Whole in the Sight of God

Whole in the Sight of God

Whole in the Sight of God

“Whole in the Sight of God” is one of many songs written by musician and today’s guest blogger, Steve Siler. In this post, he explains not only the how and why behind the song’s creation, but also his personal connection to those with disabilities and special needs.

I remember it like it was yesterday.

We all have those memories; those moments in our life where time stood still and everything crystallized. For me it was when the ultrasound technician said, “I hate to be the one to tell you this.”

That was the moment my wife and I discovered that the child she was carrying had something called Spina Bifida. In an instant we were transported into the world of special needs. Issues and concerns that had been virtually invisible to us up to then were suddenly in the forefront of every waking moment.

It’s kind of like when you get a new car. You’ve never realized how many (fill in your model here) there are on the road until you have one. Then suddenly it seems like they’re everywhere.

And those empty handicapped parking spaces in a crowded parking lot that used to be so annoying—well, they don’t seem quite as annoying anymore.

How do You Write a Song for someone with a Disability?

A few days after I learned that my son was going to be born with a chronic condition that would affect his entire life, I did what any songwriter would do.

I went into a writer’s room at Starsong, where I was a staff writer at the time, and processed what I was feeling by writing a song.

To call it a room is being generous. It was more like a converted closet. Monochromatic beige walls and exposed plumbing were the only visual highlights.

Click here to read the rest of Whole in the Sight of God at the Music for the Soul website.

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Steve Siler is founder and director of Music for the Soul a multi-award-winning not-for-profit ministry using songs and stories to bring the healing and hope of Jesus to people in deep pain. Siler is a Dove Award winning songwriter, music producer, author, and speaker. He is co-host of the Music for the Soul Podcast: Where Music, Hope, and Healing Come Together! He and his wife Meredith have two children and three grandchildren.

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Experiencing Post-Traumatic Growth while Raising a Child with Disabilities

Experiencing Post-Traumatic Growth while Raising a Child with Disabilities

Experiencing Post-Traumatic Growth while Raising a Child with Disabilities

Experiencing post-traumatic growth (PTG) while raising a child with disabilities may not be on your radar screen when you’re drowning in the stress associated with caregiving. The only growth that concerned me during our son’s medically fragile years was increasing his strength as he fought for his life. Paying attention to the stress I was experiencing while he struggled, and possible growth coming from it, never crossed my mind.

Now, as I reflect on the hot mess I was in 1982 after our son’s birth, I barely recognize the young and very stressed person I was then. The credit for my present lack of hot messiness goes to post-traumatic growth.

By now you may be asking yourself, “What is post traumatic growth, how do I sign up for the class, and how do I know it’s happening in me?”

Let’s start with the first question.

In a research study conducted by Taylor Elam and Kanako Taku, they define PTG as “the positive psychological changes as a result of a struggle with a major life crisis or traumatic event.” The crisis or event is the kind that rocks a person to the core and forces a re-evaluation of beliefs about the world. That sounds a lot like what many parents experience after a child’s diagnosis, doesn’t it?

Now, on to the second question.

The bad news is that I don’t know of classes about PTG. But according to Richard Tedeschi, who has worked extensively with traumatized veterans, you can facilitate and encourage your own growth in 5 powerful ways.

To learn more about experiencing post-traumatic growth while raising a child with disabilities, go to this link at the Key Ministry blog for special needs parents.

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Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. Sharing Love Abundantly with Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and Amazon. See Jane Dance!, the third book in the West River cozy mystery series, which features characters affected by disability, was released in October of 2023.

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Mending Broken Hearts

Mending Broken Hearts

Mending Broken Hearts

Mending broken hearts is all too familiar to guest blogger Kelly Denham. She and her husband’s hearts are still mending after a medical mistake left their son TJ irrevocably injured and later resulted in the decision she wrote about in today’s post.

On February 26, 2018, my husband and I stood in TJ’s hospital room and watched as nurses removed our 21-year-old son’s life support. As you can imagine, it had been an agonizing decision. Parents are supposed to protect their children and keep them from harm. We were choosing to remove the very thing our son needed to live.

TJ’s injury was caused by a medical mistake. We had spent five years in and out of hospitals and rehab centers, and we had seen too much. We had learned that we couldn’t always trust medical staff. If you followed TJ’s Caring Bridge or read his story in my book, Trapped Within, you know that God, in His goodness, provided a trustworthy Christian doctor, Dr. P, the last few days of TJ’s life to gently guide and walk with us through that hard decision. 

But what many of you don’t know is that after TJ’s death, guilt and doubt began to creep in. Questions like, “Would his condition have improved if we had waited longer?” began to gnaw at my husband and me.

