Special From the Start, Forever in Our Heart

From day one he had my heart. A boy who may not have suffered like some but had his own burdens to bare.

Within the first month of his life Charles began having rhythmic kicking in his legs. His doctor visit sent us for blood tests. It's hard to express what you feel watching your little one month old baby being stuck with needles into their tiny veins. Results came back with high ammonia levels. I was instructed to nurse him every hour and we were sent to Cook Children's Hospital in Fort Worth, TX for evaluation. They told us he would most likely be sent to Dallas to a higher care facility.

After prayers and running tests again, his levels had come back to a normal range. He was diagnosed with myoclonus, a sudden, involuntary muscle jerk, and we were sent home.

In the following months milestones weren't being met. At that time he was diagnosed with cerebral palsy. Which doesn't always look like you might think. An umbrella that many other neurological issues fall under. He was, however a very stiff baby, especially in the legs. My natural instinct was to stretch them in alternating movements. Like an exaggerated walking motion. In the end, I believe that helped in many ways.

After that and being diagnosed with developmental delay, he began physical therapy. Occupational therapy shortly followed suit. Specialist visit after visit, test after test, documenting symptoms but never having any real answers.

When he was around 10 months he began the rhythmic kicking again but this time it included his arms and we were sent for an EEG.

As I sit in this room with my baby, wires attached to his head, I'm watching a monitor read his brain waves. Each lead wire receiving chaotic signals from different areas in his brain. I didn't really know what I was seeing at that moment but I knew it wasn't as it should be.

He had infantile spasms, a rare type of Epilepsy that happen in early childhood and generally cause other problems.

Immediately we were presented with steroids. In theory they would grow the brain past the "spasms". We followed recommendations and gave him a shot in the thigh switching from one leg to the other every day for six weeks.

The theory seemed to work but it wasn't the end. Truly it had just begun. It stopped his seizures for a year and then they returned. He would be sitting at the high chair and suddenly his face would slam violently into the surface of our table. He was then put on anti-seizure medications. After that I kept a folded towel in front of him to soften the blows.

Time passed and the episodes came less often so I requested to back him off the meds because of their infrequency and his inability to communicate any negative side affects. The doctor agreed and Charles was given a "rescue med" to stop the activity in the event they wouldn't cease on their own.

Over the next few years we would see more specialist's. He would go through EEG's on multiple occasions, including overnight stays where they would video to capture an episode. We took him for MRI's, that never resulted in conclusions.

His eyes didn't work in sync. One or the other would deviate and cross. We were referred to an opthalmologist who patched his eyes in efforts to correct the strabismus, which worked. However, there was nothing wrong with his physical eyes. We were told it was likely how the brain was translating the messages. Like an old school film camera that took a picture but during development came out smudged or damaged. Eventually, he was diagnosed with Cortical Vision Impairment, described as trying to see through the holes in a block of swiss cheese. My observations in watching him over the years, is that he used his peripheral vision making his depth perception off.

Once a geneticists told us as an adult we might be looking at a three year old. Eventually, a $7000 genetic test was run on a quest to locate the source of his problems. After months of study, results were still inconclusive.

We had PT, OT, Speech, and visual therapist in and out of our home several times a week for the duration of his life.

Charles was very sensory, he didn't like his hair or teeth brushed or having his clothes changed. It seemed that maybe his skin was extra sensitive to touch. Making up songs and singing about those activities would calm him enough to accomplish those tasks. After awhile he became more adjusted and handled it better.

He was two before he sat up on his own, which coincidentally is the usual milestone for a special needs childs ability to walk. He wouldn't progress to walking until the age of five, with a gate a bit like a drunk man. We had to walk beside him with his hand in ours every where. Walking on his own only for short distances, mostly to stand at a window or a door and look out. He enjoyed staring at the sunlight and also being outside on his swing. Because long distances were tiring, he had a wheelchair when we went places.

He would rock and fidget his fingers and a few other autistic tendencies and around the age of ten was diagnosed with autism.

Eventually, the specialist visits slowed down and he would regularly see a neurologist, occasionally the eye doctor, and a metabolic geneticist.

We called him Bubba. Although very vocal he never was able to talk to us. Mostly unsuccessful, we worked with him to create a "sign" language of his own. A sign for drink, was the only progress we were able to make. He loved his sippy cup and wanted it 24 hours a day. Leading to many diaper changes and a constant sippy cup scavenger hunt. It was the only thing we could really ever get him to hold or touch beside pillows or blankets and hugging oversized stuffed animals.

