Category Archives: Support

Help: On the Horizon vs. At your Door

It had been a particularly trying day. Disastrous, really. I had come home from grocery shopping in the middle of winter to find frozen pipes that had busted and thawed, and water was now gushing from the ceiling in my laundry room onto the wood floors below.

The valve to shut the water off to the whole house had frozen in place outside in the ground. After struggling unsuccessfully to wrench it free, I deemed it a lost cause and ran to the garage where I dumped the Rubbermaid trashcan full of garden tools onto the floor and frantically ran to place it inside the house to catch the water pouring from above. I opened the back door and began sweeping the water covering the floor outside.

Then I called my husband at work and screamed through frustration and tears into the phone; “GET HOME NOW”.

Taking to social media later in the day to lament and seek out commiseration, I suppose, I quickly had a message from my friend, Halcyon.

“Can I bring you dinner?” she wrote.

My immediate instinct was to respond with a no thank you, a how thoughtful, or that I appreciated it, but we’ll be fine. Then for some reason, I just accepted. I did want that dinner. It would help. It would be one less thing I would have to worry about in the midst of such a terrible day, and it felt like a win.

We were no strangers to acts of kindness at this point in our lives. Our daughter’s terminal illness and death were humbling in ways we never even considered needing to be humbled before her life, but the general idea of utilizing the village before you seems somehow, almost un-American. As if accepting help is an admission of our inability to pull ourselves up be our own bootstraps, rather than an act of love and concern for other humans that makes the world go ’round.

She brought warm soup and fresh baked soft bread from Panera (one of my favorite places). It was delicious. And so appreciated. The real gift she gave, however; was not the meal itself, and not even the act of caring, but the outreach she exercised to begin with. She didn’t let me know she could help if I needed, she didn’t even ask what she could do for us. She took action, and offered something specific, something concrete. She then placed it in a time frame and set to work on following through.

When facing life’s challenges, simply wanting to help or letting someone know you’re there to help is often not enough. Don’t make vague statements or plans that don’t amount to anything. While the thought is appreciated, the action always speaks louder.

When someone is struggling with a difficult situation, the burden of need is already on their shoulders. Don’t add to their overflowing plate by asking them to tell you how you can help. Often, it’s just too much for someone to even consider tying to navigate the map of help-need to be able to organize or convey those needs to you.

Perusing social medial recently I found a message from a friend, posted on her personal page, as a cry for help. She posted the following picture with the message, “Definitely me sometimes”.

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What followed, to be honest, as someone having been in need myself annoyed the crap out of me. The response, even though positive, genuine, and seemingly in an effort to be supportive, just wasn’t.

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Simply telling someone you’re there for them simply doesn’t do anything. If you’re going to talk the talk, you’d better be willing to walk the walk and actually be there. Don’t wait for a friend to ask for help. They are already overwhelmed, so they most likely never will. Just take the initiative and go out of your way to be there without waiting to be asked.

I specifically remember the phrase “we support you” being uttered to us repeatedly when Miss Elliott was alive. How? I always wondered, because with certain people those words seemed to be all there ever was. Nothing to back them up, no outreach, no follow through.

What was interesting to me about the respondent’s message to “call me” was that someone else, yet another friend, liked the comment, in what I can only assume was a show of solidarity, or a me too response. But even when my friend reiterated that she always needs someone, and implores her to please just come over, the respondent again defaults to asking the person in need to call her.

Don’t do this. It’s painfully obvious that this person should have picked up the phone at that very moment. Should have gotten in her car and driven over. She should have done anything worthy of being called helpful, but what happened here instead was that this person did, literally the least she possibly could have done, and probably mentally checked off a box in her mind that allowed her to continue in her thinking that she reached out, did good, and helped. She didn’t.

Sometimes in our attempts at care toward others we place them into our box, our comfort, zone, rather than stepping outside of that zone ourselves to look deeper into what they really need. I think we usually just tend to look for what may be easiest for us to offer. We fail, so often at truly going that extra mile.

