5 Gifts Cystic Fibrosis Has Given Me

by jphilo | May 14, 2020 | Different Dream, Encouragement, Grief

5 Gifts Cystic Fibrosis Has Given Me

5 gifts cystic fibrosis has given me. Hmm. Can a parent raising a child with this condition (or any other) write those words and mean them? Guest blogger Laura Spiegel says yes, and in her post she traces the path that led her to be grateful for those 5 gifts.

“When can I stop doing my treatments?” my daughter asks suddenly. I am hooking up her nebulizer and am caught off guard by her question.

“When there’s a cure for cystic fibrosis.” I pause. “And I think that’s going to come one of these days.”

“Maybe it will be on my birthday.” She picks up a book. Her birthday is in three months. She will be seven.

“That would be something, wouldn’t it? You’re my brave, strong girl, and I love you with all my heart.”

“You’re my mommy,” she replies. “And you smell.”

As a full-belly laugh builds from deep within, it hits me. This exchange represents my daughter to a T. Her inquisitiveness. Her humor. Her hope in spite of it all.

A life with cystic fibrosis is often filled with uncertainty, frustration, and fear. As a mother, I’ve experienced more lows in the last seven years than in the thirty years prior. I worry. I fret. My heart aches to think of the disappointment, the loss my daughter may one day feel. I would in a heartbeat give my life for her to be free from this disease.

And yet. There is a beauty to our days. An overwhelming sense of what matters and what doesn’t. What’s worth it and what’s not. In addition to its grief, a life with cystic fibrosis has brought my family an unexpected ability to nurture the blessings alongside the battles.

Here are the top 5 gifts cystic fibrosis has given me:

Perspective – I used to sweat the small stuff and strove for perfection in everything. The more I had, the more I wanted. These days, my priority is the health and liveliness of my family. We don’t have to be perfect; we just have to be here. Perspective has helped me relegate the small stuff to the “junk drawer” of my mind. Every now and again, I’ll open it up and play around. But most days, there’s only so much room in my head for this kind of stuff.
Purpose – I believe a well-lived life hinges on where you spend your time and who you spend it with. Four years ago, I leaped off the corporate ladder after realizing that I wasn’t where I was meant to be. Since then, I have soaked up time with both of my kids. I have partnered with children’s hospitals to create meaningful experiences for families. I have blogged and connected with dozens of parents who are walking in similar shoes. We laugh, we cry, and we search for some semblance of control. Above all, we celebrate the strength within us. In this work, I have found my purpose.
Hope – If I could have one wish, it would be for a cure to cystic fibrosis. Until that happens, I will put huge trust in the medical and scientific communities. New iterations of drugs that help address the genetic cause of disease? Yes, please. Gene editing in the future? Bring it on. So many men and women work hard every day to help my daughter live a long, full life. Thank you for giving my family hope.
Faith – I am a Christian and am raising my children with faith. When I put my daughter to bed each night, I remind her that angels dance beside her bed. We even sing about it. “And while they dance, my Jesus will watch over me and keep me healthy, happy, safe, and strong. Warm and cozy all night long. Healthy, happy, safe and strong, my Jesus keeps me.” Her eyes close, and I know that she is deeply blessed.
Beauty – When I see my daughter digging for worms under the watchful eye of her brother. When I feel the warm touch of her hand. When I hear her singing as she tries to outswing her shadow. When she races after bubbles, twirls in her tutu, and cruises down the street, streamers flying. She is beautiful to me, and God couldn’t have made her any better, cystic fibrosis and all.

These are the 5 gifts cystic fibrosis has given me. To all the parents out there, I hope that amidst the hard times and uncertainties, you can find moments of thankfulness for the gifts your child’s condition has given you.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

By

Laura Spiegel spent 12 years at the world’s largest biotech company, partnering with professionals and care teams to help people with special needs and disabilities lead full and happy lives. In 2013 her daughter was diagnosed with cystic fibrosis. Laura now hosts Paint Her in Color, a website that offers emotional support to parents of children with special medical, developmental, or behavioral health care needs. When she isn’t reading, writing, or soaking up time with her husband and kids, Laura can be reached at Paint Her in Color, by email at laura@paintherincolor.com, and on Facebook and Twitter.

