Well, today is two years since we took Peter to the ER for the start of his non-febrile fevers. I'd kinda been dreading the date coming around again. Worried that it would stress me or stir up hard memories. But as Mike and I talked about it this evening, there was nothing but happiness.
It started on a Wednesday.
In hind sight, I'd seen his first seizure the Friday before. He got up from his nap. We were sitting on the floor together. His head jerked back and his eyes rolled back. But it almost looked like he had just lost his balance. And for a mom who'd already held her child through six febrile seizures, you desperately hope it isn't seizure related. I tried desperately to put it out of my mind.
But that Wednesday morning, Peter was sitting on the bar stool eating his breakfast and woah, a quick jerk... his head went back and his arms went out. I remember it perfectly. My heart. It felt physical pain. My stomach dropped. I knew.
Mike was at breakfast with friends. I called him right away. In his usual calm, under-reacting way, he told me to not worry and just watch him. A little later, another one. I dressed him and sent him to preschool. I told his teacher to watch but she said she saw nothing.
That afternoon, he woke up from his nap and Kathy was here to pick him up. As he walked over to her, he jerked. She saw it with me. I was so thankful.
The pediatrician we saw that evening was amazing. She was such a gift. She took us seriously. She listened and thought outside of the box. She didn't write us off. AND if that wasn't enough, as we told her every single detail of Peter's life and my pregnancy with him, we discovered that her mom is a nurse I'd worked with at my last job. She planned to schedule us an appointment with a neurologist.
But the next morning, Peter's jerks continued and intensified. We were told the neurologist could only offer us an appointment months later. So the pediatrician recommended we take Peter to the ER. The next few days were the start of a scary and long series of events.
Two years later. I couldn't be more thankful for how things have gone. Peter has been controlled on his one medication, Keppra, for nearly two full years. Next month will be TWO YEARS since Peter's had a grand mal seizure. That's the longest period of time IN HIS LIFE that Peter has gone without a seizure. When I told Mike that tonight, his first word was HALLELUJAH. Yes. Hallelujah. Hands Up. From the depths of our souls, Hallelujah. Or as Peter sometimes says, HAL-LE-EULA! Two years. Crazy. Wow, for as scary as the start was, I am thankful for how it is now. Not every event of the last two years has gone as I'd hoped or dreamed. Parts have been gut wrenching. This isn't one of them. Well, apart from it being an issue at all.
Its also been two years of therapy. Two years of nearly weekly PT, OT and speech. We went for his PT eval the morning before we took him to the ER. Therapy is not as jarring as it used to be. It seems somewhat normal now. My mentality has shifted from thinking we'll just work hard and "catch up" to we'll probably always work hard. But that's OK. Most of the time. He has made Peter just as he intended. His ways aren't our ways.
Its been two years of being challenged to look at things differently. To not just strive for the things the world sees as great, but to see and believe the ways He has made Peter unique, just as He intended. That hasn't come easily. Only with much spurring on from my husband. Much struggle, fight, bitterness and then tears of relenting and trusting His goodness and plans.
I've been encouraged today by this song as I struggle down this road. The struggle lies as much (or more!) in me as anywhere else. Just to know that no matter what, He never gives up on me.
I've had moments in the last couple weeks of such great thankfulness for this girl (Holly). The overwhelming sense of the companionship He's given us over the last 2.5 years to walk through grief together. Life looking different than we thought. She does it with such grace. We have the freedom to be real together. And the hope and certainty that it won't always be like this. To struggle, to trust. Thankful to do it together.
I don't know what the next two years will look like. If they involve Keppra and no seizures, I'd be thrilled. Only God knows. God, help us. We pray we'd know Your faithfulness and mercy. Thanks to all of you who have prayed for our {growing!} boy.
As I sit here and read you pour your heart out, I relive it with you knowing how hard the past 2 years have been for you all. And then I get to the end.... now I sit here at my desk tears streaming. Laura, there are no words, actions, or way to describe what you, Mike, Lily, Pete, your mama & daddy, John, Jessica, Audrey, Will, Emily, and Elizabeth mean to me or how deeply indebted I feel. The hours we have spent on the phone :) sorry Mike for the phone bill.
ReplyDeleteI have just been reflecting myself on the past two and a half years. I feel truly blessed and thankful for the deep relationships I have in my life. I was reading through old emails, cards, and facebook messages and felt this overwhelming sense of love. Laura- you have been at the center of many of those. I'm thankful to have you to be real with about this grief and how life isn't exactly what we thought it would be. I love you so much and know that although we don't know what the next two years look like... he is using all things for his greater good!!