Peace is not the absence of trouble, but the presence of God.
I would have hated living in a cave. When spring comes, I relish basking in warm sunshine, literally feeling vitamins and energy coursing through my body! Falling into a dark, damp, spooky cave with bats and bugs, doesn’t really rank high on my top ten fun to do list.
I still shudder when my husband retells of an “adventure” caving with our boys. Slowly, they began to lose their lights one by one, and suddenly the tunnel narrowed to the point they couldn’t go forward and they couldn’t turn around easily. Three more people came up from behind them, blocking their exit, and instantly it seemed as if there wasn’t enough air to go around. After some initial panic, a few deep breaths, and some acrobatic maneuvering, they all managed to exit the cave. This experience left them quite unenthusiastic about caving again any time soon.
I have found real life is similar to caving. Jeff and I started out marriage with a Pollyanish eagerness, expecting a great adventure. Ten months after we married, God blessed us with with our first child and it felt like a Norman Rockwell portrait of a picture- perfect family. Next we were blessed with another little daughter, and life was so good and sweet that I couldn’t see any other future but bliss and happiness.
BUT Life doesn’t work that way- because we’re “living between two trees.”
Traveling through life with the love of my life, paying the bills, building our future, raising our children, we didn’t even see the “cave” up ahead. In just one instance, we fell headlong into its eerie depths. Jeff and I have stumbled into that cavern at least twice in our married life- once when our second daughter,Kristin, was diagnosed with retinal cancer and the second time when our seventh child, Bethany was diagnosed with downs syndrome.
I have come to think of this “pit”- this “hole” as the Cave of Confusion. You tumble into a dark hole, totally disorientated, eyes trying to adjust so you can at least see where you are and you ask, “How did I get here?” “How do I get out of here?” and “What just happened?” I mean- really! Why doesn’t someone put up warning sign so we could avoid these pit holes of life?
1st Descent into the Cave
We were just skipping along through life living our happily ever after. Laughing, playing and altogether enjoying each other, when we noticed something odd and disturbing in Kristin’s eyes. Once in a while, light would hit her eye just right, there was a white reflection behind the pupil. Then we became aware that in pictures, the flash would illuminate a milky white shadow behind the pupil of her eye. Fearfully, we scheduled an eye appointment. The day we took Kristin to the Ophthalmologist, was the life-shattering. After a lengthy and very silent exam, we heard these quiet words.
“I’m so sorry, your daughter has retinal blastoma. You need to get her to St. Jude’s Children’s Hospital immediately.”
Oh the pain of falling in that pit! The Cave was terrifying; the isolation and fear began consuming me immediately. How could this happen to us? Where is God in all of this? How is this going to end? All these question are normal when we experience something dreadful, and yet I was afraid to voice my fears. At age twenty-five, I didn’t have many spiritual tools to get out of the pit very quickly.
But that began a new experience of walking with the Lord.
I had never fallen into such a dark confusing place in my life! I had committed my life to Jesus when I was seven, but in my twenty-fifth year, He began proving He was committed to me even though I didn’t feel like I had one ounce of strength or faith.
He became my Shepherd, carrying me as we walked down the terrible road of cancer.
St. Jude’s presented us with a terrible choice. After a spinal tap, the news was not good. The cancer had spread through the optic nerve and was everywhere. We had two choices. Go home and enjoy the time we had left or have both eyes surgically removed, start chemotherapy, and begin irradiation of her brain and spinal column. The latter solution might offer us 1-2 years – but it would not offer a cure.
My mother had just passed away after a long and arduous battle with cancer, and she suffered greatly from her treatment of radiation. She told me she wished she had never gone through it because “there were things worse than death.”
After much prayer, tears, counseling, and contemplation- we chose to go home- not to wait for the cancer to take her but pray that the God who had created her eyes in the first place, would bring her healing and a miracle.
That year was the most wonderful yet terrible year of my life.
He became my ever present comfort as the ominous shadow of cancer tried to torment me constantly. He led me out of the Cave, through the forest, down the falls of surrender, and eventually, walked with me through the Valley of the shadow of death. He is the One who kept me sane and gave me strength to face life again, after Kristin went to live with Him.
The two years of her life are still difficult to express. Every night I went to bed with the prayer,
“Oh, Father God, during the night, please heal our little girl. I know you can – just say the word and the cancer has to die. You are the giver of Life. We put her in your Hands.”
Each morning, I opened my eyes with hope, but would begin to cry when I saw that not only was the cancer still residing in Kristin’s eyes, but by all evidence it was growing. I desperately tried bargaining with God- I promised to live a better life, I pleaded with Him to show me “the key” to obtain her healing. I fasted, I cried- hundreds of people were praying for us- for her- some friends flew us down to a huge healing service where there were reported miracles taking place.
