The gift.

Our days are full and yet very simple. Watts and I are buddies and hang out all day, every day. We play and read and drive Piper to preschool and paint and play playdough and coerce bites of food. We play outside and run errands and do chores around the house.

These are simple days and the greatest of days, if I slow my heart down to rest and truly see them for their beauty.

Watts has a head full of hair now, his cheeks are chubby, and his eyes sparkle most days without a hint of medication dullness. His labs have shown no sign of relapse.

He's come a long way. We've come a long way.

Watts, one year ago.

[It is with some degree of hesitancy that I write the next few paragraphs because I am so fully aware that my life is a cake-walk compared to some... And yet, I will write, cautiously, because it is where I am today.]

I have to fight each day to stay in today. Fear is at my heels at any given moment, if I am being honest, and it is a struggle to stay fully present and joy-filled in the day that is before me. But fight I will. Each day, each moment sits on my lap like a well-wrapped gift and I can choose how I am going to unwrap and engage with it. I know now, of course (and my grey hairs can attest), that the present may or may not be what I want and it may bring pain, but it is still mine to unwrap and choose how I will engage it. Will I move into the moment with honestly and open-hands, or will I enter it with a numbed heart and clinched fists? It makes all the difference, really.

It is my story, both pain-filled and beautiful.

This cancer journey has taught me many, many things, and one of the things that it has taught me is how little I really know about anything. I use to want to figure it all out, to know what's up ahead, to know that if we fight/love/work hard enough, then the labor will result in fruit. None of that is true, of course. Hard work pays off sometimes, and sometimes it doesn't. Chemo treatment works sometimes, and sometimes it doesn't. Prayers are answered the way we hope for, and sometimes they aren't.

Life is mysterious and pain-filled and God works in ways that I cannot even begin to understand. All of this world is broken. He promises to make all things new but we only see glimmers of it now...and daily we live in the tension of knowing His promises and yet having to wait for their fulfillment. We often find ourselves busy and striving for an ever-elusive happiness when, in reality, most days we feel as if we are just scraping by with bleeding hearts and broken dreams. Our work feels futile more often than we want to admit, violence and war fill the headlines, and our babies get cancer. We feel we have to fight for hope, fight for peace, and fight for our very lives at times.

And yet, sometimes it is in the darkest of seasons, that we have the eyes to look and to see the brightest of stars. Sometimes it is in the pitch-black of night that we can start to see God for who He is, apart from the blessings and happiness that we want to get from Him.

Sometimes it is when things are upside-down that our blinders are stripped away and we can see the deep beauty in this world, despite the brokenness. 

Sometimes it is in the most broken of days that we finally learn to stop striving to make life work, and we start resting in the moment that it is right before us, the gift that is on our lap.

Sometimes it is in the deepest darkest moments of our lives that we can see God and see His deep and ever-present and far-reaching goodness...regardless of the circumstances.

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The thought of losing my boy takes my breath away. It catches me at funny moments during the day and all of a sudden I find that its hard to swallow for the rock-size lump in my throat and I can't seem to get my lungs full of enough air. But my son is alive. And perhaps if he wasn't, I wouldn't write of the darkness bringing clarity or the goodness of the Lord even in the midst of pain...

But as I watch others who are walking down roads filled with grief and pain that only my worst nightmares hold, I see their faith and hear their words of His goodness and it shakes me to my core.  

In their faith, once again I see and believe, He is good.

Half birthday, little rascal, and update.

Yesterday was Watts' half birthday and we celebrated with sweet treats (which our noodle boy didn't eat a bite of) and a park trip on what seemed like the most gorgeous day of the year to date. We celebrate half birthdays... just as we try to celebrate every little thing these days.

Other birthday celebrations:

6 months old, pre-diagnosis and before we started celebrated half birthdays.

Watts' first birthday. He was so very sick this day.

Watts' 1 1/2 birthday. 

Watts' 2nd birthday (and Piper's 4th).

What a gift to celebrate our little warrior boy! A little bit about him: He loves all things trucks, cars, and planes. He loves scary things, loud things, and gross things. He loves to dance, sing, and play the guitar and piano. He likes to dress like Papa (Michael) and "Taco" (his uncle, Charlie). He is talking up a storm and we love to hear his little brain thinking about about things.

