I had a dream about you a few nights ago. I'm sure you know. I've had sporadic dreams over the past couple of years. Some were nice, some horrific, and some just confusing. Always, I'm left craving more and am usually hating that I'm even capable of dreaming. That was still true this time, but something was different. You looked different. I've had dreams where you appeared to have more capabilities than you'd had here. You walk, talk, run. But, even in those dreams you always look like my boy, my baby, your curly hair and blue eyes an unmistakable reminder. This time however, you were not the baby I held. You were a man.
The next part is so vivid. I was sitting on the arm of a couch and looking over at you. I had gotten a camera out of my purse and took a picture of all that was laid out before me. I'm so glad that I did, because that snapshot has created a sort of phantom memory. A large window was directly behind you and the sun was shining in brilliantly. The curly mop of my ornery baby boy had been replaced by a thick wave of dark brown hair. I could tell you were tall, like Daddy, even though you were seated at the time. You were sitting at a piano, your body turned slightly toward me. Your smile was so big as you played the lively, upbeat song and called to them. Them. Your children. I barely saw them as they danced, giggled and twirled just out of the frame of my picture. I remember the dress of one flying through the air. They'd been waiting all day for Daddy to get home from work, so they could show Grandma how they danced while he played. Work. You had been working. You wore long pants and a lightly striped button down shirt. Your tie had been removed and thrown over the back of a chair. The two top buttons of your shirt were now open. Work was over, and you were playing and relaxing with your children.
When I woke up, most of my dream was gone. I can't recall many of the things that happened, but the picture that my dream self captured is still so crisp and clear in my mind. I'm so glad she took that picture. I've been looking at my last pictures of you today. I've even watched a few videos, because although it is so very painful to do so, I craved another look so much I was having trouble breathing. Sometimes when I watch them or look at the pictures, I'm so confused about the fact that they're my last ones. Why didn't someone tell me that? I can't even imagine how many I'd have now if I'd known that I wouldn't have the chance to take any more. It's so foreign to me that no matter how many times I look through them, I'll never see a new one. In fact, sometimes I expect to be surprised by one I haven't seen. It would be one of your current 4 year old self. Did you grow? Is your hair longer? Would I be buying bigger shoes? I don't know, because it's still not here. That new picture just doesn't exist.
So, I'm keeping this phantom picture locked away in my mind. And I write this description so that I can recall it with as much detail in 20 years when the craving for my son, the man, is just too much to bear. I'll be able to see him again, sitting at his piano and laughing as his children dance through a sunlit living room...
Saturday, November 15, 2014
Tuesday, November 11, 2014
November
Today is a significant date for my family. But for me, dates hold less meaning than they once did. I'm aware of important/painful dates, but because every day and every movement is so difficult, they affect me no more than last Thursday or next Tuesday. Dates are important to my husband. They renew his grief. He feels the pain deeply on days of significance and that's how he deals. That's how he remembers. Neither of us is right or wrong. We just process differently.
So, what happened two years ago today? Today is the day we actually lost our son. It was the last time we truly saw his eyes. The last time I heard him say, "Mama." The last time he ate ice cream. He had been doing relatively well in the PICU, and was sitting up and waving at the nurses as they walked by his room. He was a shameless flirt, and they encouraged it. The new night doctor asked if we felt comfortable moving back to the neurology floor, which was typically our home base. I looked over at him and he smiled at me, as he played with a toy. He looked like he was doing slightly better, I guess. He'd been playing. He'd been eating. And he'd certainly been flirting. But, something inside me said no. The truth is, I'd been hearing this guiding voice within myself for much of his journey, but hadn't fully recognized it at this point. Still, I trusted the feeling and asked if we could stay just....one...more...night...
