The Place Where Joy and Grief Meet

April 25, 2013 10 Comments
Our son a few hours after his birth.

Our son a few hours after his birth.

 

When our first grandson was born six months ago, I expected joy, and it was there.
I expected to love him at first sight, and I did.
I expected to cry tears of happiness, and they came.
Every emotion was expected, save one.
I never expected to grieve. Even so, grief found me.

How Could I Have Known?

 

How could I have known grief would punch me in the gut when our son wheeled the isolette holding his son into the lounge area where four grandparents waited eagerly for their first glimpse of their grandchild? How could I have known this first meeting would unleash a host of powerful emotions buried deep inside my mother’s heart for over 30 years? How could I have known this arrival would rip open wounds created when our newborn was diagnosed with EA/TEF and life-flighted 750 miles away for surgery before he was a day old?

The Grief Was Real

 

Expected or not, the grief came. And it was real. Very, very real.

Grief for dozens of photos of a healthy, unscarred newborn we never were able to take.
Grief for those first days of quiet nurturing our newborn never knew.
Grief for the pain our baby bore.
Grief for my milk coming in thanks to a pump instead of a baby nuzzling at my breast.
Grief over not getting to take our baby home after a short stay in the hospital.

Grief after grief.
Wave after wave.
Tears upon tears.
That no one, not even my husband, understood.

The Guilt Was Real, Too

 

Soon guilt came, too.

Guilt because my joy at birth of a healthy grandson wasn’t bigger than my grief.
Guilt because I wasn’t perceptive enough to see the grief coming.
Guilt because I felt like I was outside, looking in.
Guilt because my grief felt a lot like envy.
Guilt because I wasn’t a good enough Christian to overcome the guilt myself.

Grief and Joy Together

 

But then, a verse from Isaac Watt’s hymn, When I Survey the Wondrous Cross, comforted my aching heart.

See from His head, His hands, His feet,
Sorrow and love flow mingled down!
Did e’er such love and sorrow meet,
Or thorns compose so rich a crown?

Reading those words, I knew that God understood my feelings. Because when His Son died on the cross, the Father’s sorrow and love mingled together, like my joy and grief did on the day of our grandson’s birth. I knew God had once stood where I was now standing–at the place where joy and grief meet.

And He met me there.
With grace, not guilt.
With blessing, not blame.
With compassion, not condemnation.
With care, not censor.

The Goodness of Grief

 

He showed me that both my joy and grief were good. He showed me that though the grandma grief will never go away completely, it can increase my joy for the blessings in our grandson’s life. God gave me permission to

rejoice in this baby’s good health,
marvel at the ease with which he sucks and swallows,
appreciate his days secure in his parents’ loving arms,
delight in cuddling his small body close to mine.

When I hold this grandson as I could never hold my own son, I sense God healing my old wounds with His tears.

In that moment, I embrace my joy, my grief,
and the God who dwells with me in them,
and in every place where sorrow and love flow mingled down,
in every life where joy and grief meet.

Jolene Philo

How has God met you in the place where joy and grief meet?

Filed Under: Grief, Jolene Philo, Joy Tagged With: , , ,

The Small Things

March 28, 2013 7 Comments

Small Things

Parenting a child with special needs is a big thing, sometimes an overwhelming thing. Those big things can keep us from seeing and appreciating the small things God uses to draw us close to him. With Easter fast approaching, may God use this devotion and your life as the parent of a child with special needs to fix your eyes upon the glory of the cross.

For who has despised the day of small things?
Zechariah 4:10a

As a young child, I day dreamed about becoming big things kind of girl. I had big plans for a career as either a television star or a princess. Therefore, I focused on the big things like dramatic poses and tiaras rather than little things like learning to tie my shoes. Or telling time. Or making letters like b and d point the right way. Or memorizing math facts. Eventually, my parents and teachers made life miserable until I learned convinced me to pay attention to little things.

But I remained a big things kind of girl at heart for many years. Even after I became a Christian and started reading the Bible. I preferred the big, showy stories–Moses parting the Red Sea, Daniel in the lion’s den, and Jesus feeding the five thousand–to hidden, quiet events like Moses in the bull rushes, Ruth gleaning grain, or the long drudgery of rebuilding the temple in Zechariah’s day.

