The Father's Love

1 Corinthians 13:2, "If I... have not love, I am nothing."

I spent all afternoon on the rocking chair in Timothy's room. His naptime sleep had been fitful and restless until my weary husband set him on my lap. As I lay his head on my heart, his anxious body slowly began to settle. He smelled like formula and vomit, and his face was caked in mucus and saliva, but for us it was the sweetest seat in the house. I knew that in his sleep, my little boy was free from pain. And he, after days of resistance, had finally found peace, safety, and rest in his mother's arms.

All of the "urgent" matters that just days ago seemed so important have been completely swept aside. Difficulties have an amazing way of separating the temporal from the eternal. Psalm 73:25, "Whom have I in heaven but you? And earth has nothing I desire besides you." The world vies for our affections in every way and promises fulfillment apart from Christ, but in the words of Solomon, all is vanity and chasing after wind. Only in Him will we satisfy our heart's deepest yearning. Psalm 16:11, "In Your presence is fullness of joy; In Your right hand there are pleasures forever."

Last night I listened to the testimony of a man who had won millions in the lottery. His "good fortune" had led to the loss of his wife and children. With tears in his eyes he exclaimed, "I had all this money but I didn't have my family." What he really meant was that if he had not love, he had nothing.

One day Timothy will be too big to sit on my lap. Of course, by then he probably would not find the same kind of comfort there anyway. When that day comes, I pray that he would have the wisdom to exchange my rocking chair for his Heavenly Father's throne, sit on His infinite lap, and find healing, peace, and rest in Him. His arms are much greater than mine and His love endures forever.

A Greater Good

Proverbs 3:5, "Trust in the LORD with all your heart, and do not lean on your own understanding."

Timothy no longer trusts me.

It's no wonder; all week long his Daddy and I have been consenters, agents, and originators of his agony. We have muscled down his thrashing limbs for shots and IVs; constrained his quivering head for bloody exams; driven him to hellish, windowless buildings full of uniformed strangers wielding knives and needles; and abandoned him, terrified, behind closed doors only to wake up alone with fresh wounds. In his tiny 2-year-old mind, he cannot comprehend that any pain could be for a greater good. All he knows is that he has suffered and we have done nothing to stop it.

The hours we have spent comforting, consoling, and staying alongside him do not matter. The damage has been done. His confidence is lost.

Time, consistency, and relief will not build back his faith in us. No; the only way trust can truly be restored is if he chooses it in spite of the pain. He will have to do this in the absence of any logical explanation; for, even if it were given, he would not be able to comprehend it. Instead, he must place his faith in us, not because it makes sense, but because he believes that we love him and want what is best for him. This is a critical test for his little soul; for if he finds the strength to turn his heart toward his earthly Mommy and Daddy, he will take the first step toward eternal trust in a Heavenly Father who also allows pain without explanation for our greater good.

Timothy, I know you cannot understand why you have had to endure this hardship, but you must choose to trust anyway. Somehow, you must believe that the pain you have suffered came from a decision we made out of our deepest love for you. If you decide to believe in our goodness, I promise you will find rest for your soul. Trust in us, so that one day you will understand what it means to trust in God. His love is infinitely more deep, pure, and perfect than ours.

We love you.

A Broken Spirit

Dear Timothy,

For some reason God has chosen to acquaint you with suffering at a very tender age. This past week I witnessed the death of childhood innocence and naivete in your little soul. You now know what most of us do not learn until much, much later: life is difficult. Yes, there are joys, but as long as we are in this flesh, we will also experience pain. You understand this now; your spirit has been broken.

All this week, I held you, kept you warm, listened, prayed, and wept with you. Even for the hours and hours that I stayed by your side and wiped away your blood and tears, I could not wipe away your pain. This is for you to suffer alone, until you are freed from your earthly body and come face to face with the only One who can wash away every tear from your eyes for all eternity. If you choose Him, there will be no more crying, or pain; you will have a new body, perfect, unblemished, free from the curse of sin.

