Oranges

I am laughing because you signed “orange”
for the fourth time today
with such joy on your face

 

and the sounds of this new word

coming from your wide smile
“orange”
and I’m peeling it with my clubbed fingers
my fingers that held yours today
full love of love and trust and confidence
while we walked outside
downtown on cracked sidewalks
and through the hospital avoiding germs
and then I realize your love for oranges
(clementines, really, because they’re just your size)
and my love for oranges
are undeniably connected.
I ate one almost every day
while you grew inside my belly
I ate one the day you were sleeping
during the ultrasound (one of many)
and we needed you to move.
It seems like just a minute ago when
you jumped and swayed inside my belly
and pushed on my strong lungs
and without knowing, I knew you so well.
there is this wonderfully strange
enticing connection
separate but the same

and I never tire of the awe I feel
every time I look at you.

 “more orange please mama”

okay Simon, more orange.

12-21-17: marvelous

marvelous eyes
marvelous hair
deep sea blue
and golden light
this naptime
as you sleep
I drink in the mystery of you.
this beautiful child
one full of noises
and wonder
and pure heart of joy.
you who grew inside of me
with a tiny freckle above your right eye
what a gift it is
to teach you
learn with you
snuggle you to sleep
what a rare and intimate connection
you needing me
just as much as
me needing you.
most at rest
as you rest
relaxed in my arms.

One Year Old Hands

Your formerly tiny, balled up hands are different now
Flatter, fatter, moveable, still soft on my cheeks
They explore every surface and texture you touch
Patting and wiggling all day long
Your baby paws dig into the dirt as we put plants in the ground,
Leaving lines of black under your fingernails.
Grasping at strawberries and cheese for your lunch,
Carefully placing them each into your wide-open mouth
With curled up corners and a giggle in the air.
They softly pat my chest as you nurse and find the biggest mole you can pinch
Eyes drifting off into sleep, or at least stillness and rest.
Much needed rest.
Your hands are bigger now, and they do big things
Like pull you up on the furniture as you cruise, lightning fast towards your friends
They learn gentleness to pet the dog, and high fives to greet.
You grasp my fingers when you walk, and stop if I let one go.
As Daddy pulls you in the wagon, you reach your hand out for mine
And we walk, hand in hand, tiny and true and trusting.
I love your tiny hands, willing to open and clap, to be kissed and to hold.
You have your daddy’s fingers.
They are the most natural thing I have ever held in my hands
Like they were always meant to be right there
All this time

-Gillian

3-13-2017, A Lesson about Giving Grace (to myself)

Days can be full of the most mundane things. More often than not, we let the mundane become our focus and lose focus on the extraordinary things that exist around us. For example, doing laundry = mundane. Allowing your baby son to destroy your perfectly sorted laundry pile = extraordinary.

Why is that extraordinary? Because it breaks up the mundane. We need both. If we didn’t have the mundane we wouldn’t know about the extraordinary. But if we lose sight of the extraordinary, we will never find lessons in the mundane.

I think Gillian shares that so beautifully below. Grace can be found in both the mundane and the extraordinary. But we need to open our hearts to both so that we can find it.

3-13-2017

The to-do list is long and the done list feels very short.

I reflect on my day and wonder how late I can stay up…
…to switch the laundry (but the shirts in the dryer are wrinkly again)
…and fold the towels
…I should pump and study.
…Help jumpstart tomorrow. Prep lunch. Make coffee.

I think about all of these things and about how much I stressed today,
and how I didn’t just take a deep breath and find joy in the moment,
and how much I fretted about being too tired and was too impatient,
and how often I cursed the time change.

I think about how my day needed a little bit more love and grace,
because I think when I talk to Jesus about my day, he doesn’t see my to-do list,
He sees my done list, but it looks very different from my own.

He sees how I loved my child and gently washed his hands after each meal.
He sees how we clapped hands a million times today,
and that we laid down and took a nap together.
He sees that I called my friend just to see if she was okay,
and spent a little extra time listening to a new game invented by a most creative 8-year-old.

