Recently my daughter was hospitalized for an autonomic crisis; she was incredibly sick and stabilizing her took 4 different medical teams, a lot of tests and procedures, and a few days in a hospital an hour away from home. Coming home meant accepting that she needed a Nasogastric Feeding Tube. An NG tube is essentially a flexible tube that is inserted up the nasal cavity down through the back of the throat into the stomach opening; it can be used for fluids or liquid nutrition. Because my daughter doesn’t need one 24/7, I had to be trained to insert and remove the tube as we need it at home.
A 13 year old has so much to figure out about their identity and place in the world that anything extra that makes them different is a challenge; especially when that difference is a tube taped to the side of your face. Come on, think about how you felt when you had what you were sure was a mountain size zit on your face and you had to go out into public. It is also emotionally draining to deal with a major illness that may well be a life time long struggle and the frustration of being poked and prodded for days. I know that she has a lot to work through and honestly I wouldn’t even presume to be able to make assumptions about that process for her.
But I can tell you about my feelings.
I am often reminded that special needs parents are “stronger than you think possible” to which I usually want to reply were we given a choice? But in this instance I do have to agree that we find strength where it doesn't seem as though any exists. During our hospital stay I smiled and took notes as each team of doctors came in and asked the same questions over and over again and explained what their plan for the day was. I tried to maintain my manners with each nurse or technician who came in no matter how tired or frustrated I was. I gave quiet assurances to those who called or texted for updates. I was, for all practice purposes, the super mom that is often alluded to by those outside the special needs community; you know the handle it all with a smile and lots of coffee on no sleep mom.
That’s the story we perpetuate in our circles; meme after meme visualizes the stronger than you think possible mantra for us. And for the most part, it is true. But I think it is equally important that we share the other side with parents who might just be entering the special needs world. See sometimes you keep smiling and saying you don’t need anything to each person who walks in that hospital room when inside you are screaming I feel like I am about to fall off a cliff and I don’t know what to do. Sometimes you can’t wait for your child to fall asleep for a while at night so that you can cry silent tears while surrounded by medical beeps and hums. You might find yourself walking out of the room at 2 in the morning desperate for a breath of air only to find yourself holding a stranger whose language you might not even speak because in that moment they can’t find all of the strength that they need for their child. You look for outlets that make no sense to anyone outside of the hospital experience—a free washer and dryer on your child’s floor or a blanket, sheet, and pillow for the parent cot. Don’t even get me started on the joy of nurses sharing the free floor coffee pot with you (I’ve been known to tell a nurse or two that I love them over caffeine in the middle of the night).
Then there’s the story about your child that doesn’t get told enough. It is the story where they are angry or frustrated or scared and you are their safe place. As their safe place, you are the target of their anger, frustration, or fear. Sometimes that means they want you to hold them and sometimes it means they either won’t speak to you or their only words to you are those of hatred. You know they don’t really mean it but you’re tired, overwhelmed, and worn down enough that it shatters a piece of your heart even though you’d never burden them with that on top of the struggles they are already facing. But if I am completely honest, in that moment you will feel loneliness like you have never experienced before and it hurts like nothing you will ever have ever experienced. And at that very moment it doesn’t feel like you are very strong.
It is in that moment that you need to have heard stories from others who have been there, others who can admit that it is okay to feel less than strong. It is okay to be hurt or overwhelmed or weary to your soul. Often times we don’t really see the strength until we are through the struggle; survival mode doesn’t allow us to be very reflective. We don’t see the strength or the light at the end of the tunnel until we are on the other side of whatever it is that we are facing. In the moment of crisis, it is without a doubt all about your child and what he or she needs and what you need to do to make that happen. But I think we need to remind each other that afterwards, it is okay, healthy even, to reflect upon our own feelings throughout the process. Just like any wound, your feelings need a chance to be soothed, bandaged, and allowed to heal. Experiences, hurtful or otherwise, do make us stronger but it doesn’t happen without a few scars.
If we truly want to mentor others through the special needs experience we need to share our own scars and help other parents see the beauty in the ones of their own. These scars aren’t failures or a sign of lack of strength; they are proof that we have walked the battle grounds and survived and will be able do so again as need warrants. They are the true badge of exactly what we will endure for our children and they show that like our children we are warriors.