TBI

D-Day, Decision Day

January 16, 2022

From some of my earliest days into being a parent, my journey has included not just the typical joys, love and challenges that are inherent to the job, but I’ve also had my fair share of grueling, heartbreaking, impossible decision making on Elena’s behalf.  I make decisions for her that she has no say in, that are physically painful for her and unbearably painful to my heart, decisions about her quality of life, her body, her education, her daily life.  Not one is easy.  They all weigh on me.

Tomorrow is D-Day, or rather BP-Day.  We have made the decision to (give, install, put in…I don’t know the right word) a Baclofen Pump in Elena.  Without getting too much into the medical details of this, a device will be implanted (similar to an insulin pump) into her abdomen that will deliver medication that helps to relax her nervous system, specifically the nerves that insist that her muscles stay rigid and disfigured, through a catheter directly into her spine.  It has been a years-long process to arrive here, and though we feel it is the right decision for her, it doesn’t make it an easy decision for us.  Choosing this path for her has felt impossible to me for years, and now that it’s here I feel only a mix of heartbreak and hope.    

We are hopeful this will give her tense, little body the relief it needs, improve her quality of life, and prevent future complications as a result.  We are hopeful that this will be a solution to concerns and problems we have been troubleshooting for years.  We are full of hope, and yet, I grieve for what I can’t help but feels like another concession in a long line of loss.  Yes, we hope to gain with this device, but it isn’t without sacrifice.

Her surgery is at 8:30am tomorrow and, as always since the very beginning, your prayers are so meaningful and sustaining to us. Thank you, friends.

  1. J Agee says:

    I think you’re making the right decision as I know of a situation where this would’ve been the thing to do.

  2. Tim and Melinda Roth says:

    Prayers for Precious Elena and her family!!!

  3. Karen Isenhour says:

    Praying for a successful surgery and for comfort for all of you!

  4. Linda Vice says:

    The Lord goes before you into the days ahead. Love and prayers, Aunt Linda

  5. Janet and Bill Zych says:

    Lots of prayers for your beautiful family. 🙏🙏❤️

  6. Mari Jo and Dan Stewart says:

    Sending prayers for Elena, your family and the medical team. Hoping for wonderful outcome and relief for Elena. ❤️🙏🏻

  7. Rhonda Miller says:

    Steve and I are sending our love and prayers for Elena, the medical team and all of you.
    Hugs, Rhonda 🙏❤️

  8. Marsha Miller says:

    We will be thinking of you and praying for all concerned. Love and hugs. Steve and Marsha

  9. Angie Sharp says:

    Praying for a successful surgery and that you and Chad be filled with a peace that surpasses all understanding.

  10. Sending our love and prayers for Elena, you and the whole family! May God give you strength as you wait and may He guide the Doctors and Nurses hands and minds!

  11. Nancy Frey says:

    Prayers and hugs for all of you.

  12. Rodney Frey says:

    Truth be known..we are all in His Hands. We are praying with all the love Grandpa and Grandma can give!

Leave a Reply

Your email address will not be published.

This is Elena. Our Light. You can see all the goodness and joy that shines from those deep blue eyes. She loves sneezes, yawns, industrial toilet flushes, automatic paper towel dispensers and The Star Spangled Banner. Music is her everything, specifically Moana, Frozen (really all Disney), Queen & Taylor Swift. Nothing makes her squeal quite like swimming, fast boat rides and her two brothers in trouble. In addition to her megawatt smile, Elena reminds us to cherish the smallest of victories, to live in the present, and to daily dwell in a posture of gratitude for every breath and every blessing.  

More About Our Story

I’m Emmalee, an ordinary gal born and raised in the Heartland. Wife to Chad, and Mom to Elena, Calvin & Turner, I spend most my days ridin’ dirty (literally so much trash) in my minivan carting kids to and fro. When I’m not being a Momager, I excel at self-care, cooking gourmet meals my kids won’t eat and deep-diving all the feelings. Most days, my attitude is gratitude, just taking life one step at a time.

Emmalee & Elena

Meet The Gals