Forty-five minutes later, it happened. Easton had been laughing at a card someone had sent him. When you opened it up, it played a song with silly high-pitched voices. Jeff and I were cracking up at how funny he found that card. Suddenly, he seemed to shift his eyes to the right and kept them there. We thought he was playing. No violent movements, not even a tremor. After a few seconds, his eyes returned to their original position and he laughed at the card again. Jeff and I exchanged a confused, but not overly alarmed look, and continued playing with him. Then, a minute later...the same "game." His eyes shifted and wouldn't come back to center for any reason. We knew. It was happening again. This was a seizure. It was new and it was different, but we didn't need any medical personnel to tell us what was happening. We saw it, we heard the silence of it. And most horrifically, we felt it. We felt that ball of fear in the pit of our stomachs jump to our throats. It twisted and turned and was tormenting us once again. We tried everything to break that trance. Jeff grabbed the card we'd been playing with and begged him to look at it. "Here Buddy, look at the card. Come on Easton. You like this card. You can do it. Hear the song? It's right here. See?" Nothing. No matter how hard we tried, the seizure got to keep our boy until it decided it was done with him for a moment. Then they just kept coming faster and faster....
I remember each time Jeff would grab the card and ask him to look. I can still hear his voice go from soothing urgency and pleading to all out desperation and screaming..."LOOK AT THE BOOK, EASTON!!! COME BACK!!! SEE DADDY!?!?!? I'M RIGHT HERE!!! PLEASE!!!" I had been screaming too, but I can recall that when my husband started yelling, I stopped in my tracks. I said nothing. I responded to no one. I climbed into that bed and I picked my baby up and wrapped my arms all the way around him. I let silent tears fall and pressed my lips to the top of his head. I spoke only to him when I whispered, "It's ok, Baby. I know it's scary. I know it hurts. I'm right here. And Easton? I love you. I love you. I love you. I love you..." They came in swarms. White coats everywhere. Orders shouted. Explanations given. As if we'd never been here before. Oh, I'd been here. And I was smarter this time. I was thinking about and honoring what no one would say out loud. This is your last. It's your last real sniff of his hair. It's your last full body snuggle with the boy you know. They added medications, added more IVs, and finally came at us with intubation equipment. I held that child until they moved me from the bed. I was taking every last second. Before I knew it, intubation was complete. Life support. Coma. Gone.
I began to hear buzzing around my head. I eventually realized that its source was the voices of the practitioners offering explanations of what would happen next. "We'll give him this medication to stabilize him, and then we can form a plan from there. We think this first dose should help significantly, and then we can work on what to do next." No it wouldn't. It wouldn't work and some very quiet, still part of me knew that. I stared at the mouths connected to the people who were trying to offer solace. They were moving. I knew that. Words were coming out. I could see and even understand. But, it wasn't real. Nothing was real after that moment, and I knew it. He was gone. My baby was gone. We were there for another month, chasing numbers and seeing progress and decline. His physical body left on December 8, 2012, but we lost him long before that.
Why do I share these things? Why am I so public with such painful, gut-wrenching stories? Because GODDAMMIT they're true. They're real. They happen. Every day, in fact. I could tell you all kinds of stories about how moments with my son were all love and sunshine, puppies and unicorns, but that wouldn't be true. We had the beautiful and we had the horrific. I acknowledge both, and by sharing both I believe I bring more truth and light to the beautiful moments. And we had those, often. If you ever had the privilege of simply looking into my boy's eyes, you know this.
November is epilepsy awareness month. Epilepsy is a disorder that affects 1 in 26 people. It does not discriminate. It doesn't care how tall you are, how "good" you are, or even how beautiful your baby is. It's a disorder that is wildly misunderstood. It has no outside markings. That's a blessing and a curse. Because you can't see their illness on the outside, more is expected of them. People with epilepsy are living in your world every day, and they're trying desperately to not only function but to enjoy life in a body in which their brain betrays them, sometimes hourly. Not all seizures are noticeable. Can you imagine being an intelligent business woman with goals and plans like everyone else, but wondering if you'll be able to get through a coherent sentence that day? Perhaps you'll have an important meeting with your boss, and you'll stop mid-sentence. Not because you are ill-prepared, or indifferent about the significance of that meeting, but because your brain says it's epilepsy's turn to have you. So, instead of being rewarded for the work you've put in to today, you'll stop and stare off as if you have no care in the world, and all the while your brain is raging a war. Or maybe you're just a kid at school and you want to do something as simple as play at recess with your friends. Can you climb the jungle gym? Probably not, because what if epilepsy decides today is his day and your hands stop working and lose their grip? So you stay on the ground, while classmates laugh at your inability to join in something so simple.
