Small is Big: What my son taught me about faith and compassion.

donnaandluke-1.jpgHave you ever learned that someone is facing a difficult time and just wanted to do something, say something, anything to ease the pain or bring a sliver of comfort? Often times, we truly feel helpless. Wanting to form words into a perfect sentence that will help them immediately feel better but the only thing that comes out is abject silence, because your mind is suddenly empty of any and all words. However, I have been shown first hand that there is so much we can do, no matter how small it seems.

When my son, Luke, was diagnosed with Chiari Malformation at age 10, our world flipped upside down. I was consumed and twisted with worry. Worried about his impending brain surgery. Worried about him being scared. Worried about what this meant for our future.

During this time, he was given a knitted prayer shawl made by a precious local ladies fellowship church group. Later, he was also given a prayer bear by a sweet friend of mine. His bear was placed at the right corner head of his bed and was there for almost 2 years. His prayer shawl went with us to the hospital and brought so much comfort to him. He told me he could feel all the prayers that had been prayed over it and love that had gone into it. That comfort and peace he got from a small caring gesture spilled over and brought unspeakable comfort to this mommy’s heart through surgery and the months of recovery that followed. DSC_0987

Nearly a year after his surgery, my co-worker was battling cancer. Luke and I wanted to reach out to her, to give her comfort, but in all honesty I simply CANNOT knit. So we decided to send her a prayer bear. Luke picked out the softest one he could find, just the perfect size to hug. We prayed over it, calling her by name and asking that it bring comfort to her as it did Luke. You can read more about this story published on The Mighty.

After that, we decided we could share love and comfort in a very small way through giving prayer bears. To start off, Luke sold some of his toys for donations. Since that first bear, we have given nearly 30 bears in just over a year to others who are sick or hurting, most go to children with Chiari like Luke and other conditions. It has been such an honor to be entrusted by these parents to pray for their precious children! And Luke always writes a card to each person, a kind message that he feels each one needs to hear.

And the sweet spring beauty that has blossomed from his painful surgical winter has been the most precious to me. Through the bears and prayers, I’ve seen my son’s faith and love flame into a burning compassion for others that has spread into all areas of his life. He is the first to meet and befriend others in new settings. He is kind to everyone and sees everyone as a friend. Whenever we are out, he greets strangers with a smile in passing in the grocery store or running errands and tells them he hopes they are having a great day, holds the door for them or helps them unload their cart.

This has taught me so much about the little opportunities we have each and every day. We can be consumed inwardly with ourselves and our struggles, (something of which I am profoundly guilty) or we can look outside of ourselves for small opportunities to share a moment of love.

Thank you my sweet boy for showing me that small things become big when love is in it! Chiari Card

 

 

 

 

 

 

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Blue Blessings

WP_20160319_21_25_43_ProThere are moments that happen in our lives that I like to refer to as blue blessings. They happen when we are really down and heavyhearted. They seem to come out of the blue and whisper that it’s going to be okay. Surprise us with their simplicity to touch our hearts and encourage us to keep going, and that somehow what we face has purpose and meaning.

It’s been just over a year since my son, Luke, had brain surgery for Chiari malformation. He has come so far and I think it’s given him a love and compassion for others in ways that continues to surprise me. I have had so many tell me how special he is and inspiring to them.

Recently, I learned that a coworker who had battled cancer before and beat it had recently found out it had returned. My heart broke for her. Luke decided to make a large card for her. He spent hours on it, drawing and coloring. He would not let me help in any way.

When he was done, we packaged it up and also sent with it, a prayer bear. I included a note explaining how Luke and I had prayed over it and when she hugged it close, we prayed she would feel our love and prayers of healing and comfort for her.

Lately, I have been discouraged. Luke has had some health issues come up that have burdened my heart with worry. Because he has an incurable brain condition, he will never have just a normal headache or just a typical stomach ache. As his mom, it will always cause me to wonder if it is something more. It will cause me to question if I am doing the right thing, making the right decision for him on how to treat it or what doctor we see.

So the sweet card that we received this past week from my coworker came out of the blue and the words she wrote at the end brought tears to my eyes and to my little guy’s as well. Sometimes we just need to know that there is a reason and purpose for the bad times we face. We need to be reminded that we make a difference, that we matter. Sometimes it comes to us as blue blessings.

