It has happened yet again. Talia has been taken by ambulance to the hospital, and less than a day later, flown to Children’s Hospital in Winnipeg. This time she’s been sent to the pediatric intensive care unit...
Our daughter bled in the womb. She was born on March 25, 2015, via emergency C-section. At that point she had lost 80% of her blood, which caused severe brain damage. She spent seven weeks in the Neonatal intensive care unit, and came home with a tube in her stomach, seizure medications, and high expectations for developmental delays.
She is almost four years old now, still fed by g-tube, on three seizure meds, acid reflux meds, blood pressure meds, supplements that help her brain retain enough sodium in her system, and heavy-duty nausea meds. Due to her weak core, she has trouble managing her secretions, and often ends up aspirating - a simple cold can be too much for her to handle. She’s been admitted to the hospital many times for aspirational pneumonia, kidney failure, epilepsy, other infections and surgeries. Her official diagnosis is over a paragraph long.
Two years ago, a team of doctors and nurses sat down with us, after an entire winter of constant hospital stays. They explained to us that due to the severity of Talia’s brain injury, they did not expect her to live past her fifth birthday. “As her body grows, it will demand more capacity from her brain, and it won’t be able to keep up. It’s going to get harder each time she gets sick to recover, and one day, she just won’t.” So we made an advanced care plan for her, focusing on quality of life and comfort.
I don’t know how to explain what it’s like to live with these words. Talia has surpassed everyone’s expectations, becoming more aware of her surroundings, her eyesight has been improving, and she has been making new sounds. But I continue to hear the doctor’s warnings. This may not last. This is her third hospital stay this winter. And each time as we discuss which medical interventions are acceptable, I wonder, is this it? Is this the end of my time with my daughter?
Someone asked me the simple question last time she was in the hospital, “How are you doing?” I gave her a small smile and said, “Okay” … but inside I wanted to scream, “how do you think I’m doing!! My daughter is in the hospital AGAIN! And every time I’m wondering if she’ll still be alive when I see her next! I’m doing horribly!! Everything is awful right now!” I probably could have said this out loud; after all she is a wonderful lady. She’d love me no matter what. Even though I know that most people ask because they care, the truth is that I don’t always answer honestly because I don’t want to be crying ALL THE TIME.
Life is difficult with Talia. And yet I’m often baffled when I sense people feeling sorry for us. These people must not realize how amazing Talia actually is! How incredible a privilege is it, that God chose US to care for her! Talia’s name means ‘dew from heaven, ’ and dew from heaven she truly is. Our life is so much richer because she is in it.
Let me be clear: the day to day logistics of caring for a child with all the health challenges that come with severe brain damage is physically exhausting, an emotional roller coaster, and difficult in many ways. But loving her is not.
I have given you an idea of what life is like for our family. But now, I’d like to share how we see Jesus in our situation.
I see Jesus in the dozens of hands that have prepared meals for our family during difficult times.
I see Jesus in the friends that have cried with me for my daughter.
I see Jesus in our church family who threw Talia her first Birthday party when I was too overwhelmed to do so.
I see Jesus in in my husband who spends his days and nights with her, tenderly caring for her needs.
I see Jesus in our extended families, who support us through it all.
I see Jesus in the medical community, who care for Talia with such attentiveness, and in some cases, incredible creativity.
I see Jesus in the friends who have done loads of laundry for us, or who help with cleaning that we just can’t keep up with.
I see Jesus in the countless messages of encouragement we so frequently get.
I see Jesus through the community that has helped carry us through the dark and heavy days.
The list goes on…for a long time...
The society we live in is all about being self-sufficient. It’s sometimes hard to accept help, and it’s even harder to ask for it. Our journey has been a very humbling experience. God has given us a responsibility that we cannot accomplish alone. But even when our family is separated due to hospital visits and I’m feeling lonely, I am constantly reminded of God’s love and presence. He has reminded us what it looks like to see His love in action.
About the Author
If you hadn't noticed by now, Rachel and her husband Paul are absolutely incredible people!!! They are former Steinbachers that now live in Sioux Lookout, Ontario with their three children, Josiah, Dawson and Talia. Rachel loves a good book, coffee and tea, and board games. Paul loves to fly and is a pilot by trade. He also knows how to rock a drum kit.
If you would like to send Rachel or Paul a note, email firstname.lastname@example.org and put their names in the subject line.