Many of you have asked about Ben. How he's feeling, how the headaches have been.
Ben is good. Tired. Very tired. He usually takes about 1-2 naps a day and he still sleeps about ten hours a night, with one quick wakeup for medicine. When he is awake, he is laying on the couch. Or sitting. He has a few minutes each day - usually in spurts - where he has energy to walk around. Yesterday, he played outside for about fifteen minutes. (If Ben heard me say that, he would have corrected me to say that he WORKED outside. "We don't play, Mom," he tells me. "We work.") Today, he asked to wrestle with Dad. I'm glad I grabbed my camera to snap a few photos because it literally lasted about twelve seconds before he returned to the couch in exhaustion.
As you can imagine, this is a drastic change from our old norm.
I overheard Jack ask his brother this afternoon if he wanted to play a game. "No, Jack, I'm too tired," Ben answered. Jack bent over with his hands on his knees so he was eye-level with his brother, laying on the couch. "But Ben, this is a walking game," he whispered. The sweet invitation still wasn't enough to entice Ben off the couch.
Ben also doesn't like being alone in a room. Andy or I have to be with him at all times. Today, Andy slipped out from next to a sleeping Ben in order to go to the bathroom. I heard Ben call, "Dad! You said you wouldn't leave!" You can tell he feels anxious about something, even though he's not entirely sure what.
The headaches, though, have been virtually nonexistent. We found a better schedule of steroid medication which has seemed to keep him comfortable and headache-free. And for that, we are very grateful.
But perhaps the most emotional change for this mommy I noticed beginning last night. As I was stroking their hair and singing songs, I felt several strands of his hair fall into my hand. I was caught completely off guard. I continued very gently and after I said a prayer and walked downstairs, I showed Andy the strands of hair. We just held each other and sobbed and sobbed.
I had known this was a side effect of the radiation and chemotherapy. Localized hair loss, around the area of the tumor. We had expected it after week 2/3 of treatment. But I put this possibility out of my head once the treatments stopped. He only had one week of treatments. Why would I have given it a second thought?
Even now, as I look down at my fleece jacket, it's covered in hair. Brown mossy hair. It looks as though we live with a long-haired dog who sheds. Except we don't. It's from our son.
My mom is a licensed hairdresser and growing up, people came into our home all the time, giving their requests as she graciously worked her magic. She still does. I'm thirty-two years old and have not once paid to have my hair done. She cut all of our hair until I asked her to teach me to do it myself so I wouldn't have to bother her for those small in-between cuts for my kids. The only spankings I remember receiving as a kid are the ones I got after playing hairdresser with my little sister, but with real scissors! So perhaps I do get a little more emotional about hair than the average person.
But perhaps the larger reason is because this is the first visible sign that something is different. I mean, other than the chubby face and excessive tiredness, Ben still shows no physical signs of having an aggressive brain tumor. Seeing a partial bald spot leads you to believe that this is real. This is happening.
And I am so so scared.
I trimmed each of the boys' hair before bathtime to try and thin out the layers he still has and make the hair loss less noticeable. And I'm just hoping that past experience continues: those boys can grow hair super fast.
Andy and I have been determined to remind ourselves of two Big Truths each day. The first is that our kids do not belong to us. They are simply on loan until God calls them home. And then second is that God has always given us more than we deserve. As a Christian, we acknowledge the fact that we are sinners, saved my grace. If it weren't for the sacrifice God made in sending his only and perfect son to die, we would have been doomed to hell. God created a way for us to live. To prosper. To have Hope.
I am a sinner. I do my best to follow God's Word. To live my life in a way that would please Him. But I don't deserve anything good that happens to me. It's only because of God's grace. His wonderful grace, that He extended to me simply because I asked.
Instead of wondering why God allowed this tragedy to happen to us, we wonder what other unspeakable things God saved us from in the past without us even knowing? Despite what our culture tells us, God owes us nothing. Despite what our generation dictates, we are not entitled to the best. The big house, the money, the prestigious job right out of college. We are not owed anything.
These are the Truths we hold onto. And need to remind ourselves of every single day. Because even though we believe them 100%, it is very easy to get sidetracked.
As we continue to take one day at a time, we have been spending a lot of time in front of the Wii and the boys' new iPad minis (thanks, Make-A-Wish donors!) Lots of videos and lots of snuggling. And rather than wishing each day away, we are soaking up every moment we can, grateful for the gift of life, for every day God allows us to have it.