Author Jolene Philo

Who Are You? A Biblical Answer

Who are you? That’s a question we ask about our children, but perhaps more often about those with disabilities and special needs. Guest blogger Mark Arnold gives a hope-filled, biblical answer.

How do we view children or young people with additional needs? Do we think about them as problems to solve? How do we perceive how God can use them to evangelize? Are they just children who are autistic, dyslexic, blind, deaf, physically disabled, or non-verbal?

They may be many of these thing, but are they just what people see them to be? Or are they so much more than they seem? God sees them as much more. He speaks through them to share the gospel with the world? Here are words from God about how he answers the question, “Who are you?”

You are made in the image of God. So God created human beings in his own likeness. He created them to be like himself. Genesis 1:27a

You are amazingly and wonderfully made. How you made me is amazing and wonderful. I praise you for that. What you have done is wonderful. I know that very well. Psalm 139:14

You are eternally loved by God. I have loved you with a love that lasts forever. I have kept on loving you with a kindness that never fails. Jeremiah 31:3

You are God’s children. Some people did accept him and did believe in his name. He gave them the right to become children of God. John 1:12

You are Jesus’ friend: I am the vine. You are the branches. If you remain joined to me, and I to you, you will bear a lot of fruit. John 15:5a

You are full of joy. And that is not all. We are full of joy in God because of our Lord Jesus Christ.” Romans 5:11a

You are at peace with God. Those who belong to Christ Jesus are no longer under God’s judgment. Romans 8:1

You are on God’s side. What should we say then? Since God is on our side, who can be against us? Romans 8:31

You are inseparable from the love of Jesus. Who can separate us from Christ’s love?… No! In all these things we are more than winners! We owe it all to Christ, who has loved us. Romans 8:35…37

You are God’s temple. Don’t you know that you yourselves are God’s temple? Don’t you know that God’s Spirit lives among you?” 1 Corinthians 3:16

You are one with Jesus in spirit. Whoever is joined to the Lord becomes one with him in spirit. 1 Corinthians 6:17

You are part of the body of Christ. There is one body, but it has many parts. But all its many parts make up one body. It is the same with Christ. We were all baptized by one Holy Spirit. And so we are formed into one body. 1 Corinthians 12:12-13a

You are the sweet fragrance of Christ. God considers us to be the pleasing smell that Christ is spreading. 2 Corinthians 2:15

You can do anything through Christ’s strength. I can do all this by the power of Christ. He gives me strength. Philippians 4:13

You are completely forgiven through Jesus, Because of what the Son has done, we have been set free. Because of him, all our sins have been forgiven. Colossians 1:14

You are complete. Because you belong to Christ, you have been made complete. Colossians 2:10a

You are a child of light. All of you are children of the light. 1 Thessalonians 5:5

You are Jesus’ brothers and sisters: Jesus is not ashamed to call them his brothers and sisters. Hebrews 2:11

You are holy and chosen: “Holy brothers and sisters, God chose you to be his people. Hebrews 3:1

You are children of God, and Jesus protects them: “We know that those who are children of God do not keep on sinning. The Son of God keeps them safe. The evil one can’t harm them. 1 John 5:18

Our children are more than what people may see. They are loved more than they, or we, can imagine. They are valued more than all the gold and jewels on Earth. Let’s remember these verses when we meet these wonderful people and ask the question, “Who are you?”

All Bible verses were taken from the Biblica NIrV Accessible Edition, with permission.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for both at the bottom of this page.

By

Mark Arnold is the Additional Needs Ministry Director at Urban Saints, a leading national Christian children’s and youth organization. He is co-founder of the Additional Needs Alliance, a national and international advocate for children and young people with additional needs or disabilities. Mark is a Churches for All and Living Fully Network partner, a member of the Council for Disabled Children and the European Disability Network. He writes an additional needs column for Premier Youth and Children’s Work (YCW) magazine and blogs at The Additional Needs Blogfather. He is father to James, who has autism spectrum condition, associated learning disability, and epilepsy. To find out more about how Mark’s work can help you, contact him at: marnold@urbansaints.org or @Mark_J_Arnold.

