On Your Death Day, another letter to Emmett

You feel more like a dream than anything. I never really had you. Never bathed you. I don't have pictures of you with your siblings. You are a dream. I can't remember some things about you, because you aren't here to remind me by being them. 

But I know in even the farthest crevices of my being that you were real. I know because the loss of you is woven like a thread into every cell of my body. I know because I died the day you died. The me that I used to be I buried with you. The me that lives only lives because you didn't have the chance. 

And I'm sorry. With all I am I am so sorry. For all the failings, all the shortcomings, all the crappy, crappy situations that kept us apart. My heart cries for you, I still need you the way every mama needs her baby; in her body and her soul, I ache to hold you and smell my milk on your breath. Not just today, every day. Every single day. 

Emmett! I didn't get to know you like you knew me. I guess now you know even so much more. You always knew so much more, old soul. What is it, this message of your life? What is it I am supposed to know and glean and learn? 

I hate life and am also intoxicated by it. I know nothing matters but those we love, yet I want everything. Because I want to feel it all. I've held my dead son and cried and drowned in grief. I have had everything stripped from me and then gutted. I want to feel the other side of human existence now. 

These things we living hold so dear - like pride and being right and getting what's ours, and getting what we can out of others - that's the stuff children talk about. That's lower level stuff. What can you give, how can you bless, how can you help, who can you grow? Do we still not see that it is in our emptying that we are fulfilled? Stupid comfort zones. They are pots too small for our roots, and we can't tell that we're just slowly dying.

I am so empty Emmett. I died with you. I'm old old old in my soul now. I see now that it's all folly, so I dance with fury and embrace my dreams with zeal. Because sophistication is a mask and an illusion, and we are just dust. 

You bright and shining profound Truth, my Emmett. You are my greatest treasure and my greatest achievement. I am your Mom. You honor me with that choice. You've made me who I am now. How amazing. 

So hey, reader, I'm Emmett's mom. And Emmett died. That's everything and all that matters. 

Letters to Emmett

You are a blessing and a gift from God.

You left us on Wednesday, on your one month birthday. I had planned in my head to write something that day in praise of you and your brother: how you both were my sweet, strong, gentle warriors who taught me how to fight and to persevere, beyond what limits I believed about myself, all for Love of you. You and your brother took me outside of what I thought possible, you tapped a strength within me I didn't know existed. I have the scars on my body now, from fighting, for you especially Emmett, as evidence. I love that scar now. It is my proof, my evidence that you were really here. That for however brief a time, you were really mine.

You were always on the peripheral. From the moment you were born, every glimpse of you was a gift. From the first moment of your birth, our relationship was marked by longing and by distance. So in many ways, it has not changed. I love you deeply forever and always, from afar.

I am endlessly thankful for the time I had with you. Sweet, sweet hours in the NICU, holding you skin to skin, your rhythm of breath and heart warming my soul. In those hours, everything was perfect and right and whole. I am so glad for the time we had you at home to ourselves. I am so sorry I was so tired and cranky; if I knew how precious and limited those days were, oh I would've been different! I never did not love you Teddy bear. I never, ever did not love you. I have from the moment I knew you were growing inside of me loved you with my whole heart - from that first moment, you were my world, my soul, my life.

I would give anything, anything, anything and everything to have you back in my arms, smiling mischievously in your sleep. You had jokes and mischief to share! We wanted you with everything within us. We will miss the shenanigans you would've caused with your brother.

I don't want to write this sort of letter to you, Emmett. I want to say these things over you while you nurse next to your brother. I want to tell you these things when you are sixteen and pretend to be embarrassed by them. I ache for the man I saw you as one day. I ache for the little boy I was only just beginning to know, and loved endlessly.

I miss you today. I miss you every moment. I want to kiss your chubby teddy bear cheeks and hold you close. You have part of my heart with you forever.

I love you my Emmett Teddy bear, always and forever.

2014, Emmett's Year

If you were to ask me, I would have had nothing good to say about this year. It's been the most difficult year of my life. I know this is not unique to us, for many this has been the hardest year ever. But ours, it feels, was something especially awful.

