My work is cut out for me. My belongings are spread out on a table that could easily accommodate 4 people. My computer screen is filled with open documents. A glossy book is to my right and a sketch pad is to my left. Chaotic writing erupts off the page. Seeing it all on the perky tabletop in front of me suddenly forces me to feel the emotional and brain-pinching weight of it all.
Where to start?
I decide on a document search. I know what I’m looking for must be here somewhere.
I type “ Birth Plan.” I know it’s in my computer somewhere because I wrote one before Nora was born, and seriously, I know – this morning especially, that I don’t want to rewrite a plan for quite possibly one of the most unpredictable events I will experience.
As I step into the 3rd trimester of my second pregnancy, and as I feel my son twirling and growing and coming closer to meeting the rest of the world, I can’t believe I’m already at the “birth plan” stage. I have so much joy and so much love. The love envelops me. I can see it in Tyler, feel it in myself and I see it holding our whole family. I have a tiny hoodie and a little boy pair of newborn socks laying over the back of the couch. I find myself holding them throughout the week and showing just about everyone who comes over. It’s blissful and beautiful.
There are also moments of stress as I set aside my thinking about the birth plan and think, again and again, through our life plan. In those moments, I list to myself only some of the hurdles we’ve faced of late: Nora hospitalized three times in the last few months, sudden and unplanned trips to the doctor, the exchange of regular supportive therapies for urgent therapies, and many early morning appointments for blood draws. After weeks like the last few, when our day-to-days are long and draining, Tyler and I find ourselves asking, “How will this work with two?”
We have lots of support, and yes, I know these days more than ever it takes a village, but there are still days when thinking through it all makes my jaw tighten, and then my neck, and next, my shoulders. The knotted tension builds, then, if I’m lucky, the calm and floaty voice of my video- taped prenatal yoga instructor comes to mind: “You have all the love and support you need to care for this baby.”
Mmmm Zen. I imagine the little hoodie and baby socks and mommy-bliss washes over me.
My computer locates my “birth plan” document. I glance up to see if anyone wants my table for four, but I know I’m not moving.
I take a deep breath and a sip of coffee. No matter what, I remind myself, always deep breaths.
Another breath, then another.
A sip of coffee.
My eyes fall to the glossy book to my right.
“Epilepsy in Children”
Post-it notes, and index cards stick out of the book like colored pins in a cushion. My written notes, on large sheets of notebook paper, stick out even further. They’re filled with words spoken by the pediatric neurologist just last week. They echo around and refuse to stay contained to the paper I wrote them on:
“I’m not sure I can get Nora back to baseline, I am surprised we have gotten this far.”
“I am comfortable with trying drug A if we get a G-tube as drug A is an appetite suppressant. I will put in a referral for a surgery consultation.”
“She is very young for VNS therapy; yes with VNS she might feel a choking sensation when the vagal nerve is stimulated for about 3 months. It only seems to have effectiveness for 2 years or none at all, but it could buy us some time. I will send you the reps contact info.”
“Yes I think we should stay on the Ketogenic diet for now as she had such positive results initially.”
“I would love to get Nora on drug B, but it takes up to 3 months to see results. We have never had the luxury of time with Nora.”
“Since she is on 4 drugs we would need a 5- 6-day hospital stay to make a transition to a new drug.”
I take a deep breath and drink more coffee. There are so many options for Nora’s treatment, far from ideal options, but options nonetheless. Through this latest discouraging conversation with the neurologist, I just kept thinking of a single word: prayer. Prayer is a treatment, and where there is prayer, there is faith and where there is faith, there is hope.
To the left of my computer there is a sketchpad. On the sketch pad there are notes, one catches my eye – it’s a phrase that says “non-typicals”. Tyler and I are non-typical parents. I’m a non-typical mom. The love of my life is a non-typical dad. The phrase makes sense to me. Another note catches my eye. It’s a verse:
“If any of you lacks wisdom, you should ask God, who gives generously without finding fault, and it will be given to you.” James 1:5
I’ve never flown by the seat of my pants. I wasn’t the “spontaneous girl.” I was the girl with a day step-by-step. But today I’m the girl who starts each day, and very many moments all day, by asking for wisdom that I lack – wisdom in all things, wisdom for each thing.
I take a breath, more coffee, and again look clearly I look at the table and the book and all my notes. There’s no guarantee that what worked yesterday will work again.
Of course I don’t know what is next, but I do know the next step always becomes clear, or it becomes clear we need a new next step, regardless there is momentum here and now and momentum means we aren’t giving up. Me and my tribe, we never give up.
I wish I could map it all out, sitting here in this coffee shop, but our journey is absolutely unorganized and unpredictable. I am foggy brained and emotionally fatigued by the mass of unknowns and lack of clear options more often than I care to admit. We function in the storms more than we sail on still waters; it is a choppy and messy reality. It’s the mess of feeling the joy of new life moving and twirling inside me while holding my daughter’s hand in a hospital bed at children’s hospital. It’s seeing Nora sit up, smile and laugh today and tomorrow see her unable to hold her head up.
Our journey is helplessly shouting up to heaven “Give us wisdom!” and falling to our knees in gratitude when we experience moments of clarity, peace and quiet waters.
Our journey is full of deep breaths, cups of coffee and cheesy yoga videos.
I look back down at my computer and my birth plan from two and a half years ago. I know this isn’t something I can plan.
I’m confident my new little baby’s birth, my son’s birth, will unfold as it should, as it has for all women throughout all time. And, as I consider our “life plan” and a new treatment plan for Nora, I’ll take the words of CS Lewis, toward the end of the chronicles of Narnia, “All will be most well.”
I believe, from the bottom of my heart, that it will be. It’s my joy to tell you that I believe it for you too. All will be most well, friend. Breathe and take heart.
Photo credit: Jessica Rice Photography