Maybe: Talia

My phone buzzed and I checked the message. “Pilates may be cancelled tomorrow morning depending on the weather” wrote a person my phone identified as Maybe: Talia. Maybe Talia? I questioned. How could it possibly be Talia? How could my toddler daughter be texting me about my exercise class from beyond the grave? And then I remembered that the very fit, instructor who is teaching me how to finally use the abs I supposedly have, shares the name, and the dark curly hair, of the daughter I lost a year ago.

When choosing the name for our third child, my husband and I were ready to get a bit wilder. Nathan and Audrey, our first two, were named after an extensive hunt through baby books. We searched for a name that neither of us had hated or dated in our younger years. We wanted something stable, not too off the wall, and easy to pronounce. My husband out of hand rejected any names that started with S because our last name also started with S and as Jews, he truly didn’t want S.S. anywhere near our family.

For our firstborn, we chose Nathan, despite my fear that he would be called Nate Dogg, like the rapper who collaborated with Warren G on “Regulate”. In fact, I became the first person to call him by that name, and his demeanor really still is quite dog like. His middle name honors my grandfather Gerald, who hated his first name of Jacob so much that he insisted on being called by his middle. I felt the opposite about the two names, so Nathan Jacob he became. The fact that he was born on the day his grandfather would have turned 100 only solidified the connection.

Audrey was named, despite the fact that her initials A.M.S. Mean “Altered Mental Status” in medical lingo. In fact, during her early tantrums, and later embrace of all thinks quirky, she came to occasionally embody those initials. Audrey’s middle name is certainly the quirkiest of all. We wanted to honor David’s grandfather who had recently passed away but Max Mozes proved a difficult name to give to a girl. While in labor with Audrey we finally settled on Moselle, the female version of Mozes, and coincidentally- a river in France.

When it came time to name our third, I wanted more than anything to name her Lola, after David’s grandmother but she was still alive (and still is) and Jewish tradition dictates that it is a bad omen to name your child after a living relative. It could hex the living relative. In the end, we embraced the more unusual and “Jewish” name of Talia. As her middle name, we honored my mother’s parents who passed away when I was a child and gave Talia the middle name of Lynn. I was so happy that she would bear the name of the grandparents that I carried only as brief memories of. The soft hands of my grandmother, backgammon games in their apartment with black and white tiles, and the towering figure of my 6’6” grandfather are certainly not enough memories were not enough to hang a relationship on, but they were real and as Talia would teach me- it’s not the length of the memory that matters, it’s the truth of the connection.

Of course the irony of our insistence of avoiding the S.S. initials became clear once Talia was diagnosed with Tay Sachs, the fatal disease that eventually took her. Referenced as T.S. in nearly all medical literature it was as if they were directly calling out my daughter as they listed the symptoms of seizures, paralysis, inability to swallow. David and I had bitter laughs about the coincidence of naming our child after the disease she had. We would have done better to stick with Lola- the Bubbie (Grandma in Yiddish) who is the last remaining great-grandparent on either side and true survivor in every sense of the word. Perhaps she would have protected our child more than T.S. ever did.

So I look back at my phone and tap a message to Maybe: Talia. If class is cancelled, that’s fine by me. I replace the contact info for the number with “Pilates Teacher.” She needs to remain nameless if I am to ever work with her again. I feel a rage at other Talia’s existing in the universe while mine is gone. I wonder if I had chosen a more popular name like Ava or Emma if the shock of hearing it so frequently would help lessen the pain. I doubt it. The name would forever belong to the child I loved and lost. Every child’s name is chosen with love an care and a clear eye towards their future. When that future is gone- I want the name to go too. There is only one Talia Lynn Steckman in the world, and she was mine. Nameless Pilates instructor- you’d better steer clear!

The Longevity of Grief

When Talia was alive, I would write in this blog as a way to release some of the pressure off of my brain. The silence in the house was overwhelming, and the screaming in my head was ever present. There was constant tension that I couldn’t name or look too directly at. When my thoughts overwhelmed me, I turned to the page to write them out. It was important then for me to share my thoughts to the world because keeping a personal journal was too quiet, and because it’s in my nature to overshare. I fought many one sided arguments in my head, and by bringing it to the public I could tell myself that I was debating with the greater public.

I am still writing, although I’m doing it more privately now. I’m writing a memoir about my time with Talia. I’m writing her life so that it can continue past her body. I have looked back and searched my memory for each and every moment I spent with her. I wish I had a better memory. I wish I had taken more notes. I’m simultaneously grateful that my memory is fuzzy and I don’t have too many pieces of writing reminding me of the anguish of the time.

The introspection has been therapeutic and challenging at times. I’ve both allowed myself to remember the beauty she brought to our lives, and the razors edge of sadness we lived on. Knowing the end helps me to examine the steps we took to ensure the survival of myself, my husband and my healthy children and to feel mostly ok in the choices we made.

