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.
“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.
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
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).”
My name is Alexys V. Wolf. I am first and foremost a wife and mother of two beautiful teenage daughters, as well as a minister, author and artist. I founded The Fiery Sword Ministries in 2007 and have multiple published books dealing with a garden variety of spiritual issues. The purpose of this blog and group, Encouragement for Parents with Chronically Ill Children, is to aid fellow parents in their journey with sick children.
By way of introduction, my eldest daughter, Sophia, started getting sick at six months old with double ear infections, yet they were nothing spectacular; nothing that would send red flags of future chronic illness. She was otherwise a well child until the age of five when she developed chronic stomach aches and UTI’s. We dealt with those nearly a year. When the gastroenterologist performed at endoscopy, he said he found no acid reflux but she had severe unexplained constipation. Unfortunately, the acid reflux went undiagnosed many years because she would only experience it with antibiotics.
By the age of 8, around 3rd grade, the stomach aches worsened and her pediatrician said, “It’s psychosomatic.” Knowing my daughter, watching her day in and day out, I was positive the doctor was incorrect in her sloppy assessment. By 9, I began taking her to our G.P. who was much more responsive to Sophia’s needs. Her neck had been growing oddly several years yet, when I would inquire, multiple doctors blew it off as “that’s just how she’s growing. Nothing to worry about.” Lo and behold, by the age of 10, our G.P. said, “Don’t freak out, Alexys, but Sophia has a goiter.” I rejoiced!! I knew something was remiss and she was the first person to acknowledge it. As one would expect, the ultrasound revealed Hoshimoto’s thyroiditis.
That sent us on a crazy ride for which we are still sojourning. We went to several specialists locally, but we found better care out of town at MUSC (Medical University of South Carolina), a 2-3 hour drive depending on traffic. It so happens that they discovered additional autoimmune issues, hormonal issues, as well as stomach problems.
I have refrained from speaking publically because there are certain aspects one simply doesn’t want to share with the world. Of course, I do share some within the confines of my various books, but that isn’t a public forum like social media. Not everyone will read my books, but anyone anywhere can run across my blog. Notwithstanding, I knew it was time to speak so as to help those whom I am able with daily living with a sick child. It is definitely no picnic. Along with the physical sickness, a parent has to eventually deal with the mental, emotional and spiritual toll it takes on someone who should, by all accounts, be running, jumping and playing with their friends without a care in the world. They should be fretting over silly things such as completing homework, who likes who at school, discovering interest in the opposite sex, attending school and church and their respective functions; what clothes to wear to this or that social event.
But, to our chagrin, they concern themselves with getting in their daily meds and whether or not they’ll be able to feel well enough to get out of bed on any given day. As the parent, it’s so frustrating watching teen groups at church prepare to minister overseas or in another state and not one person in that group knows my kid’s name. The sick are most definitely the forgotten. As a parent, it is heartbreaking. Not only is your child sick, but you are blatantly aware of all they’re missing. The common joys of life elude them.
In the following months, I will be addressing many issues which waylay, not only the children, but the parents and how I deal with them on a spiritual, physical, mental and emotional level. My directive is not to have a support group, per se, but rather a group of people with common interests and goals so as to encourage and enlighten one another. Granted, my child is not dying of cancer or anything of the sort as she comes in and out of wellness; although, as of late, there’s more illness than wellness. I don’t pretend to have all the answers, but we can certainly rally together with the intention of being comforted as well as grow in faith, strength and encouragement.
As a minister, I am an avid believer of hope in the Lord Jesus Christ as well as the power of supernatural healing; I have both witnessed it and experienced it for myself. In fact, Sophia, like my previous 7 pregnancies, was dead in my womb until, one day, two men of God were sent our way. They prayed powerfully in way I was yet to learn. In that prayer, God later revealed that, in fact, Sophia was dead but He sent these men to speak life into Sophia’s otherwise dead little body. That being said, I also know there are times where we don’t see what we think we ought to given the power of Christ within us. It’s in those times when an explanation fails us that we need to come together seeking the Word and will of the Father who is faithful.
As for our household, we have covered every known area spiritually and physically. We have laid on hands with elders, anointed with oil, bound away evil spirits, released Holy Spirit upon her and our home, broken generational curses and applied the blood of Jesus, repented, praised and so on. We’ve changed our diet, gone to specialists and taken the proper steps. In all this, we wait upon the Lord, trust in His sovereignty, and take things one day at a time. We place our trust in the Living Hope of Jesus.
Psalm 27:11-14: Teach me Your way, O Lord, and lead me in a level path because of my foes. Do not deliver me over to the desire of my adversaries, for false witnesses have risen against me, and such as breathe out violence. 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.