Since we’ve returned from the NTSAD Annual Family Conference several children in our community have lost their battle with these devastating diseases.  It’s oddly unsettling how these events; diagnoses as well as deaths, seem to occur in cluster form.  Beginnings and endings.  As is the circle of life itself, such is life as part of the rare disease community.  When you’re dealing with diseases that only allow for a few years as a total life-span, unfortunately, this process is exacerbated immensely.

A little over a week ago, aside from the phone call and messages I sent via email, I ventured out specifically to purchase a card to mail to a family who lost their special little girl.  She was just three years old.  The same as Miss Elliott.  She was her family’s world.  Suddenly, the life they had known and were so focused on cultivating and maintaining, with a rigorous feeding and medication schedule, positioning and comfort care, as well as every attempt possible at memory making was gone.  Just like that.  Now her family has to adjust their routine to suddenly allow for the “freedom” (terrible word, as if their loved one had been a shackle), that they most likely do not want the luxury of having.  This young girl’s older brother, the only other child in the family, will now be forced to live life not as an only child, but as the only living child, just like Skylar has had to do.  Not what his mother had planned or wanted for him at all.

As the days passed and I had trouble knowing what paltry sentiment to express in the card, as nothing can do comforting justice to the loss they’ve experienced, and then missing the mail truck over and over, too much time had passed and at that point it would have seemed  like more of an afterthought, so I never sent it.  A good intention, but we all know what road is earnestly paved with those.  The worst part of not sending this card was tucking it away in my drawer for future use.  What a truly horrific thought.  I already know that at some point yet another child will die and this card for sympathy in the loss of a daughter will be queued up for use once more.

Shortly after this child had passed, another took a steep turn health wise and suffered that same terrible fate.  These precious, perfect children fight so valiantly, and yet the end is the same for all.

As if living through you’re child’s life and death as a very medically fragile, terminally ill person isn’t disturbing enough, a sort of secondary effect, or phenomenon of happenstance seems to occur with many of the parents like myself.  At first, when your child is diagnosed with a terminal illness and you’re able to gain your bearings enough to carry on, you may experience some level of acceptance.  Whether you want to or not, there’s no altering the course of your path so acceptance may come your way begrudgingly, but you have no choice in the matter.  You decide you don’t like this, you hate it, but you’re paying your dues here, and as such are absolved of any future debt.  The problem is:  it isn’t true.  You’re not in the clear to side-step cancer, car accidents, or any of the other atrocities of life.  Once you realize you cannot control the future, even after suffering the world’s worst heartache, you’re back at square one, except you’re not.  You’re worse off because now you live with the paralyzing fear that something will happen to your other child(ren) as well.

It seems that most mother’s in my position, those who have experienced the death of a child, all suffer from this phenomenal amount of fear that reigns over their lives and causes them to hover over their children’s every move.  These fears are indeed paralyzing.  A restriction from a typically functioning life, if you will.  I can barely stand to let Skylar out of my sight.  On play dates and sleepovers I’ll call the parents to ask if she’s “behaving herself”, when really the reason for the inquiry is to have confirmation of her wellbeing.  I find myself not wanting to take her into crowds or even simpler places, such as the roller skating rink she so often begs to patronize (too hard to keep an eye out as she circles ’round and ’round). It’s unnecessary and controlling, logically I know this, but emotionally, I can’t help myself.  No one ever, ever thinks they can get through losing a child.  Once you’ve been forced to, you know you can, but you never, never want to have to prove your capacity for strength and resilience regarding one of your children ever again.  You try as hard as you can to surround yourself in your own protective bubble and never leave its perimeter.

As the clustering of terrible news in our community continues, I learned that one of my dear friends, across the pond, as they would say, who has already suffered that unimaginable loss, was suddenly struck with another paralyzing blow.  Her healthy older son, her only other child, was diagnosed with bone cancer.  I read this information as it came across the newsfeed of my phone and my heart sank.  It sank for my friend, but also for me.  This was an incredibly selfish feeling to have, but I couldn’t help myself.  My fear took over and my mind turned to my Skylar.  I broke down and cried for my friend and the position she’d been put in.  I cried at the thought of being her.  The worst of what she said about it was that she had to explain to her son what was happening to him.  The shock of such a notion.  No one should ever have to entertain this thought.  No one has to explain to our affected children that they have Tay-sachs, Sandhoffs, GM-1, or any of the other allied diseases.  She now had the daunting task of telling her fully cognizant child what exactly he was facing.  The definition of agony as a parent.

How does one do this?  How does one find the courage to keep going, day by day, not only for themselves, but for their child as well?  A Dragon Mother has no choice.  A Dragon Mother puts her children first, every step of the way, and while she may be stressed, exhausted, worried, or completely broken down, she keeps moving along seamlessly because the protective all-enduring love she has for her child is a spring with an endless flow.

Dragon Mom:  a term coined by my friend, Emily Rapp, the mother of a child with Tay-Sachs herself.

“We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.

NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high.”

The mothers and fathers in my community are all Dragon Parents.  We know that most outsiders are afraid of us, or rather, of becoming one of us.  The thought alone is usually unsettling enough to keep them at bay.  It makes it increasingly more difficult as time goes on to associate with those outside of our dragon’s lair, but matters to us none in the least.  All that matter’s, at every turn, is our children’s here and now.  This is the only thing we can concern ourselves with.  We will fight for them with every ounce of our being.  We will absorb the fear and frustration, the discouragement and pettiness of the rest of the world, and we will exude only love, in it’s purest form toward them.  A mother’s love trumps all.  Our bodies have at one time, miraculously consisted of two hearts, and our children are the only ones who know the sound of the beats of ours from the inside as well as out.  Every beat of my heart is a call out to my children, and the beats of theirs, the echo back.

You can read Emily Rapp’s article, “Notes From a Dragon Mom”, here:
http://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html?_r=0