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Mar 6, 2016

A Remembrance of the Important

This weekend we became suspicious that our daughter Kara had aspirated and might have developed pneumonia from it. Before dawn, Kara cried out screaming from her bedroom. When we arrived, she had vomited significantly. We tended to her, cleaned her up, laid her back down on her side and let her rest. She slept soundly for the next several hours. In fact so soundly that she had to be awakened two hours after her normal rising time.

We began to discuss her sickness, reviewing the week's events to try and figure out from where this stomach bug came. Quickly, the conversation turned to aspiration from the vomit. You see, for the reader who is not familiar with our family, Kara has Rett Syndrome. She cannot walk, talk or swallow properly. She must be fed by a g-tube directly into her stomach. Because of this, when food comes up, even small amounts of natural reflux, we have to be concerned with aspiration.
Listening to her lungs, we heard a crackling, and her airway sounded a bit blocked. We decided to take her to the E.R. down the street to get a chest x-ray. Knowing pneumonia takes around 24 hours before the infection will appear on diagnostic imagery, we almost chose to wait. Thankfully, we didn't.
The images showed pneumonia in her lungs, which means she probably had aspirated earlier in the week, but we just were unaware. And of course, she could not tell us of any discomfort until it reaches a more serious threshold. That's just the way it is with Kara's Rett Syndrome. She might be minorly sick, but sometimes we can't see the symptoms and her "complaints" becomes confused with everyday needs, like for a diaper change, for hunger, for thirst or perhaps even just about boredom.
I sometimes feel guilty for not being omniscient about Kara's needs. I understand that we are only human, but that doesn't stop the guilt when we miss things, even undetectable things. Sometimes I get defensive and feel the need to over-explain why we could not have known there was a problem. So, if I've done that here, please forgive me for that as well.
With all the events of the day, we did suspect a problem. The E.R. confirmed it. And we chose to transfer Kara to the hospital where her primary doctors worked. All this time, we and the doctors were not aware how stressed her little body was. Within a matter of hours, she went from a plan of hydration, antibiotics and observation to a having discussions of what life-saving methods were available if she became worse.
In the late afternoon, Kara gave everyone a dreadful scare. She had continued to vomit through out the day, but this time she began choking during the process. Truth be told even the doctors were not sure whether this started as a coughing from her lungs or a heave from her stomach. Either way, globs of black fluid were spewing out of her throat. Her color changed to blue...then grey. Her O2-Sats crashed below 60 and didn't recover until Kristina began suctioning out her mouth.
Soon a team of nurses took over. After a few minutes her airway became free. Several minutes more of suctioning and the remaining fluids were cleared from her mouth, nose and throat. Another fifteen minutes passed, and Kara's bed was being transported to the Pediatric Intensive Care Unit.
The good news is there has not been another event like that since, but we are still days from getting her well.
As a parent, I have watched my daughter stop breathing and turn unnatural colors more often than I care to count. However, only twice have I been in fear for her life. And this event was one of the two. I'm sure others can imagine the panic in my heart, watching these events unfold. It is not an experience I wish anyone else should have to endure.
I tell this tale not to elicit sympathy or to make others feel guilty for having typical children. What I realize in these moments is what is truly important. Unfortunately, some lessons in life cannot be known without a bit of suffering - and the lesson here is how precious my daughter's life is. She is precious not because she is a child and not because the disease makes her fragile. She is precious because she is a gift from God, entrusted to us.
As catch phrases like "the struggle is real" are used in everyday, first-world problems, when an event like this occurs, it reminds me of which things really are a struggle, that I complain too much about the normal nuisances of life and that I think too highly of myself and my accomplishments. I don't lean enough on the comfort of Christ to get me through the normal, but I call on Him in a crisis. My prayers become more like the rubbing of a magic lamp to conjure a genie than the walk of faith I should be traveling.
I share this to ask you to stop and think about your life, about how you handle the daily sweat, what you take for granted and where you find your source of comfort. The struggle is real, but it is often not what we label it. Take a moment to think about what is really important and to appreciate this gifts God has given you. Don't let them go unappreciated because the Good Lord giveth, but He can also taketh away. The time we are custodians of His blessings is not a guarantee.
Then Jesus said, “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you. Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls. For my yoke is easy to bear, and the burden I give you is light.”
     Matthew 11:28-30 (NLT)

For I have given rest to the weary and joy to the sorrowing.
     Jeremiah 31:25 (NLT)

He gives power to the weak and strength to the powerless.
     Isaiah 40:29 (NLT)

...not by force nor by strength, but by my Spirit, says the LORD of Heaven's Armies.
     Zechariah 4:6 (NLT)


  1. Tears in my eyes, bless her heart! Bless you and Kristina as well, its a journey with these kids (Zach is nonverbal, developmentally delayed, gtube fed) I can imagine the fear you felt, I have been in that spot, its nothing I would wish on anyone. Definitely reminds you what is truly important. Our prayers for Kara and y'all are continuously going up!

  2. Thank you for sharing this. Continued prayers for your daughter and your family.

  3. Thank you for sharing this. I will continue to pray for your daughter, you, and your family.