The book is chugging along. I’ll be sure to let you all know when I’m closer to finding a publisher (and you can all help!) In the mean time, I want to keep writing here, and if you are willing to keep reading, I’m going to keep things in the present now. The present, for me, is a life with two healthy exciting school aged children, a husband with whom I know I can trust my life, and with a newfound understanding of myself and the things I can withstand and achieve. It is also a life that will forever be shaped by grief. I am sometimes furious at this grief and its longevity. I don’t feel it as acutely now, a year after Talia is gone, but it is still there, in every part of my being.

The grief is there when I watch a tv show deal melodramatically with death and I groan, even as I tear up. It’s there when I’m asked how many children I have and I have to debate how truthful to be. It’s there when I watch with joy Nathan and Audrey play a combination of family and car. Their close relationship has been forged as a result of the Talia’s absence and yet I feel sadness at the missing sister that always would have played family with Audrey, and idolized Nate. It’s there in my irate anger as I listen to people talk about the simple difficulties in raising their toddlers. It’s there when I share something special with Audrey and know that there is a missing little girl who would have loved the same thing. It’s just there.

The grief community is much larger than the “raising a dying child” community. There is wisdom to be gained from anyone who has experienced loss, as all of us someday will. I hope to use this blog now to share with you whatever wisdom I gain, and continue to gain. I am also on Instagram @Steckmama so feel free to follow me there and I’m going to try a little Twitter action where I’ll share articles that I find particularly resonant (and probably a sarcastic comment or two about the world) @carlasteckman.

One year later

It has been one year since Talia died. I’m sorry for the absence of writing, but I have been privately working hard on drafting a full length memoir about our experience, and I found it too distracting to post here as well. I hope to have the full story written and published in another year or so (writing is hard work. . . Who knew!)

I turned to this blog as a way of keeping myself sane. I needed an outlet for my thoughts, and I also needed to let people know that its ok to keep living even in the face of death. The responses I received to my writing made a profound difference in my life and helped me find confidence in my voice. I thank you all for that.

I wrote because I wanted to shine a light into a topic, death of a child, that is wrapped up in fear and denial. I wanted to show that by addressing our fears, we can gain some control over them. The main lesson I learned in raising Talia is to fiercely accept the things we can’t change and to not be afraid of that lack of control. Only through acceptance can we make clear headed decisions in everyone’s best interest. In our case, that meant truly understanding the progression of Tay Sachs and then taking steps to protect Talia from having to live with its effects for a minute longer than she had to. In our acceptance of her impending death, we were able to focus on making her short life comfortable, and we were able to take proactive steps to protect Nathan, Audrey and our marriage from the fallout of that loss. It’s the hardest thing we have ever done, but we were fortunate enough to have lived it without regrets.

I wrote this blog for my own sanity and also so that Talia would exist in everyone’s minds. Her impact is greater than the years she lived. I have spent this year thinking of nothing but my lovely, curly headed girl whose body melted into mine and whose laughter could freeze time. As I have been writing about her two short years and my experience as her mother, I have searched my mind, my phone and my family for every single memory we have of her, down to the smallest moment. I’ve come to realize that it is only the small moments that I miss. As I scroll through photos of my three kids, the moments that cause me to pause are the mundane ones: Audrey playing family, Nathan reading Audrey a book, Talia eating a peach. I scroll right past dance recitals and soccer goals. That is the busy stuff of life. A childhood is made in the small moments, and it is up to us as parents to catch them, not only through our cameras but through our eyes. We need to live with our children in those spaces. We need to meet our children where they are in that exact moment and not wish for more, because nothing but the moment we are in is guaranteed.

Grief is hard, raising a dying child was harder. I’m grateful Talia is no longer suffering. I’m grateful that Nathan and Audrey continue to talk about her though she exists now only in our memories and in our digital photo frame. As angry as I am at her diagnosis, I am nothing but grateful that she was in our lives. She has changed me forever. I will miss her forever.

Sibling Preparedness

A piece I wrote for the Courageous Parents Network.

When my third child, Talia, was diagnosed at 11-months-old with Tay Sachs, an always fatal neurological disease, my second thought, following my own feelings of shock, numbness and sadness, was thinking: How will my other children survive this?

I needed to find a way to prepare Nathan, 6, and Audrey, 4, to understand what death was, and prepare them for what was inevitable. They would be confronting what no child should have to know, and it was up to me, as their parent, to ready them for this challenge. I don’t believe there is a greater difficulty.

I knew that Talia, who would never mentally develop beyond that of four-month-old, would decline slowly until she died sometime before age five. The hardest part of parenting my children through this disease was the open timeline. I didn’t want to overwhelm them all at once, with what would happen – her death – and then have them be afraid to interact with their sister.  I also didn’t want to make her decline the sole focus of our lives and have them come to resent her and the attention she sapped away from them.

