To the Mama Whose Child Is Diagnosed with a Chronic Disease

by jphilo | Oct 29, 2020 | Advocacy, Different Dream, Encouragement

To the Mama Whose Child Is Diagnosed with a Chronic Disease

To the mama whose child was diagnosed with a chronic disease life changes. Guest blogger Laura Spiegel, whose daughter has such a diagnosis, shares her experience with readers with gentleness, encouragement, and wisdom.

Oh, Mama. Today you became a member of the one club you never really wanted to join. You found out that your child has a chronic disease. If you’re like me, you’re wondering if life will be forever separated into “before” and “after.” Maybe it will be. Maybe not. Either way, my heart hurts for you because I’m guessing that despite your brave face or your stoicism or your smile, you are overwhelmed.

I know I was. On August 12, 2013, my five-week-old daughter was diagnosed with cystic fibrosis. I acutely recall the moment I heard this surprising news and feeling that everything had changed. I’d worked in healthcare in the field of chronic disease for almost a decade. And yet, it had never occurred to me that this would one day be me.

Is that bad? It sounds so callous and arrogant looking back, but I just never really thought about it. Other people’s kids might be sick. But not mine.

Not my baby.

I remember our first day in the cystic fibrosis clinic like it was yesterday. I cried in the hospital’s parking garage and did my best to nurse my daughter in the waiting room.

And then it happened. That moment that is forever etched in my mind. Our pediatric pulmonologist took my shaking hands, looked me squarely in the eye, and said “Your daughter is going to live a long and full life.” She went on to say that it was her job as a physician and our role as parents was to help enable this.

I have carried these words in my heart every day for the past seven years. There is hope for my daughter. It is not always an easy road, but it is our road. And alongside the battles, we have most definitely had our blessings.

Above all, I have tried to hold myself and the friends and family that surround us to one key principle. My daughter has cystic fibrosis, but that alone does not define her. Defining her exclusively by her health–or attempting to center our family entirely around it–seems so limiting. Like capturing black and white alone in a world full of color. My daughter loves Minnie Mouse, dancing, looking for ladybugs, and telling stories. She also has cystic fibrosis.

And me? I’m going to paint her in color.

To the mama whose child is diagnosed with a chronic disease, know that you can paint your child in color too. It might not happen overnight, but most works of art rarely do.

Every time you embrace the belief that your child can lead a full life, you add a brush stroke or two.
When you refuse to define your child solely by his or her health, you add another hue.
As you learn how to balance daily care with the unexpected messiness and vibrancy of childhood, nurture the blessings that come alongside the battles, and treat yourself with kindness, you may notice your painting taking shape.

One day, perhaps when you least expect it, you will realize that little by little–with every temple kissed and tear shed and smiling ache of the heart–you have done it. You have painted your child in color.

On that day, you will smile.

To the mama whose child is diagnosed with a chronic disease, know this. You are not alone. There is a community of other club members out here waiting to wrap our arms around you. And while it may not feel like it now, take it from a mom who has been there.

You can do this, Mama.

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

Archives

Categories

Can a Child with Disabilities Have a Faith?

Can a child with disabilities have a faith? That’s the question guest blogger Mark Arnold addresses in today’s post. His thoughts offer an abundance of biblical assurance and common sense that breeds hope.

Many Christian parents of a child with additional needs or a disability ask this question: Can a child with disabilities have a faith? It can be hard to answer, especially when a child has limited communication. But perhaps there are clues to piece together—things that Jesus did, understanding how our child responds to God—that can stretch and grow our faith too.

In a previous guest series Different Dream, we examined how a boy described as having an unclean spirit was healed by Jesus and how he raised Jairus’ daughter from the dead. This same Jesus who healed and raise people from the dead, and who rose from the dead, can reach into the hearts and minds of anyone to bring them to faith.

To suggest that a child is unable to be reached by Jesus is to ignore scripture and to put limits on the power of the Holy Spirit. Everyone is able to be reached and to come to faith.

A little boy named Jack is a modern example of this truth. He was about eight when I met him at an Easter festival. While overseeing the inclusion provision, I learned he had autism. He doesn’t communicate verbally, but does in other ways. He prefers not to be in a large, noisy group and finds contact with someone he doesn’t know difficult. I watched him build a tower out of Jenga blocks and saw a lot of my own son James in him. I got on the floor and help him, as he’d been struggling to build alone.

We built the tower, watched if fall, and built it again many times; each time it fell Jack laughed—a wonderful joy filled belly laugh of pleasure—and glanced at me to start again. It was great fun. Eventually I had to leave Jack to carry on alone. He seemed weak and small again. He got the tower to six or seven blocks high, and it all fell down. No joy filled belly laugh anymore. He just started over again. My heart broke.

I wondered whether Jack had been impacted by any of the spiritual programs in his session at our Easter festival. Or had he just been child-minded, busying himself with Jenga blocks? A few weeks later, I got the answer. His family had got in touch with the festival organizers to say what had happened on their way home. Jack, who is almost entirely non-verbal, had been singing, yes singing, a line from the song Cornerstone which the worship band had played during in his sessions.

Weak made strong, weak made strong, weak made strong!

His eyes shone as he sang.

My heart broke for Jack again, but this time with joy that his heart had been touched by this song. That through it he had indeed encountered the Savior’s love. I can no longer sing that song without remembering Jack, without thinking of him, without crying tears of joy that he is loved by his Savior.

Can a child with disabilities have a faith? Jack taught me that there is hope for every child. He taught me that Jesus Christ can reach everyone, everyone, with his love through the power of the Holy Spirit. No matter how profoundly the impact of additional needs or disabilities, the love of Christ can and does reach our children. As Paul wrote, it’s all about grace:

My grace is sufficient for you, for my power is made perfect in weakness.”
Therefore I will boast all the more gladly about my weaknesses,
so that Christ’s power may rest on me.
That is why, for Christ’s sake, I delight in weaknesses,
in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.
2 Corinthians 12:9-10 New International Version (NIV)

Our children can indeed be reached by the love of Jesus and the power of the Holy Spirit. They can respond in faith, and our own faith and understanding can grow and be strengthened too.

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

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.