Grace

Stay With It One More Day

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If you haven’t guessed by now, I can tell you I have an active imagination. One of my college professors referred to it as “rich” in reference to an essay or something we were assigned.

So this is one of my recurring musings. I am driving home from the grocery store. But instead of turning, I drive past my street. I keep driving all the way to the airport. Leaving bags of groceries to their own demise and with only my purse and the clothes I’m wearing, I purchase a ticket for the next flight to Phoenix. I probably also buy a donut or cheeseburger. Maybe both.

Upon arrival in Phoenix, I take cab. “Where to?” the driver says. “Grand Canyon, please.” Now don’t worry. I’m not planning to jump in or anything. That’s not where this is going. It’s just that this giant, massive hole has always fascinated me, and I have yet to see it in person.

That’s it. I get there and stare at it for a while. Then what? I don’t know. I guess I go home and deal with the melted ice cream and chicken cutlets rotting away in our mini-van. I suppose it’s really a very anti-climactic fantasy.

I write from the desk in Nicky’s bedroom because it’s currently the only place I can get a moment’s peace. I left the kitchen table because the piles of laundry, broken kitchen sink, sunburned kids watching cartoons and drugged-out-cone-wearing-freshly-neutered dog laying on the floor staring holes through me was too disarming.

But, eventually, I have to go back downstairs and deal with it all. I also have to deal with Justin’s meds and physical therapy and home-schooling.

Who wouldn’t fantasize about running away? Being a parent is the most sacrificial, mind-numbing, thankless job in history. Yes, of course, there are amazing moments, too. But I don’t sugar coat the drudgery. Add a chronically ill child with special needs? Your mind starts to think the Grand Canyon is calling to you.

It’s not only me. I know you have problems. You sometimes write to me about them, and I am thrilled there is someone out there who gets it. How does one manage? Well, of course, you know my faith is the main sustaining motivator.

But I also say this to myself. Just stay with it one more day, Katie. And then I’ll say that again tomorrow and the next day and the next.

Just stay with it one more day, my friends. And lean into grace with every ounce of the weight you carry.

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A very special thank you to Joyce and the Kisses for Kyle foundation for this family photo taken recently at one of my favorite places, Ocean City, NJ.  

Untold (Part One)

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img_3267We said goodnight to friends and I began to clean up the kitchen. My mind was troubled. Why wasn’t Justin playing with the other kids? I had taken him to see three different doctors and had two set of x-rays done, yet he still complained of hurting feet. I had put him to bed earlier with a dose of children’s ibuprofen.

A loud, frantic scream broke my thoughts. I froze. And then another. I abandoned dirty dishes and moved quickly to Justin’s side. Jeff was already there.

Justin was sitting up in bed, tears streaming, feet kicking; as if he could kick the pain away from him. I sent Jeff for an ice pack and took Justin in my arms. He was burning. I carried him with me to grab the phone. I dialed the number for our pediatrician, although I had already decided he was going to see a doctor that night.

Midnight. I did not want to wait for a sitter to come so we decided Jeff would stay home. I was all silent prayers and steady hands as I drove to Virtua pediatric emergency room. I denied it, emotionally, just enough to function. But, inside I knew something was very, very wrong.

Another set of x-rays and a blood draw. The IV placement was the worst part. Or maybe carrying him to radiology. I don’t know. It was all kind of me being determined to get answers, ignoring the I hate yous and tiny punches finding their mark on my back.

3 AM. Justin finally dozed off. My phone was dead. I needed water or coffee or something. I asked the nurse to watch him, found a diet coke and left my phone at the front desk charging station. Walking back to his room, I noticed the emergency room was eerily quiet and still. Then the doctor was there.

It’s funny what you can think about even when receiving bad news. She was talking, talking, talking. “Bone de-calcification, white blood cell count.” She has got to be eight months pregnant. “It could be rheumatic disease.” Arthritis? Like old people? “Red blood cell count.” Maybe even nine months. “We are transferring him to CHOP. Waiting to secure a bed. I’m going to call an ambulance right now. Lastly, I want to warn you so that you’re not blindsided.” Is she kidding right now? I am most definitely already blindsided. “I highly suspect that Justin has some type of leukemia. Do you have any questions?”

Me: Okay.

Her: Do you understand everything?

Me: What is bone de-calcification? Why didn’t the other doctors tell me that? I had his feet x-rayed twice.

