Lately I have been able to go days without thinking about the reality that Tori is dying.
She has been so stable, so calm, so content.
So, it was a rude awakening when she started to have difficultly swallowing last night.
The suck and swallow reflex is a “use it or lose it” ability, which is why we almost always have her sucking on a pacifier. We were advised by the SLP at Hershey Medical Center back in February (pre-diagnosis but post-swallow study) to do so in order to help her maintain those abilities as long as possible.
Four months later, she still has both abilities, but her swallow reflex is fading.
We had already started the process of obtaining a “suction machine” for her, but today it became our first priority.
We will use it to help her get rid of saliva and phlegm when she cannot swallow it. This machine will help us prevent her from aspirating anything, which is crucial because aspiration can lead to pneumonia. Pneumonia will likely lead to…
The machine will be delivered on Monday. Until then, we have to listen to her carefully and do our best to help her get rid of excess saliva with the “booger sucker” bulb.
Today was a reminder that she is fragile, that she is dying.
It reminded me to continue to pray diligently and without ceasing for her, because in the busyness of caring for her it is easy to forget to do anything else, including prayer. And I humbly admit that full days have gone by where I have forgotten to say even a short prayer for her because I have been so focused on her needs; I had forgotten that the greatest thing I can do is to pray to the only one who can heal her. Not anymore. Our baby girl still needs a miracle.
Please pray that she will maintain the ability to swallow as long as possible. Please pray that God will choose to restore Tori and make our Victoria victorious through Him. ❤️
Our God is greater
Our God is stronger
God, You are higher than any other
Our God is healer
Awesome in power
Our God, our God
— Chris Tomlin
8 thoughts on “Reality Check ”
I don’t personally know your family.. but I just heard that song on the radio just minutes before I read your post.. every time I hear it I know I’ll be reminded of your family and your Love for Jesus!
God has given you such a beautiful heart, it’s clear.
Tori is such a blessing and your faithfulness to our Savior is so encouraging and uplifting!
We are always thinking of Tori and family and most of all always in our prayers
My prayer are with your family daily.
Lord you are the all mighty the maker of all ,therefor you are also the change marker, i pray your will. AMEN
May the Holy Spirit give you continual reassurance that Tori is always wrapped in her Lord’s comforting arms.
As an experienced critical care nurse, with years of experience with suctioning and patients who can’t guard their airways. I cannot imagine having to care for my baby who could not swallow. Such a frightening, devastating thing to live through. I am so very sorry sweet Momma. Praying for you.
Prayers for the whole family.. She is just so beautiful.. Those big eyes and those eyelashes..
I firmly believe that even on those days you “forget” to pray as you focus on sweet Tori, God knows the prayer of your heart. Yes, I firmly believe in prayer but I also believe He hears the cries of our hearts even when there are no words put to them.
I know all to well what you are going through. My daughter had a terminal illness as well. Everything was fine until it suddenly wasn’t. She passed on May 18th. She was 10 months old. I wish I had done what you’ve done here to help remember our journey together.