I remained a sucker for bright lights and big things until two babies entered our home six years apart. When they arrived, life became a river of small things. Tiny fingernails to clip. Itty bitty diapers. Minuscule onesies. Little bodies asleep in my arms. The first tiny hints of toothless smiles.

Slowly, my attitude about material things began to change. The arrivals of these little people made the sacrifices–buying a minivan, sleepless nights, spit up stains ruining expensive clothes, fun money diverted for college savings accounts and day care providers – worthwhile.

My spiritual attitude began changing, too. When I bathed our babies, I imagined Mary bathing her son. Wiping his nose. Drying his tears. Hugging his small body, holding him close, caring for her little boy. I imagined Jesus, God’s Son, beginning his life as the smallest and most inconsequential of small things. A baby born in a barn. Yet that baby grew up to do big things. He lived a perfect life. He healed hurting people. He fed the five thousand. He died on a cross, rose from the dead, and ascended into heaven. All to reconcile small and petty sinners to the eternal, omnipotent God.

My children are grown. I haven’t bathed a baby in years. But as the shadow of the cross grows large in the days before Easter, my thoughts turn to the babe in the manger. The hope of a fallen world contained in a small package. The baby who guides sinners to the foot of the cross.

My God works through small things. He uses the weak things of the world to shame the things which are strong. He uses small things like us–and our children with special needs–to demonstrate our need for the great gift of His Son. At the foot of the cross, kneeling before the manger, I am finally content with small things.

Jolene Philo

How has God used the small things in your life to draw you closer to Him?

photo credit: www.freedigitalphotos.net

Filed Under: Jolene Philo, Joy, Living Life Daily Tagged With: , , , ,

Because of C. Everett Koop

February 28, 2013 8 Comments

C. Everett Koop

My day came to a halt this past Monday morning when the radio host announced the death of Dr. C. Everett Koop at the age of 96. I nodded as the accomplishments of his life in politics were listed: Surgeon General under Ronald Reagan, evangelical Christian and early champion of the pro-life movement, promoter of AIDS education and prevention, crusader of tobacco health warnings, and defender of the rights of children with special needs.

But that story, and every other media story about this remarkable man barely mentioned C. Everett Koop’s many accomplishments before he became Surgeon General:

They didn’t mention his longs tenure as surgeon-in-chief and practicing physician at Children’s Hospital in Philadelphia from from 1946 to 1981.
They didn’t mention he created the first neonatal intensive care (NICU) at CHOP in 1956.
They didn’t mention that he pioneered the field of pediatric surgery by perfecting the administration of safe doses of anesthesia to newborns, babies, and children.
They didn’t mention that the first birth anomaly surgically corrected by Koop was a tracheoesophageal fistula (TEF), now known as esophageal atresia (EA/TEF).
They didn’t mention that the baby would have died from EA/TEF without the risky surgery.
They didn’t mention that because of that original, pioneering work our son, who was born in 1982 with EA/TEF, is alive today.
They didn’t mention the impact C. Everett Koop had on our family.

But C. Everett Koop’s impact on our family was all I could think about on Monday. It was all my husband could think about, too. He mentioned the news the minute he came in the door after work. Together we talked about how this great man’s work changed our lives in ways not noticeable to national media reports, but worthy of mention none-the-less.

Because of C. Everett Koop,
we have a son,
we have a daughter-in-law,
we have a grandchild.

Because of C. Everett Koop,
I know about parenting a child with special needs,
I can encourage other parents when
I write and blog about special needs.

Because of C. Everett Koop,
my husband and I have seen God weave together the lives of believers,
we have seen His sovereign hand stitch together brokenness of our lives, and
we have seen His grace poured out on us in ways we don’t deserve.

Because of C. Everett Koop,
I’ve been weeping tears of wonder and joy since Monday,
I’ve been whispering prayers of gratitude for the gift of our son’s life,
I’ve been praying for the family mourning the loss of the man they loved.

