Let it Be.

I am tired.

Please understand, by “tired,” I mean more than “bone tired;” I am whole body, mind, and soul tired. Exhausted beyond what is comprehensible to someone on the outside. The last three days have been ruthless. While M‘s body is recovering and being good to him, mine is sprinting downhill. Waking up Saturday, I found myself in a fog of despair; inexplicable depression in overdrive. I cried most of the morning. This, in turn, made me feel worse because M was having to console me for sadness that came from I don’t know where. I’m supposed to be caring for him. I did not want to bring his mood down. To his credit, he did not seem to be distorted by my issues. He’s seen me like this before. My eyes burned for the rest of the day…likely from the combination of tears and exhaustion.

Sunday wasn’t much better. I clomped around in a major funk for most of the day. It felt more like my insides were at war with themselves. Emotions, logic, desires all battling for what I should be doing and how I should be acting. Should I have to compose myself to a socially acceptable level? Am I allowed to be slouchy, make-up-less, and grouchy? Should I still expect people to want to do me favors? Is it OK for me to not be able to pinpoint why I feel the way I feel? Can I go outside and just scream at the top of my lungs? Would I even have the energy to do that? I just knew I was going crazy. My thoughts spun and my desire to be out of this place left me with the urge to curl into a blanket and sleep away the long hours. Is that how someone feels before he loses his mind? A complete and utter loss of control?

Now, today…I have slept the day away. My body’s heaviness has kept me from doing much of anything. I’m sure this is all compounded because of my yet-to-be-diagnosed thyroid issue, but that doesn’t help me feel better right now. With the exceptions of going just up the road to get a Subway sandwich and reading a bit of Bird by Bird by Anne Lamott, I have literally napped all day. After Dr. Hutchins and the crew came in this morning and told us we wouldn’t be going home until tomorrow, everything in me sank. I realize it’s just one more day…but those hours are so very precious.

The report the crew gave us was actually good: his platelets are up and not needing a transfusion of any kind over the last few days is huge. His other counts are rising well. He looks good and he feels well. This in itself is stupendous.

So why am I still like this? I think my problem now is the same as it always is; I am a planner. I’m trying to wrap my mind around what is to come when I know darn well that I can’t. There’s no way for us to know what’s coming. We think the worst and longest part of this little ride is behind us, but that doesn’t mean that what’s ahead is going to be easy. It’s as if we are trying to catch our breaths in the lull as our little cart ascends another hill. While slower for the moment, the ride moves on. We can’t see what comes after we crest, we just know it’s going to be a rush. And we have no other choice but to let it be.

So tomorrow, after another month of hospital time, we make the trek home. Clothes will be washed, real food will be eaten, sleep will be had, and, hopefully, a few hugs will be exchanged. Perhaps we will get a full 24 hours on CR 620. Then, on Wednesday, rather than attending an Independence cookout, we fly to St. Louis to sleep in another hotel room. Thursday brings a bright and early transplant consultation. Maybe, we will get to come home Thursday too…maybe they will give us good news. Maybe there will be a hundred possible donors. Maybe we will get to spend a week or two at home. Maybe.

While you are eating your burgers and lighting your sparklers to celebrate independence, have an extra for us. We will be free to celebrate with you again soon. I will be writing happier tales…soon.



3 thoughts on “Let it Be.

  1. Oh, my sweet Samantha. How I wish I could be with you this very moment and hold you and give you the hugs we both so long to receive. I wish too that I could pick you up and carry you (with Mitchell) along this road that you are traveling. But, this is your road. We only stand alongside and cheer you on. Sometimes the cheering is exhuberant. But mostly the cheering is made of whispered prayers. Prayers lifted to our Creator and Healer. HE is holding you both as you ride your cart to the next hill. HE knows what is just around the bend. HE knows the plans HE has for you. HE has written the ending. HE knows your limitations and stretches you past them to depend on HIM. HE will give you rest. HE loves you. HE has given each of us on the sideroad a glimpse of HIS glory by watching your steps. So, continue on your journey. We will always be watching – and cheering – and praying. Loving you (plural)!


