In High School, inspirational speakers came to encourage us to avoid the trifecta of stupid teenage mistakes: prison, drugs and pregnancy. One speaker specialized in avoiding the road to prison by handing out plastic spoons, reminding us that in prison you can only use one utensil: the lowly spoon. While teachers handed us the plastic flatware as we exited the creaky bleachers he left us with a parting thought: “There will always be someone worse off and better off than you. Always.”
I hear this mentally repeated whenever we take our daughter with Cerebral Palsy to medical appointments and we see children who are bald due to grueling rounds of chemotherapy or families dealing with children’s emotional and behavioral issues. I count my blessings and say to myself, “Self, you are lucky.” I look at my daughter happily tooling around in her wheelchair the color and sheen of nail polish while I fight the urge to run from the repetitive questions and forms in triplicate to skedaddle in the direction of the nearest Krispy Kreme.
There are times I forget how the world sees my daughter: a cute girl who walks with a strange gait, who most-often is drooling and who uses a communication device to speak. I forget that she resembles a broken marionette that has snipped her strings and says so much with a smile. What I see is a strong, capable, intelligent, goofy and amazing child that lightens hearts and communities that are blessed to know her.
One of hardest things about having a special needs child is that intense season of a child needing your help usually reserved for those first few years gets extended. Basic needs for hygiene, communication, and self-help skills extend into the future as a huge question mark—always a few steps beyond—never advancing, never falling back, just steady and straight in front of you.
We all have our highs and lows in life and pain is pain whether you lost your mother to cancer or whether your child struggles with a disability. My experience doesn’t mirror every parent’s and my lessons aren’t representative of every family who struggles with a special needs child. But I have learned a few things that may prove helpful to all parents:
- Patience. Having this child forces me to slow down which is a challenge because I am forever running late. When a child takes three times as long to get dressed, walk down the stairs and twenty times as long to tell you what’s in her head and heart, you learn to wait. And wait. And breathe. And try not to growl. Trying to figure out what she is saying has made me listen like never before. I sometimes tune people out, especially children who repeat themselves, but when she is trying to tell me something, I stop everything and study her eyes, lips, and tongue–anything that will give me a clue as to what sounds she is forming. Cracker? Kitten?Carburetor? So, take time to breathe, to listen and truly be in the moment.
- That I’m not enough. I tell myself that this isn’t my burden and I am not the one with this particular disability. Many days I feel ill-equipped to handle her challenges and am clueless as to what comes next. I feel like we just crossed the Himalayas with some educational, physical or health challenge only to find the Rocky Mountains are on the horizon. However, I am assured by my faith that she (and all children) is a gift from God and I dearly, daily and desperately need Him to do this difficult and rewarding calling of being a mother. Remember that you are not alone and you are capable with the help of those around you.
- Choose to be grateful. As with most trials in life, your attitude will color it. I give myself permission to say it’s hard because it is; but it could be harder. She can walk and run when many children with her condition cannot. She doesn’t talk clearly but she is intelligent enough to use a communication device. I choose to be grateful for all the progress she has made and for all the people have been a guide and support to us along the way. We choose to see what we want to see. Make a daily effort to see the good that you and your children have accomplished and felt—there is always something to be grateful for.
Sitting in the high school gym twenty years ago I could not have known how his words would resonate in my life. There are always people in seasons of hardship as well as those who seem to be on an upswing. All I would add is that you never know what life is going to dish out, so grab your spoon and dig in.