“I Can Never Die”

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Who Will Take Care Of My Child After I’m Gone?  

Parents of “normal” children don’t have to worry about this.  It’s a given that children grow up to become independent, and go off to raise children of their own.  Not so for my family.  As a perennial, functionally five-year old, our autistic son will remain dependent on us for his daily care, for the rest of his life.  For the rest of our lives.  Whichever ends first.

I try not to think about my death.  Not that I fear death.  The Bible assures me that I am eternally saved through faith in the Son of God, who loved me and gave Himself for me (Gal. 2:20)  No, my greatest fear is this:  Who else on earth could understand, protect, sacrifice, support or love this complicated and high-maintenance bundle, like his parents?  It’s a universal fear for every special needs parent I know.  Our children simply can’t afford to have us die.

Growing up in the church, I heard this maxim from Sunday school and beyond.   “Jesus was tempted in every way we’ve been tempted.  He’s struggled with everything common thing known to man. God understands everything we go through.”  Oh, really?  I never really challenged this, until I had a child with autism.  What does an eternal, omniscient and omnipotent God know about raising a disabled child?  His own Son was perfect.   The gritty realities of life, post-diagnosis, have challenged many simple, childhood beliefs about a good and loving God.  Either a good God doesn’t exist, or He does exist:  He’s just not good nor understanding.  For how can an all-powerful, good God possibly understand or permit this?

Trusting Unschooled and Ordinary People

From the moment Jesus was conceived, He had been prophesied,

“This child is destined to cause the falling and rising of many in Israel, and to be a sign that will be spoken against, so that the thoughts of many hearts will be revealed. And a sword will pierce your own soul too.” (Luke 2:34)

He came to earth knowing His ultimate destination was the Cross.  In the final years of His ministry, I wonder if He was acutely aware of Calvary drawing near, when He would have to leave His mother with a crushed heart and pierced soul.  I wonder if perhaps He kept busy ministering to the disciples, teaching and feeding the crowds, performing miracles and challenging the bureaucracy of local religious leaders, to keep from obsessing over it.

Near the cross of Jesus stood his mother, his mother’s sister, Mary the wife of Clopas, and Mary Magdalene. 26 When Jesus saw his mother there, and the disciple whom he loved standing nearby, he said to his mother, “Dear woman, here is your son,” 27 and to the disciple, “Here is your mother.” From that time on, this disciple took her into his home.28 Later, knowing that all was now completed, and so that the Scripture would be fulfilled, Jesus said, “I am thirsty.”29 A jar of wine vinegar was there, so they soaked a sponge in it, put the sponge on a stalk of the hyssop plant, and lifted it to Jesus’ lips. 30 When he had received the drink, Jesus said, “It is finished.”With that, he bowed his head and gave up his spirit.   (John 19: 25- 30)

Widows and orphans were most vulnerable in ancient times, much like they, the disabled and elderly are the most vulnerable of our times.  As Mary’s first-born child, Jesus would have known He would be responsible for her care.  Moments away from death, as The Redemption Plan for all mankind was being finalized, Jesus’ last thoughts were with His most precious person on earth.  The Son of God had lived a perfect life, fulfilled every prophesy, and submitted to the Father’s will.  Yet here He was, using His last breath to make sure His mom would be taken care of.  Perhaps only then, “knowing that all was now completed…he bowed his head and gave up his spirit.”

While He did not trust men, because He knew what was in a man (John 2:24-25), He who had the power to summon legions of angels and call upon supernatural provisions, still gave his mother over into the home of a mere mortal, someone “whom He loved, standing nearby.”

 

Jesus Left His “Baby” Behind, Too

Days later, this is the same God who would assign the delicate and complex ministry of reconciliation, to unschooled and ordinary men.  The omnipotent God of the universe entrusted the nurturing of His newborn, fledgling Church to a to gaggle of human disciples.  The very ones who totally ditched Him and ran, just a few days earlier.

Specifically, He intentionally handed the keys to the Kingdom to a fumble-prone Simon Peter, called him the rock on whom He would build His Church, and vowed that the gates of Hades would not overcome it (Matt. 16:18).  Then He ascended into heaven, reassuring them that He would be with them always, to the ends of the earth.

Personally, I would have vetted much more stringently, and chosen from a more qualified pool of highly experienced applicants.  But God in His sovereignty, that’s the way He chose to do it.

