Parenting a special needs child is a journey we would never have imagined ourselves on, full of heartbreaking lows and miraculous highs that shape us into stronger people.
If I had been granted the power of seeing the future 20 years ago, I’m not sure I would have believed the life I have today was actually my own.
I wouldn’t have believed it was me standing by the hospital bed of a critically ill child. I wouldn’t have believed it was me substituting my beloved fettuccine alfredo with vegetables in attempt to support my child’s gluten intolerance and associated behavioral needs.
Heck, as a special needs parent, there are still moments where I don’t feel as if this could really be my life — those moments you feel like you’re floating above yourself looking down, barely recognizing what you are seeing unfold beneath you.
Is this really my life?
Do I have what it takes is to live this life?
After those moments pass, we come back down to earth, realizing that indeed this is our life. I think it’s time we also realize that all of us special needs parents undoubtedly have what it takes to live it.
I know some days it may not feel like it.
I know there are days you wonder how many fewer tears you would have cried without all the stress and worry. How many fewer minutes you would have spent unable to sleep while consumed with fear for your child’s future.
But after these stormy inquiries pass, there is space to think about things in a different light. You start to remember just how different you are now as a person, and as a parent, because of the challenges life has offered you each day.
You remember you are a fighter now.
You remember you need to keep fighting for your child, and when it comes to supporting them, even if it means less sleep and bags under your eyes, you’ll take the bags any day.
You think of how although it may be exhausting, you will go to 1 million appointments and specialists any given day if it helps you to learn more about how your child thinks and learns.
You remember that no matter how many low points or heartbreaking moments you encounter in a day, you need to keep looking for the light — the moments of light that counter the challenges that can be dark.
These moments of light shine so much brighter when they are contrasted with the dark.
You recall your child’s accomplishments. You remember to grab a hold of their achievements and gains in your mind, letting them rest and proliferate there because you know that focusing on their strength and resiliency will make you a more positive and effective parent.
You reflect on how parenting has stretched you as a human being. Being a special needs parent has stretched you farther than you would ever have imagined you could reach.
Being taught every day by witnessing your child that there are new and fascinating ways to see and interact with the world around you. That just when we think we know it all and have a firm grip or stance, they expand our view to see more — more selflessness, more compassion, more vulnerability, more potential.
You realize your outlook has evolved.
You will always see beyond the exterior now. Things aren’t usually as simple as they seem.
You see the world and others as the intricate, complex and amazing beings they are because that is also how you view your child.
In light of these reflections, you realize that not only do you need to keep fighting for your child (and yourself) but that you can and you want to. You realize that although this fighting journey can exhaust us at times, it really is a good fight, isn’t it?
This fight we’ve had entrusted to us is challenging, inspiring and beautiful, and as long as we continue to have the honor of shaping the amazing human being we’ve created, we know deep down that both ourselves and our child are ever so worthy of the fight.