The Eleventh Hour

None of us truly know how much time we have left. None of us are promised tomorrow. But from the look of things, I'm not sure how many more tomorrows God has in store for Ben. From what we can tell, this is Ben's eleventh hour.

 

This past weekend brought a sharp turn for Ben. A bad one. His speech has been increasingly mumbled so we can barely understand what he says at all. When we do understand what he says, it's usually him asking for more medicine. The other day, he asked why his head is still hurting if he's taking all of his medicine.

 

He's been sleeping on/off for much of the day and then has kept Andy up for the past two nights as he wakes up every ten minutes to request he change positions, scratch an itch, or to hold the urinal so he can pee. Except when he does hold the urinal, nothing comes out. We bought adult diapers the other day and were grateful to have them for when his bladder did decide just to empty itself. He is not as anxious, but his eating has decreased dramatically. Yesterday, he only ate a few bites of a pancake. Today, he is taking in limited liquids. His tongue is dry, mostly patchy white with flush (from the steroids) and his lips have lost a lot of color. All of his skin - his face, his arms, his hands - look lighter. They lack that healthy glow. His eyes are closed more often than open and are acquiring a crust to the sides. When he does look at you, he looks cross-eyed, as if his vision is blurry. His chest is still relatively clear, although it sounds like TV static when he breathes. Many times, he'll wake up coughing or to take a huge breath, as if he had been without air for a few seconds.

 

And the majority of these changes have happened in just over thirty-six hours.

 

The Hospice nurse and oncologist just left a few minutes ago. They inserted a catheter to help keep his bladder empty and discussed plans to take Ben's hospital bed upstairs to our room. We are hoping he will be more comfortable with things more quiet and peaceful. Plus, it will shield some of the painful end-of-life images from Jack and Megan, who, up to this point, have been remarkably at peace with this transition.

 

When Andy lifted his limp body so the nurse could change his bedding, I saw the back of Ben's head for the first time in a while. There was a huge growth at the back left, where his tumor is. The size of a pear. So that's why he's been complaining of his head hurting. The tumor has literally been expanding and pushing against his skull. I can't even imagine what his tumor looks like on the inside and what it is doing to his organs.

 

We are thankful for the skin's elasticity, the fact that the wounds from his surgery have healed well, and that the neurologist used titanium plates to secure the skull together so no one is worried about it actually pushing through. But it was scary to see. The oncologist reiterated her opinion that the cancer has spread to his spine because of his increased discomfort (which has, recently, been better managed with narcotics.) He also has a huge painful bulge on his right hand, which she said was characteristic of Ben's drastic neurological changes.

 

Mother's Day, as you can imagine, was highly emotional. For all of us. I'm not entirely sure I'll be able to fully enjoy another one in the future. Not without all of my kids. Our family already understood we wouldn't be joining them for any celebrations, including my niece's dedication. I called my mom in the afternoon to take the other kids so they could hang out with their cousins. As helpful as it was for them to be out of the house, it made me so sad to be without them on Mother's Day. I took a shower when they left and sobbed uncontrollably.

 

Oh, dear Lord, please tell me this isn't really happening. I am definitely not strong enough for this. How can I watch my son die? Please, please, pleeeeeeeease!

 

Andy and I have mastered those silent, knowing looks from across the room. We use them to check in with each other when we have to be quiet. With one look, we ask, "Are you doing okay?" and then answer, "I'm alright. You?" Though we really know how the other is feeling. It's as if we are trying to be strong for the other. The strong hand that he places on my shoulder when I'm crying to myself has the same effect. I can feel from the vibrations of his arm that he is crying, too.

 

I felt like I was at my lowest point yesterday afternoon. I was gently scratching Ben's back when the kids were with my mom - making the house feel eerily quiet - and Andy was taking a much-deserved shower. As I thought about my little boy, the possibility of him being absent from our family, I knew that I would have to be strong. For Andy. For our kids. For our unborn baby. We will find our joy again. Someday. We will be comforted knowing that Ben will be in heaven, being comforted by our loving Heavenly Father. The God who knit him together in my womb. We will hurt for a while. But we will find our joy again.

