Travel

11/23/16

We just returned from a trip to Boston where Talia was nothing more than a weight in my arms (a warm weight, a heavy weight). We lugged her around to tourist attractions and restaurants. She didn’t get in the way much, other than the physical effort of carrying her when she tired of the stroller. She didn’t react to the aquarium, was unimpressed by our fantastic meals and had no fun at a children’s museum. The older kids had one good hour in each museum before getting the glazed over look in their eyes that all kids get after looking at interesting things for too long.

I had a gut check in the children’s museum when I said the absolute wrong thing to a mother and girl in a wheelchair. As the mom remarked in a friendly voice at how happy she was that the elevator was large I sputtered out “yeah, so big one could do jumping jacks in it”. I immediately gave myself a inner brain smack. I’m sure if the woman wrote a blog, I would have ended up on it as that ass who says the wrong thing. No one is immune from good intentions coming out as idiotic comments. Good reminder to be more patient with people who speak with me and inadvertently say the wrong thing.

Talia seemed profoundly happy to be back home. She took an incredibly happy bath and then seemed completely content in her high chair. She does know our home, our routine, her comforts. She laughed on the floor of our playroom and we took a “tickle break”. I know that when Talia laughs it means she is ready to interact with us. Ready to receive our love and show tangible results that she loves us. No far off stares, no neutrality. She laughed with her whole body. She cooed like a cat. She vocalized and made herself laugh at the sound of her own voice. She is happy and we are happy making her happy. The fact that these tickles ALWAYS result in enormous amounts of spit up do little to dampen the joyous way I dig into her ribs for the desired effect. I just keep tickling until at some point my tickles don’t work anymore and with little warning she stares off again. I’m grateful for the time with her and try not to long for more (although I always do).

Now The Pressure's On

11/17/16

Wow. The intensity of love that came my way yesterday was overwhelming. Trust me when I say that I would never wish a life altering experience like this upon any of you and yet- I would wish that each of you gets to experience once in your life the overwhelming response of love and community that I felt when I revealed Talia’s condition to the world. I feel lifted up by your sea of support and bowled over by this tsunami of love. I’ve always believed in being true to my own emotions, dark, light, judgey and sarcastic as they may be and sharing my experiences openly, regardless of judgement and this day has proven that point for me once again. So thank you to all my friends, family and new readers.

The posts I wrote up to this point were written seen only by me. That all changes now that it’s public. I hope that doesn’t cause me to filter my thoughts differently or present myself as something other than what I truly am. So, love you all though I do, I’m going to do my best to forget that you are even reading this. The point of my writing is to process my own thoughts and I made it public to give you who are interested a more well rounded view of what our life is like, rather than a snapshot of how I happen to be doing on one isolated day. I’m not seeking out likes on Facebook or even comments here on the blog. I feel honored that anyone wants to read this, but please know that I feel your love whether or not you meticulously follow my posts or not.

Post diagnosis I’ve struggled with the idea that now “My life has to mean something” or that everything I do will forever be seen through the lens of “in spite of everything.”As in, she looks so happy “in spite of everything”, or look at her successfully go to the grocery store “in spite of everything.” I understand that now I’m a part of a narrative, and that I truly don’t know the ways that this journey will change me, but more than anything I want to my family to be viewed as you would any family (with a smile, and some mild judgement behind the eyes!) I don’t want pity and I don’t want to be elevated into some kind of saintly mother figure. Trust me, this could have happened to any of us, and we are all stronger than we know.

With all that behind me, I again want to say thanks. The brilliant light you shone my way in the past 24 hours will glow forever inside me helping me find my way out of the darkness to come.

A snapshot of Talia

11/16/16

Talia’s condition as of today is more challenging to us mentally than it is on her body physically, although that will soon change. I though it would be helpful for me at a later point to look back and remember where she is at today.

