This week our family is preparing to celebrate the 14th birthday of our grandson, Ethan. This is a day that in our wildest dreams we thought would never happen. Though there is so much more to that story than I am able to tell here today, I did want to share what I wrote in the fall of 2012 to share with family and friends at a party to celebrate Ethan's sixth birthday.
I invite you to travel down memory lane with me for a bit as I reflect back on one of the many miracles our mighty God has done for us in the midst of the hardest situations and circumstances we could ever have imagined. To God be the glory!
FINDING HIS VOICE
It was a sad day when he stopped speaking. How well I remember the days and weeks leading up to the day–July 30, 2011–when he uttered his last word, which was his first name. In fact, it had been a full 16 months of an emotional roller coaster that began the day our precious three-year-old grandson, Ethan, was diagnosed with a tumor in his brain.
An astrocytoma grade 2 is what the doctors call it. We called it God's good plan, because God is a good God and He always works everything out for good for those who love Him.
(This photo of Ethan was taken in the summer of 2011, around the time he stopped talking.)
Doctor visits, medical tests and procedures, chemotherapy, and seizure meds, became the new normal as our sweet little guy was dubbed the happiest boy with a brain tumor you ever saw. "Hi, I'm Ethan Joseph Roth! What's your name?" was what he said to everyone he met, young or old–not just once, but over and over again. Clearly, it was God's goodness that led our daughter and her husband to choose this name for their second-born son. Ethan means 'strength' and Joseph means 'God will add'. Literally every time Ethan met someone, he pronounced a blessing over himself (and us all!), proclaiming 'God will add strength'.
In those early days, most people never suspected anything was wrong, unless they detected the slight bulge in his head where the shunt had been placed. He laughed and played and ran and jumped just like other little boys. Then came the steady increase of seizures along with the loss of his ability to control his emotions, then his bodily functions. For several months, Ethan suffered wild mood swings, one minute all loving and sweet, and the next, hitting and calling people (even his beloved mommy) Poopy Head", and then back to saying "I love you" while giving out kisses, all within a matter of seconds. Seizures would either knock him out cold for an hour or two or totally energize him to the level of a white tornado. You never knew what you might get.
Eventually those days gave way to a calmer child, for which were grateful, though it wasn't long until we began to see a marked decline in Ethan's ability to walk and feed himself. And then he spoke less and less every day.
I remember trips to Sioux Falls for Ethan's chemo checkups, when he would chatter practically non-stop. "Where are we?" "Can we eat at Pizza Hut? "My name is Ethan Joseph Roth; what's yours?" But one day we realized that all the way to Sioux Falls, while at the children's hospital, and all the way back home, Ethan had been strangely quiet. He had spoken perhaps 20 or 25 words in the whole day.
From that point on he spoke less and less until that fateful day when he stopped talking altogether. Then Ethan lost all interest in food and seemed to literally be wasting away. A feeding tube was inserted and he began to gain weight and started looking healthier in some respects, though he seemed very lethargic and unable to focus on anything. Ethan seemed to be slipping away from us as we celebrated his fifth birthday–the one doctors said would most likely be his last–in November 2011. In December, Ethan received his last chemo treatment and news that the tumor had stabilized, though, according to doctors, once it started to grow he wouldn't have long to live.
The two-year mark of this insidious, mind-numbing diagnosis came and went, as we watched Ethan become even more lethargic and disinterested in life, like he was just too weak to care.
Ethan was easier to take care of now and we all grew used to seeing him quietly sitting in his chair, not fussing or smiling or responding to people or the things going on around him. Perhaps the only exception was brief times when he clearly communicated through his eyes to those of us closest to him.
Still, during all this time–over a year–Ethan remained completely silent, with the exception of crying out when he started going into a seizure. What any of us would have given just to hear his voice one more time!
And then came the blessed day when Ethan found his voice–exactly one year, one month and 20 days after he had lost it! Not only that, but he started making the funniest faces. It was like a baby developing language skills, babbling, trying out different sounds. He "talked" for quite awhile and then fell silent again.
(This video was taken by his mama on the very day Ethan found his voice again.)
Ethan didn't have a lot to say over the next few days, but then all of the sudden he didn't want to stop "talking". It's been that way ever since! He's saying "MomMom" and "Daaad-dy"; "Hey" as he waves. He is even saying something that sounds an awful lot like "Grandma" which makes this grandma's heart soar; and with each passing day, he is vocalizing more and more.
Needless to say, we are all rejoicing for Ethan has definitely found his voice.
Vicki L. Prentice, Written Oct. 15, 2012