29 September 2014

on a walk behind Grammy's house
Vermont was beautiful this weekend- the foliage, of course, mixed with unusually warm days full of hot sunshine. Family time. Beautiful drives. A good dose of nostalgia. We made the drive up for Grammy's funeral, a quiet, intimate gathering that I was relieved to experience. It seemed about time we pay tribute to this spark of a woman.

There are good stories to share about Grammy- how she drove a backhoe and would give her grandchildren rides in it's bucket, how she used her motorcycle to pull her daughter on a bicycle, how she saw her last couple years in an elderly home as "ministry to the old folks," working to make the other residents various crafts out of plastic canvas and constantly trying to cheer those around her. She was 93 when she passed away this Spring- most of those "old folks" were younger than her, for certain, but few, if any, had her childlike spunk.

Grammy was not perfect, but she was heartfelt- striving, learning, seeking purpose. She was stubborn and strong and loved children most of all. Oh Grammy. I hope you're sitting with Ernie, enjoying a turkey club, and throwing back chocolate syrup straight from the bottle.


thoughtful thoughts // 30


21 September 2014

an ms update


16 September 2014

Alice is asleep on my lap. Jake is nodding nearby. The dogs just enjoyed a brief walk in perfect jaunting weather- just cool enough to justify putting a sweet knit hat on the baby. Our lives feel calm and warm in this moment. And I feel grateful. These are the moments that this tumultuous year is hammering and needling into focus. These are the moments that are life-giving. Renewing. Restorative. Focus on these.

Jake and I have often said that we wish he didn't need to have monthly infusions. Yet, we have appreciated the check-in every four weeks- the opportunity to sit together for a couple hours, chat with kind nurses, and be subtly confronted with our lack of control over, well, everything. This has been our routine for three and a half years. So, though we've wanted and prayed for the infusions to come to an end, it seemed odd and unreal to leave Saint Elizabeth's yesterday after his last one. 

Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words. (Romans 8:26)

The infusions are over and we're onto a new treatment. Jake's MRI remains stable- he's due for another as soon as we can finagle the insurance coverage- but his blood work has suddenly shifted. In the next couple months he will remain at a high risk of a fatal brain infection revealed in his blood- a side effect of those monthly infusions. In the meantime we'll embark on the task of navigating the side effects of a new drug. Appointments, tests, phone calls and letters from insurance companies, financial aid applications, new nurses names to commit to memory and phone numbers to save, slips of paper with scrawled details I want to research when I have a chance. 

Bouncing a baby on my hip, standing in Jake's neurologist's office, tears in my eyes. 

We've come a distance from Jake's diagnosis four and a half years ago- dating, living in rented spaces, working together at the YMCA. We often laugh about one of those very first nurses telling us that our children would be beautiful and they would have Jake's eyes. I can feel the dim-lit hospital room, the curtain drawn around Jake's Jamaican hospital roommate, and see her taking Jake's vitals.

And now here we are, our blue-eyed baby girl asleep on my lap. The nurse was right- she is beautiful. And we will be okay. And we'll be better than okay if we can take these quiet moments and squeeze the glory out of them- drain them bone-dry of every renewing and restorative ounce. 

Jake's last infusion- 15 Sept 2014

I want to revel in the love I have for these people.
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