Meet Elijah!

By: Sharonza P.

Elijah may be smaller than other nine-year-old kids, but he is big in personality, energy, wit, kindness, and snacks. Elijah is a great help to his classmates at school. He is very observant and quite mischievous. He enjoys getting into anything and everything. He also has his “firecracker” moments. He can be quite expressive and disruptive.

  

Elijah is my little warrior and overcomer. When he was born, the doctors immediately told me everything that was wrong with him and all of the things he wasn’t going to be able to do; by the time he was four weeks old, I had a meeting organized by the NICU with the hospital parishioner discussing the plan in case he didn’t survive.

It was like “the world” gave up on Elijah without even giving him a chance. But I knew he was going to be a conqueror!

I didn’t know much about CdLS when he was born, but from the look in his eyes, he assured me he was going to be just fine. And that he certainly is.  He runs, he no longer needs hearing aids, he can eat and drink by mouth with a few modifications, he utilizes his communication device quite well, and he knows some sign language.  

Elijah was diagnosed when he was two days old; it was a complete surprise. Elijah had most of the distinct characteristics of individuals with CdLS. He was transferred to Cooks Children’s, and the genetics team immediately confirmed his condition. Once he was three months old, we sent his bloodwork to a lab in Chicago to verify his syndrome and to tell us the exact gene that was mutated.   

When Elijah was diagnosed, I went through all the emotions and feelings, and through them all, I’m grateful.

Our life could be made into a Lifetime movie with all the challenges, changes, difficulties, and victories we’ve faced.   

I didn’t know I was going to have a baby with special needs, let alone a baby with a syndrome I had never heard of. He needed to have surgery soon to have a g-button placed because he was aspirating.  All these new terms were thrown at me while I was still trying to grasp being a new mom at 39 and having a fragile child. It was hard. My life was flipped upside down. I knew what would be required of me regarding his care – I wanted to do everything to ensure his well-being and happiness. But while doing that, I was falling apart mentally, physically, and emotionally. I love Elijah with all my being, but for so long, I grieved the child/life I thought I would have. No one in my immediate family/circle could understand my pain.

It was and sometimes still is a heartache that I can’t put into words.

I felt like I lost everything. But by the time Elijah was 6 years old, God revealed to me that I didn’t lose anything; I gained so much more by being on this journey as his mom.

Elijah has his fair share of doctor appointments with specialists, as well as weekly speech and occupational therapy sessions. He’s not able to be as independent as he’d like to be or like most children his age. He still needs help getting dressed, toileting, bathing, getting in/out of vehicles, preparing his food, and eating or drinking. And though that may sound like he’s totally dependent on me, there are some things that he’s worked on or working on to become more independent. He has a few sensory sensitivities to food textures and sounds.   

Elijah is extremely musically inclined; he has a fantastic rhythm, and he loves to dance and clap his hands.

He loves playing his piano/keyboard, listening to music, and watching songs/music videos on YouTube for Kids. Two of his all-time favorite songs are “Wheels on The Bus” and “Hokey Pokey.” He also enjoys being outside. As hot as it is here in Texas most of the year, the weather doesn’t seem to bother him; he wants to be outdoors. Elijah likes to play in his rocket-shaped play tent. I call it his house because he has just about everything in there. But it’s his space, and when he’s in there, it’s truly “Elijah’s World” with his stuffed animals, books, musical toys, pillow, and stuff that probably belongs to me.   

One challenge for him is that he is often misunderstood because he is nonverbal, and people assume he is a toddler.

He understands far more than most people give him credit for.

He may not be able to verbalize his thoughts, but he’s very aware and, for the most part, understands what you’re saying and what’s going on. He knows some sign language and uses a communication device to express himself. His doctors may say his biggest challenges are GI-related. It was bumpy for the first five years of his life, but we have most of his GI symptoms/issues under control now.  

It’s such a joy and peace of mind knowing the CdLS Foundation is here for us.

Elijah had just turned one when we attended the National Conference in Orlando in 2016.  We were blessed to receive one of the scholarships that year. And oh, what a grand time we had! If I could be around our CdLS family daily, I would be on Cloud 9. To be around other families who shared similar medical histories and stories and be near children like Elijah, without people staring or looking at you because your child is stimming or because your child is beautifully made, brought so much relief and “fresh air.”   

Last year, we attended the Texas CdLS Family Gathering. Though it was just one day, we had a wonderful time. I met people I hadn’t met before and saw a few familiar faces from Orlando. I can’t speak enough about the phenomenal support from the Foundation.   

The Foundation has also assisted Elijah’s doctors with inquiries regarding some GI and renal concerns. It’s been nice for the Foundation to always keep us “in the know” regarding what’s going on in other parts of the country/world regarding CdLS, research opportunities, and insights.   

Elijah is an exceptional young man and a quick learner. He is an outstanding example of strength, persistence, laughter, and wit—nothing (including CdLS) can or will stop him. There are no limits to this guy!