Thank you for taking time to follow Meaghan's journey of healing as she battles Medulloblastoma, a form of brain cancer.

Meaghan, our five year old daughter, was diagnosed early November 2009 after an MRI revealed she had a 4 cm solid tumor in her cerebellum. The tumor resection, while successful, resulted in serious complications.

Cancer is a family affair and here I try to chronicle not only Meg's journey, but our whole family's as well.

Friday, June 18, 2010

"Trust In God"

"Trust In God" or "Trust in the Lord." You can find these statements in many places. What do they mean? Trust in God that nothing bad will happen? That if bad stuff happens, He'll be there to see you through it? If He let the bad stuff happen, how is He "seeing" us through it?

Trust in God for what exactly? What am I trusting God to do? The phrase itself exposes the limitations of the human intellect. It's as if we need to reassure one another through this most inadequate phrasing that God is in control. If one chooses to believe in God, the Father Almighty, and comprehends the meaning of the word Adonai, then "trusting" becomes moot.

Yet because of my human limitations, and now that I am truly challenged in my relationship with the Lord, I do call into question how I "trust" Him. What exactly is the nature of our relationship? If I trust he is in control, then why does he let these horrible things like diseases afflict little children? Sin. Yeah, yeah, I know. Big, fat flippin' consolation when it's your child afflicted! If I really spend lots of time believing that God is I AM, I don't know that I like Him very much right now. And before everyone gets there catechism all in a bunch, I am allowed to dislike God. He is immutable, therefore a testy mom from Detroit cannot diminish Him.

The best answer I can come up with is perhaps we need to remind ourselves to trust Him as a means to reinforce our faith. Bad stuff will happen to you, to me, our families. So what do we do with our faith, with our relationships when things go south? Reinforce our faith through prayer, time in the Word, communion with fellow believers. So much easier said than done. When you are raised to view God as your Heavenly Father, catastrophe turns your perspective of Him on it's ear. Why would my Father allow harm to come to my child? Does He allow difficulties and tragedies in our lives to refine us, bring us closer to Him? I don't know about you, but couldn't He have just had my dog run over by a car? That would have been sufficiently attention grabbing.

So, here I am at 2:00 a.m., unable to sleep, listening to my daughter stir restlessly. I have this white hot glowing orb of anger lodged in my gut that won't dissipate, my family is at the point of fracture and I have a choice, but not really. You see, despite all my rants, I still believe in God and my salvation through our Savior, Jesus Christ. Perhaps, I'm just not ready to let go of Meaghan. To really let her go into her Heavenly Father's hands. As her mom, I think I can care for her best, but as a mom I focus on her temporal care.

I guess I'm just not ready to let go, but I know once I do I will be awash in peace. It's okay if I'm not ready yet. When I am, I know He'll be there.

Tuesday, June 8, 2010

Some Tough Questions

The other week Madison and I took a walk. She unloaded all the ugly feelings she'd been hoarding over the last few weeks. As we walked along I listened patiently to the litany of grievances she had against me: too busy with Meg; on the phone with doctors too much; too tired to do fun things, etc. As we sit down at the picnic table in the backyard, she asks, "How long will Meg be disabled?" I say, "Well, to some extent, her whole life."

"What! You never told me that!" So untrue. The next few minutes are spent revisiting the finer points of physical and mental rehabilitation: we don't know how the late effects of radiation will impact her, only that they will. We don't know how far she'll progress with physical, occupational and speech therapies. In my heart, I know she will always carry disabilities, both mental and physical. But my next exchange with Madison cuts me:

Maddy: "Mom, will Meg have to go to a special high school?"
Me: "I don't know, Maddy. Maybe."
Maddy: "Mom, who will want to be Meaghan's boyfriend? Who will want to marry her?"

And that's really the crux of it, isn't it? Who will want, love and care for Meaghan as an adult? Will she need care as an adult? Will she be self-sufficient? The past few weeks, as my Maddy and Ethan lament my lack of availability, as I wade through the near constant clutter and laundry of our household, I question the value of my efforts. Is it worth short-changing the rest of the household to pursue therapies and treatments and services for Meg?

Of course it is worth it! End of story. Right? Not so fast. We must incorporate Meg’s needs as an inclusive family effort. That’s a pretty tall order. How have I measured up? You’d have to ask my fiercest critics: Madison and Ethan. It is easier to rage against Mommy, a tangible constant, rather than rage against a nebulous enemy that lurks in your brain.

We have figured out that before scheduled an inpatient stay we do something fun together as a family, like see a movie. We have lots planned for the summer: a quiet trip to a friend’s cottage; lots of physical and occupational therapy; lots and lots of swimming; maybe even a return to Great Wolf Lodge. Now all’s we need is for Meg’s counts to cooperate. We want this summer to be about family and not just about Meg.

So, here we are again, at an inpatient chemo stay, starting the fourth cycle out of nine. It’s the last week of school, Madison had a field trip yesterday and an awards banquet tonight. I missed both. Ethan has his last field trip of the year. I’ll miss that, too. I wish I could be at all places. Every mom wishes that under normal circumstances. Perhaps the only solace to offer the big kids is that I would be there for them. I need to believe that both Maddy and Ethan know without question that I would advocate for them as relentlessly as I do for Meg.

One closing note: while Maddy grieves the loss of her childhood and struggles to manage the resentment she feels towards Meg, she did say, without hesitation, that Meg should live with her when she grows up.