Her: It means that the bones in his feet look like they have been eaten by moths. I pulled up his previous set of x-rays. It wasn’t there. The damage to his bones happened SINCE Justin’s last set of x-rays.

I tried to figure out the weeks. When did I have him x-rayed last? Right before Christmas. How long had he suffered? I didn’t know. I remembered, with guilt, sending him to school after he cried while putting on his shoes. But I couldn’t think because eaten by moths and leukemia rang so loudly in my ears; and that kind of hot, acidic stuff that definitely is vomit but you can swallow, still stung my throat. And there was no time for guilt.

Me: Okay.

Her: Do you have any other questions?

Me: No.

Her: I’m really sorry. Do you need anything?

Me: I need to use the phone.

This happened January 15, 2016, exactly one year before today.

 I love the Lord, because he hath heard my voice and my supplications. Because he hath inclined his ear unto me, therefore will I call upon him as long as I live. The sorrows of death compassed me, and the pains of hell gat hold upon me: I found trouble and sorrow. Then called I upon the name of the Lord; O Lord, I beseech thee, deliver my soul. Psalm 116:1-4

 

 

Love and Lemonade

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A very special thank you to our friends who stopped by to support Alex’s Lemonade Stand in honor of Justin and other childhood cancer warriors. We dedicate our time and efforts to all the children and families living in this struggle.

Grace be with your every high and low, every needle stick and surgery, every fear and anxiety, every tear and tantrum, every mouth sore and stomach pain, every port access and adhesive removal, every victory and defeat, every “yucky oral meds time” and chemo infusion, every steroid-induced-binge-eating session and time spent vomiting, every physical and occupational therapy session, every rude stare and kind word, every blood draw and transfusion, every gift and sacrifice, every thought and feeling, every radiation treatment and scan, every piece of good news and bad, every shock and strand of hair lost, every sleepless night and day spent surviving, every exam and counseling session, every real and forced smile, every hospital stay and homecoming.

Every joy and every sorrow.

This post is dedicated, with love, to Alex’s family. Alex, you are a hero. Thank you for your legacy of love and lemonade.

Alexandra Scott

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Jan. 18, 1996 – Aug. 1, 2004

 

Love’s Greatest Victory

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cross-danger1Last night, I yelled at Nicky because he kept making careless mistakes with his math homework. Like really yelled at him. Like a lunatic. Over multiplication.

But I wasn’t really mad at Nicky or the fundamentals of fourth-grade math. I was just mad. Angry. Annoyed. Agitated. Because this recent cold, damp weather is not a friend to muscular dystrophy. Because my son has cancer. And because my days are filled with constant mind-draining, mentally exhausting negotiation with a five-year-old to STEP FORWARD “because everything is okay.”

Cancer has been like a tornado in Justin’s life, coming on suddenly and fiercely, leaving a path of destruction in its wake. He’s continuously disappointed over missed activities, physically hurting from chemotherapy and afraid of EVERYTHING. And, yes, there have been big victories and huge blessings. But there are days we just can’t seem to remember them clearly no matter how hard we try.

Yes, I get frustrated and angry and tempted to think that God is not good or loving. But I FIGHT those feelings with Truth. I often go to the Psalms and the promise found in Romans 8:28. “And we know that all things work together for good…”

But today, I am also reflecting on a sermon by Jonathan Edwards I’ve recently read. On Christ’s agonizing prayer to the Father on the night He was betrayed (Matthew 26:36-46), Edwards writes this:

Thus powerful, constant, and violent was the love of Christ; and the special trial of his love above all others in his whole life seems to have been in the time of his agony. For though his sufferings were greater afterwards, when he was on the cross, yet he saw clearly what those sufferings were to be, in the time of his agony; and that seems to have been the first time that ever Christ Jesus had a clear view what these sufferings were; and after this the trial was not so great, because the conflict was over. His human nature had been in a struggle with his love to sinners, but his love had got the victory. The thing, upon a full view of his sufferings, had been resolved on and concluded; and accordingly, when the moment arrived, he actually went through with those sufferings.

My favorite line is, “but his love had got the victory.” Oh praise him! Christ could have chosen to forego the cross, but He went willingly because of His great love for us. Love’s greatest victory was won for me! How can I not know and grasp and believe and rejoice that God is GOOD?!