This interaction would have left me feeling even more alone.

There are many things that everyone needs, so make a list of what would help you because chances are, it would help someone else too. Some simple suggestions of ways to help that I like to give are:

Mow the lawn
Wash and fold the laundry
Clean the house
Let them take a nap or get a hot shower
Bring dinner
Take the kids somewhere for a bit (a movie, to the park, etc.)
Bring groceries
Run errands
Help coordinate appointments
Go to their house to visit
Help them have a night out aloneand most of all
Just listen without trying to fix their problems

The Sunday We didn’t go to Church

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Two years ago this July I received an unexpected phone call from one of my very dear friends who was in somewhat of a panic. A panic only someone in my position could fully understand. Her daughter was turning sixteen and she needed a favor for her birthday. There was no party planned, no driver’s license test to be taken, or presents waiting to be opened. There was only the grave of a little girl who had died when she was just five years old.

“It doesn’t hit me like this every year,” she said. “It’s just that it’s her sixteenth birthday and I can’t be there to be with her. I’d ask my sister but she’s gone too.” My friend lives far away from where her daughter was buried, here in Seattle, all those years ago and even though her sister, usually able to be there, happened to be out of town as well.

“Would you mind taking some flowers to her?” she asked me.

She asked because she knew I’d understand. Not because I could logically comprehend what that must feel like, but I would understand because I was in the same position. Even though I had never met her daughter, she had died of Tay-Sachs disease just like my Miss Elliott had and we had been brought together in recent years in our shared losses. My own daughter was buried at such a tender age and I too would one day be missing those parties, presents, and milestones. I would be suffering the same heartache she was.

It was a Saturday when she called. Part of her panic was that time was ticking away. Her daughter’s birthday would be here the very next day and she just needed someone to be with her. She couldn’t stand the thought of her daughter being alone on such a special day. At this point, my Miss Elliott had been gone for just five months, and I had yet to have to celebrate one of her birthday’s posthumously, but I knew what she meant about not all birthdays hitting her like this. I knew that her grief comes and goes in waves, but always lingers under the surface of the veil of functionality. Today, it was ripping right through it. Today, it was breaking her down.

Of course I would go. We would leave in the morning, drive into the city, and navigate our way through the maze of the cemetery to her grave.

I heard a parable once that went like this: A boy and his mother were on their way to church. They stopped because they saw a motorist out of gas on the side of the road. When the mother pulled the car over the boy questioned her, asking “Mother, if we stop to help, won’t we be late for church?” “Son, if we don’t stop to help, there’s no point in going to church at all,” his mother replied.

What’s the point of a relentless and intensive study of life’s guidebook if you forget to look up and put it into practice once in a while?

That Sunday we did not go to church. We picked up the flowers from the florist and drove to the cemetery. We walked as a family to her grave and carefully placed the flowers on her bench. We did our best to honor this so-loved child. We wept for her, for her mother, for her brother and father. We wept for Miss Elliott, and for ourselves.

I knew I would call someone in a panic myself one day. I will need someone to bring flowers to my Miss Elliott at some point too. We will all be in the position of needing help from others to some extent at some point in our lives. Thank goodness for the kindness of the motorist who notices you standing on the side of the road and slows down to help.

This year her daughter would have been attending her senior prom. She would be graduating right now. She would be turning eighteen next month. Soon she would be off to college to start a new chapter in her life. Glowing with the excitement of young adulthood. Buzzing with the energy to make her way in the world. Unfortunately for her, it was a life that never was to be. In the hearts the mind’s eye of her family, those who love her, and all who were here for her as she left this world behind, she will forever be that five year old little girl.

That Sunday we didn’t go to church, but we put into action the sentiment behind the words in The Good Book, nonetheless.

An Insider’s View Looking Out

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“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 NTSAD.org.”

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.