I'm not asking anyone to join a cause. I'm not asking for anyone to champion something simply because I happen to be passionate about it. I'm not asking for money. I'm simply telling you what I've seen and what I know, in hopes of inspiring some compassion. No, you cannot see that they are sick, but they are fighting a very real battle every day. Yes, they may receive funding to help with medical expenses, but one cannot possibly understand the cost of therapies, medications, doctors, and hospitalizations until they've experienced it themselves. And yes their caregivers can be difficult at times, but she's exhausted, she's out of ideas, and she's terrified beyond the comprehension of her soul. Compassion. Love. Share these things this month of November, and remember a little curly-haired boy who said "Mama" for the last time on this very day, two years ago.
So, what happened two years ago today? Today is the day we actually lost our son. It was the last time we truly saw his eyes. The last time I heard him say, "Mama." The last time he ate ice cream. He had been doing relatively well in the PICU, and was sitting up and waving at the nurses as they walked by his room. He was a shameless flirt, and they encouraged it. The new night doctor asked if we felt comfortable moving back to the neurology floor, which was typically our home base. I looked over at him and he smiled at me, as he played with a toy. He looked like he was doing slightly better, I guess. He'd been playing. He'd been eating. And he'd certainly been flirting. But, something inside me said no. The truth is, I'd been hearing this guiding voice within myself for much of his journey, but hadn't fully recognized it at this point. Still, I trusted the feeling and asked if we could stay just....one...more...night...
Forty-five minutes later, it happened. Easton had been laughing at a card someone had sent him. When you opened it up, it played a song with silly high-pitched voices. Jeff and I were cracking up at how funny he found that card. Suddenly, he seemed to shift his eyes to the right and kept them there. We thought he was playing. No violent movements, not even a tremor. After a few seconds, his eyes returned to their original position and he laughed at the card again. Jeff and I exchanged a confused, but not overly alarmed look, and continued playing with him. Then, a minute later...the same "game." His eyes shifted and wouldn't come back to center for any reason. We knew. It was happening again. This was a seizure. It was new and it was different, but we didn't need any medical personnel to tell us what was happening. We saw it, we heard the silence of it. And most horrifically, we felt it. We felt that ball of fear in the pit of our stomachs jump to our throats. It twisted and turned and was tormenting us once again. We tried everything to break that trance. Jeff grabbed the card we'd been playing with and begged him to look at it. "Here Buddy, look at the card. Come on Easton. You like this card. You can do it. Hear the song? It's right here. See?" Nothing. No matter how hard we tried, the seizure got to keep our boy until it decided it was done with him for a moment. Then they just kept coming faster and faster....
I remember each time Jeff would grab the card and ask him to look. I can still hear his voice go from soothing urgency and pleading to all out desperation and screaming..."LOOK AT THE BOOK, EASTON!!! COME BACK!!! SEE DADDY!?!?!? I'M RIGHT HERE!!! PLEASE!!!" I had been screaming too, but I can recall that when my husband started yelling, I stopped in my tracks. I said nothing. I responded to no one. I climbed into that bed and I picked my baby up and wrapped my arms all the way around him. I let silent tears fall and pressed my lips to the top of his head. I spoke only to him when I whispered, "It's ok, Baby. I know it's scary. I know it hurts. I'm right here. And Easton? I love you. I love you. I love you. I love you..." They came in swarms. White coats everywhere. Orders shouted. Explanations given. As if we'd never been here before. Oh, I'd been here. And I was smarter this time. I was thinking about and honoring what no one would say out loud. This is your last. It's your last real sniff of his hair. It's your last full body snuggle with the boy you know. They added medications, added more IVs, and finally came at us with intubation equipment. I held that child until they moved me from the bed. I was taking every last second. Before I knew it, intubation was complete. Life support. Coma. Gone.
I began to hear buzzing around my head. I eventually realized that its source was the voices of the practitioners offering explanations of what would happen next. "We'll give him this medication to stabilize him, and then we can form a plan from there. We think this first dose should help significantly, and then we can work on what to do next." No it wouldn't. It wouldn't work and some very quiet, still part of me knew that. I stared at the mouths connected to the people who were trying to offer solace. They were moving. I knew that. Words were coming out. I could see and even understand. But, it wasn't real. Nothing was real after that moment, and I knew it. He was gone. My baby was gone. We were there for another month, chasing numbers and seeing progress and decline. His physical body left on December 8, 2012, but we lost him long before that.