I remember it took nearly 4 months of putting my hands on his while holding his drink until he finally figured out how to hold it for himself. It also took months of lifting one leg at a time and moving him forward before he learned to take steps on his own.

With the goofiest sounds, he made you laugh and his sweet smile could light the room. He loved music and tickles. Later in his life, he learned to reach out and grab your hand and pull it to his cheek where he loved tickles the most.

He had a normal range of emotions. Laughing, crying, anger, and sadness. Like with a baby, you learned to interpret what different sounds mean. It was mostly a guessing game at times.

At age 12 and going through puberty the seizures came back with avengeance. He was having so many he was struggling to eat. I already had to prepare his food into toddler size bites because he wouldn't chew. But during this hormone change I was force feeding him and it wasn't going well. I requested a prescription for pediasure. Efforts to get him some form of extra nutrients.

Already being a 5th percentile child, he lost around 12 pounds in the next three months and was having multiple seizures daily. They presented as the typical Grand mal episode, in which his body would stiffen and convulse. His breathing would be constricted. Sometimes his face would contort and his lips would turn blue. They also presented as head drop seizures. These would usually be one right after another for ten or fifteen minutes sometimes.

One morning we arrived at the hospital for a scheduled dental procedure and Charles was going in and out of consciousness from the seizure activity. That led to immediate transfer to the emergency room.

From there we'd spend three weeks in the hospital, starting in the ICU. He was on a video monitored EEG for nearly two of those weeks. During the monitoring they would stop counting after 100 seizures every day.

Basically, this began a troubleshoot to get them under control, to no avail. After exhausting all other options besides the old school medication, phenobarbital, I begged them to let me try CBD oil before going to that extreme. They relinquished, allowing me to give it to him as a nutritional supplement. Within two days the episodes had diminished tremendously. We then dealt with the aftermath of the pharmacuetical drugs which made him constipated and look like death with deep dark circles under his eyes. It was now a matter of getting him to eat enough and expel properly.

Finally, they let him go home with a prescription to give him alongside the CBD, two rescue medications, and new diagnosis of LGS, another rare seizure disorder.

I didn't know coming home what the future looked like for Charles. It took weeks to get back to holding himself up and grasping his sippy cup on his own. Slowly, he began to return to the Bubba that we knew and loved so much.

The next couple of years would go on as they had with regular neurology check ups and therapy multiple times a week. His progress was always very slow.

It seemed likely that the seizures took their toll on his brain functions and we would be changing diapers, feeding, bathing, and clothing him for the foreseeable future. His existence completely dependent upon us.

During the early parts of 2020 we were referred to a specialist which mentioned a genome test in which I expressed an extensive test had been done years back. A few months after resubmission with new information from rapidly changing technology they discovered something that wasn't seen before. A mutation on the DNM1 gene strand, which finally gave us an answer. All of the prior diagnosis stemmed under this new discovery. Another rare condition to add to the list.

On September 15, 2020, Bubba passed from complications of the seizure disorder. When we woke that morning he was gone. His body still warm, I performed CPR until the paramedics arrived. They were unable to resuscitate him. It was a week before his 15th birthday.

The wounds of losing a child is still fresh. Some days I reminisce and smile. Other days I think of him and cry. Sometimes it's hard to believe the only tangible thing I have left is a backpack, filled with his sippy cup, some shoes, items of clothing, a pair of braces special ordered to help him walk, some pictures, and my memories. I recently found myself holding that bag, tearfully embracing what is left just to feel close to him.

Charles was the 3rd child of 8. He is the only one with special needs and he taught me things I may not have known another way.

Always being a singer, now I sing from a different place. He was a vessel used to teach me how to reach into the depths of my soul and express creativity through my gift of music.

For him I wouldn't have wished for any of those struggles. For his siblings, my heart wishes he could've ran and played or taken them on adventures. But for myself I wouldn't trade any of the hardships for the lessons I've learned.

For all the parents who've lost a child, especially to those whose child was special needs. I feel your loss. Having 5 children still at home, my thoughts and hours are kept full. But that particular loss of purpose is a void which cannot be understood without experience.

And to those who may not know the loss of a child. Although cliche, I would say embrace any opportunity to love those placed into your care as if the moment you have is the last. Because you truly never know.

Dedicated to YHWH's Boy, Charles Glenn Littig II.

We love you always and forever.