Well I just put Quiche and organic broccoli in the oven and am able to take a minute to conclude this post. Don’t be impressed. We had hot dogs last night.

Today, I apologized to Nicky and asked for his forgiveness. Then I jumped on him where he was sitting on the couch and gave him hugs and kisses until he laughed and said, “Yes, I forgive you, mom, but you’re crushing my leg!”

If there is one thing I’ve taught my boys, it’s that we are all in need of grace. To be given as much as we have received.

My thirty-eighth birthday is next week. I’m too young for all this grey hair. Grace be with you, my friends.

 

I Won’t Ever Let You Stay Down

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Taking care of Justin is like taking care of a newborn or a toddler. I spent most of the day cleaning him up, supporting him while he walked, carrying and feeding him.

Tonight he got up from the couch to use the bathroom. I couldn’t get there in time to “spot” him as he was walking. He lost his balance and fell to the floor. Of all the painful, scary things we have been through, seeing his weak legs give out affected me the most.

Because it drove home feelings I’ve had nagging at me all week. Cancer is robbing Justin of being a little boy. Justin was active, rambunctious and loved to play sports. He was a fast runner and really good at soccer. Now he has weak, pencil-thin legs that can’t support him when he is tired. He is quiet and despondent. My heart aches desperately when I look into his blue eyes, once bright with mischief and enthusiasm, now darkened with fatigue and sadness.

Seeing him fall also hit a little too close to home. I often struggle with muscle weakness of the legs and mine have “given out” on me on more than one occasion. I hated seeing it happen to my five-year-old child.

So I drench my pillow and pray, “How long, Lord?” And I plead with Him to heal Justin and restore my little boy.

And people say to me, “How can you have faith? Why does God allow this to happen?”

I understand those questions. And I do pour my heart out to God in anger, frustration, fear and sadness. But I never ask why. Because whatever purpose God is working through all of this is too fantastic for me to understand. His ways are not our ways. (“For My thoughts are not your thoughts, Nor are your ways My ways,” says the Lord.“For as the heavens are higher than the earth, So are My ways higher than your ways, And My thoughts than your thoughts. Isaiah 55:8-9)

And because the God of the universe doesn’t owe ME an explanation.

And because I trust God. I trust His reasons. After all, He was willing to allow His own Son to die on a horrid cross for me. When I think of this incomparable measure of grace, I trust the One who is the author of my faith. (“Looking unto Jesus, the author and finisher of our faith, who for the joy that was set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God. Hebrews 12:2)

To put it very simply, I trust Someone who was willing to do THAT.

Although I don’t expect to know why Justin is suffering, I AM promised that God is with me and we are not forsaken. (“The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.” Deuteronomy 31:8)

So I cling to this promise for dear life and continue to hope in my salvation and my God. For God alone my soul waits in silence;
    from him comes my salvation.
He alone is my rock and my salvation,
    my fortress; I shall not be greatly shaken. (Psalm 62:1-2)

After I held him in my arms, I told Justin this, “You know what I do when I fall down? I get back up. Falling down doesn’t make us weak, staying down does. I won’t ever let you stay down.”

Grace be with you, my friends.

 

Real Soaring

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Isaiah 40:28-31

The Lord is the everlasting God,
    the Creator of the ends of the earth.
He does not faint or grow weary;
    his understanding is unsearchable.
 He gives power to the faint,
    and to him who has no might he increases strength.
    Even youths shall faint and be weary,
    and young men shall fall exhausted;
   but they who wait for the Lord shall renew their strength;
    they shall mount up with wings like eagles;
they shall run and not be weary;
    they shall walk and not faint.

I’ve read this passage many times and often found it very encouraging. But as I struggled and pushed myself through Christmas program directing, shopping, baking, wrapping, and entertaining in spite of pain, weakness and extreme fatigue, I read it again. I wasn’t encouraged. In fact, it really bothered me.

This is what I was thinking to myself: I trust God and think I do an okay job of waiting on Him. Yet I’m weary all the time. And I certainly can’t run. Sometimes I can’t even walk.

So I was annoyed at God’s words and having this little tantrum in my mind. Even though I know I am blessed to be able to walk at all. And see. And hear. And use my hands. And breathe. Yet, in my human weakness, I was still having a momentary meltdown.

