I apologize ahead of time for not having anything super encouraging to say. I'm just too exhausted.
Many people have asked how Ben is doing.
Ben is anxious. Really anxious. He won't let us out of his sight for more than eight seconds at a time. Especially Andy, who he has been holding hostage. Literally.
Andy is like a caged animal. It makes him crazy to be confined to a tiny space for hours at a time, especially when there is so much going on. Normally, Andy will spend more than two hours a day on the phone. It's just the nature of his job. Even though he has cut back work by 99%, there are still matters that require his attention from time to time. But Ben requires his full attention at all times. Even if he senses that Andy has left the room much less the house, he goes ballistic. If he sent him into the kitchen to get him some water and he can hear that Daddy has made a quick phone call during his focused errand, he goes crazy. There's no reasoning with him, either. It doesn't even matter that I'm still in the living room with him. He wants Dad. Now.
This, as you can imagine, is completely exhausting. For both of us. When Andy is confined to the couch with Ben, many times, he'll need me to run Ben's errands around the house. When Ben does allow me to sit with him for a few minutes at a time, Andy is the designated runner. There is literally no down-time for either of us.
Megan seems completely unphased by this whole thing. She's just so carefree and happy, playing by herself and wanting to spend hours of everyday outside catching worms. It's wearing on Jack, though. He wants to play hide-n-seek with Andy, wrestle, and to have him play in the backyard. Except he can't. Because Ben needs him. He's had many meltdowns about not being able to play with Daddy where I wanted to cry right along with him. Jack has always gravitated toward Andy, Ben toward me. So even though Ben has switched his sights to his dad, that doesn't meant that Jack switched his to mine. Andy does try and make the most of time during dinner and then movie night to talk with and play with Jack; that helps a great deal. But that's only allowed as long as they stay quiet enough not to bother Ben. I'm not worried about Jack in the long-term. He seems surprisingly aware of the situation and yet, not scared in the least. He has already proven to be a very resilient kid. I know he will be just fine. But I do feel bad for him as he navigates through these unchartered waters along with us.
Andy and I have sought comfort in the fact that Ben has still slept through the night, other than the occasional call for a bathroom break, giving us a few hours in the evening to catch up with each other, relax and get some rest... that is, up until three nights ago. That's when Ben started needing Andy's constant attention throughout the evening hours, too. Adjusting his legs, giving him another blanket, taking off his blanket, getting him some water, going to the bathroom. Every few minutes, there's a new request. And it makes for some very difficult worse-than-a-newborn kinda sleep.
Tonight, Ben called us up just an hour after we had put them down. We had been trying to clean the house and wrap presents for their birthday tomorrow, an event that both boys are extremely excited about. He wanted us to lay with him. Sleep next to him. All night. I thought Andy was going to burst into tears. He has dedicated every waking moment of every day to this little boy for the past few weeks and didn't think he could physically and emotionally handle the idea of 100% of his evenings going there, too.
I laid next to Ben and just cried.
That's a new skill I've acquired over the past few months: silent crying. I can sob and sob without waking up or even having someone next to me not even know that I am completely soaking through every piece of tissue I can find. The words from Mark Schultz's song, "He's My Son" kept playing in my mind, making me sob even harder.
He doesn't want to be alone. He can't do a thing by himself. We can barely understand what he's saying. He's scared. He's uncomfortable. It made me feel so incredibly sad, to think about my once self-sufficient four-year-old now having to rely us for everything. "I just don't want to have any regrets," I kept thinking. "Whatever happens, I don't want to have any regrets."
So when Ben requested that he sleep in our bed, Andy carried a limp Benjamin into our ever-shrinking king size bed, and I'm sitting next to him on my laptop. I'm actually surprised that he isn't bothered by my typing. And that he was okay with Andy finishing up a few phone calls downstairs before coming to bed.
I am not afraid of Ben going to heaven someday. In fact, it's just about the only real piece of comfort I have right now. I'm afraid of the road we have to walk until it's time.
Ben is awake for about eight hours a day. And for much of that, he's anxious about the next time he can go to sleep. It's hard to tell if his slurred speech and confused words are from the tumor or the fact that he is just so tired. It is such a difficult way to live, walking on egg shells so you don't unnecessarily agitate him or see that his siblings stay calm when they're around. Being confined to your own home as you just watch the rest of the world go on with life. Your old life.
I honestly don't mean to complain. I know there are so many people that have been asked to walk an even more difficult road, a much longer one. I really do try and stay positive (which is the biggest reason I haven't wanted to give an update on Ben.) Every single day, Andy and I talk about the things that God has done to bless us, even in the midst of such a challenging time. And we always have at least a few things to be grateful for. But this is just where we are right now.
My 90-year-old great-aunt died two days ago and I can't even be at her funeral. I haven't been to Bible study in months, play dates are too stressful for Ben to miss his siblings, and we need to limit the number of people (especially strangers) that come into our house. Birthday parties, celebrations and going to church are just out of the question. He can't sit up much less be in a car seat to drive anywhere, even if he wanted to. I miss our old life, our old routine. And so we sit. And care for. And cater to. And pray. And try and maintain some level of normalcy for our other two kids.
It is just so exhausting.
My goal for today is not to live with any regrets. No matter what happens, I want to feel confident that I did the best I could for my son and for my family. And for now, that means letting him sleep in our bed. Trying to be there for Andy when he's the only one Ben wants to help. And not getting too frustrated with Ben for what he has no control over.
In other words, I will keep on keeping on.
Even when it feels like we're living in a sort of Groundhog Day movie, replaying each day over and over again, I will keep on. Putting one step in front of the other. Trying to extend grace to Ben when he needs it. And keeping my eyes forward.
Tomorrow is the boys' fifth birthday. On 5/5. Their 'golden birthday.' A day we didn't even think Ben would be able to celebrate on this side of heaven. There two presents waiting for them downstairs that they're looking to open when it's daylight. I will take Jack to preschool to enjoy his birthday snack with his peers and then we will have just our immediate families over for a quick dinner and cake.
And I will go to sleep trying to remind myself of the fact that God has gone before us and He goes with us. God knew we would have to walk this road. And He promised we wouldn't do it alone. We just have to keep walking.