I have been asked what it is like to have a child go through the process of being diagnosed with a life-long chronic disorder, to be told your “perfect” child will endure trials and tribulations for the rest of his life, facing an invisible demon. How can you describe that very moment, when your life completely unravels from both ends? I have thought long and hard about this question. Looking back on our lives before the onset of symptoms seems so far in the past, almost a lifetime ago. What is that like…
Imagine being on your way to your favorite place; perhaps it is the mountains, or the beach or wherever you feel most at peace. Think of your happiest spot on earth. You and your beautiful family are in the car on your way to this wonderful, amazing place. Now imagine a car coming from the opposite direction swerves into your lane and is going to hit you head-on.
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How can this be? You have done everything you were supposed to do. You were going the speed limit, watching the road and staying in your own lane. However, it is still happening. There is no way to avoid it, no way to escape the impact; it is inevitable.
Everything brakes to slow motion, and you hold on tight bracing for impact. In that moment, you are looking around and can see the utter chaos that has become the inside of your car. Items not secured down are drifting through the air, the sound of the brakes are squealing in the background, the smell of burnt rubber is all around. Then you begin to feel the weightlessness as your vehicle flies in a tumbling catapult through the air. You hear the terrified sobs from your family, not knowing what is to come. You watch as the steering wheel rips apart and an airbag deploys. You know you need to stop what is happening, to fix everything, but you can’t. All you can do is brace for impact.
So as you hold on tight, bracing, you breathe. You run through all of the possible scenarios that may occur, and you make peace that if when all is over, your family is still intact, you can get through this and rise above it. Finally, the car lands to the ground. You realize you have been holding on so tight, to ensure what you know does not slip from your fingers and disappear.
The terror and chaos have not ended, in fact, there are now distant sounds of sirens and people all around asking if you are all OK. You try to speak, but cannot get the words out. You realize you are still holding on for dear life. Although you have landed on the ground, you continue bracing, not knowing what the future will hold. In time that grip loosens, you stop bracing and you breathe. In absolute bewilderment, you just breathe.
That is what it feels like.
If you are currently bracing for impact, continue breathing. Know you are not alone, and you will get through this; perhaps even stronger than you knew possible. Look for those moments where life still feels as it should. Cherish them, as they will help to get you through. When you are finally able to stop bracing and loosen your grip, you will find your “new normal.”