A Special Needs Mom’s Unspoken Answer to ‘Are You OK?’

Twenty-one long months ago, our lives were turned upside down by the brightest blessing we have ever known: the youngest of three and one who was so excitedly anticipated by all. Little did we know she would also be the biggest challenge this family would ever face. At 4 months old, she was diagnosed with Worster-Drought syndrome, and our lives changed forever.

It’s a form of cerebral palsy so rare even her doctors don’t fully understand it. It’s almost completely invisible on the outside with the exception of a permanent feeding tube and excessive saliva, yet its ability to completely change a life should not be underestimated. The battle for control of her tiny body begins in the heart of a little girl who might never be able to drink without fear of pneumonia, lie down flat without drowning in her own secretions or even say those magic words any parent longs to hear: “I love you, mommy.”

In a past life I was a career woman who loved spending time with family and enjoying nights out with friends. I never really appreciated the possibility that some moms don’t get it so easy, or that one day it could be me. Now I’m “that mom” sitting next to the hospital bed far too many times to count. I’m the mom everyone knows, but no one truly understands. I’m the mom everyone feels for but has no idea what I really feel inside.

And then that dreaded question comes: “Are you OK, mom?” It could come from anyone — a nurse, a friend or a colleague maybe someone I don’t know at all, but it’s answered subconsciously with so many things I, as a mother, could never possibly say out loud. So instead I answer with a fairly standard and well-practiced response while the things I really want to say eat away inside of me.

I want to tell them I’m not OK while my child has to live like this, but instead I tell them she’s still smiling as always.

I want to tell them how jealous I am of their day trips to Legoland and Peppa Pig world while my daughter lies here sick, but instead I tell them the hospital is looking after us so well, it’s like being on holiday.

I want to tell them I’m desperate to be at home in the arms of my family with no monitors and machines, but I can’t say that either, so I tell them it’s a good opportunity for my daughter, Emma, and me to have some quality time alone.

I leave out the part where I don’t stop blaming or punishing myself for any of this regardless of what caused it, and I certainly never tell them how my heart breaks every time she cuddles me because I know I can’t take her pain away.

I am constantly reminded of how strong she is and how she must have got that from her “mom,” too. I don’t feel strong, I feel broken, and when you ask how I cope, the answer is simple: “I don’t!” Right now my life is measured in varying degrees of not coping. Some days we don’t cope more than others … it’s simple.

But amidst all of the unsaid thoughts, grief and not coping, there is a little girl who lights up my life. One who can walk into a room knowing that her huge smile will make other people feel better. And so all of those things I think but never say are made worthwhile when I see her endless courage, selflessness and perseverance.

She is quite simply the star of her show, and I will forever be her devoted backing group. If she can do this, then so can I! So it’s not really so much a question of “am I OK.” It’s more about, “Is she OK?” The answer to that will always be easy: “Yes, she’s perfect.”

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.