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/

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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.

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!)

6/16/17

I 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

6/8/17

I 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.