thoughtful thoughts // 30

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21 September 2014


an ms update

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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.

a smattering and a video

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15 September 2014

+ When people ask what prompted my drastic haircut I respond "postpartum hair loss." Most often it is taken as a joke: oh, haha, you become a mom and you cut your hair, hardy har har, postpartum jokes. Mom hair, soon enough mom jeans, and before we know it I'll have half used kleenex in every coat pocket. But, alas, it is not a joke. Postpartum hair loss is real people! My hair dresser poo-pooed me until my last cut and then she caved and admitted how thin my hair has become. I'm learning to take what comes and dance with it though. (By "learning" I mean moping my way onto the dance floor and pathetically swaying...until "I Don't Feel Like Dancing" by the Scissor Sisters comes on and I can really bust a move.)

+ I was wearing Alice around the kitchen tonight, singing and bouncing as I cooked a couple eggs, thinking about how blurry the last 4 months are. Wait- we have a baby? When did this happen? Whirlwind. I feel like I've been walking around with my fly down for 4 months. I recounted Alice's birth story for friends last night and it felt far away and foreign to recall. How very odd.

+ Sleep has been minimally restful of late- I manifest anxiety physically (defending my grad thesis gave me hives for 2 weeks). The other night I dreamt that the midwife who delivered Alice was in our kitchen stealing our casserole dishes. One dish in particular actually- this pretty, green, ceramic 9x13 my mom got me for Christmas several years ago. I asked the midwife if she'd at least bring that one back and she said no. Looked me right in the eye and said no! Humph.

+ I should probably, at some point, put to words how I'm feeling about the current state of Jake's MS. I don't quite have it in me today, but it is on my radar to sit up and type down soon. I imagine I'll feel it more manageable when articulated. In the meantime, videos of Jake playing peek-a-boo with Alice are much more palatable. That's right- Alice learned peek-a-boo this weekend:


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