Ben is in heaven.
He took his last breath here and first one in heaven last night around 8:05pm. May 5th, 2009 was his Birth Day. May 13th, 2014 was his Heaven Day.
I was on the back deck with Jack and Meg after movie night. The kids were in their pajamas, their hair still wet from their baths. It was a beautiful, peaceful night. The sky was a deep blue and the deck was slightly wet from the rain earlier. I sat in the rocking chair and the kids just stood outside and breathed in the fresh air. It felt good to have gotten to a point where Ben was comfortable. We had a rough night the night before, with him grabbing for us and wanting to be held the entire night. He seemed anxious, unsettled, and in pain. He didn't eat anything, drank little, and his catheter collected smaller and smaller volumes of urine. The nurses came that morning and prescribed some stronger medication to keep him comfortable. After being up all night, he slept soundly all day, waking up only for a few minutes with me around 5pm, to be moved onto his back and hold my hands. I felt pretty good about where we were. Chances were good that we would all sleep well tonight, I thought.
Andy ran to the back and whispered, "Min, I think Ben just passed."
What? But this is too soon! We weren't expecting this until the weekend, perhaps. Not now. We're not ready! We never prepped Jack!
Andy said that he went to give Ben his medication and his jaw was clenched, which was kinda unusual. He called his name, shook him, and he took a breath. Seconds - those long, drawn-out seconds - passed before he took another. That's when he ran and got me. The kids were amused with worms on the deck and so I ran to Ben's side. I kneeled on the floor next to him and felt his warm chest. He took another breath. We waited. And waited. For what felt like an eternity. He didn't take another. I suddenly forgot how to take a pulse. I felt his wrist, his neck, his chest. And convinced myself that I wasn't doing it correctly. I should feel a pulse. We put our heads against his bare chest and waited. Nothing. Then we saw bubbles foaming from his nose.
Oh, my word. He's gone. Our baby boy. He's gone.
We just looked at each other in a stunned silence. We didn't know what to do first. Do we call the doctor? Call our families? What do we tell Jack? We still have to put the kids to bed! We can't let Jack sleep downstairs tonight with Ben and Daddy (like he's been doing for the past few nights,) especially if there'll be people coming over to assist with Ben.
Okay, let's get the kids to sleep. Then we can react.
Thankfully, the kids went down really quick. Jack said he wanted to sleep in our bed and so we gladly appeased. I don't know how God gave me the strength to get those "Jesus Loves Me" last night. But He did. And I felt confident with each word. Oh, how He loves these kids. When I came downstairs, Andy and I collapsed in each other's arms.
As drawn-out as your child's illness may have been, nothing - absolutely nothing - can prepare you for that moment when your realize they're gone.
Members of both sides of our families came over to comfort and grieve with us. Hospice nurses came to empty our huge supply of medication, and the funeral home came an hour later to take Ben's body to prepare it for burial.
It would have been a lot more emotional if it hadn't been for the knowledge that Ben wasn't in that body anymore. It was just an empty shell. The real Ben was already running around in heaven, enjoying the presence of our Creator.
As I went to sleep, I felt a tightness in my chest that was difficult to shake. Although there was a good possibility it was the five-year-old's feet kicking me in my own bed. As much of a comfort it was to know that Ben was comfortable in his forever home. Healthy. Full of life. And in Jesus' presence. I knew that there would always be a part of me that would miss him terribly.
My heart is full of emotions. Sadness. Hope. Grief. Gratitude. And many of them, at the same time.
We had been praying for mercy. And God delivered. He took Ben home without too much suffering. His pain had worsened over the past two/three days. We expected a few more. We hadn't even needed to access his medaport to administer his drugs that way. Up until the past few hours, Ben administered his own medicine. God was very merciful in not making him suffer in pain any longer.
But this is our son. Our five-year-old. An identical twin. He was such an essential part of our family. Compliant, easy-going, self-sacrificing. He was the mediator between Jack and Megan. the one who waited for me to walk with me when he walked anywhere. The one who stood on his head while he watched television and insisted that he was working in the backyard and not playing. The one who was most excited about his new baby sister that was growing in my belly. "Mom," he'd tell me, holding up two fingers on each hand, "you're going to have two boys and two girls." It made me cry every time he said that. Because I was pretty sure I wouldn't be able to have all four kids together at the same time. And that makes me sad. He will be soooo missed.
And then there's the fact that we can talk so confidently about heaven, the fact that we know our Living God cares for Ben more than we do, the fact that we were 100% confident of Ben's place in eternity... we have hope. This life is just our temporary home. Ben would be welcomed by Jesus, given wings, and live in a beautiful place where it never gets dark, people don't get sick, and animals get along. He would fit right in. Because of that hope, we have comfort.
Even with all of these emotions swirling around us, we were still very anxious about Jack. How would he react to Ben not being physically present when he woke up? How would he respond to the news of passing's homecoming? We felt very anxious. During movie night, Jack looked over at his brother across the room, sleeping soundly (and yet heavy breathing) in the hospital bed and said, "Mom, Ben sleeps a lot. But he can't die. He's my favorite brother!"
We've talked about Ben being sick. We've talked about dying and heaven. But we had never put the two of them together.
The plan had been for me to talk with Jack after preschool today. Ben had reached a point where he was basically unresponsive and so it was safer to talk with Jack about the possibility that Ben's body wasn't going to get any stronger. We thought we had a few more days. Jack has a tendency to say things "like it is," and before now, we had been worried that his comments to Ben would necessitate a strong response from his sensitive and sick brother. In the past, he'd say something like, "It's a good thing one of us isn't sick so I can reach the top shelf," and Ben would respond, "I'm not sick! I just get headaches." We weren't as worried about Ben being affected by Jack's comments now.