We moved three times. First, from our house in southern Arizona to a second-floor apartment in Tennessee that we shared with my two brothers and sister. Four adults, one of them pregnant with twins, one teenage girl, and two small children, all in a three-bedroom, second-floor apartment. The weekend I went into preterm labor with the twins, we were moving from that apartment to a house in another town in Tennessee that we shared with my siblings and my parents. About six weeks after that, we moved from that house in Tennessee to a house in Tempe, Arizona. But before we moved into the new house in Tempe, we lived in two separate houses of two separate friends in the Phoenix area, all while grieving for our youngest son, planning his funeral, and having his funeral. (And thank you friends, for generously opening your homes to us during that time.)

This past year I was pregnant with twins, and it was physically and emotionally the hardest pregnancy I've had. I went into preterm labor with them at 33 weeks due to what was later discovered to be placenta abruption. In hours the birth I had planned at the Farm Midwifery Center turned into a hospital vaginal birth for Llewyn and then a C-section for Emmett. Llewyn was born like lightning, full of energy and power. Emmett flipped breech after Llewyn was born, and because the doctor lacked the skill to deliver a breech baby, I had a C-section. Both boys were in the NICU, Llewyn for around two weeks, Emmett for three. The week Llewyn was home, and Emmett was still in NICU, was a horrible, awful week. I was forever in two places: the hospital to see Emmett, and then home 30 minutes away with my other three kids. I couldn't be in either place enough. Instead of having babies at my breast, I had a hospital grade breast pump. I pumped every 2 to 4 hours around the clock for month. I stopped pumping so often when Emmett came home, but then I was always pumping or breastfeeding, nonstop. I stopped pumping completely when we left Tennessee to return to Arizona. I haven't pumped since, and I hope I never have to ever again. It was a draining, demanding thing to pump exclusively for two babies. Yet it is one of those experiences that really revealed to me my own level of determination and dedication.

This past year my husband's addiction to alcohol reached a head, and between that, the stress of everything externally in our lives, and our own baggage, our marriage began to crumble around us. Over Christmas, the end of the year, I wasn't sure if we would have a marriage in the new one. Many marriages end because of alcohol. Many marriages end because of the death of a child. Many marriages end over the struggle of having a child with autism, like our oldest son. Oh, and money troubles. And moving. So it is no surprise that we hit a place of crisis. What is miraculous is that we are no longer there. 

This year my son died. He was exactly one month old, to the hour, in the early hours I woke to find he wasn't breathing. I screamed for my husband, and put Emmett on the beautiful wooden floor of our part of my parents house, and my husband tried to save Emmett's life by performing CPR. However traumatic it was for me, I think he had the worst of it. Because he was trying to save his son's life. I couldn't do that. That's why I put Emmett down, and went for the phone, because I couldn't do that. So it isn't only grief that we navigate, it is also trauma.

I was in the emergency room in Columbia, Tennessee, where a nurse came up to me and told me that it had been half an hour that they had been performing CPR on Emmett, and there was no breath, no heartbeat. I remember the sound of the empty, despairing "No..." that erupted from me as though it was something I overheard; I remember my husband wailing, wailing at the top of his voice. "This wasn't supposed to happen," and "WHY." And I sat there, numb, as he screamed for us both. This year, I told a doctor in the emergency room that it was mine and my husband's call to make when they would stop CPR, not his. I never saw the doctor again. But it *was* our call, and I remember as we walked together into that room and I asked if I could see my son, and my husband told them that they were to stop CPR. And the hospital staff parted like the Red Sea around us and there was my baby and he was gone. Dead.

This year, I sang to Emmett the song I sing to all my kids, but after he died. "I love you, I love you, morning, noon and night. I love you, I love you, you make my world so bright. I love to hear you laugh and sing, learning as you play. When I see your smiling face, this is what I say: I love you, I love you, morning, noon and night. I love you, I love you, you make my world so bright." It was a long time before I could sing that song again, without sobbing and crying for the baby who didn't get to hear it. Sometimes I still can't. 

We were with him after his death in the hospital for a little over an hour, I think. I am so thankful for that time. I'm so thankful the nurses were so kind to me, so thankful they told us to stay as long as we needed to. I learned that day that there is something harder than leaving the hospital where your babies are in NICU, and that is leaving your baby's body. The next time I saw Emmett was in his coffin in Arizona, the day before his funeral, and he looked nothing like himself. 

