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?
“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).”
Chapter Five: Abdicating the Throne of Flesh, part I
“but I discipline my body and make it my slave, so that, after I have preached to others, I myself will not be disqualified (I Corinthians 9:27, NAS).”
“Therefore I urge you, brethren, by the mercies of God, to present your bodies a living and holy sacrifice, acceptable to God, which is your spiritual service of worship (Romans 12:1, NAS).”
Definition of Abdicate: renounces one’s throne. Synonyms: disown, renounce, give up, refuse, relinquish, repudiate, abandon, turn one’s back on, wash one’s hands of, forgo, waive, abjure
I love this word “abdicate” because it is so in line with the meaning of “deny self”, “die to self”, “take up your cross”, “surrender”, “living sacrifice” and other expressions of ridding our person of the nature of the flesh. We, mankind, have made our flesh our throne from which we rule and no one can tell us what to do – not even God.
We worship self by following our heart when we should deny the heart. Jeremiah 17:9 reads, “The heart is deceitful above all things, and desperately wicked: who can know it?” No possible hope can be found in the heart of a man separate from the heart of Jehovah. This is why it is a matter of life and death that we disown the throne we have made of ourselves and abdicate to the King of kings. Do you remember the definition of “surrender” in chapter three? It is to “cease resistance to an enemy or opponent and submit to their authority.” The throne of self is the enemy of the Throne of God and must submit.
Since Christ is our only hope, it makes sense that one would have to concede unto the One who can save those who are lost. We must deny ourselves if we are to expect anything of the Lord, especially strength. It’s all too easy for the flesh to appear strong when there are no real struggles afoot but, when things begin to go awry, we can’t help but acknowledge the glaring weakness of the flesh.
Paul, a mighty warrior for the Kingdom gospel, said he “made his body a slave”. This is because he understood full well how askew the flesh of man is, no matter the man, no matter how closely that man walks with the Lord. In fact, it was because of his close relationship with the Lord that he understood the intensely sinful nature of mankind. He went on to say that he made his body a slave so that “I myself will not be disqualified”. Many a person of God has fallen away due to the fleshly nature they refused to abandon, all the while preaching salvation to others.
We read in Mark 8 that, for those who want to save their life, they will lose it and vice versa. We cannot rightly attempt to hold to this life and somehow force it into morality so as to please God. The flesh must be acknowledged and rendered as dead since it already is. This is taking up our cross – it is death to self. The flesh will never be transformed into the image of God; therefore, it cannot be allowed to thrive even when we believe it to be “under control.”
If Jesus had to give up His life due to the nature of the flesh, this tells us the flesh is defiled beyond restoration. Christ did not give up His life that we may have ours; He gave up His life that we may have His. We are to take on His life into our mortal shell. We try too hard as “Christians” to will our flesh into submission or, in other words, we try to keep it controlled, much like a pet Rattlesnake. It is impossible to control the uncontrollable long-term. It must be extinguished; it must be 100% subjected to the holiness of Almighty God. This is the only possible way to become self-controlled – subjected and surrendered to Christ’s life.
You will read this in all my writings because it is all throughout God’s Word. The Bible is clear. The flesh being forced into morality is not the solution. It is weak and we must stop pretending it is strong enough to allow us to overcome our circumstances. To get to the root, flesh is not only weak but altogether defiled and dead in the sight of God; it is irreversibly cursed. It can never produce enough strength or power to aid you in a torrential downpour of life.
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.
One of many issues with having a chronically ill child is dealing with quilt, shame and condemnation as though it’s all your fault. I am not one prone to any of the aforementioned because I have learned through the Word of God that none of those, or any of their counterparts, are of the Kingdom of God. They are, in fact, of the kingdom of darkness and I refuse participation. Nevertheless, there are moments during this arduous journey with Sophia when I have encountered people who ridiculed me. They cited numerous reasons why Sophia being ill was all my fault, be it for physical or spiritual reasons.
From a physical aspect, I’ve heard I didn’t feed her enough fruits and vegetables; I let her eat too much junk and/or processed foods. On the spiritual front (as previously mentioned in other blogs), I must be entertaining demons, have hidden sin, or I’m simply not walking according to faith. I am the first to call myself to accountability and to check myself with God as well as how I feed my family. I have definitely been faulty in the food arena as it is, by far, my worst weakness. I barely eat, Sophia barely eats and, because of this, we generally choose poorly when we do. We’re working to resolve these issues. As for the spiritual, I stand before Almighty God daily with the heart, “Show me every wicked way in me that I may confess, repent and be made whole.”
