Although I am certain this line is not original to me, I use it often. Being a mother or father is a thankless job. Sleepless nights, endless messes, runny noses, and countless other demands that require more energy than an adult can possibly muster in a 24 hour period. We bring our children into the world, loving them to pieces, teaching them life's basics, growing them in character, instilling in them values, and introducing them to their Maker. Our concern for the well-being and health of our offspring never seems to wane. In the roller-coaster-ride of their upbringing, parenthood is a tough, important role.
Now add to that parental role a serious diagnosis, and you have taken the position of mother or father to an entirely different level. It is almost taboo to state so, but the hard work seems to increase while the level of appreciation decreases when a child has a chronic illness or disability.
I often joke, "You're not a REAL parent until you have been puked on, pooped on, or peed on." Special needs gives new meaning to that parental glamour. It may mean doing an IV push on your toddler every-other-day, or it may include suctioning out your child's trach so they can breathe properly. It does mean learning a whole new language in order to properly care for the child you fiercely love. It may mean many, many more sleepless nights than the typical, because your child is dysregulated from some sort of executive function defect, or having to test blood sugars in the middle of the night, or any other host of needs that occur while the majority of the world replenishes. It may include the physical fatigue of lifting your child in and out of a bed and a wheelchair, pushing, and hauling, and hoisting, and navigating just to get around like average people. It definitely includes the mental fatigue of processing medical information, and diagnostic options, and possible treatments, and insurance coverage, and planning for a future with more than average uncertainties.
The real rub to this is that parents with exceptional children are grossly under-appreciated. First off, our broken, jaded, dysfunctional world seems to erroneously deduce that parents like us have done something to deserve the challenges our children endure. I will never forget the sister-in-law who demeaningly stated to me when our son was only 7 months old, "Well, you knew hemophilia might be a risk, but you just HAD to have kids anyway." It's this kind of you-did-it-to-yourself or "karma" type thinking that flattens us when we're already weary. If people don't think you did something dangerous in pregnancy to cause your child's difficulties, they assume you are a bad parent because of either inappropriate behaviors or "babying" your child.
In addition, compassion fatigue sets in far too quickly for others around us. When our child is first diagnosed or a crisis initially occurs, there may be some sympathy or compassion. People may show up with a casserole if you're lucky or even pay you a visit to offer a hug. Yet, in short order, that morphs into a mentality of "Too bad for you. Glad it's not me. Get over it." People stop asking how you are, how your kids are. Help dries up, and you're just expected to cope.
At this point a parent has 2 choices, bitterness or humility. Thankfully, most move forward in humility. When humility is the path, others barely notice the heavy daily load woven into families' lives. The world around us doesn't see that without the college credentials we parents have become diagnosticians, triage nurses, physical therapists, pharmacists, occupational and speech therapists, legislative advocates, special education negotiators, insurance specialists, as well as adaptive home designers and modifiers, to name just a few areas of expertise. Despite those perfected skills, learned through the School of Hard Knocks, people don't see how medical professionals and educators demean you and work against you. Others don't see the premature aging and deterioration going on in your body from all of the stress. They don't realize the PTSD you experience every time you see the school's phone number incoming on your phone or when your child has another major meltdown in public. They never notice all of the vacations you are unable to take for lack of funds or because of the difficulties involved with your challenged child. They don't get the grief and depression that can eat at you when you watch other people's children thriving while yours fights just to make it through every day.
How do parents ever do this without Jesus?
I praise GOD that He is El Roi -- "God Who Sees Me" -- when a parent like me feels under-appreciated. He is the Self-Revealing God who lovingly makes Himself known to His creation. He works in and through me, not only giving me value simply because He ascribes it to me. He also shows each of my children that they are infinitely valuable to Him through the outpouring of my care. By His Holy Spirit He fortifies me, graciously pouring wisdom, love, and perseverance into me. He makes me feel loved when the world looks at me with disdain. And He guarantees precious promises that the world can NEVER offer or keep.
In our Bible passage from Isaiah today, God is speaking through this prophet to tell Israel what will happen to them because of their repeated, unrepentant disobedience. They will be disciplined, but they will be restored. There will be suffering, but there will eventually be joy in spite of it.
Isn't that our story as well? There is no one in this world who is sinless. Yet, Matthew Henry states in his commentary on this passage, "The grace of meekness will contribute very much to the increase of our holy joy."
I guess that is one thing in which we parents raising remarkable kids can take heart. Having been humbled by our circumstances, God offers us an increased measure of holy joy. Being under-appreciated in this life never feels fun, but the joy of the Lord IS our strength and promises to fill our hearts to overflowing. Thank God!
PRAY: Father, too often I feel like I toil in vain, unnoticed, unimportant, and unloved. Lifter of my head, remind me to keep my eyes fixed on You. I know that is the only way I can keep the proper perspective and recall that You are fully aware of my bent back, weary soul, and humbled heart.
~ Barb Dittrich
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