I’m sure you’ve heard people say, “Enjoy every moment with your child, they grow up so fast.” The statement is so true — they do grow up fast, but when you are raising a child with a disability, “enjoy” is a word that some parents can be intimidated by.
When you first start out on your parenting journey you have all of the essentials in your backpack: diapers, wipes, bottles, blankets, etc…all of the things you anticipate needing to start this adventure. But when life hands you a sharp turn in the road and you find out your child has a disability, you have to suddenly dig deep within yourself to juggle the regular backpack with all of the essentials, while also carrying a bag that was thrown at you without warning. This extra duffel bag is usually big — it has instructions in it that are written in a different language. The text seems to be that of every professional you have met that also speak this language, but you feel like a foreigner in your new-parent skin.
You don’t understand anything inside this extra bag and are not quite sure where to begin. Because you have no other choice, you dig into this bag with all of your heart and mind. You take a crash course in this new language that has entered your life; this course is what I call “Survival Mode.” It is the automatic parent of a child with a disability sense that you were born with that allows you to gain the muscle strength to carry such a weight. You research and ask questions — you find others along the path that may have a bag that looks like yours and maybe is even a little bigger than yours, and you see that they are still walking upright — they seem to have no problems with the extra weight so you walk behind them, and want to follow in their footsteps. You want to know how long they have been in “Survival Mode” and how they are still walking because you are sweating and out of breath, but they seem to be fine (in good shape) and they have endured the journey and are surviving.
All the while you and others are on this road, all of us in different legs of the journey are still carrying the essential backpack. The feedings, the diaper changes and the everyday parent decisions are still on our shoulders. They haven’t taken a back seat to the “Survival Mode” duffel bag, they still need to be attended to. Many of us are also caring for a few other kids who have their own book bag….and a household and often times a job outside of the home.
So as we are wrestling with all of these things on our shoulders as we walk on our journey. How are we supposed to take the time to “enjoy” the scenery? How do we take in all the sights and sounds that we notice along the way and continue to be effective?
It takes time and intentionality. My prayer for you today is that you will learn to stop and zip up the duffel bag, take a deep breath and truly take in the beauty that is all around you. The beauty of the smiles, the small milestones that are being met — and celebrate them.
The milestones may not look like those of the parents who are only carrying a regular backpack — and that’s OK. Train yourself to see the small victories — focus on the good, not the bad…the cans, not the cant’s. So one day, when you are standing at one of the many hills that you have climbed while the contents of your duffel bag are scattered all over the street, you can hold your head up high and be proud of yourself, knowing that you truly are surviving “Survival Mode.” You are transforming from surviving to thriving, and enjoying every step.