Angela and Byron are now back in Oklahoma, closer to family. Davis is 11 months old and is enrolled in a program called Special Care. They provide year-round specialized education for children 6 weeks through 6 years (with or without disabilities). In addition, they also provide before and after care for school-age children up to 21 years old.
Having found a place where Davis could get all his therapies and educational goals under one roof was a huge blessing. That was definitely one worry off Angela’s plate. Unfortunately, one month later when Davis was 1, he developed pneumonia, and Angela and Byron spent a week in the hospital with him. After three additional hospital experiences, they learned their son was a silent aspirator.
As the name implies there are no overt signs of aspiration such as coughing, wheezing, or hoarse throat. So it’s a little harder to spot. Regardless of what type of aspiration, according to Cedars-Sinai.org individuals who aspirate have a higher chance of pneumonia. To prevent Davis from continually getting pneumonia, when he was 2 years old, he had a feeding tube.
Despite the feeding tube, Davis was making progress in other areas. He was able to sit up without assistance and even get into a crawl stance. But one of Davis’ most endearing traits was his laughter. I am told it emanated from the depths of his soul, erupting in an expression of pure unadulterated joy. Davis’ laughter is a precious memory his parents will always cherish.
When Davis was around 3 or 4 years old, he had an onset of seizures from which he never fully recovered and his health began declining afterward. On top of this, he was never able to go back and reach some of the developmental milestones he had achieved before those seizures.
Measuring progress
This brings up a very important question: how do we measure progress when it isn’t linear? When our child doesn’t build upon his skills, going from one developmental milestone to the next. Instead, progress stops. Or regresses. Maybe it fluctuates daily, where we’re never really sure what our child is capable of doing from one day to the next.
How do we as moms emotionally handle this situation? Because if we don’t deal with it, it has the potential of drowning us in a pool of depression, anxiety, frustration, anger, etc. It’s definitely a situation we need to avoid. So how did Angela deal with this?
Because in her case, Davis never progressed any further, despite physical (PT), occupational (OT), and speech therapies. Angela suggests we use a ‘different measuring stick’ when the markers typically used to measure success are invalid.
Step one: letting go
It’s a pretty simple concept but it’s a two-step process. Before we can even talk about using a different measuring stick, we need to let go of the one we’re holding first. This is step one.
This means we need to let go of our preconceived definitions of success, progress, and even failure. We need to let go of OUR expectations and OUR hopes for our child. It’s easy to write about but very difficult to do. It’s hard to let go of long held dreams. To make letting go easier, all we need to do is ask ourselves one simple question. Do we want our children to be who WE want them to be or who God created them to be?
Ultimately, I want my son to be who God created him to be, not what I THINK he should be. I’ve learned our plans tend to be so small, trivial, and limited compared to what God has planned for our children.
Step two: picking up
Once we’ve let go of our old measuring stick, the second step is to pick up a new measuring stick. This one doesn’t have a rigid system for measuring success and progress. Rather it’s about meeting our children where they are, looking at the world through their eyes and their body. Celebrating their victories, acknowledging their obstacles, and always remembering they are unique masterpieces lovingly made in the image of the Father.
But using a different measuring stick isn’t a concept only reserved for measuring our children’s progress, it’s also applicable to all areas of our life. Anytime our reality and our expectations don’t match, it generally means we need to let go of our measuring stick and pick up a different one. Angela’s husband, Byron, puts it this way “Your goals have to adjust to where you’re going to be, not where you want them to be.”
But some measuring sticks have become such a part of who we are, that it’s hard to relinquish, as Angela realizes when she has to make one of the hardest decisions she’s had to make about her family.