In the spring of the following year, our adopted grandson Aiden had chosen to play soccer. Watching him play sports is one of the joys of my life. On this Saturday morning, I arrived at the field ready to be his cheering squad. As I sat on the sidelines waiting for the game to begin, I looked up and was surprised to see Dr. P walking toward me. His son was on Aiden’s team!

Dr. P sat down beside me. We exchanged pleasantries and visited for a while. Unable to control myself any longer, I quickly blurted out the question I had been wrestling with for a year. “Did we make the right decision, Dr. P? He was going to die, right? I mean, even if we had kept him on life support, he still would’ve died?”

“Yes,” he answered. “He was going to die. You made the right decision.”

I sighed deeply. It felt like a weight had been lifted off my shoulders. Dr. P’s reassurance was exactly what I needed to hear to begin moving forward and enjoy life again.

Some may believe that Aiden and Dr. P’s son being on the same team was just a coincidence. That’s not what I believe. On the contrary, I believe the meeting was a divine appointment orchestrated by God to mend a mother’s broken heart and save her from being crushed in spirit.

What about you? Are you experiencing affliction? The Lord doesn’t promise to prevent His children from suffering. He doesn’t promise to remove affliction while in the midst of it. He doesn’t even promise to prevent the very worst outcome.

What God does promise us though is that He will answer us when we call on Him. He will be with us in trouble, and He will deliver us and honor us.

We are secure in the Lord’s arms, so call upon the Lord, dear weary one. He’s in the business of mending broken hearts. His presence will give you the strength to endure any affliction.

“The Lord is close to the brokenhearted

and saves those who are crushed in spirit.”

Psalm 34:18

“He will call on me, and I will answer him;

I will be with him in trouble.

I will deliver him and honor him.”

Psalm 91:15

 

In loving memory of TJ Denham

July 16, 1996 – February 27, 2018

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Kelly Denham lived through unspeakable tragedy by learning to hold fast to God’s promises and find comfort in His unfailing love. She is an author, speaker, and advocate for the voiceless. Kelly has four daughters, one son, and thirteen grandchildren. She lives in Atlanta, Georgia with her husband and their adopted grandson. She also directs the special needs ministry at First Baptist Atlanta.

Author Jolene Philo

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Special Needs Mom, How Are You Doing this Mother’s Day?

Special Needs Mom, How Are You Doing this Mother’s Day?

Special Needs Mom, How Are You Doing this Mother’s Day?

Special needs mom, how are you doing this Mother’s Day?

Has anyone asked you that question before? Has anyone acknowledged that your feelings may not match what cards and commercials make them out to be? Have you had the courage to acknowledge, even to yourself, the swirl of emotions that surround you as the second Sunday in May approaches?

Joy.
Loss.
Love.
Grief.
Wonder.
Fear.
Gratitude.
Guilt.

I felt all those emotions as Mother’s Day and our son’s first birthday arrived within weeks of one another in 1983. I was a wreck that May—exhausted, worried, depleted, and unable to think straight. Though our son is now an independent adult, those early emotions tend to resurface each May. As our son got older, I became wiser about how to acknowledge my feelings and celebrate being a mom without letting difficult emotions rule the day. I hope these 5 lessons help you do the same.

Lesson #1: Enjoy your Child

Your child is a wonder, perhaps not the wonder you expected, but wonderful all the same. Take a moment to enjoy who your child is—or who she was if she’s no longer physically present. What about her makes you laugh? How does she surprise you? Why is your world better because of her? What has she taught you about love? Let your answers increase your joy in the wonderful aspects of her life and lighten your heart.

Lesson #2: Make Room for Grief

The joy your child brings is real and so is your grief. This Mother’s Day weekend make room to acknowledge this emotion for what it is—the loss of many dreams. Dreams of what parenting would be like. Dreams of how your child’s development would progress. Dreams of celebrating milestones. Write your thoughts down. Tell God how much your heart hurts. Admit how hard your grief is to bear. God knows a thing or two about loss and heartache. Let him hold you as you grieve.

Click to read the rest of Special Needs Mom, How Are You Doing this Mother’s Day? on the Hope Anew website.

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Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. Sharing Love Abundantly with Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and Amazon. See Jane Dance!, the third book in the West River cozy mystery series, which features characters affected by disability, was released in October of 2023.

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Deciding to Have More Kids after the Birth of a Child with Disabilities

Deciding to Have More Kids after the Birth of a Child with Disabilities

Deciding to Have More Kids after the Birth of a Child with Disabilities

Deciding to have more kids after the birth of a child with disabilities requires careful thought and advice from trustworthy friends and professionals. Today, guest blogger Kelly Simpson describes how those factors and faith played a part in their decision.

