Jahleel Is Wonderfully Made // Interview

Hello! My name is Kallie, and I have been married to my wonderful husband, David, for nine and a half years. We have lived in five states since our wedding, and currently live out in the Pacific Northwest region, where David serves as a pastor. We have been the deeply blessed parents of our son, Jahleel, for just over two years. We adopted him from Hong Kong in 2014, and are in the process of adopting our second child, a little boy waiting in China. 

Jahleel has a number of ongoing medical issues, most of which fall under the umbrella of his main diagnosis of a paternal 15q11.2-14 genetic deletion, sometimes known as “expanded Prader-Willi syndrome.” He is one of just a few known cases in the world with this genetic deletion. He is non-ambulatory, non-verbal, and can only be fed via g-tube. Jahleel uses a bipap machine overnight and for naps due to severe obstructive sleep apnea, and wears braces on his hands and feet. My little boy sees 12 doctors in 14 different medical specialties, and goes to therapy six times per week with four different therapists. He has a charming smile and a social, laid-back personality!

What has God taught you through Jahleel's special needs?

God has used this special needs parenting journey to teach me many important things! When you have a child with a disability, the challenges are unique. I have really seen how His strength is made perfect in my weaknesses. Because of the unique challenges we have faced, I have a much deeper level of compassion and respect for others. Also, seeing Jahleel’s excitement at simple joys in life has made me more thankful for our many blessings.

This could probably be its own post, but I have truly seen that God provides – whether through financial provision with the medical bills, a calm attitude when Jahleel is in pain, the energy to get through another long day of medical and therapy appointments, tube feeds, medications, and lifting my 32-lb. child. The Lord has given us the resolve and mental toughness of hearing hard diagnoses, having one good cry, and moving on. He has put some dear, wonderful friends in my life who are also moms through special needs adoptions.

Most importantly, having a child with special needs helps fix my eyes on heaven. It would be so easy to get caught up in constantly wondering if my son will ever walk, talk, or eat by mouth. Because of my faith, I can remind myself daily that my son is baptized, he hears God’s Word, and that nothing else truly matters in this life.


What kind of struggles does Jahleel have because of his disability?

With Jahleel’s severe low muscle tone, many ordinary tasks are really hard for him. Movement is an enormous challenge for him; he is currently limited to rolling. He is not able to eat anything by mouth. His throat muscles are so weak that he cannot swallow safely and will aspirate. Sleeping is not simple for him. He is a great sleeper, but he must wear a bipap to keep his airway from obstructing itself. Jahleel tires quite easily because it takes much more effort for his to use move body than it does for a person with normal muscle tone.

Communicating is also tough for Jahleel. He currently doesn’t have any words at all and attempts to tell us things with gestures. Try as we may, we often just can’t understand what he wants or needs.

He also endures a fair amount of pain on a very regular basis. Jahleel needs blood draws every few months. He certainly gets sore from all his hard work at therapy. We have to give him a daily hormone shot every night. I change out his g-tube button every few months, which is painful for him. He’s had about a dozen surgeries. Anesthesia tends to give him emergence delirium, and he has night terrors for days or weeks afterward. We’ve been told it’s the toddler version of PTSD.


What are your Jahleel’s strengths?  What does he enjoy doing?

Jahleel’s greatest strength is his happy personality! He is a joyful little boy and very laid-back, with one of the most charming smiles I’ve ever seen. He loves being out and around other people. I describe him as a “music and movement” kid. Music can instantly calm him if he’s upset. (He particularly loves Adele’s voice). As Jahleel slowly learns how to use his voice, he is trying to sing. It is adorable! He loves watching moving scenery while riding in the car or his stroller. Other things he enjoys are water (baths and swimming), the hair dryer, church and Sunday school, swinging, lights, Wheel of Fortune, playing “ball” (rolling it back and forth) and Baby Einstein videos.

Jahleel is also tough. He doesn’t cry at all for shots, blood draws, or IV starts anymore. He is very cooperative with all the appointments he has to go to. I am very proud of his bravery and how he makes the best of his circumstances.


How do you keep fed spiritually?

It took me awhile to figure out that reading Scripture before bed like I used to just wasn’t working anymore. I was too exhausted at the end of the day, yet my mind was still going a million miles a minute! I eventually figured out that listening to Bible readings or devotions is a much better fit for me now. The WELS mobile app has daily Bible readings and devotions that you can either listen to, or read. I use those often. Also, the ESV Bible has a “listen” option which is also a great Spiritual tool for me. We also frequently listen to hymns in the car.


How does Jahleel receive spiritual enrichment?

Jahleel was baptized on his “Gotcha Day,” in spring of 2014, which created his saving faith. (read David's guest blog post here). His faith continues to be fed whenever he hears God’s Word. Daily, we read a Bible story to him before bed and say prayers. He is often at my side when I listen to Scripture readings. We attend church regularly. Let me tell you, we could all learn a lesson from Jahleel – he LOVES church! He gets so excited to be there. He will even cry if we happen to drive by church and don’t pull in! He also gets to attend Sunday School, and is always excited about that.

How has your church family actively been a help to you? 