Because of this, I do not allow other people to project onto me their condemnation. In this, I do not take on the weight of guilt or shame. In like fashion, I do not allow guilt, shame or condemnation to come from my own psyche. We humans tend to beat ourselves to a pulp blaming ourselves for other people’s ailments, namely our offspring. I’ve had moments, definitely, where I felt guilty in that, because I’ve had autoimmune issues since I was 20, it’s my fault she’s like this. Then there’s the, “If I had done something differently or better when I was pregnant, she would be healthier.”
We must understand that, regardless of what we could have done better or differently in the past, it is the past – there’s no going back. Condemning ourselves from what others say or what we have internalized as our fault is a waste of time and energy that would be better spent finding the best resolution of the situation. Kids are sick for many reasons. For us personally, it so happens we had several molds in our home and it was literally killing Sophia and, for that matter, me. I was severely ill several years having dominant lupus symptoms. The mold techs rid 1/3 of our home from mold Fall 2015. Unfortunately, my office (now Sophia’s bedroom) still contained heavy mold to which she is severely allergic. When I moved out of that room in 2015, I gradually recovered. She moved in and became seriously worse. Just last month, we had mold removed once more. Already we’re seeing improvement in Sophia’s overall health.
Moral of the story: Get to the root of the problem and take appropriate action. If it’s spiritual, deal with it before God and get your spiritual life in order. Yeshua is not a God of guilt, shame or condemnation, but of renewal, transformation, forgiveness and regeneration. If it’s physical, make the proper renovations to your home, your lifestyle, diet, or wherever necessary. Whatever you do, do not allow guilt, shame or condemnation to play a part of your process. It is of Satan. It will destroy you faster than the actual health problems.
Take a breath. Seek God. Stay encouraged. Have faith in God’s plan and purpose. Love your child. Take each day one at a time. Be proactive. Speak healing not the illness. Pray for God to open your eyes to that which you do not see, your ears to hear that which has been silent, and open your mind to understand the inconceivable. He will respond. He is faithful.
Changing How You Feel:
In a nutshell, you cannot feel differently until you see differently. How you see God will determine how you view situations and people. How you evaluate circumstances and the people surrounding you will directly determine how you feel, good or bad. How you feel will determine how you act and react. This is how a new perspective will change your course.
For example, after my first divorce, I hated my ex-husband and I was angry with everyone around me who didn’t warn me against marrying him. Later, once I really began to see God for who He is and how I didn’t listen when He sent a million warnings, my perception of the situation changed. When my vantage point was altered, I was compelled to hold myself to accountability; my finger-pointing turned inward. My feelings of hatred and bitterness, sorrow and hopelessness transitioned into something else altogether. Love, compassion, forgiveness, and so on, replaced the negative.
We all have feelings and, nine times out of ten, they’re a lie and extremely unhealthy! My 13 year old daughter said to me the other day, “I’ve always felt this way” as if that justified her skewed and unpleasant behavior. I explained to her that her emotions about the situation were not of love, but of selfishness. I didn’t condemn her; rather, I shared with her another way of looking at her negative situation so as to help her grow out of her natural feelings and into a heavenly mindset. I had to lend her a broader view so that she would have the tools to see differently which led her to feel differently which led to responding better.
Too often, people spend countless days, weeks and years tirelessly attempting with futility to change the way they feel citing, “I know I shouldn’t feel this way, I just do.” I don’t know about you, but the harder I’d try to change my feelings, the more solidified I would become in them! Far too long I did not understand that, until I could perceive a matter with different eyes, my feelings would remain unaltered.
One who identifies with the King of kings cannot continue in hatred or anything of the natural, old Adamic nature. Hatred (and things of the like) rules when one cannot properly see Christ, His love, His compassion, mercy and grace. It’s easy to be embittered against an oppressor until you begin to look beyond the surface and see into their life; to recognize what caused them to be a certain way. More importantly, when we begin to identify with the power of the cross of Christ and the Kingdom He came preaching and teaching, it is impossible to remain in the feelings of standard human emotion.
When All My Strength Has Failed
Chapter 3, part II
Alexys V. Wolf