Only four letters. L I V E … It seems so simple. Just live, right? But for the special needs mom, it is something that is sometimes forgotten. Misplaced. Even lost.
The day I became mom to my first special needs child, I lost my identity. Everything radically changed the moment the little five pound almond-eyed bugger took her first breath. That is what has probably surprised me most about this journey, other than the fact that I nearly lost my ever-loving mind when she had to have three major open heart surgeries…..oh, and then there was that time she escaped our beach house and got lost….and when her leg got trapped in our leather sofa, forcing me to call four firemen to set her free….and when she turned blue while choking on a piece of candy she found, and….. Dear Lord, who am I kidding? This whole darned journey has been hard.
But back to the whole identity thing:
When people consider me now, they ALWAYS consider my special needs kiddos. That never happened when I was a mom with only typically developing children. Until I had special needs kids, my family had been treated as a package deal. A spectacular package wrapped in shiny wrapping paper and topped with a big bodacious bow. After she was born, however, it was like our family package was wrapped in an old paper grocery sack. The bow? Twine. Or worse…a piece of used shoestring. It seemed as if we went from dazzling to defective in one fell swoop.
A simple dinner invitation, for instance, became complicated: “I’d love to have you over for dinner, but I need to know how to prepare our home for her.” Prepare a home for her? As if she’s Hurricane Hopey….Really? She is a child.
Church? An impossibility: “We love her and your entire family dearly, we really do. But…she misbehaves, she doesn’t listen, she sometimes throws things, she seems frustrated, angry, sad….etc.”
Restaurants, Theaters, Social Gatherings….unwelcome, unwanted, and often rejected.
We even had a few neighbors who got together and decided their home values and re-sell could be impacted by our two special needs children: “Nobody would ever want to move in to a house that backs up to a home with two Down syndrome kids. Who would want one kid like that? And you adopted a second one?”
Whoever came up with the quip regarding sticks and stones breaking bones…let me tell you, words do hurt.
With my typical children, we were always ushered in to any situation with open arms. Greeted, hugged, and high-fived. Looking back, I took that acceptance for granted. Enter special needs kiddos, and eyes rolled, heads turned away, and people started whispering. You think I’m exaggerating? Then you are not the parent of a special needs kid and definitely not in the paper sack club. haha.
I love people and have always been very social, so this change of tide was difficult for me. I’m ten years into this journey, and sometimes I’m still shocked by reactions I encounter due to my disabled kiddos. So, when I talked my husband into purchasing a second home for our family in my home town….it was a surprise to everyone but me. As the primary caretaker, I knew what I needed. I needed to be treated like me again. I needed to find me again. Sure, people in my home town had heard about my special needs children, but I knew they knew me first. As just me. Not as a special needs mom. And I was willing to bet the bank that they would treat me….like me. Fingers crossed and faith in the goodness of all I had grown up with, I moved, part time, to Cleveland, TN. My husband and I would live separate most all of the time.
I’ve had that second home for nearly fourteen months now; it has been a God-send. As expected, people I’ve known all of my life treat me like they’ve known me all of my life. To them, I am not Melanie Hollis….I am simply Mel, the gal they remember. And because they love and accept me, they naturally love and accept my kids. They call them by name, greet them with hugs, and reliably give me intentional doses of encouragement. In many ways, the people in my hometown have healed me, especially those who at one time played such a huge role in my life. I only need to catch a glimpse of a familiar face, a face that once represented the carefree nature of my youth, and my heart leaps. Every word they say to me or to one of my children, every act of service they do to help me, every smile, every warm embrace….I tuck safely into my heart.
That is the way of the special needs family; you do whatever needs to be done to survive. And if you figure out a way to thrive? Well, you are pulling rabbits out of hats. Statistics are staggering. Between 80-90% of all couples who parent special needs children end their relationship with divorce. Basically, if you see two people who have parented their special needs child into the adult years, and their marriage is still somewhat intact….even if it’s hanging on by a ratty piece of thread….you are witnessing two individuals who are as stubborn as old mules. Seriously. It’s a modern day miracle.
The reason is pretty straight-forward.
The primary caretaker usually gets worn down and worn out. As for me, I felt I was going through the monotonous motions of life each day, instead of really participating in life, and I lost myself. The stress of always having to be on and aware became exhausting. Figuring out how to re-direct behavior and to teach new therapy methods to children who were often resistant to learn became overwhelming. With little sleep and long hours of care, without a sufficient support network, I was buried under the weight of it all. At the same time, my adopted daughter, Natalie, was battling severe emotional issues due to a diagnosis of Reactive Attachment Disorder. There were times I fantasized about disappearing from life all together. If someone had offered me a one-way ticket to a deserted island, there are days I might have taken it.
Meanwhile, my husband was the sole provider in our household. In special needs families, it is common for one parent to become the primary caretaker while the other takes on the role of provider. Over time, the provider often gets more and more caught up in a job as a form of escape from the stress at home….while the caretaker gets more and more bogged down. Well, my husband was busy juggling a full time job that requires travel, late night meetings, and around the clock availability. He was doing the best he could do….but it wasn’t enough. I needed more than financial provision and security. I needed more than the one to two hours a day he was able to give. In response, I finally hit the fight or flight stage. It was give up or fight for me.
So I went home.
I hired a regular babysitter three times each week.
I gave myself permission not to worry about how others might judge me and my life.
I hired a physical trainer to push me physically, started writing a fiction novel series as a means of therapy for me, and made time for dressy dresses and high heels.
I gave back to my town by opening a non-profit that provides free trendy clothing to local at-risk teen girls who are struggling.
The other alternative? To wither away and to be of no use to anyone.
Now this post is not meant to be about moving home or about hiring babysitters or about how cruel the world can be to those who are the weakest in society. It is also not intended to bash the special needs way of life. As special needs parents, we love our children so much we ache inside….there is no love that can compare. And if given a chance, not one of us would go back and do life without our kiddos. What I DO want to convey, however, is what I wished someone had said to me on that day my daughter took her first breath, the day my identity changed forever. And that is this:
There are no wrong or right answers. There are no mistakes either, unless you give up and take that one-way ticket to the deserted island. If you are new to this special needs journey, or if you are further down the line like me…just do whatever you need to do FOR YOU.
Don’t lose yourself, because you are the best possible version of yourself for your children.
Lose the guilt.
And remember to LIVE.
Love, Hugs, and all of my support….