Timothy, as you grow to understand more about Christ, you must choose to let your brokenness drive you toward Him and not away. The temptation will be to blame Him and turn your back, but this will bring you nothing but more pain and bitterness. Instead, give your humble heart to Him, and He will strengthen you to endure, as He has strengthened your Daddy and me time and time again. He is faithful and compassionate, and though He sometimes chooses to allow pain, He stays alongside us in the midst of it as One who has also shed blood and tears. Trust Him even when it defies all understanding, and you will bring honor to Him, peace to your soul, and gain life for eternity.

Timothy, I love you as your mother, and I have and will do all I can to comfort you in your affliction. But now we both know that I, too, am weak and broken, and cannot take it for you or away from you. Instead, follow my example: continually place yourself in God's loving arms and wait patiently for His timing. For it only is a matter of time, Timothy, before your suffering will be ended. I pray that you will persevere.

The Grace of God

Psalm 32:1, "Blessed is he whose transgression is forgiven, whose sin is covered."

On our kitchen table sits a fish bowl. Most days, everything looks clean and clear. But when stirred, all the filth gathered on the bottom, normally covered and hidden between the rocks, swirls to the surface, showing the true nature of the water.

Nothing puts me face to face with the ugliness of my sin than trials. This past week has been a torrent of skirmishes against my selfish nature, most of which have been fought in my own strength and lost. Difficulties have revealed afresh my wicked heart: complaints, anger, doubt, impatience, self-centeredness, bitter speech, arguing, discontent, worry, desire to control. When things are "normal," these manifestations of my utter vileness are easier to hide, such that I deceive even myself into thinking I am "good." But when God shakes up the fragile order I have tried to make of my world, I am forced to cry out like Paul, "Wretched man that I am! Who will save me from this body of death?" Romans 7:24. Then I remember that all my righteous acts are like filthy rags, Isaiah 64:6, and I am driven facedown to the cross of Christ to plead for His absolutely undeserved grace and mercy.

Every day my children and I sing from Romans 12:21, "Do not be overcome by evil, but overcome evil with good." Truly, there is only one thing stronger than the baseness of my sin, and that is the goodness that comes only from God. Each time I set aside my own fleshly desires to tend to my suffering son, I experience this power firsthand. Only love can drive a selfish soul to choose the needs of another over its own. "Dear friends, let us love one another, for love is from God," 1 John 4:7. Only love can defeat sin. My skirmishes were lost, but the battle has already been won by Christ, when he shed His blood for me by choosing to overcome evil with good. Oh how helpless we would be without Him! 1 Corinthians 15:57, "But thanks be to God, who gives us the victory through our Lord Jesus Christ."

Seattle Update #2

Timothy and Daddy had a bit of a rough night. Timothy slept for short intervals and had a good amount of pain. As of now, the bleeding from the trach is slowing down, they are weaning him off of supplemental oxygen and narcotics, and giving Tylenol and Ketoralac (a pain reliever/anti-inflammatory). Our usual Big Eater tried a bit of ice cream a couple of times but still isn't quite ready to swallow (hence a LOT of drooling). His lymphatic malformation is also swollen a good amount from the surgery trauma, but thanks to the g-tube, we have been able to decline more steroids. Timothy is trying to sleep on and off now after a few hours of DVDs. He wakes up pretty unhappy but eventually seems to calm once the drugs kick in.

Dr. Perkins saw him this morning and says he is doing well considering everything and, if we want, we can take him to Ronald McDonald house when we all feel ready. We will see how he does over the course of today and decide if he should stay another night. Our plane leaves tomorrow evening, but we can always change the flight if necessary.

Isaiah saw his little brother last night and was a little scared, I think. It was a good chance for him and me to talk (on a four-year-old level) about Timothy's pain and what he has to go through and why. I was touched when he told me he missed his brother and it wasn't much fun in the playroom without him. Of course, that might have just been because Isaiah didn't have anyone to boss around or listen to his nonstop gabbing! :) Our "deep" conversation ended with Isaiah talking about all the Doc Hudsons in the play room, and if he could have his lollipop. Sometimes it's good to get the perspective of a four-year old to lighten things up in all the seriousness.