Until God opened my eyes. You see, He is very good at handling tantrums. He speaks softly and gently to our hearts. If we repent of our pride and selfishness, we are able to hear the truth. And, well, for me, the truth is this: I know from experience with my three boys that children interpret things very literally. And I was reading this like a kindergartner.

God is referring to sustaining the human spirit, which could manifest in physical strength but is definitely not limited to that. When we trust in God and not ourselves, He is promising to give us a spirit of tenacity, endurance and increased faith. We are able to spiritually “soar like eagles” because we believe we are loved unimaginably and that there is purpose to our lives and everything that happens. We may feel extremely physically or emotionally tired and incapable. But deeper trust, rising hope and renewed perseverance will come to us from the Lord if we would only wait a minute instead of charging ahead in our own limited spiritual strength.

If this interpretation seemed so totally obvious to you as you read the above passage, I give you full permission to have a chuckle over my elementary moment. I don’t mind admitting that any wisdom I might possess comes entirely from God.

But, for me, I’m lying here recovering from too much “pushing myself” through the holiday. And it is wonderful to realize that I can still “soar like an eagle” even though I’m having difficulty getting myself a glass of water.

What was your hardship this past Christmas? What is it that made you feel physically or emotionally exhausted? Perhaps you also struggle with chronic pain or disease. Maybe it was your first Christmas after the loss of a loved one. Or maybe you spent the holiday apart from family because of divorce, death, broken relationships or mere distance. I cannot claim to relate to all of these incredibly difficult circumstances. But I know someone who can.

Jesus traveled around spreading the Good News and was often rejected. Because he was God in the flesh, He experienced hunger, thirst, pain and fatigue. Jesus was betrayed by His disciple, Judas, and the people whom He came to save and heal. Jesus was denied and abandoned by His disciples as He went to the cross. As He took on the sin of the entire world and endured the excruciating pain and shame of Roman crucifixion, He experienced physical and emotional stress that we cannot truly comprehend. His own Father looked away as His Son became sin and received the penalty of death.

Jesus did all of that for me. Someone who admits annoyance, albeit temporary, at the words of the God of the universe! Because after all He’s done for me, I still want my own way at times. And because feeling sorry for myself clouded my ability to understand and believe truth. But remembering all He did and all that He is and believing it was for me, well, that is better than walking. Better than running. And that is real soaring.

He also did it for you. Grace be with you, my friends.

 

Indignation and Compassion

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 A man with leprosy came to him and begged him on his knees, “If you are willing, you can make me clean.” Jesus was indignant. He reached out his hand and touched the man. “I am willing,” he said. “Be clean!” Immediately the leprosy left him and he was cleansed. Mark 1:40-41

Sunday, I taught a lesson to my New Life Kids’ class about this passage of scripture. We are studying the miracles of Jesus, and in this particular instance, He heals a man of a debilitating skin disease. The focus of the lesson, according to the curriculum, was that just as He had cleansed this man from a physical disease,  Jesus can, and does, also cleanse us spiritually from our personal offenses, or sins, of pride, greed, and so on. This spiritual cleansing requires a response on our part to God’s grace. Not good works, as they alone cannot save us. This response is faith in the truth that Jesus died for us and there is no other way to God, but through belief in Him. (John 14:6)

I taught all of this with fervor, as I firmly believe this is the truth of the Gospel. The beautiful truth. But some interesting details jumped out at me as I studied and planned my lesson about the healing of the leper.

This story was recorded in three of the four Gospels – Matthew, Mark and Luke. However, I thought the account in Mark really captured the heart of Jesus when confronted by the leper. When we take time to meditate on and study the life of Jesus, we can more deeply understand the character of our Savior.

“Jesus was indignant.”

It is important not to misunderstand the text. I don’t feel that this is conveying that Jesus was simply “annoyed” with yet another person approaching him for healing. Or even aggravated that a contagious leper came near Him.

On the contrary, I think these three words speak volumes about how Jesus feels about physical disease. The text says that Jesus was indignant and I believe that, indeed, He was. Jesus, being God Himself, looked upon a person made in His own image whom He loves, and saw the ugly, disfigured, painful, rotten effects of a terrible disease. Jesus knew that physical disease is a result of a world broken by evil, a world that He entered in order to offer hope. I daresay Jesus was struck with anger and His heart was grieved for what had become of this man, His creation. Jesus wasn’t angry at the leper. I think Jesus was angry at the disease.