But we never got to have that talk. It all happened so fast.
Instead, we decided to simply take our cues from Jack. My kids watched a whole movie before I asked, "Jack, do you notice that someone is missing this morning?"
"Yeah. Where's Ben?" he asked as he realized that the hospital bed in our living room was now empty.
I lost it. "Ben's in heaven with Jesus."
"Sad tears or happy tears?" he asked innocently.
"Both. Sad because I'm going to really miss him. We really loved having him be part of our family here on earth. But happy because I know he's with Jesus and he'll be waiting for us to see him again someday." I told him that the bump in his head had kept getting bigger. And it had been pushing on the important areas of his brain that help his body do things. "That's why he couldn't walk anymore. And then why he had a hard time talking. And then it became too big where his body was too weak to work properly anymore." He just soaked it in as his eyes raced back and forth, searching for answers from my face. "But he's running all around heaven now! He got a new body, one where the legs work and he doesn't get any more headaches!" I could see my pensive son processing all of this information. Andy came in from washing the dishes and he looked at him as if to say, "Dad, did you know this?" I'm sure he could tell from Andy's tears that he did.
Jack repeated a lot of what I said. He understood it all. Then added, "I feel like I'm a little sad." We reassured him that was okay. We felt sad, too. "And I feel like crying a little." He went over to his dad with open arms and cried into his shoulder, wiping his eyes every few seconds. Andy was crying and squeezing him tight. I almost wish I had a camera to capture that beautiful moment forever. But I won't ever be able to erase that special moment from my mind.
He truly did love his brother. His twin. His roommate. His first friend.
When he emerged, he said, "So does this mean he has wings now?" Even Jack knew how much Ben wanted to fly.
"Yes! And he's with all sorts of animals, animals who all get along. I bet he's petting a lion! And I'm sure he's caught at least five snakes by now!" These possibilities were exciting, even for him. "And because I have Jesus in my heart, I will join him in heaven someday!" We pointed to each of us, pointing out the fact that Jesus was in our hearts and so our future was guaranteed as well. Megan picked up her shirt and said, "Ben 'n Jesus! In my heart!"
Yeah, it was pretty much the most beautiful thing you've ever seen. My heart swelled with love and gratitude for the innocence of these precious gifts we had been given. God has really been so good to us.
"Does Papa know?" Jack asked. He did. My dad was the first one I called last night and the first to arrive at our house.
"Why don't you call him?" I suggested. Jack went through each of my family members, calling them one by one, to tell them about his brother.
Each of the conversations started out in a similar way. "Hi Papa? This is Jack. I'm sorry to tell you this, but Ben is in heaven now." The exchanges were sad, beautiful, and reassuring. "Yeah, I'm sad, too. But happy at the same time."
It was very comforting to hear him deliver the news (though it was not the first time they had heard it,) and have some authority over the information.
Andy spent all afternoon with the kids outside as I gathered clothes and pictures for the meeting at the funeral home. Being outside with the kids was something he hadn't been able to do in months for longer than two-minute stretches. Andy texted me a picture of Jack with the snake he caught in our backyard. And let me tell you, it was a huge one. The biggest we've seen on our property. And my firstborn was elated! When Andy and I left for our meeting, my parents came over to watch the kids. And Jack found a huge frog! It was the jackpot of wildlife for him today. Truly, the epitome of my sons' existence.
Isn't it just like God, to give us these gifts just when we need them most? Especially for a five-year-old who just lost his adventurous and wildlife-loving brother? When I was putting on his pajamas tonight, I said, "Jack, isn't it amazing that you found a huge snake AND a huge frog all in one day? I think God gave you those gifts today just to show you how excited He is to have Ben home with Him in heaven!"
He smiled, his eyes sparkled, and said, "Yes! I think you're right!"
I can't say that we enjoyed finalizing the details of the next few days' burial plans. No one should have to do that for their young son. But it was not nearly as painful as you'd expect it to be. Choosing a casket, flowers, and an itinerary isn't as difficult when you know it's just a formality. An opportunity for everyone who was touched by Ben to say our last goodbyes. An official end to the tragedy we've been grieving over the past three and a half months. But Ben himself won't be in that casket. It's just his old body. An empty shell. The real Ben is jumping around the gates of heaven, standing on his head, and bringing countless animals to Jesus' feet. What a comfort it is to walk this road having those guarantees. It doesn't erase the pain, but it certainly makes it easier to carry.
You see, heaven makes all the difference. Because God conquered death, He paved the way for us to be with Him forever. In eternity. Because we serve a Living God who loves us even more than we can imagine, we can have confidence in His ability to care for our loved ones after they take their last breath. Because of heaven, I know that I will be reunited with my Benjamin again someday. And so will Jack. And the rest of us that love Jesus.
I'm really going to miss this little boy. He was a gift. But I echo the words as my younger sister Marissa wrote on her blog tonight:
We might have lost him; but he’s not lost.
God has him.
God has us.
He’s just holding us on different ends of eternity."
See you on the other side, Buddy. Our lives are better because you were born. You accomplished more ministry in your 1,833 days of life than most people do with ten times that amount of time on earth. May you enjoy the jeweled crown you so appropriately deserved. Be sure to find the best spots to find frogs so you can fill in your brother when he joins you someday.
Everyone is welcome to join us for a service to celebrate Ben's life at The Chapel at 500 Crosspoint Parkway in Getzville, NY on Saturday, May 17th, at 11am. Thank you so much for your prayers and support.