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 focusA 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.
Surf Your Emotions
How to survive the unimaginable? Let the feelings come, respect whatever they are, no matter how negative or dark, but don't dwell in them. What's a good metaphor? Surf the waves, feel them lift you up and pull you down, if you fall underwater, don't worry, you know how to swim. Hold your breath, dive down deep, but then reemerge, get back on the board and surf again.I know there is something terrible happening in my life. I see it and I know how easily it could suck me and my family down into a dark place. I make a daily choice to not allow us to be drowned. David and I set the example. We don't ignore Talia, we don't make light of her condition (other than some off color jokes every now and then) but we also don't make her illness the sole focus of our lives or allow our sadness to affect our other children's view of the world. I admit to feeling overcome with emotion sometimes just as other times I try to notice my sadness without allowing it to touch my core.My goal every day is to try and live this balance where I respect my situation without allowing it to become my sole focus, and some days are more successful than others. Quiet days are the hardest. When Nathan and Audrey are at school and I don't have a plan for Talia and I the quiet can almost cause me to crack. It's in the quiet I reflect on the fact that there is no place for Talia and I at the moment. She's not a cute newborn, she's not a curious toddler, she's not a slowly developing special needs child. She's very specific. She's a child with no future, and there's not really a playgroup for that (nor do I know if I would attend one if there were). It's in the quiet time I think about the other families trying to survive the loss of their child. The unfairness of the world. The ways that every person struggles to create a safe, happy space for their family in the face of injustice, bad luck and tragedy. It's in the quiet I question where MY life is going, when I get to live my life for myself and not for others.Thankfully, the quiet moments pass, the older kids return and the chaos of family life resumes. I take a breath, appreciate the noise and life that fills the house, and then- just as quickly- miss the quiet again!
Live a pure moment
Do you remember? Remember that time before Talia started her real decline, right around Chanukah when we ate a great dinner and all sat around playing Uno together? Nathan chose the game. Audrey dealt, proudly counting out each card. Daddy settled in and even Mommy wanted to play. Talia sat in her bouncer, quietly at first just watching the action. Remember how she started laughing, unprompted, finding hilarity in something-the bounce of the seat, the light in the room, the love of her surroundings. Remember how Mom placed her cards down and picked Talia up, cautiously as to not startle the laugh away, and it worked because she just kept giggling. She laughed hysterically at the sound of the cards rifling through our hands. Chortled at the silly noises we made in her ear. Delighted in the puffs of air we blew in her face. She smiled fully at the hugs Audrey gave her. Her laughter was long, deep and full bodied. Remember the smile on your mom's face-so full it almost broke her, tears held away by the thinnest of margins. We didn't pick up a camera to capture it. We didn't want to spoil the moment- but we know the future enough to have made a mental marker of each smile. We wanted to live in that moment forever. Warm and safe in the company of each other. In the family we made, in the moment of pure love
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Questions and Answers
Not every post can be a fully formed thought (since as a mother of three young children I have trouble forming these anyway) so I figure I would try a post of quick questions and answers (the answers ended up being longer than I thought!) If you have any that you've ever wanted to ask, no matter how personal you think they are, you can post them in the comments section. Below are some questions that I pose to myself sometimes:Q: What's the worst part of this so far?That's a moving target. Some of the worst time was spent pre diagnosis in the uncertainty of what was happening to Talia. It was exhausting to be with her daily and try to get her to inch toward a milestone that I now know she was never going to reach. Then in the evenings I spent time imagining what horrible disease she was going to have and how our family would deal with it. Uncertainty is worse than knowledge, no matter how terrible the answer turned out to be.The worst part now that we are a couple months post diagnosis is watching Talia become even less responsive and reactive to us. It seems like 23 hours of the day are spent not unhappy, not happy, simply neutral. The neutrality hurts almost more than the crying. At least crying is trying to tell you something. Neutrality indicates that her brain isn't even trying to make sense of her world. It's been like living with a newborn who is all work and gives nothing back, but at least with a newborn you make silly faces at because you know that eventually they will connect your face to the word mama or dada-there will be growth. I make faces at Talia and know that while she knows who I am, her response won't, can't be what I want. Still, I'm grateful that she's not living her days unhappily or in pain. And then of course, there is one hour (sometimes it's an hour of cumulative time spread out throughout the day) where Talia really does pay attention, look straight at us and laugh at the air I blow in her face or at the doggy I pretend to be (that's a particular favorite). I've learned to really pay attention to these moments and appreciate any small amount of interaction, because I know how big these are for her, and how difficult they are for her to achieve.Q: What's the question you hate the most?A: Sad eyes, a well meaning look, head tilted to the side, perhaps a