Why I Didn’t Cry

Why I Didn’t Cry

imageToday I saw excited little learners make their way through the school doors. For some it was their first First Day, for others, it was a day to see some old friends in a new classroom.

I noticed refreshed teachers, full of smiles, welcoming the kiddos and ready to hear tales of summer fun!

I couldn’t help but notice the brave faces of some of the Mommas. They were trying so hard not to cry in front of the ones they cherish.

You want them to grow and learn and explore and love life, but a part of you wants to snuggle up on the couch and watch another Shaun the Sheep or go to the park or story time at the library.

I can’t believe 2 of mine started 1st grade and my littlest started kindergarten today. It’s unreal.

I remember as if it were yesterday the exact moment I first saw them, held them, kissed them, and promised to love them forever!

I cried lots of tears last year and always thought I would be even worse when this day came. But I wasn’t.

I thought about this a lot today and realized why, for me, there were no tears today.

Over the last 4 years since Charlie was first diagnosed with a rare cancer, I have learned so much from her.

That first week in the hospital while they were frantically trying to find a diagnosis, they poked and prodded her daily.
I wanted to yell at someone and sit on the floor and cry, but she would give the nurses a smile, even say thank you and then want to play.

I took my cues from her.

The first day of chemo, I was so worried about her port placement surgery and thinking she would be scared. She went right to the nurse and waved to me over her shoulder as they took her to surgery. She was telling me it was ok. I walked to the waiting room, grabbed a coffee and settled in.

I took my cues from her.

There were many many nights after she had drifted off to sleep, I would cry. Not just a few tears, but the ones where your chest hurts. I saw this beautiful girl so full of love and like and kindness and I wanted to take all the pain and struggles from her.
Then she would wake with a big smile, a “good morning Mommy”, and be ready to face the day! I hugged her close and peace settled in.

I took my cues from her.

Over the next 3 years, through countless tests, scans, port access, fevers, hospitalizations, 3 chemos, steroids, distressed liver, blot clot, relapse and shots for a year, this girl shined!

She beat the odds.

She laughed when most would cry.

She beat up cancer. (Her words!) 🙂

Today when Charlie boldly walked into school on her first day of kindergarten, she was beaming from ear to ear.

I insisted on at least walking her to her class.

So…for a day I had long anticipated to be filled with tears and separation anxiety, there could only be a big smile on my face as she waved goodbye over her shoulder and I left her class room.

I walked down the hall thinking…..we made it baby girl. I pulled out my keys, put my sunglasses on and not a tear was shed.

Once again….I took my cues from her.

A Child’s Faith

Every now and then I see glimpses of the strongest faith, courage and determination ever. It’s usually in the form of a little one who is still learning her ABC’s and is mispronouncing words. Yet in Gods infinite design she has wisdom Solomon craved.

Last week I was miserably sick and after saying bedtime prayers with Charlie I asked her if she wanted to pray for me to get better.
Charlie: No.
Me: No?? Ummm….why?
Charlie: Because you are going to be fine when you wake up!
Me: Really? How do you know that?
Charlie: Because Jesus is healing you right now!

I just stared at her and thought wow….if I could have an ounce of that kind of faith. I think this is why Jesus liked having the little kids all around. They heard. They believed. They adored. They lived.

A few weeks ago, Miss Charlie had her 3 months post-chemo scans. It was a challenging day and the readings of her scans were not clear or definitive. We immediately put them on a disc and sent them off to Texas Children’s Hospital and are now waiting for Dr. McClain’s email or phone call.

Some days I worry. Some days I don’t think about it and just get kids dressed, bathed, fed, and snuggle them close. Some days I cry. And then some days I get a nugget of faith whispered into my ear by a 4 year old and it reminds me that there is nothing to fear.

I choose to hear. I choose to believe. I choose to adore. I choose to live. Really live.

Matthew 11:25
At that time Jesus said, “I praise you, Father, Lord of heaven and earth, because you have hidden these things from the wise and learned, and revealed them to little children.