Why do I share these things? Why am I so public with such painful, gut-wrenching stories? Because GODDAMMIT they're true. They're real. They happen. Every day, in fact. I could tell you all kinds of stories about how moments with my son were all love and sunshine, puppies and unicorns, but that wouldn't be true. We had the beautiful and we had the horrific. I acknowledge both, and by sharing both I believe I bring more truth and light to the beautiful moments. And we had those, often. If you ever had the privilege of simply looking into my boy's eyes, you know this.
November is epilepsy awareness month. Epilepsy is a disorder that affects 1 in 26 people. It does not discriminate. It doesn't care how tall you are, how "good" you are, or even how beautiful your baby is. It's a disorder that is wildly misunderstood. It has no outside markings. That's a blessing and a curse. Because you can't see their illness on the outside, more is expected of them. People with epilepsy are living in your world every day, and they're trying desperately to not only function but to enjoy life in a body in which their brain betrays them, sometimes hourly. Not all seizures are noticeable. Can you imagine being an intelligent business woman with goals and plans like everyone else, but wondering if you'll be able to get through a coherent sentence that day? Perhaps you'll have an important meeting with your boss, and you'll stop mid-sentence. Not because you are ill-prepared, or indifferent about the significance of that meeting, but because your brain says it's epilepsy's turn to have you. So, instead of being rewarded for the work you've put in to today, you'll stop and stare off as if you have no care in the world, and all the while your brain is raging a war. Or maybe you're just a kid at school and you want to do something as simple as play at recess with your friends. Can you climb the jungle gym? Probably not, because what if epilepsy decides today is his day and your hands stop working and lose their grip? So you stay on the ground, while classmates laugh at your inability to join in something so simple.
I'm not asking anyone to join a cause. I'm not asking for anyone to champion something simply because I happen to be passionate about it. I'm not asking for money. I'm simply telling you what I've seen and what I know, in hopes of inspiring some compassion. No, you cannot see that they are sick, but they are fighting a very real battle every day. Yes, they may receive funding to help with medical expenses, but one cannot possibly understand the cost of therapies, medications, doctors, and hospitalizations until they've experienced it themselves. And yes their caregivers can be difficult at times, but she's exhausted, she's out of ideas, and she's terrified beyond the comprehension of her soul. Compassion. Love. Share these things this month of November, and remember a little curly-haired boy who said "Mama" for the last time on this very day, two years ago.
Sunday, November 9, 2014
Today My Sister Comes
Today. Today my sister comes. I get to spend the day with my family. Before, when we had days like these, I enjoyed it thoroughly, but missed its significance. My sister and I understand each other on nearly every level. And although Dad would say that we talk incessantly, we often communicate without the need for words. This remains true for the two of us, despite the pain we've recently endured. We're still close, though perhaps not in the same way. We still resonate with the feelings the other is experiencing, whether or not we can fully experience them ourselves. And we still enjoy being together, just the two of us. But it's not just the two of us anymore, and it probably never will be again. Now, grief comes along and butts in on our visits, and because it is a life all its own, it is difficult to ignore.
Today. Today my sister comes. She'll bring her husband and her children. The kids will likely come bounding through the door, excited to see us and receive a hug from each of their cousins. But the match up will be uneven. It shouldn't be, but it is. My sister will come through the door with four children. And they will be received by three of mine. This day will be full of reminders that he is "always all around us." That fact will be both comforting and evident, while also being painful and wildly untrue. He may be there in the excited conversation of our children. He may show himself by way of flashing a few recognizable symbols our way. But, I have to ask, when those four children run through the door to greet mine, will one of them wait their turn for a hug? Or will each one have someone to cling to? I can answer that, because I've watched this happen several times. The answer is, he won't be there. Not in the way I will desperately need him to be.