Talia’s body is weak all over, she barely moves throughout the day. When she is most stimulated, she will gently kick her legs or slowly raise her arms. Sometimes in her crib as she wakes up I spy her grabbing fistfuls of her voluminous hair and almost swirling it around in her finger. Her hands are perpetually clenched is tight fists that I can coax open with a gentle graze of my finger. Her toes are perpetually pointed, she’s a ballerina in her own right. Her arms and legs are almost always completely straight, sometimes locked in that straight position, unable to bend because her brain can’t figure out the right signals to send. Her head never rests centered on her neck, instead flopping from one side to the other or resting completely back, looking up towards the sky in continual wonderment. Her eyelids are ever drooping giving her the appearance of continual sleepiness.Her only unhappiness comes when her weak body is asked to make a bowel movement, the act of which is so difficult for her, her whole body convulses. Given all the weakness in her body, one might assume she’d be angry at all the things she can’t do, but the truth is-she has no idea of what she is “supposed to be able to do”.

She is content, the way a baby is content in those first few months when they are simply allowed to be enjoyed without needing to be “trained” or watched for each minute milestones. If only I could be so content watching her, letting her be. Instead I monitor her, not for milestones of her advancement but of clues to her decline. Her eyes sometimes roll up to an unnatural degree. I can bring them back down with a gentle stroke on her nose, but know that someday those eye movements may be a sign of seizures. Her eyelids sometimes blink independent of each other, like a defective robot in an evil movie. Talia doesn’t seem to notice my analyzing, seems unfazed by her fault brain signals, and so I move on too.

Talia’s most active time is when she sits in her high chair and I feed her. Her hungry mouth still knows when to open and her jaw still knows how to chew. Most importantly,  since this is what I monitor the most, her throat still knows how to swallow. Most of our day is spent in the high chair trying to get Talia to take in calories. Yogurt and applesauce are clear favorites, as are graham crackers and cookies. She expresses her clearest opinions when presented with food she finds unappealing. Green mashed things, those horrible baby food meat dinners-life’s too short (mine, not hers!) to try and force her to eat those! I enjoy mealtimes with Talia, they are a brief moment of interaction, however transactional, where we are both contented at the end.

Silent Signs of Love

11/14/16

I’ve finally found a title to the blog that makes sense to me. Talia is a happy but immobile child. She is at her happiest in my arms, and no one else’s. I know how to hold her so that her head doesn’t flop forward or recline too far backwards. I know how to wrap my arms tightly around her but also leave her arms free to rise, if she should have the inclination to do so. I know how to place my finger near her clenched fist so her brain remembers that her hand can open and explore. When we sit on the floor together, I am her back rest, propping her up so that she can interact with her siblings as they play their games. My body is her everything. I worry that when she is gone I will carry the feeling of her weight with me like a phantom limb. I show my love to Talia through my body, giving it over to her needs. She shows her love to me with her eyes, staring intently, and contently, into mine.

Talia is nearly silent throughout the day. Sometimes that silence is deafening and I try to drown it out with podcasts, books on tape and music. Other times, the silence is a form of love. When I hand Talia to a sitter, or even a grandparent and she immediately starts whining or crying, I know that her silence in my lap is a sign of her utter contentment. With Talia one has to look deeper and appreciate the small signs she gives. A small vocalization, a single sound, can move me to tears. A lift of her arm can inspire me to congratulate her on the immense effort it took. Drinking a few ounces of milk from a sippy cup can cause me utter joy (because I’m not her utter!) The only time her contentment isn’t subtle is when she breaks into laughter. The warm joy that spreads throughout our house is so infectious that we all pause appreciate it. Talia’s laughter is a clear indication that she is still here, still a person and still in need of interaction. Laughter breaking through the silence is a sound I fear I will miss the most as her disease progresses

Progress

11/4/16

David got home early from work. Cooked dinner. Kids were happily working in workbooks. Talia was alert and laughing and he said “life is great”. And then we both paused and looked at each other. It was the first time he had said that since the diagnosis three months ago. Life is great, and simultaneously terrible. It’s important to remember to focus on all of the working parts of our lives rather than continually obsess over the broken part. Like one of Talia’s doctors told us, 99.99 percent of Talia is working perfectly. That missing 00.01 isn’t something to be overlooked, but also shouldn’t override the rest.

