Family Medical Motherhood

Finger Songs, a Butter Colored Labrador, and Pumpkins Rolling Toward Winter

October 26, 2015

It’s a year later, and here we are: Living. Laughing. Crying. Hoping. Rejoicing. Despairing. And learning.

Let me say that last part again: learning.

I haven’t posted in months; please don’t interpret my silence as “no news is good news” nor as “no news is terrible news.” Truly, it’s neither.

Spring and summer brought our family a treasure trove of joy filled moments. We celebrated Nora’s first birthday, traveled north, had picnics in the yard, felt the sand between our toes, had dance parties, read books, watched our favorite TV shows, and welcomed a beautifully behaved, gorgeous, yellow Labrador named Tahoe into our family.

Today I’m drinking a pumpkin spice latte, it’s raining and grey outside and Nora and I are wearing our first fall sweaters. Autumn began weeks ago, but today feels like the first day of a new season and with each season, life becomes a little clearer for our family.

We’re coming to know what is normal for us. We’re learning how to be present no matter how the moment is unfurling.  Our normal is physical therapy, cooking dinner, occupational therapy, going out for date night, educational therapy, reading stories to Nora, doctor appointments, laundry and naptime, emailing neurology Doctors, laughing with Tyler, reading about possible seizure treatments, and singing itsy bitsy spider.

We’re moving forward now, and when we looked up and looked around, we discovered that the seasons, and the joys and the people we love have been moving along right with us – there is rhythm.

Praise God, there is rhythm.

We’ve made tremendous gains in seizure control; nevertheless the struggle continues as we continue to pursue treatment options and discern what levels of drug intervention verses seizure activity are appropriate for Nora’s health and development. Nora has been averaging daily seizures since last January, regardless, our neurologist continues to be impressed and surprised by Nora’s developmental progress and the seizure control we’ve obtained. Please understand this doesn’t mean Nora is following a typical development schedule; on the contrary she is experiencing clear and significant delays.

Developmental progress and seizure control aside, there is no greater joy to us, to her family and to her friends than watching Nora embrace and explore her world. We’ve been gifted a wealth of seizure free moments and even days. We’re thankful, so beyond thankful, for Nora’s clear progress and overall gains in every area. Part of the learning and finding our normal has been discovering how to live, and dance amidst our daily neurological firestorms. Often my heart is heavy with the reality of our challenges but full with gratitude for this journey. Rhythms and routines that didn’t exist a year ago have emerged and continue to evolve. Nora is growing, we are growing and I sometimes just stop to feel the pulse of our days continuing on.

You’ve had a glimpse of our journey and have been sharing in our story. You’ve cried with us, prayed with us, and celebrated with us. This last year has been most unusual, crisis centered, with raging ups and downs: your existence, your comments and messages and simply knowing you are reading, serves as a great source of comfort for our family. Thank you.

Somewhere along the way, during these months, a life we-couldn’t-quite-imagine has evolved into our-life-we-are-living, and I can’t wait to share more with you. Thank you for reading, thank you for rooting for our Nora and for our family, and thank you for coming along on this journey with us. Happy fall!

Photo credit: Jessica Rice Photography

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  • Reply Nancy costsnza October 26, 2015 at 6:02 pm

    My heart is full of love for you Jesse, Tyler and Nora. You are such a. Special, loving family. Being with you is a joyful time. Love Grandma (Costanza) in

  • Reply Jo Ann October 26, 2015 at 6:15 pm

    Last Friday, I got to meet Nora. As I sat next to her Great Grandma, Nancy, Nora was fascinated with me: Oh, how I wish it were so! I was “full of bling-bling”…bright, shiny stickers adorn the otherwise generic blue cane that keeps me upright; my blouse sang sequins,in turquoise, fuchsia, flowers. And Nora rewarded me with a sweet, shy smile. It reminded me a bit of the smile of my friend of 70 years, her “Grandma-Great”. I twirled the cane, and her smile broadened as she reached for it; then spotting my blouse, her tiny fingers pointed daintily to the design’s swirl…and as if to say, “Stick around, Lady; I like your style”, she then curled her sweet little hand around my finger…and I was blessed. We used silent words; the kind that transcend to eyes…for they are the windows of the soul…and this is what I told her. “Never give up, my Sweet. I’ve been where you are. God is with you and so is the world. Hope lives strong….and prayers are abundant.

  • Reply Eva October 26, 2015 at 6:42 pm

    Beautiful Nora…beautiful Jesse. Thank you for letting me take this journey with you.

  • Reply Judy Barnett October 26, 2015 at 7:34 pm

    It was so good to have an update on your beautiful daughter.
    May God continue to uplift and strengthen you and Tyler. You are a wonderful example of walking by faith and walking in faith.
    You are in my thoughts and prayers.

  • Reply Margaret Watson October 26, 2015 at 7:57 pm

    Jesse, What an inspirational joy to read your latest blog. You are a gifted writer. The love surrounding your family and lovely Nora just shines.

    I’m a CVPC member and knew you and your brother “way back when.”

    Bless you, Tyler and Nora.

    Meg Watson

  • Reply Sandy October 27, 2015 at 9:26 am

    I so loved reading your blog and the pictures are adorable. The love and joy shine from your eyes. I also so appreciate the update since I don’t see or hear about your family otherwise – and wonder often how you are doing. Nora is special to so many of us.

  • Reply Joanie Brandt October 27, 2015 at 4:27 pm

    Such a beautiful writing and very lovely pictures. Nora is precious and cute as can be. Thank you for the update. I always look forward to hearing the latest, yet I know how busy life must be for you, Jesse. May God continue to bless you, Tyler and Nora. And may your new addition to the family, be a joy to all.
    Love, Joanie

  • Reply Kathy October 28, 2015 at 3:12 pm

    Thank you for the awesome update! We pray for Nora, you, & Tyler everyday.
    Blessings & best wishes!

  • Reply Nancy Kochsmeier October 28, 2015 at 5:26 pm

    Thanks, Jesse for the beautiful update! God’s faithfulness shines through you, Tyler and Nora! Prayers continue for all three of you!

  • Reply Keith England October 29, 2015 at 8:58 am

    My thoughts have frequently drifted towards your family, so thank you for this update. Nora’s smile is so radiant and her eyes a window to her precious and beloved soul. Cindy and I pray. Please let’s us know if there’s anything we can do in addition.

  • Reply Cathy October 29, 2015 at 11:58 am

    Dear Jesse, What a beautifully written update. I just read it for the second time and there may be a third or fourth. Nora’s picture remains on my desk reminding that it time to include her in my prayers. Thinking of you, Tyler, and Nora often. May you continue to hang on to the hope we are promised when we stay close to our Lord
    Much love, Aunt Cathy

  • Reply Paulette (@PDBritton) October 29, 2015 at 11:11 pm

    Hi Jesse, Eva M. is a dear dear friend and has shared your journey with me so that we can pray for you and your lovely Nora. We have a son with autism so we share some common ground. I’m privileged to read your blog. Much love.

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