Today. Today my sister comes. We'll watch my children play several different sports today and their cousins will be there to cheer for them. They'll see recognizable faces in the stands and do their best to impress, while the adults know that most of the onlookers are more interested in the contents of Grandma's purse and the game time popcorn they'll receive. I'll smile and be happy. I'll cry and be slayed. I'll enjoy watching my healthy, happy children play the games that they love and I'll mourn the one who never took a step on his own.
Today. Today my sister comes. She'll be coming from her new home that is an hour away from us. I hate her for leaving us when we'd already lost so much, and I love her beyond measure for having the foresight to change my scenery. Visiting her at her new house is a treat for my children, but it angers them that we have to drive "so far." I walk in and breathe a sigh of relief that I'm entering a house with no haunting memories. I silently thank her for that gift, while my heart breaks at the thought of the motivation behind it.
Today. Today my sister comes. She'll bring with her, my nephew. He brings the count to four. He is the one who tipped the scales toward that foreign ratio. I love him and he hurts me. I fear touching him and I can't wait to snuggle up close and smell his baby sweetness. It isn't because he's a boy. That wouldn't have mattered either way. It's because he is the only one who wasn't here when Easton was. He's the new family member. The "after" family member. He's the reminder. The replacement. But of course he doesn't feel like a replacement. To me, his physical presence feels somehow lop-sided. He'll never know my son. No matter how many times we tell him, and no matter how much we wish for it to be true, he'll never have his own stories of life with Easton. He'll come into my mom's house and play with the toys my son just put down. I swear it was just a minute ago. Watching him will cut at my heart and fill me with a peace that overflows, all at the same time. He doesn't move the same as my son. For every limitation that Easton had, Clark is a step ahead in his motor development. That is beautiful and hurtful. It makes me seethe with anger and sigh with relief and gratitude. Today I will hug him and hold him. I will chase him and pull him onto my lap. I will probably cry into his hair, as I often do. And though he never knew my boy, he will look at me with that strange calm that he often does. That look that makes me know he is wise beyond his years, and I will wonder once again, if he can see the playmate that I so desperately wanted him to have.
Today. Today my sister comes. I'm excited and fearful. I'm energized and immobilized. I will get to spend time with the person who knows more intricate parts of me than nearly anyone else in the world. I'll be there with her and her four children. I'll wonder why that is, at times. I'll wonder why it's ok for her to have four, but not acceptable for me. I'll hate her for that, and be grateful that it's true. She'll know that. She'll understand and she'll silently ask the same question. We'll laugh and tease our dad. We'll make jokes with Mom. I'll enjoy the ease with which we can communicate, and I'll endure each terribly difficult step it takes for me to be present in the given moment. And I'll look up and ask my boy for strength, and if he has some time today, to please let me know he sees us.
Today. Today my sister comes...
Today. Today my sister comes. She'll bring her husband and her children. The kids will likely come bounding through the door, excited to see us and receive a hug from each of their cousins. But the match up will be uneven. It shouldn't be, but it is. My sister will come through the door with four children. And they will be received by three of mine. This day will be full of reminders that he is "always all around us." That fact will be both comforting and evident, while also being painful and wildly untrue. He may be there in the excited conversation of our children. He may show himself by way of flashing a few recognizable symbols our way. But, I have to ask, when those four children run through the door to greet mine, will one of them wait their turn for a hug? Or will each one have someone to cling to? I can answer that, because I've watched this happen several times. The answer is, he won't be there. Not in the way I will desperately need him to be.
Today. Today my sister comes. We'll watch my children play several different sports today and their cousins will be there to cheer for them. They'll see recognizable faces in the stands and do their best to impress, while the adults know that most of the onlookers are more interested in the contents of Grandma's purse and the game time popcorn they'll receive. I'll smile and be happy. I'll cry and be slayed. I'll enjoy watching my healthy, happy children play the games that they love and I'll mourn the one who never took a step on his own.
Today. Today my sister comes. She'll be coming from her new home that is an hour away from us. I hate her for leaving us when we'd already lost so much, and I love her beyond measure for having the foresight to change my scenery. Visiting her at her new house is a treat for my children, but it angers them that we have to drive "so far." I walk in and breathe a sigh of relief that I'm entering a house with no haunting memories. I silently thank her for that gift, while my heart breaks at the thought of the motivation behind it.
