A thunderstorm of emotion washed over my heart as I read her recent essay entitled “4 years ago today…” I can relate with everything Danielle describes about their day in the waiting room as Trevor underwent a complete hemispherectomy to control the spasms. Our day with Savanna and her second surgery was strikingly similar. Their blog, Happy Being Trevy, has information about Infantile Spasms and how it affected their son Trevor and their family.
She has taken the time to construct a video of Trevor’s journey, their journey. The video is incredible and a great way to tell the story.
The link to the video is below. But first…
4 years ago today…
4 years ago today…we’d already hugged and kissed him goodbye by now. I’d run my fingers through his curls one last time. God, I miss those curls. And kissed every inch of his sweet face. Inside my heart was screaming “NOOOOOOO!”. There was an intense soul battle raging. One part of me desperate to snatch him off that stupid gurney and run away to the furthest reaches on the earth. The other part knowing we were here to rescue him. Knowing we HAD to be here. My love for him was the gravity force that held me down that day.
4 years ago today…we survived the longest, the most emotionally draining 13 hours of our lives. No day before could compare and no day since has yet to. We spent that day in a waiting room at Detroit Childrens. Feeling so very alone. So far from home. We wanted to wrap our arms around Toby and Bristel but were thankful we had left them behind. Because this was too much for us. It would certainly be too much for them. We watched party after party called to collect their loved ones from the recovery room. Until most of the lights were turned off in preparation for closing down for the night. Until the secretary had long gone home. And security had begun making rounds. And we, who were the first in the waiting room that morning, were also the last to remain. Until I thought if one more minute went by I was going to explode into a million pieces and float away. Because the emotional intensity was that strong.
4 years ago today…I sobbed when the doctors took us to a private room and told us they had successfully removed most of his left hemisphere. Those poor fellows. Asian men are known to be stoic and it was clear they felt awkward with my unrestrained mourning. But one of them had tears glistening his eyes too. My heart knit with his in that moment.
4 years ago today…over 14 hours after we’d kissed him goodbye…we finally saw him again. And he was breathing. Puffy from the fluids. Pale from the blood loss that two transfusions couldn’t hide. Wrapped like a mummy. But he was breathing. And in that moment…that was all that mattered.
4 years ago today…our son survived the Nightmare Miracle surgery that would not only save his life but would give it back to him!
4 years ago today…I had never heard my son’s voice make any intentional speech. This morning he called “Moooooommy” from his bed when he was ready to wake up. This morning he hugged my neck and said “love you”. This morning he told me “No call me Brick” because his new haircut makes him look an awful lot like the youngest child from the Middle. This morning he said “Wednesday. Tuesday yesterday…today Wednesday”. This morning he adamantly demanded chicken nuggets for breakfast. And drove me a little crazy with his cheek. Until he returned my “I love you” sign when he was leaving for school. Which melted me from the inside out.
Not every day these past four years has been easy or fun or miracle filled. But when I stop and remember 4 years ago today…how can I be anything other than joy saturated and thankful?
I confess that it was harder than I thought going back in time like that. Difficult…but also healing. It’s easy to get caught up in the sadness of the now and overlook the joy of how far you’ve come.
If someone had asked me to write the wildest script I could imagine for our family six and half years ago…it would not have come close to the path that has unfolded. Even though this journey with Trevy is very heavy and extraordinarily exhausting, we are SO thankful for where he is today. How far he’s come. For the people who have come beside us to advocate for him and support and believe along side us.
Amazing story. Thank you Kenny.
Thank you for sharing Trevy’s story, Ken. There is something so wildly bonding about knowing another family sharing your story because their own resembles it.
And Savannah is adorable!
Your ‘hugs’ salutation is so unique! I love it.
I really admire the amount of thought invested into your website and blog entries. Sometimes I read about peoples experiences and it just hits me like a ton of bricks emotionally due to the striking similarity in timeline of events, the documented feelings, and then the subsequent thoughts on the ‘healing’ process. “4 years ago today” was one such essay.
Thank you for letting me share your story, it is my honor.
Miracles do happen. We will continue praying for doctors to be able to help/heal more children.
Yes! All of the soul searching I have done about this. Why does God allow such suffering? Well, look what it does for the human race. We have an unbelievable system to diagnose and treat all types of syndromes. Sometimes, it is through this suffering that salvation is realized. Sometimes, families and patients of today are suffering so patients and families of tomorrow won’t have to suffer as much, or at all.