Caring for a chronically ill child requires dealing with the school system. I must say that, after six years of Sophia being on homebound, it is still very tricky to handle the school without unleashing a merciless verbal assault on someone; this would come easily to my natural man. It isn’t just the home office but each and every teacher as they are all different people with varying personalities and modes of operation. This year, Sophia’s freshman year, has been the worst dealing with the homebound committee. I have battled against a homebound assigned nurse giving false information leading to the rejection of homebound tutoring as well as false information making things appear one way when they were altogether another. I have had to battle all school year just to attain the proper accommodations for Sophia so as to be able to accomplish her work while in and out of school.
As recently as last week, I had to make a call to both the superintendent as well as a friend on the school board. The homebound board was refusing to grant Sophia homebound hours when she was out three straight weeks. They cited that, because her days were previously excused, they would not accept the newly submitted backdated homebound form so as to get the necessary tutoring to cover those three weeks. When I finally received a call from the head of homebound after she must have received a call from a superior, her response was, “Oh, so all you need are the homebound services? We thought you were requesting her days to be doctor’s excused and they already were.” This was a lie as she knew exactly what I was requesting. Honestly, I cannot for the life of me understand why the school system uses the motto “no child left behind” when they’ve proven time and again they couldn’t care less about my child or her education. There are times over the last 6 years where I have lost my temper in utter frustration listening to them flim-flam their way through the litany of excuses as to why they cannot provide this or that. They love looking good on the surface but, underneath, in my opinion, it’s all about reputation and money.
I say this to say that walking with God and having to confront the school system is challenging at best. As if it isn’t enough having to wrangle with the doctors and their ever changing assessments of what’s going on any given occasion and having to care for my sick child knowing that, in the moment, I can’t do anything to ease her suffering, insult is added to injury having to deal with the school threats of calling truancy if I don’t immediately comply to their system.
I find myself having to regularly and specifically apply God’s Word to my life, my attitude and my overall posture when dealing with the school system at large. I perpetually call myself to accountability so as to not lose my tempter with someone merely delivering a message. I must remind myself they are people too; that the individuals with whom I am dealing are just that – individuals – they are not the system itself. I long to be perfect as Christ is perfect, but there are moments when I lose sight of Holy Spirit, if even for a moment, and have to force myself into obedience to Christ. I surrender each instance to God so I do not become what I hate – a fleshly, worldly, loudmouth mom going off on a tangent. As tempting as it is and as easily as that would come to my natural man, I must resist.
These are some of the lessons within the lessons drawing me closer unto the bosom of God. Choosing to resist temptation at all costs is vital. Though I fail from time to time, God is faithful. I remind myself all things DO work together for good for those who love God and I am in love with God.
James 1:13-16: When tempted, no one should say, “God is tempting me.” For God cannot be tempted by evil, nor does He tempt anyone; but each person is tempted when they are dragged away by their own evil desire and enticed. Then, after desire has conceived, it gives birth to sin; and sin, when it is full-grown, gives birth to death. Don’t be deceived, my dear bothers and sisters.
“Why me, Lord?” or rather “Why my child?” The question of “why” has to be the most commonly asked question of anyone throughout the ages. “Surely God who is loving has forgotten us. Doesn’t He love us? Is He punishing us? Is He lacking in power, goodness or greatness? Surely a good God would not allow this. If He were great, we wouldn’t suffer so.” To be clear, God is equally loving, good and great. He is all powerful and able to heal in any capacity needed; in fact, His healing is fully intact and is complete in the spirit-realm. The problem lies not in who God is, but in how we perceive Him and our circumstances.
We read in the first few lines of the 73rd Psalm of Asaph, “Surely God is good to Israel, to those who are pure in heart. But as for me, my feet had almost slipped; I had nearly lost my foothold. For I envied the arrogant when I saw the prosperity of the wicked.” He continues citing how the wicked prosper and the righteous suffer. Here we witness the candor of a man who was in love with God. He begins with stating the truth about God, that He loves His people, then goes into the confession of his envy of the wicked who prosper. Envy, as shown in numerous verses of God’s Word, is sin. Not only is it sin, but it is mercilessly destructive.
I deeply appreciate Asaph’s confession of his envy of those who flourish yet are wicked. When one has set their cap to serving the Lord yet suffers greatly, it is all too easy to become prideful assuming God should be more mindful of the righteous; this is pride. In our prideful spirit, we believe God has wronged us, forgotten us or altogether forsaken us. This simply is not true. There are a multitude of Scriptures preparing God’s people in how to stand in the evil day, how we have overcome the world yet beset by a myriad of sufferings.