hand on the shoulder and then the dreaded question in an almost lilting speech pattern: How Aaaaaare You?I think that anyone going through a serious illness or experiences a serious loss dreads that question. Of course it is posed by well meaning people, so I don't mean to say that I hate when people check in on me, that is far from the truth. I'm obviously totally open to talking about Talia and I appreciate people wanting to check in on us, but unfortunately this well meaning question asked in the manner above usually presupposes that my life is terrible and I'm currently so fragile that I need to be handled with kid gloves. It's also SO broad. How am I? I don't know- how are you- can you sum up to totality of your experiences in the past day, week, month- all of your current stresses and joys and answer the question "how are you?" My answer to the question is "I'm fine-" I'm simultaneously terrible, maybe in that instant I'm also tired, or hungry, or cranky about the weather or something banal like that, who knows.One of the best things I've learned from Talia's palliative care doctor (who is beyond extraordinary) is how to rephrase that question. How's today? she asks. That's a manageable question. Today is something I can handle, yesterday may have been something else, tomorrow is something I don't want to think about but today, this moment, I can discuss.The New York Times (my bible) has a piece on the dreaded question along with some good tips.So what do I want of the people around me? Please do talk to me about Talia, and also ask about my other kids, and definitely talk about your life. Please don't self filter out your complaints about your life, especially using the phrase "well, it's nothing like what you're going through, but. . ." Your life is yours, and your problems and frustrations are valid too, and I want to hear about them as much as you want to share, much like my frustrations in life also go beyond Talia to include banal things like the pain of making dinner every night, or the annoyance of being both my children's favorite playmate and cleaning lady! Basically, let's be friends just as we were before. Don't try to stick my life into a tragic and triumphant movie narrative, and I'll do the same for you.Q: What's challenging about writing?A: I'm still trying to figure out how to get my true voice in writing. I'm much more sarcastic in person (as I think anyone who has met me will tell you) and I've tried to apply sarcasm to this situation as well even though there is nothing funny about it. It does seem to work for me, and David, when we talk, but then when I try to write it down I sound a bit like an asshole. I'll be honest, there are time when I would rather sound like an asshole than a living saint or some other ridiculous image that we place people surmounting tragedy into (see, I'm an asshole!) I'm going to try and write down some more of my unfiltered thoughts in future posts.
The end of breastfeeding
I think the time has come to stop breastfeeding and I've trying to assess how I feel about it. It's much more complicated with Talia than it was with my other two kids. First off, she's most likely my last child and therefore last moments of anything would have had a finality to them, regardless of her condition. Second, Talia was never able to take a bottle- which I only recognized post-diagnosis to be a result of her disease. I've been her main source of nutrition for fifteen months, and her ability to take in liquid has been intimately tied to me. It's incredibly time consuming feeding her by spoon, and I always felt that with breastfeeding she was getting quality nutrition quickly and relatively pain free, for her anyway! Thankfully, I think we figured out a sippy cup that she will drink from (thanks to a feeding therapist) and realized that she will happily drink apple juice out of a sippy rather than milk all day long. Those two revelations mean that it's time for me to reclaim my body as my own sovereign land. Talia has to exist separately from me at some point, and I think that point has to start now.Talia was never a natural breastfeeder. As an experienced mom I always knew that my technique was right and I could never figure out why her muscles couldn't figure out a good latch or a proper suck rather than a chew. Of course, looking back I now understand that her brain was having trouble communicating with her muscles even from birth. Despite her early sucking troubles we managed to figure breastfeeding out and I've been happily providing nourishment and comfort to her ever since. Unfortunately, in the past few months her muscles have gotten even stiffer and she often has either completely loose muscles, or hyper extended ones. Her arms are totally stiff sometimes while her back completely loose and curved. This muscle stiffening has affected her ability to suck as well. She goes between happily eating and, unfortunately for me, clamping down in a locked jaw position a/k/a BITING! Talia will eat normally and then, without warning, she will be clamped down on me causing pain beyond description (but any woman who has ever breastfed is probably reading this and feeling it right now). After I extricate myself from her grip she will then lovingly look at me and expectantly open her mouth again. And let me tell you what the definition of love it-- I feed her again. I knowingly put myself in harms way to keep her well and make her happy. It feels like a brief, painful, real world example of the sacrifices we all do for our kids anyway. Despite the difficulties I've enjoyed feeding Talia and feel grateful I've been able to do it so long. I hope that even without the calming magic of breastfeeding I can still be her comfort. Her port in the storm of this disease.
Travel
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!
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
11/16/16Talia'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
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 confinement
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).