Joy

The other day as I was unpacking one of our boxes from the move, my fingers felt a small, flat, smooth stone. I smiled as I picked it up, knowing what it was. It has a simple word etched on it. Joy.
Several months ago, during a hospital stay with our then 18 month old Charlie, a chaplain had decided to visit me. It was a quiet day, Charlie was asleep and I had been alone with my thoughts. Those were the worst times for me. As much as I wanted to relax, read a book, take a nap….I could not.
There had been so much change in our lives the previous year or two, and  I was trying to grasp the meaning and purpose of it all. I like things nice and neat and ordered and our lives felt like chaos in every way.
As the chaplain sat down and started asking about Charlie and our story, I found myself verbalizing some of the thoughts I had minutes earlier. I told him about our 18 years of marriage with no children, then a few years back we became foster and adoptive parents, at one point all 3 of our girls were in infant carriers, and we were 12 -24 hours from our parents, we were pastoring a church, I was still trying to lead worship. I shared some of our financial burdens and recent anxieties from the tornadoes that had made their way through our community in Alabama.
As he listened, he pulled out this stone. He said that usually he lets the person he is visiting pick one, but he felt impressed to give me a specific stone. It had the word Joy etched on it.
I was puzzled as I didn’t “feel” joyful, nor did I feel that what I had just unloaded on him was any definition of the word Joy. But I realized that day, that often our greatest enemy is the one in our mind. The enemy wanted to tell me on those dark days that my life was falling apart, I was no longer able to help others, even my own children, because of the stress, disorder, confusion, pain, setbacks, and lifes troubles.
I sat in silence as the chaplain went on to explain. He said, “I never know what or who I am going face or meet when I walk through one of these hospital room doors. Today, I can tell you that I did not expect this. You have quite a story and through it all, as you were telling me, I was suprised at how calm you are. You seem to have such a peace about it all. (I am convinced if I had a blood pressure cuff on at the time he would not have said that!) 🙂
He went on to quote this passage: James 1:2-4 says “Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds,  because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything”.

I realized from that day forward that I was not going to beg God to take this all away and make life perfect. I was going to let Him “finish it’s work”. I want my girls to know that when tough times come their way, it’s only because God loves them enough to allow it.
This morning at church, the pastor spoke about this very topic. Being Marked with Joy. People often use the phrase “I was given a bad deck of cards.” I liked what the pastor said. In God’s eyes, there are no good cards, or bad cards, there are just cards. He uses every one of them for His ulitmate plan.
Last year, we thought we were given some bad cards. But guess what….they were just cards. We wouldn’t trade this past year for anything. We have met some incredible people along the way. I never knew that heroes are sometimes 5 year old kids in the fight of their life coming up to play with my toddler in a busy waiting room. I never knew that a close friend could be someone you have never met in person. I never knew I could learn lessons for life from my little girl who can not yet even say her ABC’s.
My prayer for you is that if you are in one of those moments in life in which you want it to all just go away, that you will read James 1:2-4. Let the words wrap themselves around your heart. May you consider these times pure Joy.

 

Nothing But Blue Skies

This is from a Caring Bridge update that I did in September after our family had returned from a retreat for families facing pediatric cancer. I happen to be wearing my Blue Skies t-shirt today and was just thinking again what an awesome ministry it is. If you have the opprtunity to do something like this, I encourage you to do so! You will be blessed as a volunteer, and if you are a guest as we were, you will be cared for beyond your belief!

Last night we got home from a 4 day retreat for families facing pediatric cancer. I knew it sounded good when I first read about it, but I had no idea that “good” wouldn’t even begin to describe it! 🙂
As most of you know, we have had a lot of changes in the past few years. We became pastors of a church 5 years ago, I quit my profession of 22 years 3 years ago, and a few months later, we became parents for the first time through foster care. A year ago this month, adoptions were final on our 3 baby girls, and 2 months later began the journey we are now on with Charlie’s LCH. 

