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.
Chapter 6: Becoming Base and Foolish, part II
We’ve seen famous athletes who are suddenly taken out of the game because of an injury and they’re completely lost having no idea how to be anything other than an athlete. We’ve witnessed the filthy rich turned to rags for one reason or another. The actual foolish, at the core, are those who think themselves wise. The authentically wise are those who place no value on anything of themselves. If you are in a situation where you have come to the end of yourself, recognize God is at hand. He earnestly desires you to humble yourself before Him so He may bless you doubly. Don’t think yourself so great that, in your weakness, you believe God has wronged you. Do not boast in your greatness assuming God owes you something.
Don’t despise becoming the base things of the Earth. It is there you will find the righteous right hand of God and all His mercy and grace. With everything my family has endured with mine and Sophia’s physical maladies, along with diminished wages from Michael’s job over the years, I am continually humbled to witness and experience first-hand the awesomeness of such an amazing God. It isn’t that Yeshua immediately manifested His healing, which I believe will happen any day, the restoration of finances, which I believe will happen any day, or that everything suddenly became perfect. No, it is a matter of watching God produce the impossible! Countless amazing God-only things have happened along the way. They confirm always that God is God; that He is in love with me, with my family, with my enemies, with the naysayers, and with His magnificent creation that I could never deny His sovereignty.
This is how foolish I am and I praise God for it! I believe. I expect. I wait upon the Lord when people or circumstances would shout loudly, “There is no God!” God avenges those who make themselves base for His name’s sake. those who lose everything and anything so as to gain eternal life.
Lose to Gain:
But whatever things were gain to me, those things I have counted as loss for the sake of Christ. More than that, I count all things to be loss in view of the surpassing value of knowing Christ Jesus my Lord, for whom I have suffered the loss of all things, and count them but rubbish so that I may gain Christ, and may be found in Him, not having a righteousness of my own derived from the Law, but that which is through faith in Christ, the righteousness which comes from God on the basis of faith, that I may know Him and the power of His resurrection and the fellowship of His sufferings, being conformed to His death; in order that I may attain to the resurrection from the dead. (Philippians 3:7-11, NAS)
Philippians reads, “the surpassing value of knowing Christ Jesus.” Knowing Christ is only attainable through loss – total loss – because it isn’t about more information, it is about intimacy with the Savior. There is nothing more valuable in this universe. One can only know Christ Jesus through death just as it was for Adam. To know, in the deepest sense of the word, is to to immerse completely into something or someone. Comparing it to human relationships, when a person falls deeply in love, one can say they die to themselves or they lose themselves in the other person. They “lose” themselves for another.
The person in love will do anything to get the object of their affection to reciprocate their love. Being in love is often referred to as painful. “Love hurts,” people say. It is painful because those who were once very independent become dependent on the other person. People have been known to commit literal suicide when their love is not returned, and human love pales in comparison to the pure love of Yeshua. We need to be dependent upon Him and independent of self. This is “becoming base”; becoming as nothing so as to gain everything of value.
Counting everything you are and possess as loss is, hands down, the epitomy of becoming as nothing for the sake of Christ.
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.”
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.
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?