Author Jolene Philo

What Anchors Me

What anchors me is a question guest blogger Scott Newport has asked often since he lost his son in 2009. In today’s guest post he describes how a few kind words help him cope with grief and give his life purpose.

I’m not always sure what anchors me, what keeps me from getting stranded on the next shoal in my life. Sometimes it’s just a pleasant memory that keeps me on course. Other times a kind word makes me think deeper.

Getting stuck is never fun. It can often lead to time spent alone, sometimes shipwrecked for days.

Last Sunday I was sitting in the third row from the front listening to the pastor. HIs sermon was the first of four part series titled Sermons from the Seats. That Sunday was about my journey. When the video of me talking about how I lost my son to childhood disease ended, I explained the work I do as a parent-mentor at our children’s hospital and how my son Evan taught me the one thing.

“The one thing is that people matter,” I explained.

I never try to stay clear of the pain of grief. I know better. I’ve learned over the years it’s better not to fight the wind, but to use her to help move me along. Sometimes the breeze is all I have to clutch. Sometimes, I wonder if the work I do helping families navigate in their high stakes hospital environment matters. Many times, it’s a life and death experience.

Back to what anchors me from getting stranded.

A month ago I was talking to a mom. She had endured two months in the hospital with her sick child. There was no clear diagnosis presented by the doctors. Her child was not getting better. Her fears were skyrocketing. I guessed she was thinking about death.

I inquired about her sadness.

“Scott, I am just so mad,” she said.

“So, when do you cry?” I asked.

“I can’t,” she insisted.

The next week, when we me again, she cried three times during the visit. The lonely hospital room for parents became crowded with her thoughts of uncertainty. Her soul seemed to be drifting closer to survival.

Last week I sent her a short text. “Just checking in with you all.” The next morning, she wrote me back.

There are some people that can sense other people’s emotions and energy, like a person whisperer. I think you are one of those people.

I was thinking of the woman at the end of the church service when the pastor said, “If anyone had struggles they’re grappling with, write it on that card you were given when you came in. When you’re done bring it to the front, lay it on the stage, and exchange it for one of these wooden tokens. They’re engraved with Scotts logo about hope.”

As hundreds of people came forward I started to cry. My girlfriend leaned over and placed her hand on mine.

“Scott, your face looks like you’re in a space somewhere between sorrow and joy,” she whispered.

That evening, in bed I reflected on what the mom in the hospital and my girlfriend had observed. I started to talk to God about what anchors me when I’m heading to get stranded again. When I wonder if what I’m doing matters, maybe what anchors me are their whispers.

They sure seem like it.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up at the bottom of this page.

By

Scott Newport is a carpenter who has a vision for unwanted, damaged wood. His finds are treasures to his soul. Each discovery he makes unfolds into a beautiful piece of furniture for which he finds a home, usually with a child or caregiver of a child with special needs. He writes about the life lessons he learns from his 3 children, especially from Evan who died in November of 2009 after 7 years of joyful life. To access all of Scott’s guest posts, click on the magnifying glass at the top of the page and type “Scott Newport” in the search box.

Author Jolene Philo

Subscribe for Updates from Jolene

Hiram and I are back from visiting family in Arizona. The weather was perfect, and knowing we’d escaped the sub-zero temperatures in Iowa made it feel even better. Part way through the week, my sister and I road-tripped to southern California to visit an elderly relative. I’ll spare you the description of our barefoot walk on a sunny beach in January the morning after we arrived, and skip straight to Muriel, the elderly relative.

She’s 87, sharp as a tack, and an amateur historian who has researched and compiled the story of her grandfather (my great-great-grandfather) during the Civil War. But, her sight is failing rapidly, as is her stamina and mobility. All three of us knew this might be our last visit together, so our hugs were extra long and hard when we said good-bye. Muriel was still waving when our car turned the corner. Leaving her was hard, but she is a woman of deep faith, not afraid of walking through the door from this life into the next.