Charlie just completed 13 weeks of chemo and we were given the ok to go to maintenance which is chemo every 3 weeks, with a daily chemo pill added. About this same time, we made the decision to resign from our church.  Transitions are usually bittersweet, as is this one. 🙂

Needless to say, we have a lot of major life changes going on! So, when we pulled in to the resort Thursday night, we were hoping for a few days of a change of scenery, maybe meet some new people, and let our girls just have fun. We did not expect to be greeted by a sweet teenager with a smile, whose first words to us were “Are you the McCoy’s? YAY, the McCoy’s are here!” I thought I recognized her, and then realized it was from a video in which she had talked about how much Blue Skies had meant to their family as her 3 year old sister fights cancer.  She was at this retreat as a volunteer. That was my first clue as to the heart behind this ministry.

We were soon introduced to our host family. I didn’t even know we would have a host family! 🙂 Jennifer and her precious daughter Waverly showed us to our beautiful “room”.  It reminded me of a penthouse apartment. There were several people that just appeared from everywhere, helping to unload the van, get us settled, blow up mattresses, give us welcome gifts, hand us a gift card to Piggly Wiggly for breakfast food, offer to go the store for us, etc. I was told that our laundry would be done each day, and they would clean up for us. Ok, so I was getting a little choked up by now.  Ummm…wow.

The next morning, we made our way down to the beach for morning devotions that had already started. I saw another familiar face, a smile, and a wave, as Dixie motioned for us to sit on her blanket.  Dixie is mom to precious Bayleigh, who is still in treatment. Dixie was at this retreat to serve. Wow again, and more tears. There were already people getting up to go run after the girls so we could sit and just breath. Listen. Breath. Relax. Bask in the peacefulness of the sound of the ocean, God’s word, and His presence.

After that, a bunch of other kind souls took our girls for the rest of the morning, to play in the pool and playground while we went to our first Kindred Journeys. What a perfect name for this group. While the 11 other families there all have different stories from each other, we all have a common bond of facing childhood cancer or life threatening illness. We heard the painful stories of diagnosis, the shock, the loneliness, the treatments, the chemo, the isolation, the relapse, the weariness, the faith, the loss of faith, the fight, the resilience, and most of all the perspective of what is really important in life.

We shared stories, our hearts, and tears, and were led by Pastor Brad and his wife Amanda who also had been in the seat that we all sat in that morning. By the time our session was over, and it was time to head to lunch, I had already begun to relax. Jennifer had told me that while we went to lunch , she would bring our girls up to the room and put them down for a nap. Ok, now I am thinking….. how I can get her to come home with us???!!

After a wonderful seafood lunch waterfront, we made our way back to walk into a clean condo, humming from the dryer, and our babies all asleep on the bed. We were told on the way back that our host family is known as “The Baby Whisperers”. Indeed!! 🙂

We ended the day with steak dinners by the pool, games, and chocolate shakes, and thoughtful little gifts and notes left in our room for the girls, by our host family. Sigh….. 🙂

The next 2 days were just as amazing. We felt like we were and instant family with the other guests and volunteers.

We learned that it’s ok to cry in front of 20 other adults. It’s ok to say what we really want to say but have been storing away in our heart…some for months, some for years. It’s ok to let our kids run wild in the rain.

We learned that “God has your back, even when you don’t feel Him.” We learned that one of the most beautiful things is when a girl who has lost her sight to a brain tumor stands and dances without abandon to the crowd singing “I’ll Fly Away”. 

We learned to not say goodbye, but instead “see you later”. To all those who made it possible for our family to be on the receiving end of this retreat, we cannot thank you enough. Charlie is doing great, and her, Dakota and Addison had a ball! Our hearts are so full.  You were the hands and feet of Jesus. To our new friends, moms, dads, sisters, brothers, on this journey with us, you are in our thoughts and prayers!

To all of the brave kids that are still in this fight, you are our heroes. We loved laughing with you, hugging you, walking on the beach and getting to know you. You are loved by so many people. Nothin’ but blue skies from now on, sweet ones……:-)

Wonderfully Made

 About 3 weeks ago, my sister-in-law Anna, from Arizona came to stay for a few days. It was so nice to have her around. She went with me to Children’s for Charlie’s chemo treatment. I was reminded of my first few times in Clinic 8. Some days your eyes immediately fill with pain and tears as you wait. Sometimes it just physically hurts your heart. This was one of those days.

