What is death? It is loss, it is an end, it is final. It is emotional, it is scary. It is in many ways inexplicable. When I look at Talia is see the mystery of death, but I also find it important to focus on the medical realities of what death literally is. Death is malnutrition, it is dehydration, lack of oxygen, or infection. It's a heart beat that stops. This death is coming for us all eventually. It is the one unavoidable fact of life, no matter what method we may use to delay its arrival. It is also the reality that we don't typically discuss instead leaving death to the world of metaphor and mystery.My husband is a cardiologist who has seen death up close. He has seen young people pass away unexpectedly and old people fight for every extra day. he has seen families unwilling to let their loved one go and therefore knows what a prolonged death looks like. He shares these stories freely with me, sometimes in the middle of date nights, as a way of processing his day. The both of us trying to make sense out of other people's senseless tragic stories. In a way, it was good training for the tragic story we currently find ourselves in. I'm grateful for his experiences and those of his GI doctor father. We are able to have a clear eyed vision of Talia's demise and therefore we are able to unite for our vision of the rest of her life. We are dedicated to ensuring that her journey will be free from medical intervention designed to stave off the inevitable. We don't plan on doing a G tube even though her body will someday lack the ability to injest food orally. We don't plan on medicalizing her short life on this earth in the hopes of getting a few more days, months or years with her. The decline of Talia's body is guaranteed, the pain that decline will cause her is the only thing we plan to assist.David and I engaged palliative care immediately upon diagnosis, and it's something I wish every patient with a life limiting disease did. In a typical doctor's office they are examining their subspeciality. Meet with a GI doc, they will counsel you on feeding tubes, meet with a pulmanologist and you'll hear about in home oxygen and pulse ox machines. Meet with a palliative care doc and take a step back and hear about your child's life. Take time to reflect on your goals. Make purposeful decisions. Choose your path. In the absence of palliative care, or a good peidatrician who understands palliative care, the medical system can sometimes push you towards a different path than you may have chosen if you stepped back. Once you've started down the medical woods one decision rolls into another. If you get a G tube, then you've taken care of the nutrition aspect of your child's death, the next obvious step is to address her risk of infection, or low oxygen intake and before you know it, you've moved the entire hospital into your home and your baby is now your patient. If that the course you've intended, then your path is clear and there's support out there for you. I'm writing to let people know that there is a different way to go too, and though it will be challenging, and it may be shorter, it will be beautiful and painful in its own way.I want to write openly about Talia's decline without the assistance of a feeding tube because it's the one thing I scoured the internet for immediately upon diagnosis. I want to hear what death is, I want to know that the process of dying, apart from the emotion of it, doesn't have to be a painful thing. I want to champion palliative care as a means to help children and adults get the death they seek rather than the death the medical system works so hard to prevent. I want us as a population to be informed patients and informed advocates for our loved ones.My philosophy of care was formed even before diagnosis. As the weeks of speculating as to which terrible disease Talia would have rattled around in my head I prepared myself for a lifetime as a caregiver to a medically fragile child. I prepared for fights with state agencies and fixated on finding residential care facilities for when Talia aged out of the child system. I couldn't sleep thinking how aggressively I would fight for my child. Then suddenly I was confronted with a diagnosis that I knew to mean certain death. A disease that has been around for hundreds of years, a cure that has been hunted for decades without any significant progress. A diagnosis free from hope. Yet I knew, even in that first week that lack of hope of survival also meant lack of hunting down doctors, lack of disappointment at the slow medical system. It meant a freedom to focus on my daughter as a being, not an experiment. It forced me, and continues to challenge me, to accept Talia as she is now. With an end that is free from doubt I also can feel justified in my minimal intervention approach.Talia is 19 months and can't eat or drink without a great deal of effort on our part. We feed her through a 'Take and Toss" sippy cup with the hole enlarged. I feed her baby food purees mixed with apple juice. She drinks chocolate milk and delights in ice cream. I hand feed her peanut butter and mozzarella and give her tastes of whatever we are eating for dinner. Sometimes her mouth cooperates and the muscles chew. Sometimes she gets lost in a