The Monday after Hiram and I returned to cold and snowy Iowa, an email arrived from a friend in a nearby town. She’s also a writer, and I thought she was confirming the let’s-talk-about-writing coffee date we’d scheduled. Instead, this active, fit mom of three boys (ages 8–13) wrote to cancel because she had just been diagnosed with cancer. She and her husband hoped to know more after meeting with the doctor later in the week. Her note ended with these words. “We’re trying to just do the normal life things, and trust that God knows what he’s doing. I don’t doubt him. I really don’t. I don’t like what he’s doing, but I don’t doubt him.”

The tears that never came while saying good-bye to Muriel fell hard and fast after hearing from my young, talented, and very dear friend. My heart broke for her husband, for her sons, for the fight she faces, and for the words she will not be writing during her treatment. Even though my friend and I are certain of the glory waiting for her if she loses her fight, I am praying she will live to see her boys become men and husbands and fathers, and to experience the joy of being a grandma before she walks through that door.

Like Muriel and my young friend, I don’t doubt what God is doing. I know that though his thoughts are not my thoughts and his ways are not my ways, he can be trusted. I know we pay more attention to God’s voice when health fails and life grows short. We better understand his truths when we realize our days on this earth are numbered. The work he has for us to do on this side of death’s door will end.

When death draws near for those we love, we finally comprehend the truth God whispers into the ears of all his children. “Work as long as it is day. Night is coming when no man can work.” As we cry out to him in our grief and through our tears, we realize that our time on earth is precious and finite. And we redouble our efforts and redeem the time by doing his work with passion and purpose. Until the day he calls each of us to walk through the door of this world into the next.

What Were You Thinking?

by jphilo | Jan 4, 2016 | Church Newsletter Columns

“Joseph, son of David, do not fear to take Mary as your wife,
for that which is conceived in her is from the Holy Spirit.
She will bear a son, and you shall call his name Jesus,
for he will save his people from their sins.”
Matthew 1: 20–21

A few weeks ago, we celebrated an early Christmas with our grandkids: a 3-year-old boy, an 11-month-old girl, and an 8-month-old boy. As you can imagine, the celebration was loud. And lively. By the end of the festivities, the grandparents were begging for naps. Not so the wee ones. They vigorously objected to the prospect with all their hearts. Their parents needed every ounce of cunning and endurance, along with every lullaby in their repertoires, until the grands fell under the Sandman’s spell.

Without their parents’ concern for their welfare and safety, our beautiful grandchildren were clueless. On their own, they couldn’t choose what was good for them. They were completely vulnerable. Totally dependent on the kindness and compassion of the adults who love them.

As I watched, a thought popped into my head. “God, what were you thinking when you sent the Savior of the world–the One appointed to save us from our sins–to earth as a baby who’s life depends upon the goodness of a teen mom and a reluctant dad?”
Scripture clearly states that this was God’s plan. More than once, the Bible says that the baby born to Mary was the Savior. On the other hand, God’s Word doesn’t explicitly explain why He made such a plan.

However, the New Testament showcases vulnerable people. Jesus’ ministry is a veritable hit parade of vulnerability: children, the poor, lepers, widows, the blind, the lame, the disfigured, the mentally ill, the disenfranchised, the oppressed, the elderly, the dying.
The Savior of the world never condemned the vulnerable people he encountered. He never looked down on them. Instead, he healed them. He loved them. In John 9:1–3, Jesus announced that vulnerability is not an accident. Rather, it is part of the Father’s sovereign plan.

As he passed by, he saw a man blind from birth. And his disciples asked him,
“Rabbi, who sinned, this man or his parents, that he was born blind?”
Jesus answered, “It was not that this man sinned, or his parents,
but that the works of God might be displayed in him.” John 9:1–3

With those word, God spoke value and purpose into the life of every person, even the most compromised. Those words are a call for us to affirm the value of every life. God calls us to be like Mary and Joseph. To get our hands dirty, even when affirming life is difficult. God’s call may look different for each of us. One person may counsel and support unwed mothers. Another may work in the church nursery or teach children’s Sunday school. Some families may pursue adoption. Others may visit with the elderly at the nursing home. Some may devote their days to the care of their children with disabilities or aging parents.

Like Mary and Joseph, we are all called to value life. When a teen mother and a reluctant father obeyed God’s call, redemption came to a fallen world. What could happen when you heed God’s call? Today’s a good day to find out.