Charlie was the brave little princess as usual. She barely flinched when they accessed her port. Her counts were good, so she had her Vinblastine and we were on our way.

I spoke with Dr. Watts about us moving and found out that the process of changing hospitals was MUCH easier than I had thought. I smiled inside as I scolded myself once again. Why do I worry so much about things when 99.9% of the time it proves to be unwarranted? He then said that we were free to take a little extension and come back in 5 weeks instead of 3. This is allowing us to enjoy some much needed rest and rejuvenation with family.

Everett flew to India a few days ago. Yes, India…not Indiana. 🙂 This is his 18th trip and I am so glad he had the opportunity to go. God has a way of working things out just in time. In HIS time. I am spending time with my brother and his family in Northern Virginia while Everett is away. It’s been so nice to be with family and old friends from when we lived here. It just so happened the church we used to attend here was having a women’s conference called Quench this week. The theme was “It’s Time To Dance”. It was basically about dancing in the midst of trials and storms of life. So very fitting for what we have been through as of late.

They asked if I would tell Charlie’s story and then sing. I was so grateful to have the opportunity to share about her journey with LCH. I found myself talking more about what we have dealt with and how we get through, than actually explaining the disease itself. I think for those of you who have a child who fights each day against cancer and life threatening illness, or perhaps it is you that is in the fight of your life, “dealing” with it is the hardest part.

I read posts daily from people who have lost hope, are angry at the disease, and just wish they had the old “normal” back. A song that has been a favorite for years is This Too Shall Pass by Yolanda Adams. During the early days of Charlie’s diagnosis, I listened to it over and over to flood my mind with fact when my emotions wanted to run wild with all of the “what it’s?”.  Today, I sang that song after sharing her journey so far.

Afterwards, several people talked with me about what they were going through, and Charlie’s story had encouraged them…given them hope.

Charlie baby, thank you for being to trusting in the Arms of your Heavenly Father, and showing the world what faith is. You lifted the load of people whom you may never meet. One day you will tell your story. I have a feeling God has incredible things in your future. You planted seeds of hope today in hearts watered with tears. God is amazing…never forget that! As mama was telling your story upstairs, you were placing your tiny hand on a paper that had one of your life scriptures on it. “I will praise you, for I am fearfully and wonderfully made”. Psalm 139:14

To anyone reading this who feels like giving up, or thinks the situation you are in will never end, or there is no solution, please remember. YOU are fearfully and wonderfully made. The same God you made you, will sustain you.

A Good Report!

Today we went in for Charlie’s 5th week of Chemo. I have to say that little Charlie girl is SO smart and is getting used to all of the poking, proding, stretching, cold tables, blood pressure cuffs, “noodles” coming out of her chest, and the list goes on. The nurses each week comment that they cannot believe she doesnt make a sound when they access her port. She is a brave, brave girl.

Dr. Watts had ordered a chest x-ray today, just to see how she is doing. I was dreading this because it took 3 people to hold her down for it last time. She actually layed on the x-ray table and immediately put her hands over her head! The only other time she puts her hands over her head is to say “Hooray” or “Hallelujah”! 🙂 About 1 minute later, we were done!

Dr. Watts met with us later and said that instead of going to the maintenance protocol in 2 weeks, we would most likely be repeating the initial phase of 6 weekly chemo treatments again, just because of her lung involvement, and other organs. He then said 4 beautiful words in regards to her chest x-ray today…..”It cleared up some”! That was music to my ears. The lungs are one of the slowest organs to show healing!

God, You amaze me! I thank You for guiding the doctors, the researchers, the nurses, the lab techs. I thank you for placing this passion on their hearts. I thank You for Your Word that declares Charlie’s healing. Thank You for using a sweet 18 month old angel to bring smiles to so many sad faces at the hospital today.

Thinking back to Charlie’s x-ray, I think she knew…. it was her first “Look at me, Momma!” Hooray!! Hallelujah!!