I lived in hope and desperation for Kristin’s miracle.
Not able to contemplate where this journey was going to take us, we decided to live each day, each moment, each breath, drinking from the pure joy and beauty of life.
The day of her home going grew closer, our perspective on what was truly important in life was sharpened, and our faith was anchored in the Lord of our Souls. One night, we gathered with some friends, sang and prayed as Kristin made the journey from my arms to His.
He is with us always- even in the depths of the Caves.
Kristin Faith- July 23, 1983 – August 20, 1985
Our story doesn’t end there!
Kristin Faith, moved to live in heaven when she was two years old. How very difficult it was to let go of her little hand- to have my arms become empty after a year of almost constantly holding her….to pack her clothes away along with our dreams.
Somehow, our life gradually resumed and we carried on by grace and Jesus poured His love into the hurt which was too great for my fragile soul to bare.
We continued to grow from and share with others, the spiritual lessons we had learned from finding ourselves in the Cave. And over the next fifteen years, God added to Sarah (our oldest daughter) more siblings- Noah, Micah, Joshua, and Moriah.
Then a very strange thing happened!
When our youngest daughter, Moriah, was five, she would come up, look in my eyes, smile and say, “Mommy, God has a baby sister for me. I see her in your eyes.” I laughed, thinking she was just being silly. But after three or four times of her telling me this, I explained, “Mommy is too old to have any more children sweetheart. You’re my baby girl!”
Three months later, puking in the toilet, I had to acknowledge, maybe God did have another little “surprise” for us.
Unbelievable- Odd- Extraordinary- Strange- Not Random- By Design- But Why?
July 23rd, 2000 – Bethany Anne Barclay was born into our family! Exactly seventeen years after Kristin was born! Nine years to the date after Jeff’s father had passed away. And coming into this world just 30 minutes before my brother’s and his wife, (Doug and Nena) had their little boy- Jason!
I gave up trying to figure out the “why” of that Before we knew Bethany had down syndrome, I thought it was God’s way of telling us He was gifting us with another daughter (not to replace Kristin) but as a crowning rememberance to her- to take a day of sadness and cap it off with joy. After we found out Bethany had trisomy 21- I thought- God- here we go again- I don’t understand you or what you’re doing.
But I clearly heard.
“You understand my great love for you and that’s all you need to know.”
2nd Descent into the Cave
I didn’t dream or pray that I would have a child with a “disability” or “special needs”! Heavens, I didn’t even want to contemplate that it could happen to me. After all, when people see you’re pregnant, they ask, “What are you hoping for, a boy or a girl?” to which I would always answer, “I don’t care as long as they’re healthy.”
We dream of what our children will look like, what they will become. Will they look like their sister, Mom, or Grandpa? Will they have Dad’s eyes or their brother’s dimples? Will they play piano or baseball? Will they love to dance or be artistic? And of course- we assume they’ll be very smart (maybe not a genius) graduate from college and make their “mark” on the world.
After the initial shock of finding myself pregnant with our seventh child- (yes- we do know what causes that 🙂 ) our excitement grew. My pregnancy was uneventful, the baby moved a lot, and we opted not to do any prenatal testing; partly because as Christians we believed that if there was a “problem”, it wouldn’t make any difference to the outcome of our pregnancy. But mostly, we didn’t think it was probable or possible that something could be “wrong.”
Our home birth went without incidence, welcoming a beautiful daughter, who I thought looked like the spitting image of our other children. I didn’t have a clue that our midwife immediately suspected Bethany might have downs syndrome. She kept urging us to go to our pediatrician the next day for her well baby check up. I thought it a little strange she was so uptight and insistent. Euphoria washed over me as I looked upon her- lots of delicate dark hair (like me), sweet little rosebud lips, long slender fingers perfect for playing piano; such a precious little package. Aware that she was our last little blessing, I reveled holding her close. Ah- life was good!
The next day at Bethany’s well baby check up- “LIFE” happened again. One moment, we were in our happily-ever-after story, the next moment we were in another dark, dank cave. Our pediatrician took one look at Bethany, then at me, and asked,
“How old are you, Cindy?”
“How old am I?”
What kind of question is that? Not- “What a beautiful baby girl.” Not “Congratulations!”
Just “How old are you?” asked with a concerned look and a sober voice!
Time slowed, my heart pounded loudly in my ears. I sensed something immense was happening. I said, “uhhh- forty- why?”
She didn’t blink as she looked at us and said with a matter of fact authority- “I’m sure your baby has downs syndrome. We need to do genetic testing immediately to confirm it.”