He is also a little rascal these days. His goal, on most days is to terrorize Piper. He can do this a number of different ways but one of his main tactics is the age-old favorite of mimicking. Or maybe it's arguing? I'm not really sure. Piper will say that her favorite characters on Paw Patrol are Everest and Sky to which Watts will respond, "My favorites are Everest and Sky!" And then Piper falls apart. The thing is that they are not Watts' favorites...he really is only saying it to annoy Piper. So, basically, it has begun. The whole younger-sibling-terrorizing-the-older-sibling thing. I did it to my older brother so I am now paying for it with my offspring... that's how it works, right? He also bit Piper till he drew blood yesterday. Just like I use to do.

Thankfully, Piper is forgiving and Watts can be a good playmate, so there are many beautiful moments of playing and affection between the two. Piper is always asking him for hugs and snuggles and he is sometimes obliging. We are so thankful for this little rascal and these normal, simple sibling interactions. Although sometimes they drive us crazy, we find ourselves humble with gratitude at the end of each day.

Watts continues to do well in treatment. We are in the middle of a couple of weeks of Mercaptopurine (6mp) and will go back to Brenner on the 26th for a lumbar puncture (chemo in his spinal fluid), Vincristine (through his port), labs and a doctor's appt, and possibly a transfusion of IVIG. If I did my calculations correctly, this will be his second to last lumbar puncture. Lord willing.

Watts' appetite continues to be hit-or-miss, but, as one of his doctors said last week, "It is what it is right now." Watts is getting sufficient enough calories in him to not need intervention and this will hopefully change once he is off treatment. His periods of nausea and loss of appetite tend to be around steroid weeks and for 24-48 hrs after his weekly PO Methotrexate that he gets every Monday.
In addition to nausea, Watts tends to get drowsy on the 6mp and will sleep for 4+ hours if I let him. I don't, most days, because this inevitably backfires the next morning.

His labs have all been right where our team wants them, there have been no signs of relapse, and he hasn't needed any transfusions except for almost monthly IVIG transfusions to help boost his compromised immune system. We are thankful, and nervous, and thankful.

Thank you for the continued prayers and support of our boy. We are grateful and do not take it for granted.

A rainy day.

[I (Hannah) wrote this a couple weeks and forgot to post it.]

The rain came down heavy this morning as I drove the familiar drive to Winston. Rainy drives on Hwy 40 always remind me of the very first drive, the one in the ambulance with me in the front seat and Watts in the back, being worked on by the paramedics. They would murmur words I couldn't hear to each other but would periodically quip to me that he was doing "just great". I didn't believe them. It was some of the hardest and longest minutes of my life when I couldn't see my son and I was alone in silence. And I didn't know that the worse was yet to come. I didn't know that he would begin to swell and that he would struggle for breath in the blur of the Brenner ICU, that his little 10 month old body would begin to go into septic shock and that I would have to fight to keep a hold of his hand because there would be so many doctors and nurses in the room. I didn't know all that then, or I might have broken in two.

It was actually sunny and beautiful that May day but I cried so hard that I keep remembering it as a dark and stormy day. Just like today.

Watts sang in the backseat as we drove to his appointment this morning. He bobbed his curly head of new hair to the music and pointed out trucks that we passed on the road. A heavy fog covered the downtown buildings of Winston and the rain pounded our windshield. And then, just as the tears started to come in my own eyes as my mind lingered on old memories, a small bird, perhaps a sparrow, broke through the clouds and swooped across my view. His eye is on the sparrow, I remembered, and I know He watches me. And I was reminded again in that moment of how He loves me and my little boy. Every step of this cancer journey I've known this truth with every fiber of my being.

We've come so far and yet we have so far to go. We are so happy with where Watts is and how is doing. He is developing right on track and has remained mostly healthy and out of the hospital since starting maintenance. But every day we watch him. Every day we think of cancer, we treat for cancer, we talk of cancer. We look for bruises, for lethargic behavior, for fevers... We hold our breath for labs and count down the days till treatment ends. And not in excitement but with dread. We hate the toxic chemo but also never want it to end. 

Oh Lord, this cancer journey reminds me of our earthly journey. Our time here on earth is strewed with brokenness and pain with glimmers of Your beauty and restoration in between; little glimpses of the sparrow breaking through the rain clouds. We ache for Your return, for You to make things ultimately and permanently new, and until then, we wait with baited breath. We wait in brokenness and in pain at times. We hope, O Lord, in things unseen. We rest in Your love demonstrated by the cross. We rest, O Lord, help us rest.