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.

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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 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!

My Eulogy for Talia

Talia’s life was so quiet, just a whisper in the universe but her impact on us all will echo into eternity. She was diagnosed one year ago today and my family was given the near impossible task of loving and caring for a child we know we would lose. I feared many things in those first weeks, the loss of my family, the loss of my marriage, the loss of my sanity but I quickly came to realize that while I didn’t have control over Talia’s fate, I had plenty of ability to make a choice about the rest.

I made a commitment even on that first terrible day to not let this disease drag me or my family down into a place where we no longer recognized ourselves. Everyone in this room joined me in creating our vision of our family as neither tragic nor heroic but simply strong.

I remember revealing the diagnosis to my parents and saying “You can mourn for a day, but then we’ve got to DO this.” And so we did. We came together and survived the unimaginable. Being a grandparent is sometimes referred to as the easiest job in the world, all play- no hard work. That was certainly not the case here. It’s only because of the hard work you all put in that David Nathan and Audrey and I were able to still find joy in our lives. We can finally mourn for Talia now, but then- We’ve got a life to do, and I plan on living it to the fullest.

Everyone came to know Talia and our family, whether in person or through my writing had to grapple with questions deep within themselves about humanity, medicine, and the outer limits of what love means. It’s through the hard act of confronting these questions that we push ourselves to be more present, more appreciative of each other and more true to ourselves. I hope you’ll all continue to ask these questions, as I plan on spending my life trying to understand them.

Nathan and Audrey wanted me to tell you all that Talia was the best sister ever. She loved laughing with Nathan and holding Audrey’s hand. Their time spent together as siblings will remain the highlight of my life.

I’ve heard it said that when you lose someone it’s like there is a hole in your heart. An emptiness. Like a part of you is missing. I don’t feel that, I don’t feel empty. I feel like there is a weight on my heart.  I feel the warm weight of love, having loved Talia and being loved by her in return and I feel the cold weight of sadness and loss. I held Talia in my arms almost every day of her life. I can feel her now as I speak to you. I loved her before she was born and I’ll love her far after her death. My arms feel empty now but my heart, my heart feels full. My heart is bursting from the depth of love that Talia has brought into my life. I have seen, at too early an age, that we don’t control what tragedies may befall us and nothing, not a single extra day, is guaranteed. This could be enough to make you want to give up but I’ve also learned that if you approach life challenges with openness to others, honesty with yourself and love for all you can survive anything. I love you Talia, and I promise you honor your existence every day of my life. Your soul is now inside me and everyone who’s ever known you, and that’s a weight we will all gladly carry.

Please donate to the Talia Lynn Steckman Fund to help support pediatric palliative care and degenerative neurological disease research.

Doctor appointments at Opposite ends of Life

Pediatric palliative care doctors and obstetricians operate at different ends of the same spectrum. As a parent  who has experience with both sets of providers – those ushering a life into the world and those guiding one out – I find many similarities.

My third child Talia is twenty-two months old and I am watching her die slowly from Tay Sachs disease. My husband and I immediately engaged palliative care immediately upon diagnosis. Now, an unknown number of months before Talia’s death, I have the space to reflect on how both types of doctors provided me with a similar set of tools to prepare me and my family for the unknown.

First Trimester

My earliest appointments with my OB were fraught with anxiety. I had a new being inside me and I questioned every decision regarding my body and lifestyle. I felt that it was essential for me to build a relationship with my doctor so I could entrust him with my child’s safe passage into the world.

I felt both powerful and incredibly powerless as my doctor provided me with the first views of this tiny free floating embryo and I marvelled at the magic of life.I I noticed how the doctors spoke in measured tones when counseling me about test results. I listened carefully about how to best care for myself, and by extension, for my unborn baby. Healthy mother, healthy baby, I was frequently told. I left each appointment feeling empowered by the new information.

With Talia, as we hunted for the cause to why she missed milestones and had abnormal reflexes, I prepared for life with a severely disabled child. The absolute powerlessness I felt was almost unbearable when she was diagnosed with Tay Sachs, meaning inevitable death. My husband and I immediately engaged palliative care and that feeling dissipated somewhat after our first meeting.

I feared that the entire discussion would be focused on Talia’s death. Instead I found a doctor who spoke of Talia’s life and how to ensure it  would be free from pain. I learned about the importance of stepping back and creating a philosophy of care and how our decisions would be based around those core principles. We spoke of Talia’s daily existence and of what equipment we could choose to maintain her quality of life. Equally important we talked about which interventions we would NOT utilize because it didn’t fit with our care plan.  At our first appointment, I built a relationship with my doctor that left me feeling stronger and more in control than I had felt in months.

Second trimester

At the OB the second trimester is marked by the 20 week ultrasound. I approached these appointments with great excitement. The shock of being pregnant had faded and my fear of miscarriage had dissipated. My husband on the other hand knew that this ultrasound could potentially reveal significant deformities and refused to exhale until after it was accurately read.

In the middle of Talia’s decline, the shock of diagnosis has worn off slightly and we watch sadly now as my child continues to grow, but not develop. I desperately wish there was a test that could show me month by month what Talia’s decline will be. The uncertainty about timing makes me long for the relative simplicity of a trimester timeline and inevitable due date. My appointments at this stage include advice on how to manage the open timeline and how to keep on living my life while knowing that Talia’s death could be weeks or years away.  Our doctor helps mentally prepare me on how to survive the process of watching my child die. If I don’t take care of myself, I can’t properly care for Talia. Healthy mom, healthy baby – sort of.

         

Third Trimester

At the end of pregnancy, the OB meetings were about our birth plan and the uncertainties around labor itself. I worried I wouldn’t know what a contraction felt like (ha!). I worried about pain and being pushed into a cesarian section prematurely. While I was never one who obsessed over a natural vs/epidural birth plan, I did spend the final trimester imagining every possible scenario and trying to mentally prepare for each. As much as many parents want a “natural birth” for their children, it’s the OB’s job to try to adhere to their wishes while still keeping the parents focused on the medical realities of delivering a child.  

Now I find myself obsessively thinking about our death plan for Talia. I meet with the palliative care doctor to discuss in exacting detail the way I envision my child’s death. I worry I won’t know what the final decline will look like. I worry about managing Talia’s pain, and of my own aching pain. Our doctor runs through potential end of life scenarios with my husband and me as we plot our course through the impossibly choppy waters. I am fixated on helping Talia pass out of this world in a pain-free manner with as few interventions as possible. Yet I have to prepare myself for the fact that, much like Talia’s birth, there may be medical realities that I don’t anticipate and can’t control. I must remain flexible and allow myself to reassess as conditions warrant. As a result of our conversations, I feel empowered to advocate for my wishes for my child in the midst of a system designed to keep her alive regardless of diagnosis.

 

Families need to feel a sense of control, even when largely powerless, and discussions with good doctors – a form of gentle realism –  at both the beginning and end of life, can give us that. Without my palliative care doctor I wouldn’t have believed that the end of life could be as thoughtful and empowering as the beginning.