Come to think of it:  Eleven years ago, this same God dispatched a disabled baby to an inexperienced and completely under-qualified 30-year-old young woman, who used to carelessly toss around the word, “retarded.”  Me.

So, okay.  He knows something about leaving His vulnerable beloved behind, and into questionable human hands.

Surrendering Control

In far, far humbler ways, I, too, am inundated with the daily tasks and responsibilities of feeding, serving, protecting and advocating.  I can avoid having to think about this gnawing, underlying worry.  But it’s always just under the surface.I’m chronically aware that I have a limited window to be serve and advocate for my son. While I am young, healthy and active, I have the false luxury of avoiding a preoccupation with death.  But every once in a while, I’ll run into a horrifying article in the news, have a candid conversation with a fellow special needs parent, or a random, trivial incident will trigger a fresh wave of fear — a panic reflex I habitually suppress, in order to function.

Inevitably, my body will fail.  I will start to feel the creaking and groanings of my soul being summoned heavenward.  And one day, I will have to surrender my beloved into the hands of someone else, likely someone blissfully unschooled in special needs.  I can only pray that I will have someone nearby whom I love, someone I can confidently name and trust to care for my son as their own, even if they are untrained in autism. God will work through them and supply all their needs in Christ Jesus, just as He had for me when I was his primary caregiver.

In the meantime, I do what I can by way of vitamins, life insurance, conservatorship, and keeping our wills current.   But ultimately, I have no idea –nor control– what will happen to him after I’m gone.  Only God knows the future.  He Who was, and is, and is to come, owns the future.

This God over the future has compassion for my fears of today.  Knowing He understands, somehow makes a difference.  Knowing that my Heavenly Father grieved as I grieve, and surrendered as I must surrender, comforts me greatly.  It enables a release and freedom from being obsessed by things over which I have no control.  Knowing this kind of compassionate God helps me, quite literally, to rest in peace, in this age and in the age to come.

I don’t know many things for certain, who will take care of my son; how he will live, feed or dress himself, nor the quality or duration of his life.  I will not be there to fend off lurking wolves and parasites, who prey on those who cannot stand up for themselves.  But what I do know, are God’s Promises:

For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future (Jeremiah 29:11)

The Lord knows the plans He has for me, and for my child.  Plans to prosper him and not to harm him, plans to give him a hope and a future — including the parts that no longer include me.

And the gates of Hades will not overcome it.

 

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18 Responses to “I Can Never Die”

  1. Anonymous March 22, 2013 at 10:27 am #

    I cannot pretend to really understand how you feel. But as fiercely protective mother and grandmother who loves to think she can fix everything and protect them from everything, I do think I can relate on some level and it breaks my heart. My biggest struggle has always been, trusting God with the future of the people I love the most. I am always talking about what I will do after I retire. I have a friend at work who is a parent of two special needs children and he always says, “I will never be able to retire because my kids will need me forever”. This makes me sad and humbles me. Love you Diane.

    • Diane March 23, 2013 at 9:44 pm #

      Thank you so much for sharing your heart with me. I’m sure this is at the core of every mother & grandmother: surrendering control :-/ I SO understand where your co-worker is coming from. It’s a fear for ALL SN parents of children who will be dependent on us for their/our lifetimes. So thankful for the Promises and assurances of a trustworthy and timeless God! Love you, too 🙂

  2. Joanne Choi March 28, 2013 at 2:59 pm #

    tears….thank you.

    • Diane March 28, 2013 at 4:45 pm #

      grateful….thank YOU!

  3. profoundability April 16, 2013 at 9:31 pm #

    This is truly the greatest burden on every SN parent. I really appreciate your honesty with your real feelings here, and also how you brought it back around to how Christ really DOES get it. Yes, He was tempted in all points as we were, even in this, though he had no earthly offspring. His fledgling church was his child. Perfect, poignant, powerful. Thank you for weaving honesty with His truth. A beautiful tapestry.

    • Diane April 18, 2013 at 4:18 pm #

      Thank you for YOUR encouragement! So thankful that He truly does “get it.” My Mommy-Messiah complex gets silenced when I remember only One Person in all of HIS-story carried a truly unique and unprecedented burden 🙂 Blessings to you…
      ~ Diane

  4. matchaoishi (@matchaoishi) February 8, 2014 at 9:54 pm #

    Thanks for sharing, surfacing and discussing this suppressed fear of all special need parents. It’s encouraging already to just hear the same concern and fear exists. It is even double encouraging to hear the words of encouragement you shared about God is in control. He has planned out the entire salvation plan for all of us since the creation time. Surely, He has planned the support system for our children even if we can’t be with them. God bless you and entire family.