After speaking to my palliative care doctor, and a friend who is a child psychologist, I felt prepared to begin the discussion with my kids. I have a history of speaking openly with my children. They understand where babies come from and they know they can ask me anything. I insisted on approaching this dark issue with the same openness.

We told our children that Talia had Tay Sachs Disease. We specifically said she had a disease,  not that she was “sick”. We didn’t want them relating their own colds and sicknesses to a disease. We made absolutely sure that they knew the disease wasn’t contagious, and wasn’t their fault. Nathan, the older, had to be reassured more than once that he could not “catch” this disease.

“So I won’t ever get Tay Sachs?,” my son would late ask at regular intervals.

“You are safe,” we repeated.

“ Talia had a disability,” we said, “It is simply our job to love her exactly as she is.”

“I’ll give her lots of hugs,” my daughter responded.

I fought hard to remind myself that my children were very young, and when they asked questions, I tried to understand exactly what they were asking.

“Why can’t Talia hold her head up?“ Audrey would ask.

“Because she has Tay Sachs, remember?” I would reply.

I had to put my emotions on a shelf and not overwhelm them with my need to share my burden. I had to keep it simple for my kids, and instead, share my burden with my husband, parents and in-laws.

We were very clear about the disease Talia had and the limitations it placed on her body, but didn’t yet discuss the limitation it put on her life. The timeline was too open ended for them to understand. I remembered how they only “understood” my pregnancy with Talia in a real way when the baby actually arrived. Anticipating birth and death are similar for children in that they only really understand what they are seeing. With pregnancy it was my decreased stamina and growing belly. For Talia, I first wanted them to understand her decreased responsiveness and lack of development.

If Nathan or Audrey had asked about Talia’s outcome, I would have been honest with them because I would never lie to them, but I’ve found that kids ask questions when they are ready to hear the answers. Instead, my kids accepted Talia as she was, and didn’t question me much at all.

My husband and I thought of specific ways our children could have quality time with Talia while she was here. Initially it was difficult for me to encourage their sibling connection because I feared it would make the pain of their loss even greater, but helping children love each other is always the right idea. The physical memories of her siblings tickling Talia, bathing with her and helping feed her are all that now remain and when we talk about those memories, we keep apart of her alive.

Audrey came home from kindergarten one day and talked about a game where people died and then came back to life. I used it as an opportunity to directly address death, and help her understand that it isn’t something you wake up from. I didn’t overemphasize the point, just mentioned it and moved on. I then suggested that they play “go to sleep and wake up” instead.

I was also hyper vigilant about correct misconceptions about death. I heard another adult mention to my kids that death is like “going to sleep for a very, very long time.” I jumped right in and corrected her. Death CANNOT be connected to sleeping unless you want your children to fear sleep forever.

As it became clear that Talia was actively dying, I began discussing death more directly using the same plain language and openness that we had modeled throughout her sickness. “Talia’s body is going to die,” we told our kids. “The disease makes it so that her body isn’t able to work and when that happens eventually her heart will stop beating and she will die. Her soul, everything that makes her who she is, that lives on in us. Inside our hearts. Even though we won’t have her body here anymore, we will still carry her with us.”

It was only after Talia died that Nathan and Audrey seemed to understand that what we had lived through was out of the ordinary. We made sure they attended every part of the funeral and memorial to help them understand the unfathomable. I didn’t want there to be any mystery as to what was happening to Talia. I feared their imagination would conjure up something terrible, when, in fact, the actual burial was simple and beautiful.

As we approached the funeral, we didn’t want them to fear her body being underground. My husband told them a scientific truth. “All matter on this earth is made up of atoms and molecules that have been recombined in infinitely different ways since the Big Bang. Talia’s body is going to go into the earth to become part of the trees that give us air and water that makes rain and fills lakes. She’s going to be a part of everything”. He made it even more real for my son when he said, “When we skip stones across the lakes on our hikes, it will tickle the water and tickle Talia.” This was a tangible truth that our children could hold onto, and was connected to nature, and the cycle of nature of which death is an integral part.

I would like to say that since she has died, we no longer speak about death, but it’s simply not true. My son’s teacher’s husband died in the fall, and this was yet another opportunity to talk. In their lives, as in my own, there will always be illness and death, just as there is love and beauty. As a parent, I hope I am helping them confront hardship not with denial, but with a  straightforward view and open communication. As a result of our conversations around Talia, my children are better equipped to understand this world in which beauty and tragedy too often coexist.

Option B

I wrote a piece for Option B, the organization started by Sheryl Sandberg after the sudden death of her husband. It’s mission is to help build resilience in the face of many types of adversity. I wrote about what it was like raising Talia while also grieving her and how that provided me the opportunity to train myself for the real grief to come.

