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.