Women’s Lives | Three Short Years Blog

I first met my dear friend, Shelly Ogden in the most unfortunate setting; the hallway of a hotel in St. Petersburg, FL after our first session of the NTSAD Annual Family Conference in 2010. We were both attending for the first time. Miss Elliott, who had infantile Tay-Sachs and Kaleb, who had infantile Sandhoff were nearly the same age, and had both recently been diagnosed. What I remember most clearly is Shelly stopping me in the hallway and telling me that she just wanted me to know that I was saying all the same things in that session that she was feeling, but couldn’t bring herself to say.

The thing about living with these rare diseases, and impending loss is how instantly, and how intimately the bonds we parents forge are. Both Miss Elliott and Kaleb died in 2012, and while Miss Elliott died in February, Kaleb died on October 3; Miss Elliott’s birthday. Shelly texted me early that morning to let me know that Kaleb must have wanted to go be with her to help her celebrate. I was gutted for her.

And the thing about outliving your medically fragile child, is that in many cases you’re suddenly, nearly completely lost. When your everyday life revolves around continuous care, medications, positioning, appointments, therapies, etc., the silence can be deafening. Constricting in your lungs like a lack of air leaving you writing in pain, desolation, and despair.

As Shelly shares below, though she couldn’t run away from the pain she was feeling, she was desperate to find a reason to be, and to find meaning, and value in her life. She was desperate to find Shelly again. And she did so, by looking in the last place she would have expected to go searching:

“I ran away and joined the circus after the death of my son. Okay, not really, but let me explain. Kaleb had infantile Sandoff disease and died just eight days after his fourth birthday. Grief can consume you, especially when you are grieving the loss of a child, if you let it, and I was determined that I was not going to let it. I never wanted my surviving child, Christopher, to feel like his life was less important, so I decided to show up for him, and continue to live for Kaleb, who didn’t get that chance. Even when I didn’t want to do it. Even when it was a struggle to make myself do it. I owe that much to the rest of my family – and also to Kaleb.

Ogden Family

After his funeral, when family went home, and Dave went back to work I had nothing. I felt lost. I felt like I was wandering without a purpose. I’d go window shopping to kill time but even that was too hard. I’d see a mom walking with her son and I’d literally have to run out of the store or risk breaking down in front of everyone. I then found myself making daily trips to the cemetery because that is where I felt close to him, and because I couldn’t stand being inside our empty house. On my way back from one of those trips, I stopped into a women’s only dance studio and bought a membership. I decided it was time to start taking care of myself. I thought I’d start off easy and attend an aerial yoga class, but when I got there, the instructor warned me that what I was about to take was an aerial silks class. I was already there, and I didn’t know the difference, so I decided I’d stay.

Little did I know what I was in for. I am a retired law enforcement officer, and I’ve been through some tough training but this class was the most physically demanding Shelly Aerial thing I’d ever done. First and foremost, I am afraid of heights which was a challenge. The silks physically hurt my feet, and my forearms, hands, and biceps felt like they were one fire. My entire body was screaming, but for one hour I found that I could focus on something other than the pain in my heart, and that was an amazing feeling. One thing I have discovered, as I dove head first into the world of circus arts, is that the more I learn to “fly” the closer I feel to Kaleb, I no longer feel the need to visit the cemetery every day.

The friends I have made in the aerial world are some of the most supportive and caring people I have ever met, and they’ve changed the way I look at a lot of things. My first instructor, Jessie, played such an instrumental part in my healing process. There are countless times when she would sit with me and just let me cry on her shoulder, which was very therapeutic. She’d encourage me to join class when I was ready during those difficult days where I felt like I was constantly on the verge of tears, and I always felt better out of class.

This past August, I asked my current instructor, Lauriel, to choreograph a piece for me to Danny Gokey’s “Tell Your Heart to Beat Again”. I told her I wasn’t the kind of person who could perform in front of an audience, but I wanted to record this piece and post it on social media in honor of Kaleb’s angelversary. I explained that this anniversary would mean that Kaleb would be gone, longer than he lived. What she came up with was even better than what I expected, and was packed with so much emotion. I was so proud of what she had done and when I finally got it recorded we sat together hugging each other and crying. The release of having finished it, was more than just finally recording the piece, but the emotion of the song and the action that was put into the routine all hit me at the end.

I have always been the quiet observer, the wall flower if you will. I like to see everything going on around me, but I prefer to stay out of the lime light, until recently Shelly Circus when Lauriel talked me into performing. I stepped out of my comfort zone and become a performer equipped with identification that titled me “Talent”. So, for one night, I joined the circus, and the spotlight was on me. It was oddly both terrifying and exhilarating at the same time. I was bolstered by the fact that my oldest son and husband were in the audience to support me and I know Kaleb was in the air right next to me.

I’ve decided to continue to live even when my world has been turned upside down. It was a choice I had to make, and it didn’t come easy. Some days the grief is crippling, but I think about the life Kaleb had to live, one that left him paralyzed, in silence, tormented by seizures, unable to enjoy the taste of food, and he reminds me, if he can do that, I can do this – I can live fully and honor him. I have discovered that in order to navigate through life after the loss of a child you have to find your “thing,” your passion. My faith gives me hope, my family gives me a reason, and my aerial world gives me wings.’

“There is freedom waiting for you,
On the breezes of the sky,
And you ask, ‘What if I fall?’
Oh but my darling, what if you fly?”
Erin Hanson

Key the whining and complaining. The ugly-crying and drowning of sorrows in a pint of mint chocolate chip. The “Man-Hating”, and ultra-feministic points of view. You know, or whatever stereotypical depiction you may have envisioned in your head.