Road Trip in May – 5/19/2011

Last week we got the ok to travel up to Indiana for my niece Brittany’s wedding. It was a great time and Charlie had so much fun playing with aunts, uncles, cousins, Nana and Papa, and friends of Mommy and Daddys!! I have tried to be so cautious about her being exposed to alot of kids at once, as to keep her from catching a cold or virus.

Would you know the second night we were there, her own two sisters were up all night vomiting and with fevers!!!! Charlie slept through it all, never got sick, and when we got home and had her fourth treatment on Monday, all of her counts were good!! Thank you Jesus, for your Hand of protection!

Dr. Watts said he wants Charlie to have a chest x-ray this Monday, “just to see where we are”. I am hoping, praying and believing that “where we are” is the at the beginning of many “Miracle Mondays” to come!

I have been unusually anxious (not directly about Charlie) lately, and I am refusing to allow discouragement take up residence here. I read a womens devotional yesterday, which happened to be on the topic of becoming who God wants you to be. We often get lost in doing for others and pleasing everyone else, we forget to ask God who HE wants us to be. He had a plan in mind when He made each one of us. For me…I always wanted to be a mom. I am thanking God today for the opportunity to be mommy to 3 fabulous little girls!

The scripture that went with yesterdays devotion was…”I will praise You for I am fearfully and wonderfully made.” Psalm 139:14

This is the scripture that I had written in colorful magic marker and stickers and hung on the wall at the end of Charlie’s bed while she was in the hospital. What a great reminder that He has it all in control.

Sweet Charlie, you were WONDERFULLY made!!!!

Thank you to all of you who have prayed, supported, cried with us, sent cards, made phone calls, and given hugs. We love you all!

Flying Pacifiers – 5/9/2011

Flying Pacifiers

It’s been awhile since I updated Charlies journal. As most of you know, our state suffered some severe tornadoes a couple of weeks ago. We were without power for a few days, and internet until a few days ago. I have no complaints. I have the sound of my children playing each day. I have my husband and my friends. My heart hurts for those who lost their homes…and their loved ones. Our prayers are with them.

Charlie had her second chemo treatment last Monday, and she did great! We recieved a bit of bad news at the visit. The results from her biopsy the week before showed that she also has LCH in her bone marrow. We are to continue with the treatments as the protocol recommends, and at the 6 week mark, will repeat all scans and another bone marrow biopsy. At that point, if changes need to be made, we will find out then.

This news had the potential to freak me out a bit, but a heart to heart with my patient husband helped me out. Bottom line. We knew Charlie needed a miracle. She still does. That hasn’t change. There is no need to worry. It does nothing to solve, heal, restore, or uplift. So we pray…and we follow the doctors advice…and we wait for our miracle.

Charlie is doing great with her treatments! She had her third one today. Blood counts are good! The only side affect we notice is she is cranky and strong willed. 🙂 We were told its the Prednisone. Thank you Prednisone, for making my sweeter than icing little girl into pickle juice! It’s not really that bad, but today at clinic, she was throwing pacifiers, sippy cups, and slapped the nurses hand when she was doing vitals. Oh, my dear Charlie….this will get better, I promise!

After her treatment, we went for Chinese food, and her fortune cookie read “Time heals all wounds. Keep your chin up.”

How fitting. For my fellow Alabamians suffering from the recent storms…keep your chin up. Our precious baby girl Charlie….keep your chin up. We love you and you are the bravest fighter I know!

Always Good – 4/26/2011

Always Good

Yesterday was a big big day for Charlie. We got to the hospital around 5:30 am for her port placement, bone marrow biopsy, and first chemo treatment.
She did so well! Usually on these “fasting” mornings, she is a bear, but she was playful and pleasant. She went right to the nurse and just laid her head on her shoulder and snuggled a bit while saying goodbye to me with her eyes that were already getting droopy. Sweet moment!
All went well with both procedures, and Dr. Watts came and met with us to say we would be moving to Clinic 8 after her recovery and they would be talking with us, and then giving her the first dose of chemo.
The nurses were great! I want to especially thank Heidi, who administered the chemo. She was so sweet and patient, and answered so many questions for me. I arrived that morning tense and unsure, and left relaxed, confident, and at peace.