You can read it at Option B- Anticipatory Grief

The Power of Palliative Care

I wrote a piece on Palliative Care while Talia was alive. I published it at the Courageous Parents Network  

This organization is a wonderful resource for anyone trying to parent a child with severe disabilities. Please check it out.

The power of connection

Here’s a link to my latest piece about Talia and the connections I made through Facebook.

https://www.kveller.com/i-hid-my-daughters-terminal-illness-from-facebook-until-i-didnt/

Hiking with Talia

I wrote a piece about hiking with Talia that was published on kveller.com. Read it there at  https://www.kveller.com/we-looked-like-the-typical-family-that-day-we-were-anything-but/

The Weight of Feelings

I want to write. I want to feel something, sit down and let it spill onto the page like I did when Talia was alive. When I was with her I experienced moments of profound sadness or defiant happiness and I immediately wanted to memorialize it in print. I want to feel that, but I’ve given up feelings for the moment. I’ve put them on a safe shelf so that I know where I can go to find them if I feel I need them, but I don’t right now. Maybe I still need them, but I don’t want them. I’m tired of feeling. I’m tired of having my feelings be assessed. I ready to be ignored, and also already missing the attention. I’m glad to not be in the eye of the storm, and also missing the brutal reality of that tornado.

I want to write. My children are in school now. We have survived the summer from hell and I’ve held off feeling much since after the memorial. I dedicated myself to enjoying the rest of summer and being present in their lives. Being fully present wasn’t really a choice for the past two years, no matter how deeply hard I tried. So for a month I’ve put my feeling on a shelf and just enjoyed our newfound freedom of movement and lightness of spirit. But now they are safely in school and I find myself a stay at home mom with no kid at home. An early empty nester of sorts. Time to figure life out I suppose.

I want to write, but I don’t know how to start. I don’t want to look back. I don’t want to remember, even though that’s all I have of Talia now.  She exists now only in my memories and if I don’t write, she will be forgotten. Her life imbued mine with meaning while also sapping my life of meaning beyond her. Her life showed me how deeply terrible moments and wonderful silly moments can occur simultaneously. Her life, and the way our family cared for her, have affected those around me in ways I’m only just beginning to hear about.

I want to write of what her life meant and what to make of the suffering she had to endure, yet I don’t have that answer yet. I know that I now live in a world where I know grief. It’s a world where I no longer have the ability to say “I can’t imagine”. I’m in a community of sufferers for whom grief has changed them to the core and, despite my best efforts to not allow it, it has changed me too. I don’t have control over that change. It’s one of many things I don’t have control over. I feel hardened to the world and yet also even more attuned to the struggles of those around me. I know this change in me will propel me towards helping those in need, but for now I need a moment to simply be.

I need to look back, I need to remember. I need Talia to exist on the page so that I can prove to myself, years down the road, that this whole experience really did happen. She was here. She mattered. She was mine and she will be remembered, and it’s time to start feeling again.

Happy Birthday Talia

It’s your second birthday, the first one since you’ve gone. I wish I had a new photo to post of you enjoying cake rather than the one I’ve got. In the one month without you and I’ve learned a lot. I’ve learned that even having a year to prepare for your death doesn’t fully take the sting away from losing you. I’ve learned that my family, from the small circle to extended relatives to neighbors and old friends has drawn together tighter than I ever could have imagined as a result of your life. I’ve learned that grief and loss is a lifelong condition, and I don’t need to feel it all in one week. Mostly I’ve learned, or relearned what I already knew- that your life, no matter how small or short, had an impact on a wider array of people than many older wiser people.

I miss you and I’m also happy to say- I don’t miss you. I miss holding your sweet body and feeling your love melt onto me. I miss seeing Audrey and Nate interact with you. I don’t miss seeing you decline, I don’t miss having conversations with strangers about my sleepy child and I don’t miss constantly talking about death. My body misses your weight, but my arms are also free now to throw Audrey in the air and to play catch with Nathan. I feel you most in those interactions. I know my newfound ability to be fully present for your siblings is your birthday gift to us.

My gift to you is I’m going to honor your life the best way I know how- I’m going to keep on living. I’m going to keep sharing your story in the hopes it can give strength to other families in crisis. I’m going to keep raising money to the Talia Lynn Steckman Fund so I can help provide quality pediatric palliative care in Albany and beyond. I’m going to parent your brother and sister with deep love, clear eyed optimist realism and with a long memory of you. 

We have planted a tree at Eagle Elementary so you can watch over your siblings as they play at school. We will keep you alive in our hearts and we look forward to seeing you in the sun and the shadows, and in the breeze through the leaves. We will feel your laughter as we throw rocks in the many streams we come across on our many hikes. We will love you best by loving each other in every minute of everyday. 

Happy Birthday Talia Taco!