Being back in the hospital is a good reminder of all the physical and emotional suffering in the world. I don't know why God permits our little boy to suffer, or the other children and families here (many of which are in much more difficult circumstances than we). I do know that I am ever more convinced that this world must not be our home. We long for something better, and difficulty makes it ever more clear. God created us for Heaven and that is where we belong. Yesterday I read from Psalm 30:5, "Weeping may endure for a night, but joy comes in the morning." Try as we might, we will never escape this world's brokenness. Now we weep, but when this night is ended, for eternity we will worship in perfect union with our Maker. Praise God for the hope He gives.

Seattle Update #1

It's been a whirlwind of adventure in Seattle!

We spent yesterday walking through the University District, finally trekking up to Seattle Children's for Timothy's pre-anesthesia appointment. (The hotel shuttle we had been counting on didn't have a car seat for Timothy, so we took the 2-mile journey by foot - always fun with big hills, two kids, and a loaded stroller!) We didn't have a whole lot planned for the day and the Seattle rains stayed at bay, so it all worked out. While there, the Ronald McDonald House let us know that a room had opened up. So, we spent last night moving all of our things out of the hotel and setting up Timothy's "hospital" again. (Well, okay, Shannon moved most of the stuff.) Props to all those trach parents who travel regularly with their kids! We had always imagined it would be cumbersome, but now know from experience how much work it really is. Still, it is worth it - our new landing pad is MUCH closer and has free home cooked dinners, a play room for the kids, a loaded pantry, laundry, and saves us over $100 per night. Praise God for His provision!

Today we met with Dr. Perkins. After getting to see Timothy in person, he recommended a more conservative approach than originally planned. So, we decided forego the epiglottis portion of his surgery. Instead, he made a couple of "snips" in the area around his epiglottis in hopes of widening up the opening. Other than that, Timothy is now minus his tonsils and adenoids, and that's about it. Dr. Perkins wants to see how he fares over the next 6 months with the extra room today's procedure will add to his airway. There is a slight possibility that as Timothy grows, this intervention may be all that is necessary to get his trach out. Of course, there is also the more likely possibility that he will need more procedures in the airway; only time will tell. Still, we all agreed that doing less now and waiting to see what happens would be a better approach for Timothy. Why put him through more than he might need?

Dr. Perkins also recommended, at some point, surgery on the remaining mass that disfigures the left side of Timothy's face. Since this surgery is more "cosmetic" in nature (rather than functional such as eliminating the need for an artificial airway), we have been inclined to wait. That type of procedure would be more involved (i.e., longer in the OR) and require a longer stay for us (about two weeks) so would not have been an option today anyway.

Today's surgery went well and only started about an hour late (are they ever on time?). It lasted about an hour and a half. Right now Timothy is sleeping, so we will see how things go after he awakes. He had a rough time in the post-anesthesia unit, but I don't know if it was the steroid he was reacting to (he does horrible with steroids!), or pain, or disorientation, or whatever else goes through the mind of a two-year-old waking up from surgery.

For the long haul, Dr. Perkins is optimistic about the treatability of Timothy's lymphatic malformation (both in terms of trach removal and improving his appearance), and seems to have a great team behind him. He is also training up a doctor to come to Kaiser in Los Angeles (hopefully by August) so we could have a local contact for emergencies and in-between visits!

We are so thankful for all the prayers that we know have been lifted up on Timothy's behalf during this time. Our most recent memory verse for Isaiah's Sunday school has been Joshua 1:9, "Be strong and courageous. Do not be frightened, and do not be dismayed, for the LORD your God is with you wherever you go." We know that God has been with us and has been our strenth, and we pray that as Timothy grows he would make God his personal strength as well.

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.