This year I buried a son, having never given him a bath. Having never taken a picture of him with his three other siblings. So many experiences lost and stolen from us.

This year wasn't hard, it was trial by fire. I have cursed this year as I went through it, because at one point or another I lost everything.

Until today. Don't mistake me: I curse the experiences. I curse the death. However, I had a realization that changed a few things. It has been almost a year exactly that I found out I was pregnant with what we later learned was the twins. Super Bowl 2014, I couldn't drink beer as I had found out that morning I was pregnant. It's almost Super Bowl again, and in the shadow of that coming anniversary I realize that 2014 is Emmett's year. It was the year he lived, the span of the whole of his life here. 2014 is the only year we had him. Suddenly, 2014 is sacred. It is a sacred space and time, and the trials fall away and all I see is him. 2014 belongs to Emmett.

Emmett means Truth in Hebrew. And that so clearly defines this past year in retrospect. Truth. The truth of who we are, what we are made of, what we have truly sown in our lives, the truth of our relationships, our finances, our habits, the truth of our own patterns of behavior; there is literally nothing left unturned throughout this year. And it was hard and difficult and ugly because we have a lot to change. We are meant to be so much more than our past patterns of behavior. 2014 has been a light into our dark places, showing us where we are weak and where we are strong, and what we have sown. 

Yes, now I see: 2014 is sacred. 2015 is the new beginning: it is the rest of our lives, after Emmett. I have no idea what that will look like, but I hope to honor him with every day. 

He isn't Broken

This is an angry post. This is a potentially offensive post. But I absolutely have to write it, because the truth needs to be said.

There is a huge deluge of media, both crunchy and mainstream, wanting to link autism to vaccines, autism to toxins in the home and other environments, wanting to link autism to inductions, wanting to link autism to basically any saturation of chemical that a developing baby may come into contact with. Because above all, they are saying, autism means your child is broken.

For every "case" that supports this theory, there is a case that defies it. My Zao is just such a one. He was conceived, born into, and grew up in as toxin-free a home as I could muster without starting from scratch. He was born at home in the water, a spontaneous birth. He was exclusively breastfed, not a single bottle ever, and weaned naturally at 25 months. He is completely unvaccinated. For most of his life we have either been vegetarian, or paleo, or WAPFers, so there has never been any excessive consumption of dyes, or HFCS, or processed foods.

He is also (currently undiagnosed) non-verbal ASD (autism spectrum disorder, not otherwise specified).  He is four years old, does not have coherent speech, is still in diapers, and is the happiest child I have met in my life.

Though we are in process of seeking a formal diagnosis, for his sake, I generally find the label unimportant. It can be helpful, when introducing him, as he is socially very different than a typical four-year-old; but it can also be enraging. Because I see pity in people's eyes, and there is NO REASON to pity me.

Why would you pity me for my joyous son? For this happy go lucky boy who laughs his butt off at his favorite cartoons? Would you pity me for all of his fantastic bear hugs? For his love of chasing and playing tag? For his enjoyment of his own life?

He didn't get the memo that he was broken, you see. He didn't get the popular message promoted by the media that he needs to be fixed. That he should be something, someone else. 

My son is not broken. I hate the message of media and studies that want to blame something because he isn't neuro-typical. Let's find out what causes it, so we can stop it. I don't want you to stop it! I don't want you to fix it; he isn't broken.

I think the most tragic part of it all, is the amount of time wasted playing the blame game, trying to find out what is wrong, what causes this supposed wrong. Time that is better spent trying to understand this incredible gift of a child, better spent helping him overcome his difficulties so that he can live his life, joyfully, successfully.

This isn't the denial stage talking, by the way. I've gone through that, and it doesn't look like this. :-) This is me standing up and saying that you are wrong for thinking of him as broken. The media is wrong. Anyone who says for a moment that this exceptional, special child is broken is WRONG. Whether a child has autism, Downs, ADD, or any sort of physical or mental difference, that child isn't broken. That child isn't less than one without that difficulty. That child isn't the unfortunate result of x, y, or z. That child is a gift. 

