love you” and, better yet, to show “I love you.” Don’t allow anything to come between you and your spouse. Pray, laugh, cry, aid you child, as one. Above all, put on hope, faith and love in Christ as a united front; this is where you will find your peace and encouragement.

 

Ecclesiastes 4:9: Two are better than one, because they have a good return for their labor: if either of them falls down, one can help the other up. But pity anyone who falls and has no one to help them up. Also, if two lie down together, they will keep warm. But how can one keep warm alone?

Encouragement for Parents with Chronically Ill Children

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“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).”

When All My Strength Has Failed

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Chapter Five: Abdicating the Throne of Flesh, part I

“but I discipline my body and make it my slave, so that, after I have preached to others, I myself will not be disqualified (I Corinthians 9:27, NAS).”

Therefore I urge you, brethren, by the mercies of God, to present your bodies a living and holy sacrifice, acceptable to God, which is your spiritual service of worship (Romans 12:1, NAS).”

Definition of Abdicate: renounces one’s throne. Synonyms: disown, renounce, give up, refuse, relinquish, repudiate, abandon, turn one’s back on, wash one’s hands of, forgo, waive, abjure

I love this word “abdicate” because it is so in line with the meaning of “deny self”, “die to self”, “take up your cross”, “surrender”, “living sacrifice” and other expressions of ridding our person of the nature of the flesh. We, mankind, have made our flesh our throne from which we rule and no one can tell us what to do – not even God.

We worship self by following our heart when we should deny the heart. Jeremiah 17:9 reads, “The heart is deceitful above all things, and desperately wicked: who can know it?” No possible hope can be found in the heart of a man separate from the heart of Jehovah. This is why it is a matter of life and death that we disown the throne we have made of ourselves and abdicate to the King of kings. Do you remember the definition of “surrender” in chapter three? It is to “cease resistance to an enemy or opponent and submit to their authority.” The throne of self is the enemy of the Throne of God and must submit.

Since Christ is our only hope, it makes sense that one would have to concede unto the One who can save those who are lost. We must deny ourselves if we are to expect anything of the Lord, especially strength. It’s all too easy for the flesh to appear strong when there are no real struggles afoot but, when things begin to go awry, we can’t help but acknowledge the glaring weakness of the flesh.

Paul, a mighty warrior for the Kingdom gospel, said he “made his body a slave”. This is because he understood full well how askew the flesh of man is, no matter the man, no matter how closely that man walks with the Lord. In fact, it was because of his close relationship with the Lord that he understood the intensely sinful nature of mankind. He went on to say that he made his body a slave so that “I myself will not be disqualified”. Many a person of God has fallen away due to the fleshly nature they refused to abandon, all the while preaching salvation to others.

We read in Mark 8 that, for those who want to save their life, they will lose it and vice versa. We cannot rightly attempt to hold to this life and somehow force it into morality so as to please God. The flesh must be acknowledged and rendered as dead since it already is. This is taking up our cross – it is death to self. The flesh will never be transformed into the image of God; therefore, it cannot be allowed to thrive even when we believe it to be “under control.”

If Jesus had to give up His life due to the nature of the flesh, this tells us the flesh is defiled beyond restoration. Christ did not give up His life that we may have ours; He gave up His life that we may have His. We are to take on His life into our mortal shell. We try too hard as “Christians” to will our flesh into submission or, in other words, we try to keep it controlled, much like a pet Rattlesnake. It is impossible to control the uncontrollable long-term. It must be extinguished; it must be 100% subjected to the holiness of Almighty God. This is the only possible way to become self-controlled – subjected and surrendered to Christ’s life.

You will read this in all my writings because it is all throughout God’s Word. The Bible is clear. The flesh being forced into morality is not the solution. It is weak and we must stop pretending it is strong enough to allow us to overcome our circumstances. To get to the root, flesh is not only weak but altogether defiled and dead in the sight of God; it is irreversibly cursed. It can never produce enough strength or power to aid you in a torrential downpour of life.