We’re back to the problem: is it God or is it man’s prideful thinking? Without question, it is the latter. When we lay down our fleshly mindset (conscious or unconscious) of “I deserve better because I love the Lord,” already we can deduce we do not love God as much as we think. In fact, we think too highly of ourselves and love ourselves in an unhealthy fashion. It isn’t until we get to know our Sovereign King that we can take hold of a major paradigm shift. The bottom line is, we are all unworthy of God’s grace, yet He extends it regardless. All of humankind deserves hell, yet, in His supreme compassion, He allows us to partake in His worth, His Kingdom, His grace and kindness.
When our children suffer, it is far worse than suffering in our own bodies. Nevertheless, God is sovereign; He is just in all His ways. I believe 100% in supernatural healing, binding away spirits and releasing Holy Spirit in their place, anointing with oil, laying on hands from elders, repenting of known sin and going to sin no more, and breaking generational or other curses. When, however, one who walks with the Lord has done all this through faith and they don’t immediately experience a shift in the situation, we must stand in faith and trust that the Lord is all He proclaimed. His promises remain steadfast and sure.
II Corinthians 1:3-4 states, “Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.” Instead of asking, “Why”, we need to begin to humble ourselves and turn the “why” into praise. Let us come to the Father on behalf of our children so as to praise God in faith that He is who He says He is as well as stand in the faith we proclaim. Additionally, stop thinking only of your situation and begin to ask, “Lord, in all this suffering, how may I aid and comfort another in theirs.”
Asaph closed his psalm with the words, “When my heart was embittered and I was pierced within, then I was senseless and ignorant; I was like a beast before You. Nevertheless I am continually with You; You have taken hold of my right hand. With Your counsel You will guide me, and afterward receive me to glory. Whom have I in Heaven but You? And besides You, I desire nothing on Earth. My flesh and my heart may fail, but God is the strength of my heart and my portion forever. For, behold, those who are far from You will perish; You have destroyed all those who are unfaithful to You. But as for me, the nearness of God is my good; I have made the Lord God my refuge, that I may tell of all Your works.”
As parents, let us release the bitterness and embrace the God we say we love. Though our feet nearly slipped, allow God to rescue so that our feet are once again planted on solid ground. It isn’t enough to entrust our lives to the Lord, but we must equally, or more so, trust Him with our children.
I Peter 5:10: And the God of all grace, who called you to His eternal glory in Christ, after you have suffered a little while, will Himself restore you and make you strong, firm, and steadfast.
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.”
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?
When one has a chronically ill child, it can be chillingly isolating, especially for the child. The whole “out of sight, out of mind” couldn’t possibly be more real. Depending on their ailment, the child can’t go to school, church, activities, parties, or other social gatherings. They are very closed off and, after years of that, it begins to take a serious toll on them mentally and emotionally.
Sophia would give just about anything to go to school, to church, to sporting events, or wherever her friends are so as to interact with her peers and feel a sense of normalcy. The few friends she has retained are living life and she begins to feel the magnitude of isolation. It becomes depressing and our home begins to feel to her like a POW camp. Everyone goes about their business and the world keeps spinning, yet there sits my child all alone.
As a parent, to say it is gut-wrenching to watch my child be so lonely would be a gross understatement. It is disheartening because there’s little one can do. It’s exceedingly challenging to comprehend how so many people rushing around can completely forget an entire person, but it happens every day. People I run into at church, for instance, say “Oh, I’m praying for Sophia” or “I’m thinking of her” or some variation thereof, but she can’t feel those thoughts or, frankly, the prayers. I appreciate them, but sick kids need more than that. Periodically, they need cards, calls, texts, visits and prayer in person so as to be reminded they’re not as forgotten as they may feel. They need to know they’re not “less than” other kids their age because others are well and they are ill.
If I’m being honest, we parents need to see others remember our children, not people saying in passing, “I’m thinking of him or her.” As I’ve said many times, people can’t feel thoughts. We’re not in a movie where people mysteriously feel someone thinking about them. “Good vibes” isn’t a real thing. People need to experience thoughts and prayers, concern and love; action is required. When I see, as I’ve mentioned in previous blogs, other healthy kids at school, church, or out and about, it’s glaringly apparent what my kid is missing.
