Friday, March 16, 2012

A New Normal


I have gotten so used to life with my son's disability that I almost forget about it until something like a hospital stay changes from distant to imminent. Then, to my surprise, I am newly aware of Timothy's "special needs."

It's no wonder I have little time for contemplation. Not only am I a wife and mother with all that entails; I am also a caretaker, advocate, auditor, financial planner, string puller, and paper pusher. I meet constantly with "representatives" performing "evaluations" of my son. I navigate touch-tone menus, press "1" for English, and get put on hold. If I'm lucky, I get to ask the case manager at Agency X, live, to please do their job. I fill out paperwork. I get doctor's signatures, type emails, send faxes, compose letters, make copies, write lists, gather printouts, keep files, itemize inventories, place orders, pull records, and request refills. I organize, prioritize, maximize and sanitize. I always multi-task. I keep all the plates spinning. I have more hats than a royal wedding.

Not only that, I have even been known to get a government worker to get something done right away. ON A FRIDAY.

And I do it all with a bluetooth in my ear, a suction catheter in my hand, and a smile on my face. (Ha, ha.)

But in the midst of it, I somehow forget that it is all because my son has "special needs." Should I even use that term? Lately, as he grows in his language development, I consider more carefully what I should say around him. Yes, his needs are different, but so are the needs of every child. Does dwelling on the label "disabled" give me the right to cultivate bitterness about the added burden of a job I did not sign up for? Does it entitle me to sympathy from others? Am I excused if I want to wallow in self-pity?

A friend of mine recently commented that she did not want to have any children after age 35 because of the "risks." Risks of what? Is having a "special needs" child a blessing or a curse? For some, such as the family who recently won a "wrongful birth" lawsuit for their Down Syndrome child who failed to be prenatally diagnosed, a disabled child is apparently unwanted and unwelcome. But from the perspective of faith, all is under the sovereign hand of God.

I often think that God gave Timothy to me because I have the time, energy, and ability to care for him. When I became a Christian, I set aside my own agenda in place of God's bigger, better plan. John 6:38 says, "For I came down from heaven, not to do Mine own will, but the will of Him that sent Me." Caring for Timothy gives me the chance to deny myself and walk in the steps of Jesus. Yet even so, I fall far short of His example. I give my love to a son who, I hope, one day will thank, appreciate, and understand my sacrifice. But He so loved the world that He gave, continually, commitedly, and self-sacrificially to those who hated him; who returned His good with evil, hatred, slander, spitting, beating, and, ultimately, agonizing death. No, I will not complain. Hebrews 12:4 says, "You have not yet resisted to the point of shedding blood in your striving against sin." May my example be Jesus, and may I delight to do His will.

1 comment:

  1. You are such a blessing to me personally. Whenever I read your blog I am tearful because you touch me. God is working in your life and your family's lives in a way you may never see or be aware of. You bless me, challenge me and put my struggles to shame. Continue on in the faith that God is walking beside you every minute of everyday. He lifts you up when you are low and his arms of love surround you constantly. Thank you Suzanne for sharing and for loving your family. I pray for you all.

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