Family Medical Motherhood

Notebooks Full

June 21, 2016

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

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  • Reply Joanie Brandt June 21, 2016 at 9:55 pm

    Jesse and Tyler…..I keep Nora in my prayers every night, and I often wonder how you are doing. I am so happy to hear you are once again expecting, and a little boy it is!! Congratulations to both of you, and big sister Nora. I will continue to keep you all in prayers and ask God for the wisdom you need, and for less storms and more still waters. God is in charge and I pray you never lose hope. Hope for bright days ahead, healthy little ones, and also that God gives you the strength to get through the days to come with two that need you both so much. God bless the four of you.
    Love, Joanie
    I love the picture of Tyler and Nora, both with such happy, sweet, precious smiling faces. Yes, Tyler, your face is precious!!

  • Reply Jeanette Miller June 22, 2016 at 12:37 am

    Jesse ~ This is such a poignant blog message/post. You have brought MeV a variety of emotions, in just one post. My sister in Christ, God will see you; Tyler; Nora; and, your son through ALL things in life. I agree with your statements that Tyler and you are “non-typical parents.”
    Forgive me; however, Tyler wasn’t the typical Jr. High kid when I was a youth director. You weren’t the typical kiddo, either. I mean this in the most positive way. I was blessed & forever grateful to shortly witness these two, non-typical Jr. High youth who God planned to join in marriage years later, interact with each other. That’s the most beautiful, powerful aspect of God working in your life. Hold fast to His promises. Continue to keep the faith in Him & His word.
    All of us, around the world, are surrounding you & your family with love; support; and, prayers. I pray for God to grant you wisdom; guidance; discernment; hope; joy; comfort; encouragement; and, His peace that transcends ALL understanding.

    Love in Christ,
    Jeanette

    P.S. Congratulations on baby #2! (I somehow missed that news!).

  • Reply Joshua Prince June 22, 2016 at 7:11 am

    I love and appreciate your candid sharing of your family’s deep thoughts, joys, and pains…. We pray joy over you all in anticipation and expectancy for this beautiful baby boy. We pray grace and strength over you both as the Lord continues to guide you as you release unto him what is his and hunger and thirst for wisdom in all seasons. We pray health and wholeness in your family, more of his mighty love and sustaining presence, and persistent peace in the face of any “storm.” Bri and I haven’t seen you in some time, but know we contend from afar with your beautiful family. Your story in this season is simultaneously beautiful, and at time heartbreaking, but may we all be reminded that his love never fails and always wins… the Lord has defeated and conquered death. May our good Father move powerfully in your midst. Keep writing and loving fiercly. Love you guys.

  • Reply Susan Huhndorf June 22, 2016 at 12:40 pm

    Bless you, Jesse! with all you have on your plate, my plate seems tiny. yet the quote from James 1:5 is absolutely what I needed to read today. Many Blessings on your new found joy , Susan

  • Reply Nancy costsnza June 22, 2016 at 11:26 pm

    I am so proud of both your and Tyler’s grace and love while you are dealing with hard problems. You enjoy each other, celebrate Nora and look forward to your new son. I have never heard of a birth plan, I never had one for any of our four although it sounds interesting. I have a new bracelet that has the Lord’s Prayer engraved and three disks they say love, hope, faith.that is now Papa and I dealt with his illness, but as you know it is also the way to live daily life. I love you, Grandma

  • Reply Cathy Bush June 24, 2016 at 9:42 am

    Do beautifully written thanks for sharing I think of you often praying that you will have a good day Much love and God Bless Cathy

    Sent from my iPhone

    >

  • Reply shortestleap June 26, 2016 at 3:51 pm

    So delighted to hear that you are expecting again! I will be praying for both Nora and the new little bundle of joy. Your words are so inspirational, Jesse! I look forward to every note you write.

  • Reply sushi hovey August 15, 2016 at 3:50 pm

    Dear Jesse ~

    Your note has been in my in-box since you posted in June … waiting for me to feel the push of the Spirit to comment … today’s the day! Know that you will always be seeking wisdom in life as there is not ever a day when you will “just do it” in your own knowledge and strength. And yet even while you are seeking wisdom, you are speaking wisdom …”prayer is a treatment, and where there is prayer, there is faith and where there is faith, there is hope.” And while reality can be really, really hard at times … with Christ, reality can never defeat hope!

    Seeing Nora’s sweet little belly button in your photo brought a big smile to my face! Perhaps you have another tiny little belly button to gaze out by now? Enjoy touching these sweet reminders of the life you gave your children … these cut cords may have brought physical existence, but it is the uncut cords of your heart that continually fill Nora and your son with love!

    Blessings,
    Susie Hovey

  • Reply Keith England August 31, 2016 at 2:48 pm

    Reread this today, esp the last paragraphs. Beautiful encouraging words. Thank you.

    On Tue, Jun 21, 2016 at 9:29 PM, And She Lived Happily Ever After wrote:

    > Jesse posted: “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. ” >

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