“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.
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
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.
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