Reflecting back on our lives post diagnosis-

The first month post diagnosis I didn’t want to connect to Talia at all. I felt like any connection I made to her would only make the loss of her greater. But you can only ignore your child for so long before they do something cute or unique that brings your focus back to them. Even Talia with her limited ability can still laugh and look with adoring eyes at me. I could only stay away for so long. 

The second month I truly just wanted her to die. It’s blunt to state it that way, but it’s true. Just go away so I could focus on Nathan and Audrey. I felt angry at her for sucking my energy and my focus. Angry for the amount of effort every day took out of me. I wanted to protect her (and us) from the pain that was coming. At the end of that month I met with her palliative care doctor who helped me look at Talia as a girl who still has life left in her, and not to resent her for that. “She’ll die when she’s ready. When her body is ready” she said to me, and looking at Talia I can see that she is still very much here. Her body and her mind are still here, and I simply have to take her for where she’s at in this moment, and not allow myself to think even a moment into the future.

Now I’m the third month I can look at her more calmly. I can appreciate her joy at bath time and in the pool with a pure joy only partially tinged by sadness. I can see that her eyes are still full of life. This won’t be the month she dies. That’s ok. She’s still here, physically and mentally. She still wants more from this world. I can give it to her at the moment without resentment and many times without sorrow. I can delight in the rare laughter that pierces the silence. Her laughter is a gift she gives to me, a rare treasure that I unearth from deep inside her brain, and I’ll treasure every one.

Free Floating

10/26/16

I took Talia to the Y to use her neck floatie (oteroo) for the first time in a public pool. She has loved it in the bath tub. The sense of weightlessness makes her immediately smile. Manuvering her into her bathing suit is complicated since she is unable to help move her body and the dressing room is cold. When we got to the pool the lifeguard came over to tell me that I couldn’t use the floatie since it is not coast guard approved but I calmly told her that my daughter needed it and she immediately said “if she needs it because of a condition, she can absolutely use it” and she even took down my name to ensure that all other lifeguards would allow me to use it without needing to ask me about it. It felt like just the kind of kindness that the world should offer a person in need. The whole space felt warm and welcoming. As we entered the pool Talia’s eyes got bright and she immediately started smiling, cooing and laughing. I almost broke out into tears right there. She kept her eyes on me the whole time. Her arms swayed in the water. At times her legs were directly underneath herself like she was standing. It felt magical and beautiful.

I'm all she needs

10/24/16

My physical presence is all Talia needs to be calm. She doesn’t need much from me, just my physical body. My warmth, my smell, the angle I hold her body, the way I support her head. My mother says that when she looks at me it’s like she’s staring into the face of God, and I believe I see that too. I am Talia’s everything but I cannot let her be my everything. I cannot let everything be lost when she is gone. My family was whole of which she is a part, but not everything of that whole. Without her we will be missing a piece, a forever incomplete puzzle, so close to perfect, close to complete, but not quite.

Sister Love

10/25/16

Audrey talked with our babysitter Maggie about a friend of the sitter’s who had passed away and Audrey said “you mean died?” I asked her what dies means. She said in a cheery voice, its when you go to sleep and never wake up.” and I forcefully said “No, that’s not what it means at all to die, and Maggie backed me up. We said, dying is when your body no longer works and your blood stops pumping. It has nothing to do with sleep. It’s not like sleeping beauty. She listened and moved on immediately, as four year olds do, but I know that conversation is going to come back up again and again. How badly I wish I didn’t have to search for natural moments in our day to shape her thinking about sickness and death. Audrey does a beautiful job of loving Talia exactly as she is without demanding anything more from her. Audrey makes silly faces to talia, sometimes with a reply, sometimes without, and she just continues that one sided conversation with glee. She holds Talia’s hand in the car. She loves to help at Talia’s therapy knowing that when she is the aide, Talia is able to laugh through the work. At the same time, I watch the joy she gets from playing with the other toddlers in the neighborhood and I admit that it does hurt to see her form relationships that her sister is unable to provide. 

One of the things I’m most upset about with this sickness is that Audrey is being robbed a sister. Someone who would play princess with her and watch her dance, and then dance with her. Someone with whom she could confide her secrets and create magical worlds with. I had the fortune of having three kids in the same order and gender as my family. I’m in the middle, just like Audrey, and i know the joy (and challenges) of having a younger sister. I don’t think the pain of that robbed experience is ever going to fade for me-even if it does for Audrey.