SAY WHAT?! COME AGAIN?! No. no, no, no, NO!!!!!
This couldn’t be happening. The room literally started spinning. I felt like someone had kicked me in the stomach. I looked at my husband and saw his stunned face. Denial rushed in. I couldn’t believe it. I wouldn’t believe it! The doctor had to be wrong. When these test results came back, everyone would see the results would be normal. All we had to do was wait. Wait? How was I going to wait? This could not be happening to us. This didn’t fit with my picture of our future at all. How did this happen? How did we get here? This was supposed to the the crowning jewel in our family crown. We’d already had one tragedy in our life, wasn’t that enough? What was going to happen to Bethany? What was going to happen to us?
“Oh God, I don’t have the strength to face this. take this cup away…”
That week as we waited for the test results, the emotional roller coaster I rode was like a non-stop ride on The Screaming Eagle! Up and down, spin and drop, I could hardly hang onto life. We had decided not to tell anyone the possibility of Bethany having downs syndrome until we knew for sure one way or the other. No one seemed to think anything was wrong, they were so happy for us but I was crying on the inside. I would gaze at Bethany as she nursed and tell myself, “She’s fine. This is a mistake. She looks just like our other children. There’s nothing wrong.” Then would lay her on our bed and stare at her eyes. They looked “normal.” I would change my position, move forward to her head and look down at her, examining her eyes “backwards and upside down” Suddenly her eyes looked very slanted- very downs syndrome- extremely different.- and then I would know, with a sick feeling in the pit of my stomach that she did indeed, have downs syndrome. I would burst into tears, sobbing as I tried to imagine the “lackluster” future that lay before her- and us. I prayed – or I tried to. Mostly it was groaning inwardly. After processing and praying for a week, the Lord brought me to a place of acceptance when we received the news, that she did have downs syndrome.
“Never the less, not my will but yours…”
Though I had peace, I was still in the Cave. The cave is where we are temporarily blinded by darkness and paralyzed by the chill dampness. Sitting in shock, trying to adjust to your surroundings, realizing your dreams have been ripped away from you, is more than bewildering. I reacted with denial, then grief and pain, then acceptance.
Life has happened. Life has dealt you a blow. Your child and their life and your dreams have been altered.
Altered- yes- but not destroyed.
It’s ok- necessary to grieve. But I promise you- and more importantly God promises you (and God always can be trusted to keep His promises) as you open up your heart to the Lord and lay it all before Him, He will walk with you and comfort you and take your brokenness and work it out for your good if you are one of His own. Joy WILL come in the morning. HE will lead you out of that pit of confusion and isolation and walk you right into His marvelous light!
Then your life-long treasure hunt begins:
THERE IS UNTOLD TREASURE FOUND IN BROKENNESS. THE LORD HIMSELF
WILL WALK WITH YOU AND SHOW YOU HIDDEN TREASURE AND YOU
WILL BE BLESSED BEYOND WHAT YOU COULD ASK OR THINK.
Unlike my first time in the Cave, this cave was less bewildering. Actually wonderful thing happened. Jesus was right there beside me. He had equipped me with spiritual tools over the last seventeen years and I was ready to put my hand in His. He pulled me out of that pit and put my feet on solid ground!
[Tweet “In one epic moment, our future was mapped out in the “Land of Special Needs”, but He was with us!]
Our hand knew to seek His. He continued guiding, comforting, leading and promising surprising treasures as He navigated our journey. We were out of the Cave. Now onward!
Surprising Treasure: Jesus sees our lives from beginning to end. He sees every cave we will ever find ourselves in. He will be with us, guide us, uphold us with His mighty right arm. He will comfort us and lead us in His paths of righteousness. One day, He will wipe away every tear and heal every hurt. Until then, we must fix our eyes on Jesus- He is the Author and Perfector of our faith!
The confusion I felt in my “cave” was similar to how someone might feel if they got on a plane, planning to go to Italy but ended up in Holland. Enjoy this poem by Emily Pearl Kingsley.
You also might enjoy reading another Mother’s story about her daughter, Nella, being born with downs syndrome and what transpired in her heart and mind. Very touching story.
A song that has touched my heart is one our daughter and grandaughter sang after VBS last year!
God Loves- God Sees- God Hears- God Knows- God Cares-
Another song that we need to sing when we’re in the “cave” is “I Will Lift My Eyes” by Bebo Norman
I love reading, home schooling, encouraging others, playing the piano, worshiping, dating my husband, and planning parties and retreats for our clan.
Someday, I really, really want a horse and learn to play the cello and viola.