sucking her tongue and needs a break from food. She spends most of the day eating yet takes in few calories, but she also expends very little energy. I don't have a preset amount she needs to consume during the day. I converse with her body daily and when she's content, I let her be. She can breathe fine, except for occasional choking on mucus. She has thus far avoided getting any serious infections, but not because of any extensive hand washing routine or keeping her secluded in our house. She is out and about and held freely by everyone. She's free from infection because, as one doctor put it, 98% of her body is still doing it's job. When Talia sits in her stroller she appears to strangers as a calm content baby. That is perhaps the hardest part of this disease so far. How can she look so sweet and yet have such a terrible disease? I haven't yet experienced the sympathetic, curious looks from strangers when they realize they are in the presence of a disabled person. It's not something I'm trying to avoid because of my own vanity, its simply that Talia's comfort is my key, and she is plenty comfortable in her regular stroller. Well, maybe it's not that simple. It IS a choice I'm making purposefully to assist my own vision of Talia as a baby, not a "disabled" child. It is, to a certain extent, about my lack of desire to speak to strangers about her disease. It is to keep us in a bubble and early childhood rather than in early decline. The flip side of the coin is that now strangers ask me Talia's age and when I tell them I then pause ready for their follow up questions "Does she walk yet? Is she getting into your others kids toys? Blah blah blah." The small talk of life is one I always tried to avoid, and I now find completely unbearable.
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!
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 TrimesterMy 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 trimesterAt 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 TrimesterAt 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.
Live in the Juxtaposition
6/5/17 I make myself very clear. I do not want to be pitied, I do not want to be deified. I do not want other parents to feel they have no right to complain about their children. I refuse to be the comparative, negative or positive, in anyone’s mind. What I do want everyone to do is look around and try to see your life based in reality. View your children with clear eyes. They are neither geniuses and delinquents, they don’t need to be babied or forced into early adulthood. They just need to be seen and to be allowed to live multiple realities at the same time. They can be saint and sinner in the same breath. You can acknowledge the difficulties of raising them without that meaning you're a terrible parent. It's hard work in any scenario. Talia is living the absolute extreme of this juxtaposition. She hangs between life and death, somehow never fully embodying either. I see her reality. I force myself to look closely and made a decision long ago to always be guided by that reality. I believe it has helped me to understand the reality of her condition early on so I’ve had time to come to an understanding about it. This understanding of reality has helped guide our minimal medical intervention path and helps me not get caught up in the cycle of hope and disappointment. I hope to be so clear eyed about those around me once she is gone. My other children are my joy and light, but they can’t be my salvation. I can’t place all of my hopes and fears on their shoulders. They are children trying to make sense of a world I’ve only recently found out to be senseless. I’m trying to let my other two know that it’s ok to experience happiness in the midst of tragedy and that sadness often has a place in joy as well. I hope I teach them that the world, while not fair, will reward those who remain open to possibilities and change. The outcome I refuse to accept is the one where we are all consumed by this sadness and forget to keep living. As my doctor husband says “The patient is the one who is sick.” Meaning, Talia has this disease, she is the one who is dying. Keep focus on her, and in my interpretation- don’t allow this disease to claim another victim. The only way to honor Talia is to continue on. Strengthen my marriage, don’t allow it to fall apart. Focus on my healthy kids, and don’t spend a minute of guilt about the time spent with them and away from my sick baby. I spend my days furiously lavishing attention on them. I make them feel safe and I work as hard as possible to normalize a completely abnormal situation. When they look back at this time I want them to marvel at how joyous their childhood was in the midst of such hardship. Sometimes it sounds like an impossibly ambitious task, and one in which I create a false Pollyanna version of myself. It’s true, sometime I am faking my happiness but mostly I’m just the same me I was before diagnosis. I’m trying to do the same thing all parents want. To raise happy independent kids who understand the world around them yet aren't crushed by its burdens. There’s too much time spent as an adult realizing the world is hard I have no desire for my children to discover that reality prematurely.