Am I Unique?

10/23/16

 Is it my responsibility to write my experience? It’s unique, but not nearly unique enough. As I research I see that there are too many stories written by bereaved parents about their experience. How do we all survive? Do all of us succumb to depression? Is all of our happiness tinged with sadness? I hope not. I hope to live pure happy times without the outside view of myself as “finding joy amidst the sadness”. I want the maintain my ability to understand good times as they happen and to be purely in the moment. As a side note, I also want to be able to focus on something (anything) for long enough to fully complete it. Even writing this piece requires me to attend to something for longer than I feel able to do. 

I just read a piece in the times about a father whose daughter was killed at age two by a stone that fell off a building. Death can come at any time and destroy the image of your family that we all hold to. Talia’s death isn’t coming suddenly, its coming excruciatingly slowly. Its a slow moving train and she’s tied to the tracks powerless to stop it. We all see the headlights, but have no idea of the rate of speed. Is it going to be tomorrow? Unlikely since I made her laugh today. It was not the laugh of someone at death’s door, so every day I reassess her timeline and remind myself to bank this good day in my memory.

The Reveal

10/14/16

Every conversation I have about Talia ends the same way: there’s nothing to say, there’s nothing anyone can do to take the suck away from the facts. In the process of telling all of my friends I’ve heard the wind get knocked out of their lungs and the tears come to their eyes. In most of those conversations it’s me doing the comforting of them, and I’m ok with that. This diagnosis affects everyone who I come in contact with. It shatters the illusion that we have any control in this world.  Of course it’s directly happening to me and my immediate family, but even those on the sidelines are entitled to their feelings. I am ok sharing my experience and my grief.  The typical response is where the words sink in for a few seconds and then the people start crying or staring in shock (a smaller version of what my own face looked like). Many people then ask to hold Talia. This is my favorite response- Can I hold her? It’s like saying “Can I bestow some love upon her while she’s here”. It’s those moments that make me feel least alone and most connected to both my community, and to my daughter.

After the reveal conversation however, I don’t always make it easy for others to talk to me about Talia. I talk about her death in the same way I talk about many topics, with an attempt at humor and a sarcasm that at first glance makes it seem like I’m not taking her condition seriously. Then at other times I’m just sad, deeply sad about the whole situation. It’s not fair, that’s obvious. Many families go through experiences that are not “fair”. I could dwell in my anger over the false negative genetic test or I could get sucked down by the depth of sadness that clearly exists in the situation, but the only person that hurts in me and my family. Audrey and Nathan have such joy inside them, they need to see the joy inside me. When I’m with them, mostly that joy is genuine, but when I feel sadness rising up inside me, I put my acting training to good use and just act happy long enough to be pulled up from the depth and refocus on the positives in my life, which are still many.

Solitary Confinment

10/1/16

This sucks. It sucks too much to dwell on. I want to be like a river letting the thoughts, dark, morbid thoughts, burble up and then pass through -flowing downstream and leaving as little a mark as possible. Why do I even want to write any of this down? By putting my thoughts in print I make them permanent. I will forever have record of the sadness of this time. I barely want to acknowledge what’s happening so why would I want anyone to read the thoughts I barely want to think? Maybe I’m writing because I’ve always felt better by the act of sharing. Maybe it’s the actress in me seeking attention or maybe it’s my belief that the more you talk about your problems, the more you find people who can relate and in that sharing of experience, you feel less alone. Maybe one of Talia’s lasting legacies will be this act of drawing me closer to all of the people in my life. A friend’s mother recently said to me “you’re not alone in this”. And I knew her to be right. In fact, I’ve never felt less alone. The act of stay at home mothering is sometimes a solitary and lonely experience, a tight knit unit of mother and kids-need and fulfillment on both sides but this moment, where Talia gives little back, is too one sided to keep to myself. 

