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.

 

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.

It’s Complicated

Complicated seems to be an accurate summary of life right now. I’m living with simultaneous truths. One the one hand I am witnessing my older children grow and change and on the other hand my youngest in slowly, inch by inch, regressing. When I’m alone with the two big kids I am increasingly getting a vision of parenthood beyond the exhausting little kid years. We have conversations during which they engage, surprise and teach me in unexpected ways. I feel intense pride watching my years of dedication, patience and love turn into beautiful, thoughtful, kind children.  On the other hand, I’m stuck in place watching 4 month olds surpass my toddler in their development and interaction with the world. I’m stuck watching regression rather than progression.  Stuck watching the product of my dedication, hard work and patience move increasingly into a realm beyond my understanding where her beauty, thoughts and kind eyes are no match for her underlying defect. I’m stuck under the weight of her body and the weight of my thoughts.

Living with the knowledge of Talia’s demise is manageable in my day to day life, believe it or not. I’m not crying in the corner every day, I’m not dwelling in the sadness, I’m not “putting on a good face”. What I am doing is focusing. Intensely focusing on each moment. The joys of my life, and there are still many, require great focus to not allow them to be overtaken by the great sadness. By focus, I in no way mean that I put blinders on and pretend that the good is all that exists. Without acknowledging the truth of Talia’s situation I put myself at a great risk for the sadness to swallow me whole after she is gone. The focus is more like a camera that sees the full picture and then decides to zoom in and focus on one aspect of the shot at a time. The whole picture is still there, and I can-and do-change my focus many times a day. Not every picture is pretty, but the sum of them is my life right now, and it’s still a beautiful sight.

Some snapshots of the past weeks:

A typical trip to the grocery store, zoom in-

The baby food aisle was so unexpectedly depressing I had to pause in the store and collect myself. Choosing between the apple blueberry mash or the pear pineapple and knowing that NONE of it matters. Talia shows no preference for any of the food. It doesn’t matter what I choose, it won’t change anything for her. The jars of food with vegetables snuck in depressed me even further, they are all an indicator of the ways in which we parents try to make the absolute “best” decisions for our kids all the time. Fretting about them not eating a sufficient amount of string beans in infancy to help their little brains grow. The illusion that these tiny decisions matter to be overall development of our children.  None of this matters for Talia. These jars are same ones I’ve been looking at for over six years at this point (and over 18 months of Talia’s existence.) These jars became the symbol of my lack of forward movement and my poor daughter’s lack of future.
Change focus

A vacation to visit grandparents in NYC allowed me to leave Talia comfortable in their home while the big kids and I navigated the subway without a stroller. This is a huge deal in the city where elevators are unreliable and stairs are plentiful. I can see how much more fun our trips are going to get as my kids age and can move about even easier through the maze of transportation and people. It was a joyous experience for me and reminded me of the fun I had growing up in the city. I felt energized by the city, and by my ability to share it with my growing children.


On that same NYC trip we walked through Central Park with Talia in a carrier on my body. The sun was warmer than it should have been for a February day, our moods were joyous, my big kids, my husband and my baby joined the throngs enjoying the day in the park. As soon as we started walking Talia started smiling, she started making sounds and then-a parting in the cloud of her mind- she laughed. Full voiced, full of heart, full of happiness. Every movement of my body caused hers pleasure and she shared that moment with me with as much interaction as she is able to give. It was beautiful. I drank it in. I marked the memory in my mind and in my heart. I hope to be able to recall the feeling of that moment in my bones for the rest of my life.

Strength and Sadness

Hold your child, rock them to sleep, feel their body slacken, feel the weight of them in your arms, assess the tension in their body, sense their muscles relax, their minds drift away and feel them melt into your body. At that moment there is peace, warmth and silent comfort for both mother and child. All parents know to wait a beat after their child has fallen asleep in their arms (purposely or not). Feel that moment of love, of connection. Also, wait for that kid to really be asleep before moving or fear waking the kid and having to start all over again!

Last night as I held Talia after a particularly challenging day (week). She hadn’t slept most of the day, disturbed by something I couldn’t figure out.  I sat and rocked her in the chair in her room. As we rocked I held her body curled against my right arm, made sure her weight was stable against my chest so the rocking wouldn’t disturb her equilibrium. We moved back and forth together, and I tried to assess the slight movement or a sense of her deepend relaxation. I felt unified with this beautiful being I had created but also mystified by forces I cannot control. I felt her body melt further, I saw the stillness in her body. She must be asleep now I thought, using all my years of mothering experience to know what the weight of a sleeing child feels like. I gently tip her back into my other arm and gaze at her face-completely awake and staring out. At me? At the dark world? I can never know. I feel sorrow. I had allowed myself in that moment to pretend that she was a typical child. That the lack of tension in her muscles meant something more than being trapped inside a body whose brain won’t, can’t cooperate. I felt a surge of anger colored by sadness. I lift her towards her crib and she giggled. Looked up, at me-sure I’ll give her the benefit of the doubt, it was at me, and laughed once again. I blew a puff of air in her face and she laughed once more. I lay her in bed and left the room before the sorrow overwhelmed me. 
I question everything I know. I don’t question the nice moment we just shared, but question her life. I grieve for her life.  Her still, silent life.  I want to reach her. I know I do reach her in small ways, but I want to be inside her mind. Understand her, communicate with her.  

 I want not to break. I will not break. I want to not be told how strong I am how amazing it is to heave this strength. I want to not have a reason to be strong. Yet I do understand it takes strength. Strength not to be consumed, strength to stay sane, strength to live my surreal life. 

I want to remember. I want to write so I can’t forget these small, confusing moments of Talia’s short life. It’s the least I can do for her. And I thank you readers (although I pretend you don’t exist) for reading what I write and being a part of the circle of love that Talia and I exist inside of. It takes a certain amount of strength to read these posts, I’m sure, and I feel stronger  because of you all.