It is important to clarify that I am NOT saying the leper had done something bad and that is why he had a disease. Rather, that the effect of sin entering the world is, in part, physical disease. When God created the world, it was GOOD. He did not create illness or even mean for us to die. Death and disease came into the world as a result of evil entering it. (Genesis 1-3, Roman 5:12-21)

So why do I take time to pontificate the true meaning of Jesus’s anger in this story of the leper? Because we have a God who identifies with our anger, frustrations and sorrow. He took on skin and walked the earth, feeling every human emotion. I may feel anger, at times, toward my own painful disease, muscular dystrophy. But I actually take comfort in the fact that God may be angry about it, too! Why? Mainly because I know He also has the power to heal me. But, if He chooses not to, then I MUST conclude that He has a VERY GOOD reason.

Jesus was Compassionate

I love what happens next with Jesus and the leper. Jesus is angry and full of mercy  in the span of a mere moment. I also must point out that Jesus could have healed this man by speaking words or just thinking or any way He wished. But think about what Jesus chose to do! He touched him. A leper, whom NO ONE would dare touch for fear of infection. At this time and in this culture, lepers were forced to live alone outside the community away from their families. Because they were so highly contagious, they had to cover their mouths and call out, “unclean!” if they came near another person. (Leviticus 13:43-46) How lonely and humiliating!

I also have to laugh when I think about what Jesus did. At times, Jesus could be such a “rule-breaker!” No one was supposed to touch a leper. But Jesus did it anyway.

The compassion of Jesus is very evident in His decision to heal this man with a tender touch. A man who had probably not felt the touch of another person in a very long time. Our God is personal and lovingly attentive to detail.

Conclusion

God feels anger toward injustice just as we do. (God is a righteous judge, and a God who feels indignation every day. Psalm 7:11) There will be a day when He will judge the world, and put an end to evil and its painful effects. Although God feels anger towards evil, the Bible says that it’s a different story when it comes to those who are in Christ. (The LORD is merciful and gracious, slow to anger and abounding in steadfast love. Psalm 103:8)

I believe that the way Jesus reacted and responded to the leper demonstrates that Jesus is angry at what hurts us and tenderly attentive to our personal needs. I hope my attempt to dig deeper into the character of Jesus has filled you with a desire for Him.

Grace be with you, my friends.

The Name of Stars

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He determines the number of the stars; he gives to all of them their names. Psalm 147:4

I gazed at the stars while I laid next to my four-year old in his twin bed, waiting for him to fall asleep. (Yes I still “lay down” with my kids at bed time, rubbing their backs or just holding them close. After all, they are only little for a little while.) Okay, they weren’t real stars. It was only Twilight Turtle projecting illuminated five point shapes across the ceiling.

But, still, the clever scene got me thinking about stars and, subsequently, the glory of God as their Creator. According to some online resources, there are an estimated 100 billion stars in our galaxy alone. That is a LOT and that is only ONE galaxy. The number quoted for the estimated number in the Universe is beyond our comprehension.

Are you ready for this? God has named them ALL. You may have read quickly over the verse at the top of this post, but pause and take a minute to really think about it.

Wait there’s more! I came upon another verse about God’s distinctive relationship with His stars.

Lift up your eyes and look to the heavens: Who created all these? He who brings out the starry host one by one and calls forth each of them by name. Because of his great power and mighty strength, not one of them is missing. Isaiah 40:26

Billions of stars. Billions of names. And not ONE is missing.

Our God is personal and relational. He speaks to the stars, calling them out by the very names He has taken time to give them.

Our God is methodical and intentional. He has not only named the stars, but He also brings them out in an orderly fashion, one by one.

Our God doesn’t make mistakes or grow weary. None of His stars will ever go missing because God dropped the ball or became too weak to hold the Universe together. No star will ever “burn out” because God is a little low on power. (Stars shine by burning hydrogen into helium, a process which God created and sustains) He is mighty and powerful beyond our understanding.

We don’t know the particular names God has given to His stars. But, collectively, I think their name is Glory.

I hesitate to draw any conclusive application to us since the stars are so clearly about God and His renown, undoubtedly deserving of our praise and honor. But I can’t help pointing something out. This kind of strength, wisdom and individual attention to detail are the character traits of a God who’s promises can be trusted. And He lovingly promises this:
Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love him. James 1:12
What kind of trial are you facing today? God is bigger, stronger and He knows your name. Grace be with you, my friends.