Barbara note

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

How Do You Tell Your Son He’s Going to Have Brain Surgery Without Exploding Into a Million Pieces?

Luke meeting his baby cousin last year.

Luke meeting his baby cousin last year.

The house is quiet, really quiet. Every one is sleeping in on this rainy Saturday morning….everyone except me. I don’t feel like I’ve really slept since October. Since my son, Luke (I affectionately call him buddy) was diagnosed with chiari malformation. Words like “incurable”, “brain surgery”, and “severe pain” seem to be bouncing around as soon as my head hits the pillow, along with slight shock and disbelief. Wow! How did we get here?

I keep thinking back to the day when we learned Luke was going to have brain surgery….I got the call while Luke and I were riding home from another appointment. I remember we were singing and laughing when the neurosurgeon’s office called and told me that his test showed a significant flow reduction and we needed to come in and get him scheduled for decompression surgery.
My mind began to reel. My breath caught in my throat. I guess the shock of it all kept me from bursting into tears. I robotically went through the motions of scheduling the appointment but my knuckles were white from gripping the steering wheel so tightly. I turned to my handsome little man next to me. How do you tell your child that they need brain surgery without exploding into a million pieces? I sent a prayer for words of wisdom and began to calmly explain to him what was happening.

“Luke, do you remember how we have prayed and prayed that the surgeon would have God’s wisdom in knowing what is best for you? Well, God has answered our prayers Buddy.” He looked at me briefly as I saw understanding creep into his blue eyes. “He thinks I need surgery, right?” “Yes buddy.” He immediately burst into tears as that understanding was replaced by fear. “Luke, it’s ok to be scared and worried and cry. You might see mommy cry too, but we are also going to thank God for answering our prayers. It may not be the answer we want but I know He is going to take care of you and guide that surgeon’s hand. We are going to get you through it one step at a time and then we are going to praise and thank God and give Him the glory for answering our prayers and being with you through it all.” He slowly nodded as I watched him brush the back of his hand over his eyes trying to fight back the fear and the tears.

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When we got home, instead of turning on the TV, he ran straight for his room. Trailing behind him, I walked in to see him drop to his knees by his bed, clasping his hands in prayer crying. He was saying something over and over but I couldn’t understand so I went closer and sat next to him. “Thank you. Thank you.” He was whispering between gasps and tears. He then reached around to the back of his head with his small hands and began to pray and beg God to give him strength to make it through. It was one of the most precious and heartbreaking moments I have ever known. I let the tears fall quietly down my face as I prayed beside him and let him pour out his heart to his Heavenly Father. Oh!! The strength and faith in that little boy was astounding! I briefly thought of the verse in Matthew 18:4, “So anyone who becomes as humble as this little child is the greatest in the Kingdom of Heaven.

I gently pulled him up and into my arms. Drawing all my strength I said, “Luke, like I said before it’s ok to be scared and cry, but let’s wait until it’s time. You are not having surgery today or next week. We are going to enjoy the holidays and spending time together with family and we are going to pray until then. He has been with us so far and He will continue with us every step of the way. Let’s worry when the time comes.”

Well that time is now fast approaching and in a week my little guy will be going in for surgery. I am having a hard time with it. As a Christian mother I know that God is honestly truly with us. I have never felt His presence more than I have since all of this started; felt a peace in my spirit that I can’t explain. (Philippians 4:7 “Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.”)

But as Luke’s mommy, I am heartsick and terrified. My worries and fear seem to sit on my shoulder and threaten to drown me. I honestly do not know what I would do if I didn’t have the Lord giving me strength. My emotions are all over the place. And my sweet little Luke;  I can’t hug him enough. I can’t kiss his head enough. I can’t thank God enough for giving me the unspeakable honor of being that little guy’s mom. Of having the honor of comforting him, holding him and guiding him through this life.

There is that peace again, stirring up in soul, creeping up into my spirit and touching every corner of my heart. I will allow God to continue to guide me because He is allowing me to guide Luke. And I whisper just like he did between gasps and tears, “Thank you! Thank you!”

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