An Insider’s View Looking Out

“Just the three of you?” they ask.
“Yes, just the three of us,” we reply, every time we walk in to be seated at a restaurant.

No one can tell, but we know, of course, that it’s not just the three of us.  It’s just that the three of us are the only ones people can see.  This last week I had the opportunity to attend my fifth Annual Family Conference, hosted by the National Tay-Sachs and Allied Diseases Association.  We have attended every year since we received Miss Elliott’s diagnosis.  I knew after our first attendance, that I would never not return.  Even now after her death, I continue to return, year after year, not only for aid in my own continued healing, but also because unfortunately, I have a very special knowledge base that I feel it is my duty to assist in transferring to newly diagnosed families attending for their first time.

It’s hard to describe the level of comfort you feel in being around these perfect strangers who look and sound just like you, whose daily lives so closely resemble your own.  Especially when no one else around you in your daily life can compare or understand first-hand the way they can.  It’s an instantaneous bond that’s formed upon your first meeting with any of these families.

In my travels last week I unexpectedly met up with another family at the airport in my connecting city, who were traveling to the conference as well.  This family has not one, but two affected children.  I eagerly embraced them and their children, and we struck up conversation about our impending weekend.  Time passed and as the boarding calls began, people shuffled around, and I went back to my seat with Skylar and our bags in the terminal.  This family’s belongings were quite cumbersome.  They had special seats, a special stroller, medical devices and machines.  As the mother turned on the portable suction unit to clear her son’s airway when he began to gasp and gurgle, the onlookers ability to keep from openly gawking waned significantly.

Suddenly, unbeknownst to this family, as they went about their daily routine of caring for their children, all the eyes in the surrounding area were firmly fixed on them.  It was as if the room had darkened and a spotlight shined only over their heads.  It was an odd position to be in; an insider looking out.  I was that mother.  I was that family. But, in that moment, no one could see that.  Traveling with Skylar, I looked like any other “normal” mother.  You would never know that I had lived the intricacies of their life at one time myself.  I saw the stares, the whispers, the shifting away of the bodies around them.  While everyone had their eyes on them, I had my eyes on everyone else.  I had never watched this scene play out from this angle before. It was unnerving.  I wanted so badly to protect them, to shield them from this.  I wanted to stand up and yell to the onlookers that they couldn’t catch what these children had, or to stop looking at these people with such pity in their eyes.  I felt my blood boil, and my stomach turn.

Like I said, it’s odd to be an insider in the life of family with a terminally ill child, yet look like everyone else.  To look like an outsider, like the rest of them.  A “normal” family, if you will.  The only time I feel normal, is when I’m around the other affected families at this conference because the truth is, I am an outsider, from normal society, most people just can’t tell anymore because Miss Elliott is no longer physically with us.  When I’m with these families, I belong.  We belong together, for better and worse, in love, support, and strength for one another.

One of the new families that I met, attending for the first time this year posted this description
on their daughter’s Facebook page after their experiences over the weekend.  I couldn’t sum up the feelings of attending this yearly conference any better than Annabel’s mom, Casey has done:

“This past weekend, our family, along with about 60 other families, attended the National Tay-Sachs and Allied Diseases Association’s Annual Family Conference. I cannot even adequately express what this experience was like for me. Maybe half, or less, of these families brought their children currently battling either Tay-Sachs, Canavan, Sandhoff or GM-1 (all very similar diseases). The other families have already lost their children to these same awful diseases, but they continue to come every year to not only reconnect with the lifelong friends they have made at the conferences, but also to offer support and advice to the new families like ours. These long bereaved parents are not only surviving, but smiling and laughing even. To be able to see living, breathing examples of what it’s like to walk through this fire and come out on the other side is such a blessing. I often wonder if a parent can ever be happy again after going through this, and the answer is a resounding YES. The way these parents honor their children with their fundraising and advocacy is amazing. They also provide us new families with invaluable information regarding managing this disease. Due to the rareness of this disease, there are no “specialists” in the medical community, so the parents become the experts. If I have a question about a medical or equipment issue, I can ask these people and get an immediate response. They have a genuine desire to help.Another wonderful aspect of the conference is just feeling normal. It’s the one place where every single person knows what it’s like to be me, and there is no pity and no praise for being strong. No one is afraid of me or my child and no one says the wrong thing. Even though we may not have anything in common except this disease, the bond it creates is so strong. I am grateful for these people and am grateful for the NTSAD for providing a way for us all to connect. If you want to read more about this organization, what they do for families like ours, and what you can do to help our kids, visit”

Annabel and her mom, Casey.

One final thought I want to leave you with is the sentiment portrayed in the photo below.  Every single one of these beautifully smiling women have lost a child.  How can we all sit there and still have the ability to smile, to continue on, you may ask? The answer is easy; because we have each other.


3 thoughts on “An Insider’s View Looking Out

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