Wade

2021 EMBRACING BRAVE North Texas Recipient

“He’ll never walk; he’ll never talk; he’ll never throw a baseball.” Those were the words we heard on the fifth day of Wade’s life from one of the neurologists at Cook Children’s NICU as they reviewed with us the results of his MRI. From that moment forward, I knew that we were going to prove that doctor wrong.

 I had a perfect pregnancy. Minus a little heartburn (well, it was some pretty awful reflux for months) and extremely swollen ankles…oh, and the stomach flu one time…it really was actually pretty great. My appointments always went well, and my doctor even told me one time, much to my husband’s chagrin, that I was perfect! I absolutely loved being pregnant. So much so that Wade decided to stay a tad past his due date and was induced at 41 weeks.

Curtis and I went to Baylor Irving hospital on May 21, 2007 as two very naïve first time parents. We began the process for an induction, and we were over the moon excited to meet our baby boy the following day. On the afternoon of May 22, things began to progress. Unfortunately, things quickly took a turn for the worse. Wade, for lack of better terms, was stuck in the birth canal and the doctor was unable to pull him out with forceps. We were rushed to the operating room where he was delivered via c-section and had to be resuscitated. Because of the lack of time, Curtis was not in the delivery room, and I did not get to see, touch, or even hear Wade cry after he was born. At this point, everyone was doing everything they could to keep Wade stable and to basically save his life.

During this time, Cook Children’s was trialing a new technology called full body hypothermia. The premise was, you drop the baby’s core body temperature for 72 hours in an attempt to stop any further damage from happening due to the lack of oxygen. At the time, we knew that Wade had lost oxygen. We just didn’t know what, if any, damage he had sustained. In order to qualify for the treatment, a baby had to meet certain criteria, and thank God, Wade met them all. One of the criteria was that Wade needed to be on the cooling mat within four hours in order for the treatment to be effective. Since he was born in Irving and he needed to get to Fort Worth during rush hour traffic, he was transported via helicopter. Rene, an amazing nurse from the Teddy Bear transport team made sure I was able to touch Wade’s hand before they flew him off. That was Tuesday afternoon. I didn’t see or touch my baby again until Friday afternoon.

Wade ended up being at Cook for only 16 days. I say “only”, because considering how close we were to saying good-bye, 16 days seems like nothing. However, those 16 days were scary and emotional and devastating and life changing. We did learn from the MRI that because of the lack of oxygen, Wade ended up with brain damage and suffered what is called hypoxic ischemic encephalopathy (HIE), which basically means a lack of oxygen/restricted blood flow which affects the brain. A year or so down the road, as a result of Wade’s traumatic birth, he was officially diagnosed with cerebral palsy and dystonia.

With this diagnosis has come a myriad of different medical conditions. Cerebral palsy is an umbrella term that covers a lot of symptoms and disabilities as a result of brain damage, and those symptoms look different for everyone. When Wade was younger, we just didn’t know what things would look like for him, and we just let him guide us. From just a few months old, his daily life involved a lot of physical therapy, occupational therapy, and speech therapy. As we navigated the therapy appointments, we learned that it would probably be easier for Wade to navigate life with a wheelchair, as he does not have functional use of his arms/hands or legs/feet. He independently uses a power wheelchair that he operates with a head array. He also has a manual chair that someone else can push for those places that aren’t that accessible. The area of his brain that was damaged also affects his speech. He uses a communication device that he activates with eye gaze to talk. Along with internet connection on his device, he can also use his device to change channels on his TV.

The above are the physical things that people see when they look at Wade. What they don’t see are all the sleepless nights he has. In his 14 years of life, he’s probably slept through the night less than 20 times. Things seem to be getting worse as he gets older. Curtis and I take turns every other night and we flip him for comfort a couple of times throughout the night. Wade also has chronic body pain in his muscles and joints. He takes several medications to help with the pain, as well as the sleep. He’s also had several major surgeries because bones are out of alignment. Wade gets a lot of migraines, and he also has a lot of gastrointestinal issues. Unfortunately, the older and bigger he gets, the more difficult some things are going to get for him. Thankfully, cerebral palsy is not a progressive disability, but age certainly is not kind to the body. But technology and medicine are so amazing, and I am always hopeful for the future.

With that being said, when meeting Wade, you would never know that his body hurts as badly as it does. Although he is a bit shy at first, once he opens up, he is quite a prankster and loves to laugh! He has a smile that will absolutely melt your heat. He is quite curious—or rather “nosey”—and wants to know everything about everyone! His favorite current interests are watching YouTubers who discuss their DVD collections, as well as watching them review movies. He also enjoys watching Olympic gymnastics and diving. He and his dad have just recently started watching UFC fighting together! It is so bittersweet, but he is entering his freshman year in high school!  It sure has taken a village to get us to where we are today. Even with all the therapy appointments, doctor appointments, and surgeries, we have tried to keep Wade’s life as typical as possible. He is in school and class with his neighborhood peers. We go to community outings and sporting events. We do the neighborhood cookouts and the family vacations. Oh! And remember that NICU neurologist? We really did prove him wrong! Wade does walk; it’s just with a power wheelchair, not his legs. Wade does talk; it’s just with a computer, not his spoken voice. Wade does throw a baseball; sometimes it just veers to the left! He actually played t-ball on a regular t-ball team for 3 seasons and all the kids loved it!! You see, sometimes life throws you curveballs. And I’d say our family hit it out of the park! - 2021