The gift of new glasses with which to see the world. New eyes to see and understand humankind. The gift of growing yourself as a person. The gift of unconditional love.

These labels and boxes confine us, confine and limit our children. They don't teach us how to love them. 

Look beyond the label, look beyond the difference. Stop hating the difference. Stop thinking about what is "wrong." LOVE this person exactly as they are.

baking

Walking away from disordered eating and all its lies is very hard. But in doing so, I have found that one of the greatest joys of my life has been returning to me: my love of baking. There really wasn't much fun in baking when at various times I thought that either white flour, sugar, butter, milk or eggs were the Devil incarnate seeking to enslave and destroy me and all of humanity.

I love baking, not just because it is creative and potentially artistic, but also because it is chemistry. It is science! Mwahahaha! I am the mad baking scientist!

Behold my glorious creation!

The bending and using of baking's rules and chemical reactions to create something earlier only imagined in my mind is very exciting and thrilling.  There are times I am so high from it that I say things like, "I will bake something new every day!" or, "I must have my own bakery and share my joy and creations with the world!" even "I will take over the world with my cookies!"

Perhaps I will do all of that. Ok, I've never said that last bit. But the rest, the rest all seem like very good ideas most of the time.

I've thought about starting a blog devoted to baking, but a quick google search reveals that those are a dime a dozen. It also would require a lot more time and effort than I have at my disposal right now, caring for a 4-year-old and a 15-month-old.  It would become just one more thing on my plate that I would end up resenting and doing half-assed.

Sometimes, I think we are too eager to take what we love, what brings us joy, and monetize it. In order for the thing we enjoy to truly have inherent value and be "worth our time", it must make us money, or bring us fame, or add something socially valuable to our lives. The joy it provides is never enough.

What if my baking is enough as it is? Is that such a radical idea? I enjoy baking. But I don't want to bake for money. I don't know that I really want to bake for anyone else, especially if money is involved. (How terrifically selfish, and honest, of me...) This attitude is very likely to keep me from ever improving our financial station, I realize that. I feel quite affable toward that decision.

As it is, baking is enriching my life and making me happy. I am going to let that be enough.


...however, I am a creative, artistic person. I reserve the right to change my mind at any time. ; )

resolute

^ last year ^

Last year I made a resolution for 2013 on the heels of my husband's hospitalization with complications from type 2 diabetes. It was a vague, but purposeful, "to be the healthiest I/we've ever been." Admirable, sure. The good news is it did begin to happen; however the reality of it coming into being looked very, very different than I could've ever imagined.

Now that the year is drawing to a close and I reflect upon it in hindsight, I see that the greatest things to change are the eyes with which I see myself, and the scale by which I measure health. Though I said one thing at the start of 2013, my mental projection was something else, something more specific and narrow - I thought along the lines of weight loss, exercise, diet. Maybe physical strength, too. But in my planning, I neglected the things that were in fact more important to true health: sleep, mental health, self-love, moderation, balance. Thankfully, those important, neglected things were the things dealt with as the year progressed.

I am the healthiest I have ever been, but I am still not healthy. I don't look any different really than a year ago. I weigh about the same, wear the same clothes, I don't run any faster or lift significantly heavier. What progression and changes that have happened, have happened all in my mind and thought life. I can recognize when I am motivated by self-loathing, I can recognize when I am not eating enough, when I am depressed, and I do not feel trapped by these mental prisons anymore. I am not free from them, not yet, but I can at least see them for what they are and change my behaviors in that moment. That is progress.

My resolution this year is to continue on this journey of being my healthiest ever. Even if that means I gain weight. :) My specific goal is to exercise less, and sit with and play with my children more. (This is a huge goal for me, as I am recovering from anorexia athletica, and orthorexia.) I plan on eating all the things that I have spent years feeling guilty about wanting and enjoying. And to enjoy them! I hope to begin to learn how to be present in all things: when I am eating, when I exercise, when I am with my kids, or reading a book - whatever I do, to be all there and not thinking about what else needs to happen or may happen next, or how I look or if I feel fat.

