It’s been five years since we played a real life version of “Would You Rather?” with our toddler. When doctors asked if we’d rather our daughter have a voice or an airway, we chose airway.
It’s been five years since that initial surgery in Cincinnati, where her ENT widened her airway enough so that she could breathe without the help of a tube through her trachea.
Five years since the trach tube came out and we celebrated.
Five years since we have had nurses in our home on a regular basis.
Five years during which she has thrived in school and made the best friends.
Five years spent jumping in the lake, building sandcastles at the beach, and digging roly polys out of the dirt. (All dangerous with a tracheostomy.)
It’s been five years since we heard her voice.
Now, don’t misunderstand— if you know Kate, you know that she has plenty to say. She takes after her Dad in that she is insatiably curious about the world, so she spends a lot of her day asking questions. She takes after me in that she is usually good for several sentences when a word or two will do. Kate likes a story, likes a joke, likes people. So, you see, it can feel frustrating when a voice the size of a whisper gets in her way.
We’re back in Cincinnati this week with hopes of giving some sound to her words. With vocal cord paralysis, we do not expect a typical-sounding voice; however, we are hoping for more tone and more volume… without sacrificing her breathing.
It’s a balance game we’re playing now. A little more voice, but not too much from the airway. A little hope, but not without realistic expectations.
The balancing act is hard on a parent’s heart— we armor up to have hard conversations, to make hard decisions, to stay put together in case something goes sideways. And, when you cover your heart in steel, the softness of hope stays buried for a time.
So, friends— this is where you come in. Hold hope for us. Pray big prayers for us.
Here’s how you can pray:
-For Kate’s health. Sickness ran through our house last week, and while Kate is well, she has a bit of a lingering cough. Because the first 48 hours after surgery will be rocky— particularly for breathing while her airway heals from swelling & Kate adjusts to a slightly smaller airway— her lungs have to be in top shape, otherwise they will not go through with surgery. Pray that her lungs are fully clear (as we expect them to be) so that surgery goes as planned. Also, we are grateful for wonderful docs who care about Kate’s safety.
-For surgery outcome. Kate would really love for her voice to be louder. We would really love that for her. Pray that the docs find the right balance of voice and airway.
-For Kate’s nerves/ heart/ expectations. This is the first surgery where Kate has real hopes that the outcome will make life a little easier for her. This is also Kate’s 15th major surgery. (This is not counting the many other times she has gone under anesthesia for routine airway checks and other minor procedures.) So, she knows surgeries— and, understandably, she does not like them. Pray for comfort as she goes under anesthesia; pray for understanding as she comes to terms with whatever the outcome will be.
-For Kate’s surgeons. We travel from one of the best medical centers in the country to Cincinnati because we believe the voice team here is the very best fit for Kate. We are so grateful for the resources to be able to travel here and for the expertise of Kate’s surgeon. Pray for a clear head, steady hands, and wisdom in problem solving.
-For Avery. Our sweet big sis is home in Houston, and is well taken care of by family. However, we miss her, and we know she worries for Kate. Pray for peace for Avery.
-For Lee & me. We are now so comfortable in a hospital setting that docs and nurses routinely ask whether we work in medicine. However, I don’t think either of us have ever quite become used to that moment where we kiss our little girl on the head and trust her to the anesthesiologists. Pray for us as we kick around the waiting room tomorrow for several hours. Pray for us as we make any necessary decisions and gear up for recovery.
Thankful list:
—We are so unbelievably thankful for all of you— the texts and messages mean a ton to our entire family.
—Kate has received SO much love from her family, friends, teachers, and therapists. She is now old enough that it genuinely matters to her to know she has an entire army of people in her corner. (And, feel free to email or text me if you’d like to write your own message to Kate!)
—Kate’s ENT here in Cincinnati. We are so grateful for the ways that he sees Kate’s entire picture— clinically and socially.
—The ways that Kate’s friends have acclimated to her soft voice thus far. As one dear friend/ mom of one of Kate’s friends told me, “Regardless of the surgery outcome, Kate has a voice.” This is true because of who Kate is, but also because she has teachers and administrators who advocate for her and friends who listen.