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.