While the following post doesn’t necessarily follow the mission of this blog, which is to put forth everyday experiences and information about “Grief, Love and Life After Loss”, it is my blog so I’ll indulge my creative whim and also attempt an (admittedly weak) tie in, but as the mother of daughters, it’s a form of grief, and very real fear in life I have for her. Yes, her, not them. If you’ve read any of this blog before you’ll know I have one living daughter, and one who has died. If you’re a new reader, I encourage you to read more about our Miss Elliott, whose beautiful but ultimately too short life was the inspiration for this work, as well as her book: Three Short Years

As women, we’re barraged by shoulds constantly. A woman should be ____________. You decide. But don’t worry, if you can’t (and really, why should you worry your pretty little head over it?) someone else will inevitably fill in the blank for you . We’re told to smile more, but not too much. Be strong, but gentle. Speak up, but don’t be loud. A woman should be all thing sugar and spice, and everything nice. A woman should Lean In, but not make a habit of wearing too many pantsuits. A woman should…oh geez, even I’m getting tired of reading this…and I could go on and on.

Yesterday on a call for work I was speaking to a grief counselor local to the area we’ll soon be hosting our next conference and asking her about helping to facilitate some of the sessions we hold for grieving parents. One of her quotes, in particular stuck with me:

“Don’t should on yourself.”

Yes!

So here’s the point I’m getting at: don’t take a snippet of a woman, her attire, her expression, her anything, and tell her who she is or who she has to be. You don’t get to decide. And what makes you think that who you view her as is a relevant factor to her, anyway? And women, listen up: none of that needs to determine your self-worth. YOU decide…that’s why it’s called SELF worth.

I was frustrated after what was just an otherwise boring trip to the grocery store, when my husband called and asked how my day was going.

“Just another incident that reiterates how difficult it is to be a woman in our society today,” I told him. Please let me clarify. I know that in the United States we (all of us) are afforded many basic rights and needs that are often denied to others. I have no political agenda in this post, and this is not a global issues blog. I’m just opening up from a human perspective of very small and ultimately inconsequential happenstance in my own life.

While rounding a blind corner with my cart I nearly collided with another patron. It was neither of our faults, but being a generally courteous person and upholding a very low level of human decency I said, “Oh, I’m sorry, excuse me!” and smiled.

This must have been where I went wrong, but women smile sometimes. It’s not an invitation for anything. It doesn’t mean we want you. It’s just a pleasantry.

“You don’t need to apologize for anything,” the man said. “And besides, you’re really pretty. Do you know that?”

“Oh, well thanks,” I sing-song cooed over my shoulder as I tried to keep going.

“No, you really are. And I know how long it takes to do all that hair and makeup stuff because I watch Amy Schumer. Do you know who she is? She’s a little crass sometimes, but she tells us guys how it is and how much work it takes so I try to work it in to my compliments and I just wanted you to know that.”

WHAT? I think to myself, feeling pretty creeped out.

“Um ok, well thanks again…” I spat out quickly and I was practically wheels up rolling away as fast as I could (before he said something else) while he just stood there watching me leave, wondering if this creepy dude was about to follow me out to my car.

I was wearing my super chic ripped jeans and a striped tee, by the way, so you know, all that effort and all…

Be friendly, but not too friendly. Smile, but don’t over do it. You don’t want to be a bitch, (which is what someone will inevitably call you if you don’t conform to their momentary standards), the voices swirl.

All these things society continually puts on women, and here I was reiterating to my husband how due to nothing more than probability in genetics he will never have to know what encounters like these make a woman feel like. He won’t have the onslaught of unwanted and unwelcomed interactions that most women contend with, often daily.

Last week my best friend went to her regular tanning salon. She checked in and waited for the bed to become available. A man at the desk said to the clerk, “So you’re gonna give up my bed to her?” “Oh, I’m sorry. We’re you waiting for that bed? You can go ahead of me.” she replied. “Nah, I just thought maybe we could share it.” he retorted, and smiled, obviously proud of himself for such a witty come on.

“And that’s how daddy and I met,” #saidnowomanever (Google this hashtag if you’re not familiar with it).

boxing-woman

“Uh, no thanks.” she told him. Suddenly he wasn’t smiley and suave anymore, but instantly became sullen and rude.

Though they may seem anecdotal, stories like these are an ongoing issue for many woman. Interactions that should be of no consequence whatsoever become a source of stress and discomfort and unfairly put women on the defensive. They cause women to question their everyday actions such as how they do their hair or makeup, what they wear, where they go, who they interact with, and how, etc. All of these factors, amongst many, many others contribute to what it feels like to be a woman in society today, and perpetuate the victim blaming mentality.

Without going completely off topic on another tangent, this reminds me of the best anti-rape article I ever read. It explained that when we tell our young men and boys the reason not to rape a woman is to think of her as your sister, mother, daughter, etc. all we’re doing is reaffirming who she is in relation to a man. The real reason to not rape a woman doesn’t have anything to do with who she is to them, it’s because she’s a human being, all on her own.

So? Don’t should on yourselves, ladies. Don’t apologize for your existence. Chauvinism may be alive and well, but in the immortal words of Meghan Trainor:

“…listen up…lick your lips and swing your hips, girl all you gotta say is…”

NO!

Then turn around and walk away, tall.