I can think of a few specific ways that our church has helped our family.

The first is by their willingness to include Jahleel in Sunday School. I would completely understand if they were uncomfortable with his feeding tube and lack of mobility, but they love having him, and he loves his class! It is also a blessing for me to be able to attend Bible study.

The second was the kindness of a dear friend (a church member) after Jahleel had surgery earlier this year and had to spend the night in the pediatric ICU afterward. Jahleel had night terrors all night long, and I didn’t sleep at all. My friend texted me the next morning, offered to run to the store for anything we needed, and brought us dinner that night. It was such a relief to not have to worry about cooking that night, or leaving the house for the next few days!


What are some other ways can we support families of children with special needs? 

In general, there are many ways that friends can support families of children with special needs:

  • First and foremost is to pray for them.
    The special needs parenting life is rich in blessings, but also full of very unique challenges. Loneliness comes by easily in our world, and the challenges to our faith are abundant.
  • The second is to understand that scheduling is hard for us.

    My son’s schedule is busier than that of many adults, and it wears us all out. It’s hard for us to leave our son – we only have a few baby-sitters who know his care well enough. Day trips away from home require much packing and planning with tube feeds and medications, and we are limited to activities that are wheelchair-accessible. All too often, things just don’t work out. But please keep inviting us, because we truly do need a break sometimes!
  • Practically speaking, I would advise to just ask how you can help (especially when a child is hospitalized or has a sudden ER trip).

Special needs moms are all different. Some moms would love a helper to come to doctor’s appointments, some would love a volunteer to do a quick grocery run so we don’t have to deal with transfers, wheelchairs, and packing medical equipment; some of us are looking for people willing to be trained to baby-sit our children with medical needs, and some of us maybe want to go out for coffee and talk about anything not medical for a couple hours!

  • Finally, I would ask that people please choose their words wisely.

It is a dagger to our hearts to hear things like, “What’s wrong with him?” or, “I bet if you fed him ice cream, he would eat,” and, “Must be nice to ride in that thing [medical stroller] all day long.”

Instead, positively-worded questions and comments such as, “Tell me about your son!” “He is looking so healthy and happy today,” and “Look how much he’s moving his upper body! That is great!” are appreciated.

Kallie, thank you so much for sharing Jahleel's story with us. Having a glimpse into your every day helps us know how we can better support families with special needs.

Being informed removes ignorance and we as a church family need to take more responsibility and be proactive in this area.

Research shows that special needs children and their families aren't getting the spiritual support they need and they need encouragement all the more! 

Thank you for sharing specific ways that your church family has been a blessing to you. That is such a blessing. 

And how fitting that Jahleel's name carries this message:
"Waiting for"
"Hope in God"  

I consider that our present sufferings are not worth comparing with the glory that will be revealed in us. For the creation waits in eager expectation for the children of God to be revealed. For the creation was subjected to frustration, not by its own choice, but by the will of the one who subjected it, in hope that the creation itself will be liberated from its bondage to decay and brought into the freedom and glory of the children of God.

We know that the whole creation has been groaning as in the pains of childbirth right up to the present time. Not only so, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for our adoption to sonship, the redemption of our bodies. For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what they already have? But if we hope for what we do not yet have, we wait for it patiently.
— Romans 8:18-25

Perfectly Imperfect

Joy.My heart swelled with happiness the Easter our twins were nearing age two. The gratitude in my heart was overflowing as I remembered the overwhelming changes our family had survived over the last two years. We had grown from three children to five with the addition of the twins. We had moved from an international culture in suburban California to a northern Wisconsin farming community and were adjusting. We had purchased our first home. There was so much to celebrate as we prepared to worship our risen Lord. What a glorious morning it would be!

jay and meg


Perfection. Every child had a new item of clothing for this service. The older girls had new dresses and our eldest sported new pants and a tie. I had broken out the sewing machine for the first time since the move and made the twins matching pinstriped sailor outfits, hers a dress and his with shorts and shirt. Tears of thankfulness stung my eyes as I surveyed my shining brood.

Normally we positioned our family in the back pews as any discrete family with active babies would do. This particular Sunday was different. I was happy and I was proud of my wonderful family. We marched right down to the front pew in church, scooted hither and yon to accommodate where everyone would sit, and settled in.

Expectation. All went well during the opening hymn and liturgy. The babies quietly moved amongst the five of us, in usual fashion, wanting to be held by dad, then sisters, then brother, and back to me. My normal vigilance relaxed as the sermon began. Had we passed the threshold of taking one or the other twin out of church at least three or four times each service? I began to be hopeful. They were all being model children. I just knew this was the turning point.

Within a moment of my musings, the pastor made the main point of his sermon. He asked for a call to action from the congregation with a loud question. Making use of the silence, the pregnant pause, he waited. The congregation held their collective breath as they searched their souls for a proper rhetorical response. The packed church was completely silent in expectation.

Broken. As if on cue, the response came. It was loud and clear from the front row, our front row. Imagine the loudest and longest and juiciest-sounding release of flatulence human ears have ever heard. It reverberated forward, then upward, then off the rafters to the back of the church and boomeranged around back to our pew. There was no doubt as to the origin of the sound. With a perfect sense of timing, one of the twins (remaining nameless) had single-handedly made a statement and sullied the pastor’s oratorical moment.