 

As I could hear the shower water running, I could also hear something else. Took me a minute to identify it: it was Andy. And he was crying in the shower upstairs. Sobbing. Loud. My helpmate, who has cried with me nearly every day after learning Ben's diagnosis. My strong, loving, and passionate husband. I had never seen him cry until the day the ER doctor took us into that small room to deliver the news of a tumor. As much as we are doing this together, we have found that some of our biggest crying sessions happen separately. We all grieve differently, though experiencing the same grief. I don't know a woman in the world that could have held it together after hearing the sobs of her son's father. A dad who's losing his five-year-old to a horrible and debilitating cancer.

 

Lowest part of my day.

 

It's very difficult to celebrate God's goodness in giving you two healthy kids (and one on the way) when you grieve the seemingly inevitable loss of another. It's a constant conflict in my heart. One moment, I am grateful. To have been given the opportunity to parent some of the most beautiful and sweetest children I've ever seen. In the next moment, I am overcome with sadness at the thought of not being able to see one of them off to kindergarten.

 

I cried as I updated my mom friends at preschool this morning. Jack saw me in tears and asked, "Mom, are those sad tears or happy tears?" I smiled. Oh, how I love this boy.

 

"Sad tears, buddy." When we were in the car, I asked, "Jack, remember when I was crying sad tears before?" I was ready to begin another discussion about Ben. To tell him that I was sad Ben couldn't join us that morning, though we both knew he would have wanted to be there. And then see where he wanted to take it.

 

Jack answered with, "Yep, I remember." Then he looked down at his fingers folded and said, "Mom, look. I can do a trick with my hands!"

 

Okay, so I guess he's not that concerned right now.

 

Our goal now is to keep Ben comfortable. Be as normal as possible with our other two, taking advantage of the daily play dates at my parent's house, while letting them see what is going on. We will not shield them from everything, but invite them to join us as they show interest. Jack has been to four funerals in his five years on earth. And we've been fortunate that every single one was guaranteed heaven. We've always felt it was important for our kids to see the other side of death and not be afraid. To see a dead body in the casket, the body they wouldn't need anymore, and be able to celebrate the fact that they had received a new one on their entrance to heaven.

 

We could have never guessed that these would be valuable experiences to have for our children in losing a sibling.

 

The oncologist said we're looking at just a few days now.

 

Days.

 

But even the oncologist was surprised to admit she had been wrong in diagnosing Ben's original "2-3 weeks." That was February 14th and it's almost three months later. No one could have anticipated the power of prayer much less how strong our little fighter is. He got to learn of his new baby sister's existence and to celebrate his fifth birthday, all while relatively strong. His name doesn't' mean "mighty" for nothing, you know.

 

Ben is not very responsive. He mumbles a request and then falls asleep before we have an opportunity to deliver. We bring a straw to his lips and he doesn't drink. I feel like he's wavering in that space between sleep and consciousness. Any exhausted mother knows that place. That tired place where you're reading to your children at bedtime and you find yourself drifting off into a deep sleep. Your words are a mix of the written words on the page and those streaming from your subconscious. That's where I feel like Ben is right now. He doesn't seem really uncomfortable. The narcotics are keeping him quite comfy these days.

Ben asked me to hold his hand this morning. This was the best I could do.

 

Lord, comfort your beautiful son in these next few days. Give him peace. And alleviate his pain. Show him the way into heaven and promise me, You'll be the first to greet him. Wipe away his tears and let him know we won't be that far behind him. Tell him to look out for his big brother and baby sisters while they navigate this life. Perhaps you can introduce him to his sibling we lost in-utero more than two years ago. I'm sure his relatives that are there waiting won't have a problem recognizing him for themselves. He's going to love all of the animals - frogs and snakes are his favorite - and he's going to be thrilled to have his own wings. I'm sure he'd love playing with David's slingshot, too!

And God, grant us peace, as well. Those who are left behind. As we come to grips with our new future without Ben being close. As we find the grace you've given us and discover joy in the knowledge that You're carrying all of us in the palm of Your hand.

 

We are scared. We are hurt. We are sad. But we trust You. For You are Good.

 

Amen.