I don’t know what to say…I just know I’m supposed to be here writing. Two different conversations and a package with a letter hand delivered to my porch this morning have confirmed as much. Honestly, I’ve been avoiding the blog. Yes, Phoebe is at home and life is busier in a different kind of way than when we were living in the hospital, but really, life just kinda hurts right now, and coming here to write usually entails soul searching and tears and hashing through emotions and that’s not my favorite thing to do in a public forum. Letting your soul hang out is a dangerous thing, and it can attract a lot of unsolicited advice, but if I’m supposed to write I don’t want to be silent.
I guess lately I’ve just thought my messy feelings aren’t worth much screen value. How could they edify anyone or be encouraging? How could it be beneficial to anyone for me to come here and process out loud when I can’t even seem to pinpoint how I feel? I don’t know, but then I’m always surprised to meet people who are praying for Phoebe or following our family’s story here. When I type it all out, I see maybe 10 or 15 people in my mind’s eye who might be reading. When I receive a letter of encouragement like I did this morning from a complete stranger, it reminds me that God has used this painful season for good and that for me to be silent is prideful and short-sighted.
So, I’m pushing back the shroud, peeking around the curtain to see if it’s safe to come out. Nope. It’s not safe, but then “safe” is overrated and self protection doesn’t allow God the freedom to use me for His glory. To be insulated from pain is nice, but it’s not honest and I can only hide for so long.
It has brought us to our knees and left us running ragged. My Benjamin has a “sadness” he can not explain. My Averic says “something is missing…life just feels like something is missing.” My Deacon has emotional pendulum swings and separation anxiety from Mom. My husband is weary from long nights with Phoebe.
I can see the aftermath of last night’s “sleep” when I walk into her room. There are 5 small bowls of different kinds of food and a stale waffle on the bedside table. Nathan was up all night, trying to help her find “just the rigth thing” that didn’t taste metalic from the chemo. Finally she fell asleep, only to accidentally pull out her tube and have to have it re-inserted. At 5 am she was ready for the day. This is typical.
The daytime continues much like the night. She is emotional, demanding, asks for 4 or 5 different foods before she either gives up or finds something she will eat. We prepare food constantly. She wants in her high chair. She wants out of her high chair, she changes her mind every five minutes. She wants to be on the floor. She wants to sit with Grandad. She wants to sit with Mom. She wants to leave. She wants to stay. She cries. And in between all that, she is happy as a lark.
And therapies. Four times a week we must be here for therapies. And clinic on Tuesdays and trips to the lab most every other day to check blood sodium levels.
For 10 years we have pursued Mexico and a life of ministry there. “Practice summers” in Reynosa, 9 months of language school, 3 years in the interior with YWAM Guadalajara. An internship in 3rd world agriculture and a dream of pioneering a training farm back in Mexico.
And then the paleness, the lethargy, the random vomiting. The red-herring “intestinal parasite” as the tumor expanded each day…and then the diagnosis.
And what now? What about Mexico God? Did we miss it somehow? Did we misunderstand? Who are we now? Where do we go? Do we make a life in Dallas? How? We need to be close to the hospital for now, but just”doing cancer” feels like waiting for the ax to fall. We are ready to move forward, but how? And when? Where? Phoebe will need endocrinology care for the rest of her life. She will need MRI’s and hormones and DDAVP shots and pills. And that doesn’t fit with a farming life in rural Mexico.
Tethered. Immobilized. Trapped. And no certainty of the kind of life that awaits us.
These are the very real things that I struggle with each day. My life experience and my heart tell me that God is in control. That this did not take Him by surprise. That He has a plan.
But my emotions are in a tail-spin. And I am powerless to “fix” Phoebe and powerless to insulate my boys from the pain, and powerless over our future. So much hangs in the balance. So much is unknown.
So, this is the real stuff of cancer. Some days I feel full of hope and I know that Phoebe will beat AT/RT and life will be okay. Other days I merely survive because all feels hopeless.
I’m clinging to the hem of His garment….the only place it feels okay to be tethered.
Phoebe watches the boys jump on the trampoline
Deacon and Phoebe painting
Phoebe goes to clinic