I was having a discussion with my friend Sarah the other day about her daughter, Mila 3 1/2, and about how getting a bad cough meant she needed an MRI to check for a brain bleed. Now we all know that may seem extreme, as most kids with a cough don’t need to go through such an involved medical procedure, but Mila is not most kids.
After spending most of her life considered a medically fragile kid, she had a HUGE turn around. To an outside observer it would appear like a miracle cure, and one might forget how sick she had been. But appearances can be deceiving.
One thing her mother must always be aware of, is that she will always be at risk for certain problems as a result of her diagnosis. So although several surgeries changed her immediate future…they also lead the way to a host of “what if’s”. Sarah says,
we can never let our guard down. She’s deceptive – she looks so much better than her medical diagnosis, and it is SO EASY to say she’s fine, we almost lost her because she looks SO GOOD.
The truth is where Mila is concerned she cannot let her guard down, ever. If anything she needs to be more vigilant. Now more than ever, she needs to read the “signs” and become an interpreter of possible symptoms that may indicate brain injury or heart failure.
She also admits when it comes to reconciling the image of her sick child with the image of her outwardly healthy child she has trouble.
I haven’t figured it out, I don’t know how to reconcile and its been three and a half years.
I wonder if that’s how I will be too, after all the surgeries, and once the tracheostomy and/or G-tube is gone. Will I always be searching for signs of retractions or dehydration? What will I do when the Pulse Ox and Oxygen are no longer here?
Will I ever rely on my senses as confidently as I rely on those machines?
Will I ever trust myself and let my guard down?
Janis chronicles her son’s medical journey at Sneak Peek At Me. She is an advocate for medically fragile children and families living with a rare disease diagnosis.