Charlie had very little pain after the procedure. Tylenol has been working great! She has been her normal little sweet self, all last night and this morning. She is unphased by her port, and only when I change her clothes, she points to it and matter-of-factly says “owwieee”.

One of our biggest initial challenges is keeping her away from a lot of people, crowds, etc. She is used to being in the middle of it all. 🙂 She has about 5 other meds she is taking at home, but so far, hasnt fought us too hard.

We are praying she tolerates all of the treatment well as we go along!

There is a song  by Jesus Culture that has been going over and over in my head, and the some of the words are  “You are always good, always good, always good…” That about sums it up. God, You are ALWAYS good! Thankful for the blessings that each day brings.

A huge thank you to our family and friends and our new friends who also are in battle against Histiocytosis. You all have been such a strength to us, and we cherish your thoughts and prayers!

Covered With Feathers

Well, dear friends, I am once again sitting here with my laptop, about to give you an update on sweet Charlie. I don’t want to be typing these words right now, but you are my prayer warriors, you are my friends, you have carved out a place in your heart for Charlie. And so, I write…

As you know, we have had a 2 week breather so to speak in tests, treatments, pokes and prodding. We have been lifting Charlie in prayer continually. We have been praying scripture over her, and teaching our girls to pray, to quote scriptures, and to simply trust. Simply trust.

We are scheduled to have scans repeated on her head and chest on Monday, and possibly start as soon as next week. That is what our logic told us to do. That is what the doctors who have dedicated their lives to saving the lives of little children, have told us to do.  So, with our minds….we scheduled. With our hearts…we simply trust.

So, tonight just after giving Charlie her bath, I was getting her dressed and she was being her silly self. Laughing, giggling, and being squirmy as usual. In the middle of one of her biggest laughs, I saw a lesion on her top right gum. (One of the telltale signs of LCH). At first, I thought it was something in her mouth….then we played the “say ahhhh” game, and I was silently punched in the gut. I am guessing some angels were dispatched immediately as they saw my shoulders droop, and ever so gently they took hold of my elbows and began the task of lifting my arms until the strength had been renewed.

I immediately sent word to Everett, who was not here at the time, and then we were able to talk and lift each other’s faith and spirits. I am so thankful for a husband who loves his family and his God so passionately. No, we don’t have answers. Yes, we are hurting. But, this one thing we are assured of. God will get, and IS getting the glory, even now! We may be on a rickety boat on a stormy ocean wave, but we have a calm, just knowing that the God who created Charlie, has His hands on the oars. Ephesians 3:20 says “Glory be to God! By his mighty power at work within us, he is able to accomplish infinitely more than we would ever dare to ask or hope”. We have dared to ask. We have hoped. And we give Glory to God!

The past couple of weeks have brought me in contact with many wonderful people who are parents, friends, etc…to a child with LCH. It has been such a blessing to talk with these moms, and friends, and draw strength and support from them. I want to share with you what a new friend (as of yesterday) 🙂 had shared with me tonight. It is the passage from Psalm 91. Such a beautiful passage, and one I have heard many, many times, but tonight every word had a new significance. It was as if God was writing this on my heart. A portion of it says this:

“Those who live in the shelter of the Most High
Will find rest in the shadow of the Almighty.
This I declare about the Lord:
He alone is my refuge, my place of safety;
He is my God, and I trust him.
For he will rescue you from every trap
And protect you from deadly disease.
He will cover you with his feathers.
He will shelter you with his wings.
His faithful promises are your armor and protection.”

So, tonight I have the promise of safety. He is not only my (and Charlie’s) armor and protection, He has decided to cover us. Not with stones, wood, heavy wool blankets, or a scratchy tarp, but He has chosen feathers. It’s like He is tucking us in…pulling that fluffy feather comforter of His love right up around our chin, wrapping it under us, and whispering….”I have you covered. Do you see those wings above? They are mine. That is your shelter. You have trusted me. And I delight in that. Sleep well, little one….”.

Please keep us in your prayers. We feel each and every one of them and are so grateful for the outpouring of love and support. Love to you all tonight.

 Psalm 111:3 “Everything He does reveals His glory and majesty…”