Health is not weight loss, as I thought it was. Health is not the adherence to a set diet of any kind; it is not the exclusion of junk foods, it is not the inclusion of fruits and vegetables. Health is like a long mathematic equation to which there are many, many factors. Having a pristine diet and exercise regimen, but being mentally ill, or suffering from insomnia, or depression, or losing your hair or your period, or developing an eating disorder - these are huge red flags that a person is, in fact, in some capacity, unhealthy. Sometimes, nay most times, the answer is a small subtle change, like not having coffee after noon, or not watching tv in bed, to help you sleep better, or taking a short family walk after dinner every evening. These small changes are not only the easiest to implement, they are the most sustainable. As Galadriel said in Lord of the Rings, "Even the smallest person can change the course of the future." To make it relevant: Even the smallest change can improve your overall health. :)


I wish health and happiness for you all this upcoming New Year!

Leap through the Field like a Flippin' Deer

I love lifting heavy weights. LOVE. So much so that I forget sometimes that there are awesome health benefits, because it turns out I am not lifting for the health benefits. I lift because I love it. I would lift every single day if I could. I don't get tired of it, I don't get bored, it's like a game against myself that I can never lose.

I enjoy running once in awhile. A couple times a week at most. Any more than that, and I freaking hate it. It becomes a chore. It becomes stupid and I hate it. Did I mention that I hate it? I don't care what sort of health benefits may come from running, I only run when I want to. I will never run a marathon, and I am one-hundred-percent OK with that.

I like yoga. I hate Pilates. I love burpees, when they're all done and over with. ;) I love dancing, jumping, chasing my kids around the house and yard, taking them on long walks. I love being able to move with my kids, and pick them up, both at the same time, without getting (terribly) winded or pulling a hamstring. Most of all, I love variety, so I do all sorts of things, some things never more than once. I try it, and then go on to try something else. That's what works for me.

Back when I was in the painful, controlling grip of orthorexia and anorexia athletica, I ran out of obligation and compulsion. I ate salad and did Pilates for the same reasons: I had to change this body, force it into health and appropriate physique. It was a sad, and decidedly not fun, time in my life. There is a meme out in cyberspace that reads "exercise to reward your body, not to punish it." I like that. Because I am recovering from this and other eating disorders, FUN has become the foundation for how I chose to move my body. If it isn't fun to me, I am not going to do it. Period.

We all need to move our bodies to be healthy, no doubt. The health gurus without agenda will tell you to find a way to move that you love and do that often. (The ones with an agenda, the ones who are wrong, who shall remain nameless because life is too short to waste time talking about what I hate, they are the ones saying you have to move in a certain way, a certain amount of time, blah blah blah blah blah.) The thing is I am allowed to hate something other folks love. So are you. There is no sacred cow of exercise. Crazy, huh?

There is no virtue in moving your body if you hate the way you are moving it. I realize that is a blanket statement quite possibly not backed up by science, but in the grand scheme of things, why waste your time doing something you don't like? I did that, and I made myself all kinds of sick. If you are out there pounding the pavement because you need to lose some lbs, but you loathe every second of it, then stop and try something else. Skip down the road if you want to, leap through the field like a flippin' deer. Or walk. Try Zumba. Try lifting heavy weights. Tell those know-it-all buttheads gurus that what they really need is to take a long walk off a short pier. Quitting running, or not lifting weights, doesn't make you a failure at the pursuit of health. It doesn't make you a failure at anything. Going through the motions of an activity just because it has health benefits doesn't necessarily make it the healthiest choice for you, and doesn't mean you are enjoying any of those benefits.

When we listen to our bodies and move them in a way that we enjoy, there is a vitality, an energy, that starts radiating out of us. It is very contagious - in infects others, it infects us, making us want to duplicate the feeling again. Joy is very healthy for you, by the way. Being happy releases a LOT of endorphins. :)

I am not a medical professional, by the bye, and I am not telling you to ignore the advice of your doctor, if said doctor has in fact given you specific advice. But if your doc has said you need exercise, than find a way to move your body that you enjoy. Exercise doesn't just mean run, or lift, or spin. Move your body in different ways until you find one that you enjoy, or at the very least, don't hate and can learn to enjoy.

this is actually an impala, not a deer, but you get the idea. Leap through the field, baby!