Oliver, our EA/TEF baby just turned 5! For years we lived taking extra precautions knowing what would help keep him healthy, out of a hospital and an Intensive Care Unit (ICU). The number of daily tasks needed to accomplish that could be overwhelming to some, but it was all that we knew and felt normal since he is our first child.

The odds of being born with EA/TEF are 1 in 5,000 births according to Children’s National Hospital. The fear of it happening again was a heavy burden that held us back from trying for more children. Oliver’s specialists and surgeons have been very happy with his growth and current condition. (Check the Different Dream article Update on Oliver for more details.) His progress has been a blessing from God.

Having several children was a desire for us, and as Oliver began to get older, we questioned ourselves. “Will we try again?” We consulted with Oliver’s specialists and doctors on the odds of having a second baby with the same or similar conditions. They were very low, as the condition is considered rare. I still wasn’t convinced.

We (mostly I) wrestled with the “what ifs.” Our fears that we (I) gripped so tightly began to show our (my) biggest doubts:

Did we trust God’s goodness?
Did we trust that he would again make a way for us, even if it looked different than what we wanted?
Did we trust that He really has our best interests in mind?

Eventually, I had to hand my fears over to God. I could not trust Him with everything except my children. I had to trust that He would again make a way regardless of what was to happen. We already knew we had some of the best doctors and surgeons on our side. They had already walked through our hardest times with us, and they would do it again.

So we tried and are blessed to say that we are pregnant with our second child due later this year! As I look back over the past several months and year, I identified several things that made deciding to have more kids after the birth of a child with disabilities easier for us. Though I don’t want you to view me as an expert, I want to share some truths that I try to practice (and have failed to do many, many times) with you.

  • Pray and pray some more.
  • Know that you serve a loving and powerful God. He made a way for Moses to part the Red Sea (Exodus 14) and Daniel to survive the Lion’s den (Daniel 6). He will make a way for you too!
  • Remember that God is your creator. He knows your deepest needs and desires. You don’t have to explain anything to Him. He already knows. Surrender can consist of very few words or a long list of concerns. He is okay with either. He can handle all of it.
  • Trust by handing over control on a daily, even hourly, basis.
  • Consult a doctor if you want more children after giving birth to a child with a disability. The ones you are already familiar with and know very well are a good place to start.
  • Seek support from trusted friends and family.
  • Pray some more.

I hope these truths help you make the best decision for you and your family.

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Kelly has lived her whole life in Kentucky. She and her husband, Jeremy, have a five-year-old son, who, born during one of Jeremy’s deployments, was diagnosed with EA/TEF. Kelly has always felt a calling to serve others and is living the dream as an Army wife, middle school teacher, and now, as an encourager to those who are living a dream different than they had planned.

Author Jolene Philo

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My Favorite Vacation Planning Tips for Special Needs Families

My Favorite Vacation Planning Tips for Special Needs Families

My Favorite Vacation Planning Tips for Special Needs Families

My favorite vacation planning tips for special needs families were put to good use this past January and February. Our original idea was a 3-generation trip to Disney World over spring break. Due to some health issues we weren’t sure would be resolved beforehand and because we wanted maximum enjoyment and may good memories for the grandkids, one of whom lives with autism, anxiety, and ADHD, we decided to vacay closer to home. These 10 planning tips helped us make spring break the happiest place on earth for everyone in our family.

Tip #1

Less is more. Choosing a destination that was a drivable distance meant less money spent on travel and more to spend on fun attractions, as well as more time enjoying them. Less travel time also meant less cranky kids when we arrived at our destination.

Tip #2

Research, research, research. This allowed us to find lodging that best met our family members’ needs and our budget. It also helped us compile a list of kid- and disability-friendly attractions in different possible destinations so we could make the best choice for our family. You can do the same for your family so everyone can participate fully.

Tip #3

Book a rental home instead of a hotel. Rental homes tend to provide family gathering spaces and quiet areas where kids with sensory issues can recharge and avoid meltdowns. Food can be refrigerated and/or prepared for those with special dietary needs. Laundry facilities are often available—a godsend for kids with special toileting needs. Rental homes are often cheaper than hotels, too. A favorite feature in our rental was a clean and airy basement where the kids could go to roughhouse and be as noisy as their hearts desired.

To find the rest of my favorite vacation planning tips for special needs families, visit the Key Ministry Website.

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Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. Sharing Love Abundantly with Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and Amazon. See Jane Dance!, the third book in the West River cozy mystery series, which features characters affected by disability, was released in October of 2023.

Author Jolene Philo

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