  2. Sam… you don’t know me directly, but I have been keeping up with you and M through my sister, Kathi Reed. Kathi shared this with me, and after I read your thoughts, I understand. When our mom was battling cancer, I felt like I just had to be “up” all the time so I wouldn’t be responsible for bringing her down to where I thought I was. I slept at the hospital and when Mom twitched a sheet, I knew about it. When she came home, I slept across the hall, and when Mom twitched a sheet, I knew about it then too. I quickly became a real mess… so much so that my mom’s doctor walked me over to the clinic where she and my doctor practiced and the two of them sat down with me just to talk for a few minutes. Those few minutes, and a prescription or two, have changed my entire attitude toward being there for the people I love. My doctor reminded me that none of our lives are guaranteed. Her words sounded harsh until I thought about them. She told me, “Your mom’s going to die. Then again, so am I, and so are you. None of us, even the doctors in the bunch, hold the power of knowing when our time to die actually is.” That was her first revelation. Her second was to “Let your mom be your mom until she just can’t be any longer. She needs to be needed too, and changing the dynamics of your relationship only points out how sick you think she is. She’ll focus on that rather than on being your mom, and that won’t help anything.” I know if you feel by M what I feel by my husband, I married him for all those things you say in the vows you take. “For better, for worse. For richer, for poorer. In sickness and in health… until death do us part.” I tell my husband that even death is going to have a hard time separating us, and I mean it every time I say it. You two share something that no other two people in this world have ever shared, and he needs to be there for you as much as he needs you there for him. That’s the good part. 🙂

    When I was in the midst of Mom’s “Great Battle”, I could not go to sleep even when I would lie down and try to close my eyes. My mind would race and race for hours. I tried making lists (because that’s what I normally do). I tried the half a peanut butter sandwich and milk theory. I tried forcing myself to stay awake, hoping reverse psychology would kick in. Nothing was successful. Finally, I went back to my dear, sweet doctor and she gave me a prescription for Klonopin. It is normally prescribed for patients with seizures, however she also told me that low doses could help my mind slow down enough for my body to fall asleep and rest. The results were dramatic. Unlike a sleeping pill, I never became dependent on them, and I would wake up the next morning feeling rested and able to think more clearly. The sad part of the people we love fighting for their life is that in trying to help them fight, we forget that we need/deserve/sometimes have to have a little time to decompress our own thoughts, emotions, physical state, and over all well being.

    I’m here to reaffirm that you DO deserve to have people do favors for you. Let them. They want to help or they wouldn’t offer. Some people just don’t know what you might need the most. If you know someone who has a movie collection, ask them to pick out a couple they think you might like and let you borrow them so when M feels up to it, you two can cuddle on the sofa and be as normal as possible. If you need to get out for a little while and M is under the weather, ask someone to come and visit while you run to the store, or even just go take a long hot bath/shower and be kind to your skin after you get out of the tub. It’s more than ok to hang up your Wonder Woman/Super Wife cape every so often and let people be good to you. Mom’s been gone for 9 years, and I still have a hard time letting people do things for me, but when I do, I enjoy them to the fullest.

    I’m sorry I’m rambling like my fingers have a mind all their own, but I see two beautiful people sharing their lives, and pray that for however long that time may be, you can enjoy each other and be content every day that no matter what happened, you loved each other fully and completely. When you reach your 50th anniversary together, I want an invitation to the party. 🙂


  3. Sam,

    Please understand that, I have been where you are. Not with my husband but with my dad. I know the emotions are probably different but the depression, the lack of control, the envy that others are going on with their lives as though all is right in the world. I remember the feelings tremendously. I don’t have words except that if you need a favor, a hug, someone to just listen know that I am here for you and have gone the route of bone marrow transplants and chemotherapy with one that I dearly love.


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