Motherhood

9/23/16

Suddenly, two months post diagnosis I find myself once again torn by a question I thought I had put on hold. How do I get out of the house and find professional fulfillment. I had just started to think about that question as Talia was growing. Knowing she was my last kid I knew the time was coming when I would go back to work, but after her diagnosis I assumed I was putting that on a serious hold. I’m Talia’s comfort and everything, so I’m in it until it ends, but she’s not giving much back these days. It doesn’t matter if I play with her, she’s content doing nothing in my arms. She’s primitive. She wants to eat and sleep. She smiles and laughs sometimes, but mainly it’s her that makes the laughter happen. When I notice she’s ready to be stimulated, I tickle her and she laughs. Then that moment ends and the rest is spent watching her tear at paper happily and then rub her eyes. In a way, it’s good to know that I’m not letting myself get consumed by Talia completely. It’s the same old mom struggle with a twist: how can I be there completely for my children while also having something for myself. The answer could lie in turning her disease into a cause, and I certainly may do that, but I also want to be true to myself as a separate human being who had wants and desires pre-Nathan, Audrey and Talia. At the moment, the only thing that makes sense to me is theater, and the arts in general. There are things so painful they can’t be spoken, but they can still be expressed through other means. Maybe my professional satisfaction is to be found somewhere in the realm of the arts. For now, I’ll go back to listening to soundtracks and trying not to cry at their beauty!

Disability

9/14/16

Inspired by the New York Times articles on disability, my mother wrote a piece (non-published) about my time parenting a disabled child which led me to write this post:

Am I parenting a disabled child? Not in my mind, or maybe not yet. I’m parenting a dying child, one for whom there is no hope. There are no treatments to hunt down and no therapies to stave off the inevitable and yet at the moment, my 1 year old should be toddler is in fact still a baby. Friends and strangers on the street see her see only her unruly mop of hair and shining eyes, they don’t see the lipids building up upon her brain slowly leading to the tipping point of inevitable decline. Her disability is hidden from sight, for the moment. I have yet to experience the thing many parents with disabled children endure: casual bystander asking inappropriate questions, or worse, the person I know avoiding the topic completely. I haven’t had to fight the early intervention system for every last ounce of therapy or do battle with the school system to ensure my child had the appropriate environment in which to grow. There is no growing for Talia, only decline. I still fight for her, but know that each intervention she receives is only about maintaining skill rather than learning new ones. As Emily Rapp illuminated in her op-ed in NY Times, there is a certain freedom to this diagnosis. I can parent Talia free from many of the anxieties over decision making that haunt parents. It doesn’t matter if she eats a cookie every day, watches tv with me constantly or sleeps on her stomach. If what we do  makes her happy, it makes us happy- and that’s all we’ve got right now. 

I feel a certain freedom that parents of profoundly disabled children don’t have. I don’t spend nights worrying about Talia’s life 5, 10 or 15 years from now. While she was getting diagnosed I was having premature panic attacks about her living as an adult in assisted living homes and getting prematurely depressed about the point when the child becomes a disabled adult and funding for services disappears. The system of support for children with disabilities is a tangled thicket of some good intentions and way too few resources. It’s a world I will inhabit for a short while.

Side note:

Talia has a ridiculous habit of giggling through every terrible doctors appointment or serious video about preparing for the worst. Like she wants to remind me that she’s still here, still aware and still capable of bringing joy to herself and to me.

Sibling Love

9/12/16

I want to view the world through the eyes of my kids.

Nathan said proudly to Talia speech therapist “She just loves to look at the light”. So simple a thing, but he noticed what made her happy and wanted to share that information. It wasn’t followed by any “but. . .” It was just- here’s where she’s at. She exists and has desires.

Audrey wrote a card to Talia for her birthday “Dear Talia- I love you because you are my best friend. I love you because you hold my hand”. Audrey is the one reaching for Talia’s hand and she’s the one who sees the happiness in Talia’s eyes. She’s not asking more of Talia than she is able to give. I’d like to be like that (with all of my children).

Tingling with Sadness

9/5/16

These are the first notes I thought to write down a couple weeks after the diagnosis.

My body is tingling and my chest is heavy. Every song I hear on the radio has new significance, from the Hamilton soundtrack song “Push Away the Unimaginable” to John Mayer “Gravity, is working against me”. Talia’s body is so weak she is literally working against gravity, and she gradually losing the fight.