Father God, thank you for the blessing of C. Everett Koop’s life. Thank you for using him in our lives and in the lives of so many other parents of children with special needs. Thank you for this example of how you use believers on this earth to do your redeeming work.

Who has God used to impact your family in amazing ways? Leave a comment!

Jolene Philo

photo source: The Gospel Coallition

Don’t forget to vote for Not Alone in the About.com Readers Choice Awards. You can vote every day until the contest ends March 19th! Finalist

Filed Under: Jolene Philo, Medically Fragile, Thanksgiving Tagged With: , , , , ,

Alphabet Soup Is Hard to Swallow

January 24, 2013 4 Comments

EA/TEF Makes Everything Hard to Swallow

Alphabet soup isn’t hard to swallow. Not for most people anyway. But when a pediatrician says your newborn baby has esophageal atresia and tracheoesophageal fistula (EA/TEF), the diagnosis is a hard one for parents to digest. And for the baby with this condition, soup–or any kind of food–can be deadly.

Alphabet Soup: EA/TEF Style

My husband and I learned of our son’s diagnosis about seven hours after he was born in 1982. From the outside our baby appeared to be perfectly formed. But the doctor explained he had what was then called a tracheoesophageal fistula (now esophageal atresia is added at the front). “We call it TEF for short,” the doctor explained. “The top of his esophagus comes down from his throat and forms a blind pouch. The bottom comes up from his stomach and hooks into his trachea.”

The doctor explained that left untreated, the diagnosis was fatal, but it  could be corrected with immediate surgery. So our ten-hour-old baby was life-flighted to a hospital 730 miles for surgery. He wasn’t even a day old when the pediatric surgeon called to report that the operation was a success, and our baby was doing well.

Alphabet Soup: Murphy’s Law Style

For three years after our son’s birth, he was a Murphy’s Law kind of kid. If any post-op complication could happen, it did. If any bad virus was going around, he got it. If a reason to throw up could be found, he found it. Our lives were a blur of doctor’s appointments, hospital tests, surgeries, sleep deprivation.

The experience was isolating. The sense of isolation haunted me for years, long after the corrective surgeries ended, and our little boy became a healthy child and then a healthy teen. In fact, our son was in his twenties before I finally met another parent and child of the EA/TEF alphabet soup variety. Just two years ago, thanks to the Facebook group Bridging the Gap, I’m part of a community of moms who know what it’s like to raise a child with EA/TEF.

Alphabet Soup: Not Alone Style

Even so, my heart aches for parents of kids who have special needs–not just EA/TEF, but any sort of special needs–parents who feel isolated and alone. I close my eyes and picture them devastated after an unexpected diagnosis, sitting by their child’s hospital bed, waiting at the doctor’s office, rocking their babies in the middle of the night. I pray for them, asking God to surround them with his presence. I write books to assure parents they are not alone. I blog at DifferentDream.com, highlighting resources to help them. And now, thanks to an invitation from Mike Woods, I’m one of many guest bloggers at Not Alone who share the same passion for parents like you.

My efforts are motivated by two things: old memories of isolation and the grace God poured out upon our family during our unexpected, unwanted special needs journey. His grace was abundant, miraculous, and available to our family in 1982 when our journey began. Thanks to God’s abundant grace, we were never alone. Not even when we felt alone. Looking back, we see how day after day, year after year, God put people in our lives to encourage us and uphold us in prayer. I hope the Not Alone community will serve the same function for you and make the alphabet soup of your child’s diagnosis a little easier to swallow, a little less isolating.

Dear Father, use this website to encourage parents of kids with special needs. Use it to put people in their lives to uphold them in prayer. Use those people and the stories at this website hear to assure parents they are not alone. May the truth of your word resonate in our hearts. Amen.

God is striding ahead of you.
He’s right there with you.
He won’t let you down; he won’t leave you.
Don’t be intimidated. Don’t worry.
Deuteronomy 31:8 (The Message)

Jolene Philo

Filed Under: Jolene Philo, Living Life Daily, Posts By Writers Tagged With: , , ,
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