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.
This blog is a continuation of the previous one two weeks ago dealing with the school system. I’m certain someone out there can relate. I am still wrangling the school system and their threats of calling truancy, which is absurd on multiple levels. At a 504 meeting last week, the head of the homebound committee said accusingly, “This has gone on long enough. It’s getting out of hand.” Ummm…what? Her reference was that we were using the homebound services too long and Sophia needed to “get back in school.” I have been relatively frustrated after a useless hour and a half meeting. I have had to hurriedly pull all her files, labs, excuses and obtain fresh letters from doctors explaining the situation. This lady demanded “we must have a diagnosis” to which I responded, “There are several. It’s all in the paperwork previously submitted.”
It genuinely takes a lot to rile me but, at one point, I literally walked out. I was fed up with this woman talking down to me about Sophia as though she were a number on a check-list and worse, a delinquent cutting school. My sweet child has never broken the law in her life or been in trouble for anything. I had to listen to this woman berate me as though I were nothing, as though my child was faking. Parents in my shoes, can you relate to this? Have you had dealings with your school system trying to force your sick child to attend school when they cannot? It is madness. Apparently they’re only concern is money and reputation.
More and more I’m hearing of parents, good parents caring for their sick children, being carted off to jail because their kid is absent. Forget the fact they’re legitimately ill with proper documentation; that doesn’t seem to suffice with many of the district’s regulations. I found it interesting that this woman pulled out demands and when I asked, “Is that a new rule?” she cited “It’s in the handbook.” What this reveals clearly is the rules are fluid, not concrete. They can use them with whomever whenever they feels so inclined.
My sadness and concern comes with knowing there are plenty of good parents who have no connections, who cannot afford an attorney, and who may not have kept good records so as to pull them out at will. What are they to do? Where are they to go when threatened with truancy and jail time? Many are single parents working more than one job and definitely could not afford the necessary tools to fight the system.
I have reached out to our local news channel who investigates unresolved disputes in the community and they are interested in the outcome if next week’s meeting renders no resolve. I have no qualms with going public, no fear of the juggernaut that is the school system at large. I’m tired of the government having their hands so deeply imbedded in my child’s life she isn’t allow to be sick lest her parents get thrown in jail for keeping her home. My encouragement and my joy, as always, are knowing God has a plan. I am confident the Lord has previously won this battle, yet we all must go through battles to get to a better place. I do not waste time worrying or losing sleep over any of this as my God is my defender. I do my due diligence, I follow their rules and I’m proactive both in the spirit-realm and the natural.
Deuteronomy 20:4: For the Lord your God is He who goes with you to fight for you against your enemies, to give you the victory.
II Chronicles 20:17: You will not need to fight in this battle. Stand firm, hold your position, and see the salvation of the Lord on your behalf, O Judah and Jerusalem. Do not be afraid and do not be dismayed. Tomorrow go out against them, and the Lord will be with you.
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?
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.
II Corinthians 10:4-7: For the weapons of our warfare are not carnal but mighty in God for pulling down strongholds, casting down imaginations and every high thing that exalts itself against the knowledge of God, bringing every thought into captivity to the obedience of Christ, and being ready to punish all disobedience when your obedience is fulfilled. Do you look at things according to the outward appearance?
A major issue with having a chronically ill child is dealing with depression, theirs and ours. For the child, depression is very common and to be expected. After all, they lack the maturity to process their emotions; therefore, in their continuous illness, it can easily become overwhelming to the point of depression. Our role is to keep our children uplifted, both in prayer and in spirit. We must readily encourage them, not with falsehoods but with the hope of Christ and His promises to His righteous seed.
We cannot buckle underneath the pressure of the illness or the possible consequences of said illness. We must not allow fear, anxiety and/or intimidation to set in; anyone with a sick child can relate to what I’m saying. Properly handling your child’s depression will heavily rely on how you deal with it in yourself. First, we must understand that, when we are depressed, it means we have lost sight of our hope in Christ. That applies to me as much as anyone. When I begin to feel it knocking at my door, I must first recognize it for what it is: an enemy of God. Depression is a manifestation of one taking their eyes off God and placing them on themselves, their ability or inability, the situation, helplessness, or what have you.
Secondly, if you, the parent, do not properly assess and confront your depression, there is no way you can aid your child in their depression. Thirdly, one must turn to the Scriptures if you plan to eradicate depression with efficacy. The Word specifically instructs God’s people to “pull down (away from self) imaginations, strongholds, and every high thing that exalts itself above the name of Jesus.” In other words, we must take hold of any and every thought not of God in our minds, hearts and spirits so as to allow the hope of Christ to reign. Because Yahweh, before the foundation of the world, understood the weaknesses of mankind and our feeble faith and mindset, He scribed instructions as to how to proceed when such faithless, self-centered thoughts entered our minds.