Living with Death (what a cheery title!)
6/16/17I live with the specter of death hanging over us, but in a bizarrely casual way. There are hours at a time where Talia will lay in her bean bag chair and not utter a sound. Her body is so still I check to see if her chest is rising. Each time I look I silently know that if it were to stop rising, I would cry from happiness that she is finally free. Each day I assess Talia’s potential for survival and it continues to look like she will be here for a long time to come. Each day I try to come to grips with that. One more day living with death, and yet deciding that our family must go on living. If I pause for too long, think about it too hard, I will be consumed. My daughter always wear pajamas. It’s not because I’m too lazy to clothe her properly. Putting her in outfits that typical toddlers wear requires a certain amount of skill on my part. Maneuvering her limp head and arms into a shirt is one of the few times Talia expresses displeasure. On rare occasions I do dress her up, but it never causes me pleasure. Seeing her wear Audrey’s hand me down outfits while not being able to run in those same outfits is yet another reminder of the future she was robbed. In a dress, Talia looks like a girl and the contrast between her look and her actions is sometimes too much to bear, so I keep her in PJ’s. In public she can still play the role of that adorable “sleepy” child. At home, it’s her uniform. It keeps my vision focused on her as my “baby” and “patient”.Talia receives early intervention therapies. Her physical therapist loosens her muscles and helps her body momentarily exist in positions she can’t achieve solo. Watching them work gives me a view of Talia’s face I rarely see when cradling her in my arms. Her speech therapist tries to help her jaw stay loose so she can remain fed by the mouth. Her special education teacher exists to play with her. I’ve thought many times about canceling these play sessions. Talia doesn’t play, she doesn’t make purposeful movement, doesn’t actively respond to stimulus, can’t focus her eyes on anything. Yet her teacher has said “Talia is a child and children have a right to play”. How could I deny my child has a right to play, or the right to be near a woman with such optimism. How can I be totally sure of what she learns or enjoys? Have I gotten to the point where I refuse to hear good things about my daughter? Have I already placed her in a grave? I’ve believe I’ve chosen to see Talia with the most realistic eyes I can. I don’t want to place my hopes for cognisense on her, that’s about my desires, not her reality. Yet sometimes I fear that my realistic approach is denying me some of the magical illusion of connection that I long for with her. I love Talia, I spend hours with her in my arms. I make sure her siblings can feel her love for them even when she is unable to outwardly express it. I know Talia feels my love every day, but I also know that her brain is causing her to retreat further and further from her own humanity. I refuse to let myself get swept up in the fantasy of hope that she can be like a typical child because I know it will make the pain of loss greater. It’s an incredibly delicate balance of seeing the world plainly for what it is and yet also choosing not to retreat because of that reality.I mark off days on the calendar. I once believed she would die at eighteen months old. I now see her two year birthday on the horizon. I warn myself to find a way to celebrate it. I seek reasons to be happy at her continued existence. She’s calm, she asks nothing of this world that has already let her down so profoundly. She wants warmth and an occasional (all too infrequent) bite to eat. She wants to free float in the bath and feel the breeze on her face. She wants so little, and I can give it to her. I can give her my attention. I can give her my warmth. Although she is happy lying in her bean bag for hours in a row, I have a babysitter here to hold her and stimulate her in the hours I don't. I write to give Talia a legacy and help people know her. So much of her life is about its impact on me and my family. Her legacy is one of cause and effect. She is the cause of great change in our family and it's effects on me are still unknown. I feel pushed towards something bigger than myself but it's too early to tell.