With the innocent indiscretion committed, my idyllic family image came tumbling down and me with it. First I saw the unbelieving sidelong glances looking for confirmation that the others had heard the same explosion. Stifled gasps erupted behind us. Our own pew shook with giggling and movement. We were dealing with the moment in the only way we knew – we laughed! As I recall, whatever remained of the sermon was lost as the front row motion went through the rest of the church.

Forgiven. The sermon ended quickly.  Our pastor, a good friend, wisely refrained from eye contact of any kind until much later in the day.  Being a forgiving person, he mollified my utter mortification over the event. Of course, it was out of my control, we reasoned. But, still. Really? On Easter Sunday? Why us, Lord? Would any one ever forget the disrespectful interruption we had caused?

So much for our perfect morning! My perspective on expectations for my family changed immensely that day. In hind site, the humorous event was just what we needed to lighten up the day. When thinking through the whole incident, I realize that what I really wanted was children who loved the Lord, us and each other. To this day, those desires have not changed, and my family has not disappointed. Not only that, we still giggle as we recall this Easter morning at family gatherings!

As the mom, I am so thankful that we don't have to be perfect to receive God's favor.

For it is by grace you have been saved, through faith—and this is not from yourselves, it is the gift of God— not by works, so that no one can boast. Ephesians 2:8-9

How about you? Have your expectations been shattered? What lesson has it taught you? How is your family better for the incident?


Memorizing Scripture with Littles :: A Fun and Easy Tip

memorizing scripture with littles hhhIf you’re happy and you know it, clap your hands…. The itsy bitsy spider goes up the water spout…. Pat-a-cake, pat-a-cake, baker’s man…. One, two, buckle my shoe….

We all know those familiar words by heart, don’t we?? From when we were tiny babes, our parents clapped and smiled as they repeated rhymes and songs over and over again until we knew them, too. So well, in fact, that we can still pull them from memory at the drop of a hat.

What about Bible verses? Are we able to recite them as easily? Are we teaching them to our children?

Our greatest joy and responsibility as Christian parents is to share the love of God and His precious Word with the ones we've been entrusted with!

Let the Word of Christ dwell among you richly as you teach and admonish one another with all wisdom through psalms, hymns, and songs from the Spirit, singing to God with gratitude in your hearts. ~Colossians 3:16

Memorized Scripture is yours! It is yours even without a Bible in your hands. It is on your heart and mind and cannot be taken from you. It is yours to keep and to use for comfort and growth and for battle. It's yours to share as encouragement for others. It's yours to chew on and let sink deep in your heart. It's your Truth and a Lamp in the darkness and the Love letter in your pocket.

No rhyme or song is more important than that. Not even close!

As a mama, I struggled at first to find the "best" method to help my son memorize Bible verses. Do you want to know what I've found to be the golden ticket??

Hand motions. 

Hand motions!

My little guy has been able to put to memory many Bible passages simply by incorporating hand motions with the words of each verse. It's been a game changer!

Here's a short clip of my sweet kiddo saying John 3:16 by heart ::

John 3:16 with hand motions

Three cheers for hand motions!

A few thoughts: Keep it simple - No need to go crazy thinking of the perfect actions! Or using too many. Each motion should simply match up with an important word or phrase in the passage.  Have fun - Learning God's Word is a joy! Smile and be enthusiastic. Allow your child to come up with some of the movements for each verse.  But don't let it be a distraction - Hand motions are a tool to aid in the goal of memorizing Scripture, obviously not the main focus. If things get too crazy, then take a break or come up with a different plan.  Be consistent - Try to keep them same motions for certain words. Many can be used again and again! If you cross your arms over your chest for the word "loved" in John 3:16, then do the same action when you memorize other passages that include "love". This will also help kiddos to relate the passage they're working on with other ones they have learned. Run with it - This technique can be also used for memorizing hymn stanzas, the 10 Commandments, and parts of the Catechism. Not sure what to memorize first? Just start! Teach your favorite Bible verse. Open the Bible to a page and pick a passage. Pick a passage that applies to a struggle your kiddo has been dealing with. Flip to your favorite book and begin there. Ask your spouse or your mom or a friend. Google "Bible Passages to Memorize List". There's no "right" place to begin! Add a tune - If coming up with a simple melody to go along with the words and motions helps, then go for it! Repeat repeat repeat - Even though the hand motions can help, memorization still takes a lot of time and practice. Keep at it! Work on a verse at the breakfast table, in the car, before bedtime, and when you're waiting in the checkout line.

My son, pay attention to what I say; turn your ear to my words. Do not let them out of your sight, keep them within your heart. ~ Proverbs 4:20, 21

My prayer is that the precious passages of God's Word would grow deep roots in the hearts and minds of your dear children. No matter the method to learning and memorizing Scripture, take joy in embracing the treasure the Lord has given to us!

Do you have a Scripture memorization technique that has worked well for you and your family or students?? Please share!  RachelSignature