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.

Courageous Motherhood

Deuteronomy 31:6, "Be strong and courageous... for the LORD your God goes with you; he will never leave you nor forsake you."


Compared to normal flesh, scar tissue is less sensitive, less flexible, and resistant to new growth. Scars forever change the appearance, texture, and physiology of the skin. In the end, scars harden.

The freshness of the pain of Timothy's early days has been replaced with the mundane tedium of everyday life. We have adapted and grown more self-sufficient. Our wounds have begun to scar.

Last night, we saw a film called "Courageous." Though aimed at fathers, the message penetrated the scarred, hardened heart of this mother. Time had diluted the acute pointedness of my pain, leaving an ache much easier to ignore. Yet the father in the story, faced with fresh tragedy, reminded me that through suffering God draws us to Himself.

I do not miss the open wounds of the past, but I do miss the sweetness brought by a fresh awareness of my utter dependence on Christ. I have let life slowly creep in on my relationship with God, my husband, and my beloved children, and I seek the Lord's grace and help to change. Praise God that only He is able to take my hardened heart and transform it into something new: "I will give you a new heart and put a new spirit in you; I will remove from you your heart of stone and give you a heart of flesh," Ezekiel 36:26.

In the spirit of "Courageous," I want to make my own resolution to you, Timothy; because Biblical courage is not always showy, or outwardly rewarding, but it promises eternal rewards. Timothy, I want to promise these things to you:

To better hide God's Word in my heart so that it may always be readily available on my lips for your edification.

To choose face time with you over Facebook time.

To the best of my ability, to set before my eyes, and yours, no unclean thing, whether it be from a screen, a page, a relationship, a situation, or my own countenance.

To set aside my own laziness and commit to consistency in all areas of your training.

To pray with you, work with you, play with you, and enjoy you.

To seek God's best for you and never compromise.

To engage in the spiritual battle for your soul offensively, and not just defensively.

To the best of my ability, for your own good, to never let even the smallest seed of discontentedness, bitterness, anger, fear, hatred, disrespect, rebellion, or irreverence take root in your heart.

To model integrity and cast off hypocrisy in my own life.

To love the Lord with all my heart, soul, mind, and strength, to love and respect your father, and to love you and your brother unconditionally, as an example to you of what God's love is like.

Timothy, my prayer for you is that, Lord willing, someday you would grow to be a courageous husband, father, and man of God. May He give me the grace to be faithful in all that God has called me to in the overwhelming and wondeful responsbility of being your mother.

A Compassionate God

Lamentations 3:32, "Though he brings grief, he will show compassion, so great is his unfailing love."

"Good things come out of hard times," read the sign on my friend's refrigerator. She had handwritten it and obviously tacked it up as a reminder.

Lamentations 3:38 says, "Is it not from the mouth of the Most High that good and evil come?" How can this be? Don't we claim to put our faith in a God who is good? How can a good God allow a child to suffer? In our confusion we create man-made gods and ask them to give us "good" things, not realizing that only the uncreated "I AM" can allow both good and evil, and bring something infinitely more wonderful from their union than their separation.

God does not answer the "why" of evil. As a God of compassion, he instead suffers with us. He became a man and endured. He did not exempt himself; He played by His own rules. And through the most unimaginable evil ever to pass, the agony of the shedding of His own blood, He brought about the most beautiful event the earth has ever witnessed.

What good does God have in store in light of my son? For Timothy, I do not yet know. But for myself, God has, and is, doing an amazing work of sanctification. He has not healed Timothy's physical body, but He is healing me of my selfishness. Every time I am forced to put my own agenda aside to meet his needs, I must remind myself that this is His plan for my life, for that moment. My complaining spirit is cleansed bit by bit as He exhorts me to practice thankfulness instead of bitterness; acceptance instead of denial; devotion instead of selfish ambition. I rejoice over each moment with my son, knowing that he belongs not to me but to Him. Through it all, slowly God takes my stubborn flesh and uses difficulty to bring about the peaceful fruit of righteousness, Hebrews 12:11.

And like Paul, I exclaim, "Oh, the depth of the riches both of the wisdom and knowledge of God! How unsearchable are His judgments and unfathomable His ways!" Romans 11:33

Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us, to Him be glory in the church by Christ Jesus to all generations, forever and ever. Amen. Ephesians 3:20-21

Things Above

Colossians 3:20, Set your mind on things above, not on the things that are on earth...

Why is it that I am caught off guard now that God has asked me to forge the path He has planned for my child? After all, Jesus walked the road to the cross before us. How can I expect my son to follow in the Lord's footsteps if my own feet take a different way? No, I must follow God and, as my son follows me, by God's grace his path will also align with the Almighty.

Timothy, at times it has been easy for me to give you motherly advice, because I am not in your place. When people stare, it is not at me. When questions are asked, it is not about my appearance. When surgeries are scheduled, it is not me who will have to endure the pain.

I have a lot of answers planned for when you start to ask why God made you this way. Yet, do I believe them myself? Do I perceive beauty through God's eyes or the world's? Am I as vain as the next woman or do I truly believe Proverbs 31:30 when it says, "beauty is vain, but a woman who fears the Lord shall be praised?" Am I setting a good example for you? I fear that I am not.

And now, God has called me to trust Him with your future. Why do I doubt? God has done many miracles since your birth: keeping you safe through your delivery; preserving every major nerve and artery through major neck surgery at 6 days old and only 6 pounds; saving your life on Christmas day; providing you with sustenance when you could not eat on your own; moving his saints to many, many prayers lifted up on your behalf; keeping you safe through countless procedures; providing you with a wonderful doctor. Like the Israelites, He brought you, and our family, through the Red Sea on dry land, performed many miracles, and yet when there is no water I doubt and complain. Perhaps I have been trusting in your one earthly doctor to make you well, more than the great Physician and Healer. Remember that God is not nearly so interested in our physical healing as He is in our sanctification. He is calling me to have that heart for you, Timothy. Your physical body lasts only a short lifetime, but your spirit is eternal. 1 Timothy 4:8 says, "For physical training is of some value, but godliness has value for all things, holding promise for both the present life and the life to come." This is the heart of God, and this should be the heart of a godly parent.

Lord, help me to value the things of heaven and not of earth, to see as you see and not as the world sees, and to trust in You with all my heart and lean not on my own understanding. "For the Lord sees not as man sees: man looks on the outward appearance, but the Lord looks on the heart." 1 Samuel 16:7