    • Diane April 3, 2015 at 11:04 am #

      Amen to all you have shared, matchaoishi. You’ve beautifully summarized what took me many,many words to work out 🙂 God bless you and your family, esp. as we press into this Easter weekend. Praise God for being One who understands, anticipates and meets our every need: past, present and future. “Because He LIVES, we can face tomorrow….” Hallelujah!

  5. Ann Holmes April 3, 2015 at 4:41 am #

    O, Diane, what a precious post straight from your heart that comes with such vulnerable honest grounded in Biblical truth! Love to you and yours and also have a truly blessed Easter! Can you PM your mail address – sorry I’m such a slacker? –Ann

    • Diane April 3, 2015 at 9:18 am #

      Oh, Ann. Thank you so much for your words of encouragement and affirmation. Esp. coming from a “seasoned saint” 🙂 and ministry veteran, it really means a lot to me. And you are NOT a slacker! I can tell you are a hardworking one with many, many plates you are spinning. Some hearts are just bigger than the day is long, amen? God bless you. Have a blessed Easter. And yes, I’ll PM you my address…

  6. Jenni April 3, 2015 at 8:34 am #

    These are the exact thoughts I had when we welcomed our youngest into our family. What would her life look like when my husband and I were gone? Would there be anyone out there to love, protect and advocate for her? I also boiled it down to wanting to stay in control when ultimately I wasn’t. Thank you for this beautiful reminder.

    • Diane April 3, 2015 at 9:21 am #

      Dear Jenni, yes, yes, yes, I SO know how you feel! Isn’t it comforting to know that Jesus knows our unspoken fears, even better? Especially today, as I reflect on Good Friday, I’m reminded how He, too, walked through having to surrender His most Precious, and had surrender His will to live, too. Only then could God’s Greater Purposes unfold. We are beneficiaries of that surrender. And our children will be, too. Wishing you and your family a blessed Easter!

  7. Alex Van Riesen April 3, 2015 at 10:28 am #

    Thanks Diane. I appreciated the connection between Jesus surrendering his life unto death, and ultimately the hands of his father, and special needs parents surrendering the care of our special needs child. Nothing brings such deep and intense feelings to the surface like the idea that there will not be someone to care for our child after we are gone. I surrender that fear again (and will need to do so tomorrow) to Jesus today. Good Friday is a good day to do that and to remember that he surrendered his life for ours. Thank you.

    • Diane April 3, 2015 at 11:09 am #

      Amen, my brother. “Because He lives, I can face tomorrow. Because He lives, all fear is gone. Because I know (…ooooh 🙂 He holds the future. And life is worth the living, just because HE LIVES.” Me, too. Having to surrender control today, tomorrow and until The Glorious Day it’s no longer an issue 🙂 God bless you, your remarkable family and your congregation, esp. this weekend, as you share this Good News that gives such freedom!

  8. James Monzello April 3, 2015 at 2:40 pm #

    Beautiful essay, Diane.

    • Diane April 3, 2015 at 6:09 pm #

      Thank you James! I hope all is well with the family. Please give my love to A and little J. Forever grateful to your dear wife for the blessing she was to us!!

  9. Anonymous April 14, 2015 at 7:37 pm #

    I must be honest, I am a mother of 6 and foster mother of many many more. No I can not say I understand what a mother of a special needs child goes through, I do have two family members that have different needs one has downs syndrome and the other has Asperger’sn, they are both amazing. I just wanna say I applaud all mothers that cope with the needs of a child that suffers from any special need, for their extra patience and love. I will say though, I as a mother, worry every day, if I were to pass, what would my babies feel, cope with. Would they be ok, would others step in and be there for them mentally and physically as much I do. They are my absolute reason for breathing, and I know others love and care for them, but not like their mama does. So I do feel all parents worry about this daily, its just a different kinda of worry.

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    […]  If God exists, if He is good, how could He allow this to happen?  And how dare He claim to understand everything I go through?  God never raised a disabled child.  His own Son was […]

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