Grace

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

 

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.