A Break in the Silence
6/8/17I heard your voice today. I saw your body move yesterday. I take note. Your stillness is your defining feature. Your silence is a crushing reality to which I’ve become accustomed. But there you were thrusting your leg outward and raising your arm upward with more force than I had seen since you were a baby. The noises you uttered were three deep moans in rapid succession as I put you in your stroller. Each caused me to immediately stop and stare, watching and fearing what may come next.The sounds and the movements were noticeable because they broke through the quiet. Noticeable because they signal a change. I wish it were a positive change, a sign that you had something to say. I know it is a sign of regression. Your movements and voice are controlled by a brain that is slowly losing the ability to function. Your brain is misfiring sending out signals that your body struggles to interpret.Your eyes, once the vibrant window to your soul, are now the clues to your seizures. Your eyelids perpetually half mast. Your pupils traveling in separate directions. The new movements and sounds come alone with fluttering eyelids and an occasional quiver of your body. They aren’t the seizures of the movie screen. These are small, private, beginner seizures. They are the ones that teach me how to control my reaction. How to hold you so that you continue breathing. How to remind myself to also keep breathing. We are all but assured that there are more seizures to come.I prepare myself for how I will meet them, but for the moment I close my eyes and think only that today I heard your voice and yesterday I saw you move. Noticing something so small shows me how small my world has become and how intimate a relationship we have. I write it down so I can place that small moment of your small life into the big world. I share it so others will pause and find value in the smallest of their mundane moments. I feel the impact of your small movements in your small life and it's big enough to imprint your soul in my heart for eternity.
What is disability?
Ever since Talia's diagnosis I've wrestled with the identity of her as a "disabled child." As she was getting diagnosed I struggled to fall asleep while crafting plans as to how best to advocate for my child with potentially severe disabilities. What school system would I have to do battle with? What wonderful therapists would I need to push my early intervention system to include on my team. In the final days before diagnosis I was near panicked about the idea of my disabled child turning into a disabled adult who would need a long term care facility. I let my brain travel so far down the road of potential disability that when the diagnosis of terminal, untreatable Tay Sachs came, I was left both reeling, and oddly calm. It's a terrible thing to say out loud, but the knowledge that Talia's suffering would be brief was one small comfort in this obvious horrible situation. My baby, 11 months old at the time of the diagnosis was now, and had always been, terminally ill. Does that make her disabled?The answer sounds obvious. She is unable to do developmentally appropriate activities. She is differently abled than all of her peers. Of course she is disabled. The New York Times recently started a series of op-eds written by people with disability. I tried to see myself in the pages, I tried to see Talia, tried to wonder what she would say. My mother even wrote a piece early on about my experience parenting a child with disabilities. I refused to see myself in that either. I said "I'm not parenting a disabled child, I'm caring for a terminally ill child." It's blunt, but to me there is a difference.I hadn't, at that point, felt like my experiences fit in those pages. I hadn't struggled against the system yet. Her disability has been hidden in plain sight. Talia was still a baby and despite her diagnosis she looked like a calm, sleepy child and that's how the world treated her. I don't plan on pursuing medical intervention designed to extend Talia's life, so my parenting of her has consisted mainly of snuggling and feeding her, as I did when she was truly a baby.Talia is now 20 months old, and my feelings on disability are changing. Attending the NTSAD conference helped me to see Talia in the greater spectrum on children with this disease. I saw her as both more alert than I had given her credit for, and had to come to grips with the fact that she may live longer than I expect. One of the challenges of this disease is that no clear timeline exists telling us how much time we have. 18 months is a typical time children start to experience seizures, but Talia hasn't had them yet. Many children live to the age of 2 1/2, and those with