Midnight Ramblings

A part of me misses going to all of Matt’s doctor’s appointments and the chemotherapy infusions. Because at least then we were doing something, fighting against this thing. Even if our efforts were futile, even if the chances were high that the tumor would grow back, at least we were doing SOMETHING. Instead of just this...waiting.

As hard as it was to move him around, I miss when we got Matt up out of bed and out more, even when he couldn’t walk. I miss making his meals and doing all of the supplements. Because at least then I felt like, okay, maybe there is no cure, but we can at least try to slow things down. Now we’re just doing nothing but waiting....waiting for this ugly beast to take over his brain ....and watching him slowly fade away. It’s awful.

My husband was so outgoing and expressive and full of life, and now he’s just a shell of the man he used to be. He was so big and strong, and now he is pretty much just skin and bones because he  barely eats. It pains me to see this happening to him...but I can’t imagine how it must feel for him, not being able to talk or move or eat. Because even though he is wasting away physically, he is still alert and knows what’s going on.

I just hate not knowing what he’s thinking. It’s so hard not being able to talk to the one person I have always shared everything with. And now I am going through the hardest thing in my life and I can’t talk about it with him. I mean, yes, I still talk to him, but it’s not the same when he can’t talk back and share his heart with me. When you love someone, you want to know what they are thinking and feeling, too. I do ask him if he feels okay and still trusts God and knows that He’s got it all worked out, and he’ll nod or whisper yes. So that makes me feel somewhat better. I just want him to be at peace and not be scared or worried....

So these days he’s pretty much been in bed most of the time, because getting him out just seems to wear him out most days, although we have gotten him out for a walk a few times in the last few weeks. I just think it has to be good to get some fresh air and get out of that room every now and then He has good days and bad days. By good days, I mean he’s a little more awake and responsive, and maybe eats a bit more. He doesn’t talk now, but some days he can at least whisper things, even if it’s just a yes or a no. Some days we get a few smiles, while other days it’s just a blank expression all day.  Some days he’s awake pretty much all throughout the day, and other days he sleeps much of the day.

It’s just so random, you never know what to expect. Like one morning about a week ago, he just started talking to me out of the blue, and I figured out he was saying to me,  “I love you.” I don’t hear that much anymore, so that just made me giddy with happiness! But then it was back to nothing the next day. Then yesterday morning he was talking (well, trying to) and being very expressive with his facial expressions, and he even smiled with the LEFT side of his mouth, which I haven’t seen in MONTHS! But the next day it was back to the sleeping on and off and not responding much to questions.  I’ve just learned to go with the flow and cherish those moments when I get a smile, or a laugh, or a whispered, “I love you.”

Sometimes I still can’t believe this is really happening to me. I wish I could just wake up and  have it be June 26, 2017 and find out that this last year has all just been a bad dream...But this is my life, and this is where I’m meant to be. This is part of God’s plan and story for my life, so all I can do is accept it and trust Him through it. Yes, it’s not what I would choose, but who am I to question the God of the universe?  I know that He can and will do something amazing in and through this. I know that there is always something to learn in these trials. Pain and suffering are a part of life, but with Jesus, there is purpose in the pain, and there is His presence and His grace and His strength to carry us through. Without that, I would have no hope.

“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.”

I already feel like I'm grieving, grieving the life we used to have, the life we won't have, the man he used to be...while at the same time being thankful for still having him by my side right now. And I know that soon I’ll be going through a second phase of grieving-the loss of him and his presence and the life that I have now, as his caretaker. At least right now I have purpose in taking care of him. At least now I can still talk to him and make him smile.  At least now I can wake up and see his face and wrap my arm around him. But one day even that will be gone and life as I know it will be forever changed.