Depression, in a nutshell, stems from godlessness; godless thought patterns, godless strongholds, godless imaginations and/or godless occurrences sent from Satan to lure us into darkness. This does not mean the person is not redeemed from hell, but rather their mind has been altered due to circumstances that have caused trauma and disillusionment. In this, it is our responsibility and our right as heirs to the Kingdom of God to take captive anything not of God, bring it into the obedience of Christ, willing to punish all disobedience until our obedience is complete. It is our duty to keep our minds sharp, clean and clear of the debris of life. When we do, we will be fully equipped to, not only encourage ourselves in Christ pulling ourselves out of depression, but our children and family as well. Keep your mind, spirit and heart stayed on Christ, not on the circumstance, trauma, sadness, depression, lack of finances, or anything other than God, His Kingdom, His greatness and His everlasting love for you and your child.
I Peter 5:6-11: Therefore humble yourselves under the mighty hand of God, that He may exalt you at the proper time, casting all your anxiety on Him, because He cares for you. Be of sober spirit, be on the alert. Your adversary, the devil, prowls around like a roaring lion, seeking someone to devour. But resist him, firm in your faith, knowing that the same experiences of suffering are being accomplished by your brethren who are in the world. After you have suffered for a little while, the God of all grace, who called you to His eternal glory in Christ, will Himself perfect, confirm, strengthen and establish you. To Him be dominion forever and ever. Amen.
Facebook Group: Encouraging Parents with Chronically Ill Children
Yes and Amen!
“For all the promises of God in Him are Yes, and in Him Amen, to the glory of God through us. (II Corinthians 1:20, NKJV).”
“But the wisdom from above is first pure, then peaceable, gentle, reasonable, full of mercy and good fruits, unwavering, without hypocrisy. And the seed whose fruit is righteousness is sown in peace by those who make peace (James 3:17-18, NAS).”
Though we are pressed on every side, though we experience sorrows and disappointments of various kinds, we will not be distressed because we know we are one with a God who will not be mocked. God’s wisdom as stated in James 3 allows us to remain at peace in the innermost part of our being. I heard such peace likened unto a deep well. The various storms such as hurricanes, tornadoes, drought, and blizzards will cause ripples, even waves, at the top of the well’s water, but in it’s deepest part, its core, it knows nothing of the storm.
The heart of the well is the same as our peace that passes all understanding. Though the storms of life cause topical tossing and turning, turbulence and wounds, our spirit, our inner man, remains undisturbed. Knowing the nature of our amazing God and walking in His wisdom allows such untouchable peace.
From the beginning, God strategically planned every move He made from materializing the physical from the spiritual, creating Lucifer knowing he would defect, creating Adam and Eve knowing they would fall prey to temptation, all the way to your present situation and beyond. He knows who will die young, who will faithfully remain in the Vine, who will fall away like an exposed seed in the hot sun, and who will flourish in the Earth expanding the Kingdom of God through faith and obedience.
God’s strategy is for you to know His plans through knowing His heart for (the opposite of against) you. You may not always know specifically what He’s doing, but you can trust that, whatever it is, no matter how difficult the situation, He is for you, always and forever. Operating in God’s wisdom will always conquer fiery black hole experiences no matter the external damage they may inflict. Stand in the promises in the evil day and, having done all, stand (Ephesians 6:13). This is core (Spirit to spirit) instruction. God’s heavenly wisdom is a crucial element in the armor of God. His promises are YES and AMEN!
Navigating the Fiery Black Holes of Life, chp 2, part 3
to be released fall of 2016
Alexys V. Wolf, author
“…exult in our tribulations, knowing that tribulation brings about perseverance; and perseverance, proven character; and proven character, hope; and hope does not disappoint, because the love of God has been poured out within our hearts through the Holy Spirit who was given to us.” Romans 5:3-6 (NAS)
“Blessed is a man who perseveres under trial; for once he has been approved, he will receive the crown of life which the Lord has promised to those who love Him (James 1:12, NAS).”
Definition of Exult: to rejoice greatly; be jubilant or triumphant
Definition of Black hole: a region of space having a gravitational field so intense that no matter or radiation can escape
There is no one exempt from having what I loving call black hole experiences. Black holes of life can be in conjunction with money, family, friends, enemies, death, illness, addictions; international, national, state, county, city and neighborhood governmental issues and countless others. All too often these black hole experiences cause one to miss God, deny God, turn away from God, or on the contrary, cause someone to dive right into the very heart of God. The latter, which is God’s intention, are people who have sought and experienced the hand of God in the worst of the worst times of life. Because the world’s system is under Satan’s corrupt management, these black holes come in different forms in different stages throughout life.
