I often describe raising a child with special needs as a journey—one with many twists and turns. One definition of “journey” is: “traveling from one place to another, usually taking a long time.” When you begin, you don’t really know how long your journey will take, or exactly what it will look like. But very early on, all of the special parents I know make the choice to endure it for their child no matter what lies ahead.
While it is almost impossible to anticipate a twist or turn, we have a special parent sense that only those have had the privilege of parenting a child that is differently-abled. This sense is almost indescribable—it’s just there when you need it.
It’s not something that you receive instantly; I really believe it is mastered when we go through “survival mode.” I say it often, but this mode is when you are doing everything and anything to get your child towards the next goal. You research, ask questions, get second opinions, and usually don’t sleep much. We don’t realize it at the time, but we are mastering this unique instinct that is specific to our child and his or her needs.
I spent many years in and out of this mode to know that you can’t stay there long—it drains you, so you have to take time to rest and ride it out.
My column more often than not focuses on making sure you rest and sit still on the side of the road once and awhile. We need to refuel and refocus….
But at the same time, I learned first hand recently that sometimes when we least expect it, a hairpin turn can come out of nowhere and thrust you back to your first days on the journey. It takes you by surprise, but you are somehow able to move forward. The good news is, that because we were chosen for this amazing task, we can confidently take the turn. The special sense just shows up. You go into mode, you don’t miss a step.
Because of my daughter’s disability, her balance is compromised. She uses every morsel of energy to stay up while walking, even though on the outside, she appears to be just fine. She did not use her orthotics to walk very often this summer, and we were on our way to trying to wean her out of them…until our unexpected turn showed it’s face.
She was walking barefoot down a flight of stairs, and fell as she attempted to compensate through the last few steps. She’s not a stranger to falling, so we anticipated she would have a few bumps and bruises and she would be fine. But like most hairpin turns, it was not a “typical” fall.
She ended up in the emergency room with a concussion—and while we were there, this sense of being strong for her just resurfaced—I really didn’t have to think about it.
I didn’t realize it until the ordeal was over—but I’m not the only special Mom that has it—you have it too.
You see, you don’t know how to begin to try to explain this until it happens to you. Some of you may know exactly what I’m talking about, but there may be some of you that have not yet experienced this.
When you do, my prayer for you is that you will remember my words, and they will encourage you through whatever your individual turn may look like.
I am not in any way suggesting that you live your life “on-guard” waiting for your unexpected bend in the road to happen. Take it from someone who has tried it—doing so will exhaust you to a point of not being able to be your best when your child needs you. But I want to you to know that when it does happen, don’t question your ability to ride it out. Your special parent sense will resurface, and you have to trust it.
No matter how many days or months you’ve walked on your journey I’m sure you’ve had a chance to fill up on this instinct. Each time you support your child through a bump in the road, it automatically happens.
In the midst of an ordinary day, we must remember that God chose us to do the extraordinary when our child has a need—trust the special parent sense that is inside you.
It was there when I needed it—and it will be there for you, too.
~Maria