feeding tubes can live well beyond that.The unclear timeline is a huge challenge to mentally prepare for. It's also a challenge literally prepare for. I've held back on bringing equipment into the house that is purely medical or designed for special needs kids. Why? Partly because her baby high chair, stroller and car seat have worked out very well for us so far, but I'm sure a part of me is trying to hold off the disabled label for as long as possible. I want to keep us in the bubble of babyhood. I want to keep the world looking at Talia and commenting on her wild hair and calm demeanor rather than avoiding eye contact because of fear of the unknown.As Talia continues to grow, but not develop, the choice to see her as a child with or without a disability is no longer a choice. She is beginning to grow out of her baby equipment. I have begun to research special needs car seats and high chairs that can hold her body upright. The most obvious change is that I got a disability parking tag to use in the car when I have Talia with me. I feel guilt when I use the tag that I'm taking the spot of an elderly person who needs it. I have fear that someone will confront me about our hidden disability. I prepare answers in my head to rude questions that remain unasked. I prepare answers too for my children who wonder why we now get to park in the special spots. This marker is physical confirmation of the disability that exists in our home.As large part of me wanted to magically slip from parenting a dying baby to grieving that baby without having to experience the disability and medical decline will inevitably precede death. As I've certainly learned by now, I don't have control over what is coming, I have control only over my feeling and actions. I can choose to see this new phase as a devastating reason to hide from the world, or I can continue to confront my life with openness and reality based optimism. The reality is, my child is both disabled and dying and fear of labels doesn't change that. I'm fighting every day to provide her a comfortable life. I fight daily to bring happiness into my house and to make all of my children feel bathed in light and joy. I fight daily to allow my mind to see the reality of the situation without allowing that reality to drag me into the dark. I fight, and for that I'm not a brave mom of a disabled child. I’m not a heroic mother to a dying child. I’m a mom, with all the heroism and bravery that that title has always demanded.
Seeking a connection
We sit eating cake together. Rich chocolate cake baked by a great friend to us both. Homemade cake delivered weekly because it used to be one of the only foods you would actively open your mouth for. I need the cake now. Need the sugar high to distract me from feeling low. I have just finished reading a Modern Love column in NY Times about a mother whose child died suddenly at age five. Couldn't help myself. Couldn't stay away. Now here I am again, contemplating loss when I would rather be teaching my toddler animal noises. When I would rather be playing with my big kids.I choose not to dwell, I choose to eat cake. I take small bits and feed them to you. No, not feed them to you- TRY to feed them to you. Your jaw and brain aren't connected today. It's the end of the day, you're tired. I'm tired. I want to share a moment with you. I push the piece further into your mouth to stimulated your mouth to do what it's been trained to do since birth. Suck or chew, seems so easy. I don't move fast enough. You bite down, hard on my finger. The pain of the bite pulsates through me. The pain of this moment overwhelms me. I cry from pain, and that cry triggers a deeper more primal cry. I know enough about myself to know I'll feel better after I let it out, so I allow my feelings to come up. I allow the tears to choke my throat. I pause. That's enough. It's enough. It's already too much I tell myself. I swallow, dry my eyes, take a breath and move on.Now I need a new moment to lift me. Cake didn't work. I run back to what always works. I run to my husband and other children playing baseball outside. Oblivious to my tears and delighted by my presence my kids encourage me to take an at bat. I swing and hit a home run. I swing hard again and again and knock the ball far enough that my six year old looks impressed. I silently thank my childhood little league coach for giving me just enough skill in-between my frequent daydreaming in the outfield to live this moment.My tears now a memory. The pain in my finger is slightly less. The pain in my heart is back down to a manageable ache. I return to the kitchen where I've left you, and there you sit, impossibly still, oblivious to my absence, yet with a slight smile on your face.