So maybe my lesson for today isn’t what I did or didn’t do,
(yes, maybe I looked away too long when Simon spilled coffee on the carpet)
but that I tried to love today – that’s the takeaway.
I hope tomorrow I can give a lot more grace to myself and just as many kisses to Simon.

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When the Cure Hurts

I can always tell when my lungs are feeling their best because I can laugh freely and I don’t stifle it to avoid a coughing fit. When I stopped taking Orkambi, I couldn’t do that so well. So I think of that and I smile.

Last Wednesday, I started taking a medicine called Orkambi – the first type of medicine to treat the underlying defect of Cystic Fibrosis (CF) at the cellular level. It’s pretty cool and very new.

When I was in college, I was a part of the clinical trials for this drug and eventually started taking it “open label” until it was approved by the FDA in 2015. Shortly after though, I found out I was pregnant with Simon and since there’s no data on what it does to a developing baby, I decided to discontinue taking it. After Simon was born, I waited to restart since I was breastfeeding. It is not known if it transfers into breastmilk and if so, what that small amount would do to a baby.

Now that Simon is almost 10 months (!!!!), nurses less, and my baseline lung function is lower than it used to be, we decided it would be wise to restart Orkambi. We will get monthly labs for Simon just be sure that he’s doing well.

I have a lot of mixed feelings about restarting this medicine. It’s an amazing drug. It works and it’s been so rewarding to be a part of making it happen in the trials. But… it’s not what we all hoped for.

It’s not a cure and doesn’t completely fix the problems caused by CF. It is a start though, and in my experience on Orkambi, I was living a better quality of life, had no pulmonary exacerbations/hospital stays, and my lung function stayed steady. Sounds good right?

The side effects though. These should be temporary, but they are not pleasant.

Within a couple of hours after my first dose, I had a hard time breathing even laying down. Shortness of breath continued the next day, then fevers came. Next day, no appetite. More coughing. Night sweats and hot flashes. Tightness in my chest. Oh-so-tired (thanks Simon, for letting me nap with you).

I feeI worse now than I did before I was admitted to the hospital a few weeks ago (and I just got to feeling better!). So, this Orkambi, with all of its anticipation, hope and excitement has me feeling pretty rough right now. I’m holding on to hope that I will feel better than before, with a new kind of clarity in my lungs, more stamina, and less cough.

I can always tell when my lungs are feeling their best because I can laugh freely and I don’t stifle it to avoid a coughing fit. When I stopped taking Orkambi, I couldn’t do that so well. So I think of that and I smile.

-Gillian

11-8-16, Married for Two Years Today

Married for two years today.
This morning you woke up before me, made coffee and got ready.
Just in time to snuggle back in bed, baby in the middle as he wiggled and stretched and grew before our eyes.
You ate your Honey Nut Cheerios while I did my first breathing treatment of the day. We watched the morning news and agreed to try not to be anxious about Election Day.
While I got ready, you got the sleepy baby prepped for our day: cheered him through his medicine-taking, talking him through a diaper change, buckled him safely and happily into his seat. Simon and I left in time, with my warm coffee in hand and a few extra kisses in the driveway of our new-to-us home.
We will spend the day apart, each working, but looking forward to our dinner in PJs tonight and undoubtedly staying up late to watch our favorite candidate become president. Hopefully with a glass of wine.
We will wake up tomorrow again, snuggles and laundry and work and appointments.

This is the love of our marriage.
Stable, imperfect, self-giving.
In the scope of it all, still new.
We are growing together, with the help of people who love us so well.
We have done much, at times overwhelmingly too much in our short time together: married, moved to a new state, 2 new jobs, left one job, started grad school, high-risk pregnancy, beautiful baby, new house. So much changes, yet we cling to the same rock together.
We laugh along the way and we cry and we fight, too. But in the end, we love each other better for it. We challenge one another to be more authentically ourselves.
That is the love that I need in my life.
This is the love that will get me to Heaven.

-Gillian

*Late addition: Hillary lost that night and we both were very sad 😦