My natural inclination is to not make Talia laugh or teach her anything because it reminds me of the fact that she is a person, not a newborn. That this period of holding and cooing is not a temporary milestone on the way to further development

I have to remind myself that watching my children interact with Talia is a blessing and is building a part of their souls, and not building a burden that they will have to over come.

I can’t confront my emotions until after my other children are in bed, and I’m exhausted by that point anyway. David and I stare at each other across the dinner table and slog our way through until the house is quiet with sleeping children and then we can barely muster the energy to discuss the multiple terrible thoughts that had crossed our minds earlier that day.

Nathan said pre knowledge of diagnosis “I remember when Talia was born. I don’t remember visiting Audrey, but I remember Talia” I hope that memory is always seen in a positive light and not through the pain to come.

How can I capture this in words?

8/20/16

How can I possibly capture the way I feel. How could anyone? I'm debating even trying to capture it in words. Who actually wants to read this? Would I be reading something like this, a story about a dying child and her loving family, if it hadn't hit me personally. The answer to that is, I probably would. I've always been drawn to tragic stories or stories that capture the unimaginable. I've always found catharsis in reading people’s personal struggles and the tiny triumphs they find within the worst of circumstances. I read, I cry and then I put down the story and then either feel smugly good about my own life or spend at least an hour trying to be a better person and not sweat the small stuff. How quickly life can change. Now I'm at the center of my own tragic story and I can't find it in myself to weep fully and get  to the catharsis point. Catharsis come at the end of the story perhaps, and I'm far from the end. I either spend my days avoiding looking at the end, or I'm quietly hopeful that the end will come right away and spare us all the middle section of suffering that is about to hit us. Live in the moment is my new mantra, don't look back at what life was-what my expectations for my family were, what my beliefs about the universe-but also don't look ahead, don't think about the decline that is to come, don't prepare for the imagined grief that is to come, because doing that brings my mind away from the now, and for now we are here, we are happy, we are alive.

My positive outlook on the world has always been one of my strongest attributes. I used to wonder why people couldn't just make a choice to be happy. Wake each day and decide that they would just do everything possible to be happy. Over the years I think I've learned that if that choice were so easy to make, then people would always choose that. Life is a struggle even in the best of circumstances. We can either look down, focus solely on our experience and sink under the weight of it or look around and see the commonality of all of our struggle and be uplifted by that. My life is going to include a struggle that is unimaginable in other people's worlds, but I refuse to sink. I'm finding a lot of song lyrics that speak to me in new ways. My current mantra comes from Dave Matthews "Celebrate, we will, for life is short but sweet for certain". and also from the musical Hamilton "Look around, Look around, how lucky we are to be alive right now."

Can I still feel lucky after such an unlucky thing happened to me? After the odds of Talia having this specific disease we thought to be so minute? After I putting faith in a medical system to protect me and falling into the unlucky percentage of people for whom the system fails? --Well, I'm trying to still feel lucky, or at least grateful for what I do have. I have a kind husband who has been my perfect partner through ten years of marriage, one year of infertility, 12 years of medical training and three beautiful kids. He possesses a beautiful ability to be truly present in each moment while tackling hard times piece by piece. I have Nathan the embodiment of contentment, joy and whose generosity of spirit is unmatched by any other human being on the planet. I have Audrey to keep my life unpredictable and full of imagination. Watching her feel the music in her body and express it in dance reminds me the power that the Arts have to express things that words fail to capture.

Talia has always been a calm child who was happiest snuggled in my lap. The eyes are the window to the soul, so it’s said, and Talia's eyes have always sparkled and shone with light. Her eyes are the lightest of the family, the have always looked inquisitively around and understood things that her weak body wasn't able to confirm. They crinkle when she smile, they sparkle when she laughs, they penetrate my body to my deepest core.  The thought of those same eyes growing dimmer with each day is a thought that brings me infinite sorrow. While they are still shining I promise to take her on hikes and show her all different sorts of lights and shadows that exist in this beautiful world so the memory of those images will live in her long after she can no longer see at all.

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