Sometimes, it’s important to speak up so as to let people know what your child is experiencing because people can’t read our minds. We most certainly do not need to express everything we feel every moment we feel it because feelings can be so against truth, but there are times we must make ourselves heard. That way, no one can cite, “I didn’t know what they were going through.” We must stop being afraid to speak up when warranted. Remind people of your sick child and that they could use a visit. I understand we’re all busy and everyone has their own issues of life, so it isn’t out of the question to say to someone, “Hey, my kid could use _____”. Only then are they aware of an appropriate action. The Church, specifically, should willingly show their love through various people reaching out to that child. That is the role of the body of Christ.
In this particular blog, I’m not giving advice as much as sharing my heart. I’m sure there are others in our situation who are feeling closed off from the thriving. Be encouraged. Share with someone how you or your kids are feeling. Don’t be afraid to speak up. There are too many people in this world for anyone to feel all alone, sick or well. Peace and blessings to each of you and may the healing of Christ overtake you spirit, soul and body.
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.
One of the issues with having a chronically ill child is dealing with discouragement, theirs and ours. As parents, it is our responsibility and privilege to continuously encourage our children no matter how exhausted we are. We are not allowed to speak negatively as that helps no one. Certainly, we all have bad days, but we must focus on who God is, how God is, His promises and on “whatsoever is good” as instructed in Philippians 4:8. For me personally, I definitely have discouraging days; those where Sophia has had a few really good days and then, bam, she can’t get out of bed because of some infection that hit her from nowhere. With confidence, I know that, if you are a parent or guardian of a chronically ill child, you get discouraged. It is our reasonable responsibility to God, ourselves and our child to locate in our lives whatsoever is good, true, honorable, etc. Believe me, it’s present, we must simply try with a bit more effort than others to find it. We must get our eyes off our circumstances and place them where they belong – on Christ and His Kingdom and what God has to say about the matter.
If your child is still breathing, it’s a good day. If they can get out of bed, it’s a good day. If they can actually attend school, spend some time with a friend or someone with whom they can share some laughter, it’s a good day. We must each find our place in Christ where we are so confident He is sovereign, kind, loving and attending to our needs according to His riches in glory that we do not allow ourselves to be swallowed by the spirit of depression, anxiety, or some form of disillusionment. As for me, I can honestly say, it takes a lot, a whole lot, to discourage me. This is only because I keep my focus on Christ, His Kingdom promises, as well as recalling all I’ve ever experienced with Him in times past. I remind myself of things He has spoken to me, directly or indirectly. I recite the Word in my inner man so that all the negativity of the current day does not overwhelm me. I deal with today today because tomorrow has enough troubles of its own. I choose this because it is healthy (spiritually and physically), I choose it because it is good, I choose it because it is right, and I choose it because I must be an example of faith to my kid as well as onlookers.
Over the years, I have had a few people play the blame, guilt, shame and condemnation game, to which I refuse to participate. It’s from those uber-spiritual folks who are certain they could do better than I and that her illness is all my fault; they love to stir discouragement. I have heard, “You must not be praying right”, “you must have hidden sin”, “you must be speaking the wrong things”, “you must be entertaining demons”, “you must be a hypocrite since you’re a minster and believe in supernatural healing yet your kid is still sick” and much more of the like. These are those who believe that, if healing doesn’t come when or how they believe it should, it must be the parents’ fault.
Those words, if I allowed, would discourage and crush me to my core. But, because I am grounded firmly in my identity in Christ knowing I’ve done everything spiritually of which I am biblically aware, those words wash over me like water off a duck’s back. Believe me, I have questioned myself every which way – all these things crossed my mind at some point.
Parents, if you know who you are in Christ, if you know who Christ is in you, if you walk in accordance to His Word, and have surrendered yourself and your situation to Him, know that God will take everything Satan means against you for evil and turn it, one day, for your good, the good of your child, and the good of the Kingdom of God. Do not allow discouragement to overtake you because it benefits no one. Encourage yourself in God’s Word and His promises. In this, you won’t have to force positivity when around your child; it’ll flow freely from a genuine heart of love, faith and hope.
Philippians 4:8: Finally, brethren (parents), whatever is true, whatever is honorable, whatever is right, whatever is pure, whatever is lovely, whatever is of good repute, if there is any excellence and if anything worthy of praise, dwell on these things.