The mind isn't always helpful
I fight against it, but anger and disappointment make frequent appearances in my mind. A Facebook memory pops in of Audrey as a toddler singing her heart out. I'm reminded simultaneously of how wonderful my big kids were when they were tiny and also of how painful it is to be denied the experience of watching Talia grow and develop. I had it twice I say to myself. Some don't get even that much. I had it. I was there for my kids every joyous moment of life. I savored it as much as any hectic mom can. They are still here, they are still growing , they are providing me with wonder and joy. But these joyous memories are now being morphed into sad comparatives. Look what they did and what Talia still can't do, won't ever do. My ability to be present is pickled with the brine of sadness and the distraction of what could have, should have been. It's not a helpful path for my mind to travel down, but the mind isn't always a helpful tool.At a playground with Audrey on a monday morning I watched her joyously and expertly move from one piece of challenging equipment to the next. Talia stayed at home with a babysitter. I feel both the regret of not having her with me on this beautiful day and the simultaneous gratitude of not having her with me so I'm spared the need to talk to other "new" moms. I feel the sadness of seeing children her age delight in challenging their bodies and I feel distant from the look of exasperation, pride and exhaustion on their mothers faces. I'm one of them, yet apart. The idea of mom small talk curdles my stomach. The possibility of obvious pleasantries like "how's it going" or "how old is your daughter" makes my body tense.I do better when hanging with older kids. I do better when pretending Audrey is my youngest kid. Keeping Talia a perpetual baby in my mind. A being who needs only the comfort of my arms and isn't spending her days crying for lack of playground time. She knows only this world of limited sight and limited mobility. She is happy for time spent on a comfortable couch, in a pair of loving arms, outside with the breeze on her face. I do better when I see her for what she is, not what I wish she was.
United in being unique
Some thoughts on my first National Tay Sachs and Allied Disease conference. There will be many posts to come as I process this past week but I wanted to get some of them out there quickly before it fades. -The first family I met had a 16 month old girl you looked just like Talia, down to the curls in her hair. What was the first thing we talked about? It wasn't feeding, or wheelchairs or the utter sadness of our common circumstances. It was how their hair gets so easily matted in the back of their head and how to best get rid of cradle cap. It was the most normal conversation in the midst of the most abnormal of times because our girls shared a disease, but they aren't the disease. They are girls with tangles in their hair-I felt Talia was fully understood and accepted in the space of the conference. People asked how old she was and then remarked "Look how great she's doing!" At first those comments made me scared. She's not great, I wanted to scream. She can barely interact, she's barely anything at all. By the end of the conference, after meeting more kids I understood that Talia is in fact able to tell me more than I gave her credit for. Able to express pleasure and displeasure, able to bring people joy- and that's not nothing. The joy and memories that Talia inspired in the bereaved parents was both heart warming and heart wrenching. These parents just wanted to hold Talia, feel her weight and remember the weight of their own children. The weight that still sits on their heart no matter how much time has passed. At this conference Talia gets to be the focus of attention, and I get to experience the pride of being Talia's mom. Parents return year after year because in that space they are known first and foremost as the mom of their lost baby. They return because in that room are people who have held and connected with their child. They return, as I will return someday, to reach out to the newly diagnosed and give them a way forward. I felt the love in the room, I felt the acceptance we all gave each other and I felt Talia's condition becoming normalized. She's unique, but not alone in this journey.I listened to raw stories of grief. Parents who had images of what the story of life would be and ending up in completely different genre.I was asked to recall a wonderful memory of Talia from before diagnosis. My mind stretched back. Was there ever really a time before diagnosis? Did I ever properly enjoy her or did I think, I'll pay attention to her when she's mobile, when she's able to give back and then that time never came.As I left the conference I felt that Talia was more alive in my mind than she has been at almost any point since her diagnosis. She is here, I need to accept the fact she may be here for a while yet to come. I have a renewed focus on the value of Talia's life. She is affecting those around her. She brought joy to the families at the conference, she has certainly brought wisdom to me, and she (through reading these stories) may have an impact on you too. I embrace this effect. It's what will remain when she is gone. The strength and wisdom she has shown me will be her living legacy, but at the moment, I need to get back to focusing on the reality, and not the legacy. The beautiful person in front of me, and not the painful future to come.