For most of you that know måe, you know that I can be a chatterbox. There are times I am quiet, especially if I dont know you well. I drove my poor parents insane with constant questions, and if they were alive today, I am sure they would think I had found my true calling as a reporter.
It boggles my mind to even think of not having the ability to speak or not being able to communicate all the thoughts that run through my head.
Our two-year-old grandson, Xavier, lives with this every day of his young life. He started having seizures when he was just a baby and it was undiagnosed until he was approximately 12 months old. The type of seizures he has are known as absent seizures. If you didnt know what to look for, you wouldnt recognize it. Its not as if he falls to the floor in a grand mal seizure. Its subtle, a rolling of his eyes and occasionally dropping to the floor for just a moment. He has countless episodes every day, despite taking several medications.
Once Xavier turns three, his neurologist will be able to prescribe other anti-seizure drugs that should be more effective. But for now, there is only so much that he can do. One of the current options is for Xavier to go on a special diet that primarily consists of protein and fat, very little vegetables or carbohydrates. For some reason, the change in diet seems to help diminish seizures.
Most children are babbling by eight months. Parents are delighted when they hear that first Mama or Dada. Xavier recently looked at our daughter, smiled and said Mama for the first time about two months ago, when he was approximately 26 months old. He hasnt said it since. The neurologist explained to Julie that when children have seizures, often what they have learned is lost. Since Xavier has so much abnormal brain activity each day, he simply doesnt retain what he learned and has to learn it all over again. Consequently, this bright-eyed smiling little boy cannot talk, cannot tell you he is hungry or thirsty, or that he wants to go outside to play or even tell his parents he loves them.
Xaviers way of communicating is through piercing shrieking that make your ears ache. While the sound is annoying, I cant even imagine how he feels, knowing he cant make anyone understand what he wants or what he is thinking. Its not as if he has words that he simply mispronounces. He doesnt say anything except make some basic consonant sounds. Those arent words; they are just noises. One of the precursors to speaking is the ability to point. He has just begun to do that consistently. Cognitively, hes not on the level he should be.
My heart aches for our daughter and for Xavier. When he smiles, you wonder what is going through his head. When he cries, you dont always know how to fix what is wrong because he cant tell anyone. Does he know that he cant communicate? Is he frustrated and upset? Right now, all those firsts with Xavier cant be enjoyed because his families know it may not happen again. Those moments are bittersweet.
If I could have just one Christmas wish this year, it wouldnt be to receive any type of tangible gift. Its not something you can hold in your hand, or plug in a wall.
My wish is that our little guy will be able to communicate with the world.