The only genuine resolve anyone can have during these times is surrendering to the Creator of Heaven and Earth. In such surrender, God is readily able and willing to turn what Satan meant for evil into good. The only requirement for God to turn evil to good is to love Him. Of course, to truly love Him, you will believe, submit, repent, be baptized in the Spirit and obey the Spirit of God. Simple enough, eh? Yet, in this simply stated command of God to love Him, we miss it time and time and time again; hence, many are decimated or nearly so under the weight of earthly conundrums.
God instructs His bride to “exult in tribulation” as stated in Romans but this does not mean that we are to conjure tribulations for the sake of tribulations, extend trials to appear humble or godly, revel in them as though we are godlier because of them, milk them for sympathy or attention, or reject times of solitude and calm. The way to rejoice greatly in suffering is to trust with absolute faith that, as we walk in accordance to the will of God, the Lord will be honored and glorified when He shows Himself mightier than the situation. With His glory manifesting, you will also benefit; it’s a guarantee. Yeshua (restorer) promises to turn everything Satan means against you for evil into good if you love Him.
The “love God with all your heart, soul, mind and strength” section that is reiterated throughout the whole of the Bible is not optional; such love for God causes obedience through love instead of law. In order for His promises to be perpetually active in your life, you must purpose to love Him; this is not the same as living according to staunch law as your motivation to do what is right. Both Romans and James above notate this fact: reciprocating God’s love is key. The entirety of the Word of God and this book center around love: God first loving us and, in return, through reciprocated love toward God, we are to surrender ourselves as dead so as to receive His life of eternal love. In such submission, Jesus becomes our life and He will always be obedient to the Father and at peace just as He was in the boat during the terrible storm.
We are to rejoice in trials (not enjoy) by fully trusting God and, in that unwavering faith, God will be glorified and your trial will turn into something far greater than what you knew prior. Trials are to build endurance, perseverance and hope in the King and His kingdom, yet most just want God to get us out ASAP never considering the Kingdom ramifications of getting out too quickly as the lesson is not yet or not fully learned. The Lord will allow some “thorns in your side” to remain throughout your lifetime and others but for a brief period. Either way, all trials are supposed to be teaching tools so as to lead you into deeper levels of humility and refine you so that Holy Spirit becomes your only resource versus any self-reliance. I know people on both ends of the proverbial spectrum:
- Those in Christ who think that all life is to be filled with tragedy and trials because they think it makes them “closer to God.”
- Those who reject all suffering; they won’t even speak the Scriptures pertaining to suffering because everything should be “fixed” the moment they bind it away in the name of Jesus.
From everything I’ve read in the Word, seen and experienced, neither is correct. There must be balance in everything as there is a season for everything. Seek God’s heart, wisdom, revelation, and understanding of how to properly apply His Word and you’ll find balance. Most assuredly, it takes the entirety of this brief life to come into perfect balance.
As for the former, it leaves one missing the blessing of true peace because, in the calm, they’re panicked that they must be in sin since no trial is present, therefore they seek one. True peace is not about circumstances, but trusting God no matter the circumstances.
With the latter, it leaves one missing deeper levels of humility because trials do indeed humble a person. When these folks have one, they always look only for the “why me” or “what have I done wrong?” They tend to drive themselves to madness when things don’t “fix” promptly. It perpetuates either pride in assuming, “it must be Satan attacking me because I’m in the right,” or condemnation because, “I must be doing something wrong.”
Both groups lead people to fall away from the Lord or to stay constantly frustrated since no one wants perpetual trials and no one in this fallen world can live up to never having a trial. Rejoice, ladies and gentlemen of God, rejoice in the Lord, our Sovereign! In your black hole experiences, it is definitely prudent to seek God’s face to reveal the “why” of it. If you are in sin, stop, repent, and go and sin no more. If it’s demonic, take authority over the demon(s) in the name of Jesus. If it’s a thorn in your side that God will not remove, come to terms with it, allow God to utilize it for the good of the Kingdom of Heaven, and be at peace instead of angry at God. He always has a better plan. No matter the root of your testing, until God reveals it, rest and trust Him knowing that the grace of God is upon the obedient and those who love Him. God is faithful always.
Chapter 1, Navigating the Black Holes of Life
Alexys V. Wolf