Today. Today my sister comes. She'll bring with her, my nephew. He brings the count to four. He is the one who tipped the scales toward that foreign ratio. I love him and he hurts me. I fear touching him and I can't wait to snuggle up close and smell his baby sweetness. It isn't because he's a boy. That wouldn't have mattered either way. It's because he is the only one who wasn't here when Easton was. He's the new family member. The "after" family member. He's the reminder. The replacement. But of course he doesn't feel like a replacement. To me, his physical presence feels somehow lop-sided. He'll never know my son. No matter how many times we tell him, and no matter how much we wish for it to be true, he'll never have his own stories of life with Easton. He'll come into my mom's house and play with the toys my son just put down. I swear it was just a minute ago. Watching him will cut at my heart and fill me with a peace that overflows, all at the same time. He doesn't move the same as my son. For every limitation that Easton had, Clark is a step ahead in his motor development. That is beautiful and hurtful. It makes me seethe with anger and sigh with relief and gratitude. Today I will hug him and hold him. I will chase him and pull him onto my lap. I will probably cry into his hair, as I often do. And though he never knew my boy, he will look at me with that strange calm that he often does. That look that makes me know he is wise beyond his years, and I will wonder once again, if he can see the playmate that I so desperately wanted him to have.
Today. Today my sister comes. I'm excited and fearful. I'm energized and immobilized. I will get to spend time with the person who knows more intricate parts of me than nearly anyone else in the world. I'll be there with her and her four children. I'll wonder why that is, at times. I'll wonder why it's ok for her to have four, but not acceptable for me. I'll hate her for that, and be grateful that it's true. She'll know that. She'll understand and she'll silently ask the same question. We'll laugh and tease our dad. We'll make jokes with Mom. I'll enjoy the ease with which we can communicate, and I'll endure each terribly difficult step it takes for me to be present in the given moment. And I'll look up and ask my boy for strength, and if he has some time today, to please let me know he sees us.
Today. Today my sister comes...
Friday, November 7, 2014
Good or Bad
I'm learning, through my process of grief, that we as a society tend categorize our experiences as "good" or "bad." I think by doing this, we are failing to acknowledge the complexity and intricacy of the human experience. Occasionally, I meet with some women whose journeys are similar to mine, and we speak within that same context. "I was doing really well until...", "I was really bad for a long time...", etc. We seem to gravitate toward the idea that getting up and moving, putting on a smile, and pretending to enjoy gatherings is "doing well", and that being isolated, breaking down, and showing our hurt means that we're "doing poorly."
I think this very concept influences a person's grief path a great deal. I've met those who feel, somewhere deep within them, that in order to handle their grief, they must appear to always be doing well. This type of grief is more acceptable to society, and it isn't difficult for me to see why. I happen to be in another group. I'm in the one who feels as though expressing the depths of my pain is the only way to experience my grief "well". I fear that losing that image of pain and suffering is somehow betraying the life that I've lost. Now, both groups "know" on some level that neither mantra is true. Both statements are just too generalized, but that knowledge exists right along side the fact that this is JUST how we're going to do it. Neither of these approaches is wrong, nor one more helpful than the other. They just simply are. The funny thing is that society tends to want the ones who are doing "well" to give themselves permission to grieve (as if they aren't), and those who are doing "poorly" to move past their grief (as if this is possible). And that's ok as long as the griever knows that that is a societal perception and not reality. The truth is that grief is a rolling wave of emotions. It has no rhythm or cadence. It has peaks and valleys, but you can't see which is before you. Even the level ground is unpredictable. I think it would be beneficial to simply recognize our current state and give ourselves compassion for the myriad of emotions that make up that one moment. (I'm glad my therapist doesn't read my blog because she'd have every right to bang her head against the wall at this point).
This is why it is difficult to say what is and is not acceptable from outside sources when it comes to a grieving person. I've read several great articles that list the dos and don'ts of dealing with someone experiencing grief. Reading things such as these can be so comforting at times because it makes you feel less lonely, and any sort of life raft that can pull you up for even a second from that type of isolation, is refreshing. However, obviously not all points are always true for me. Some days I'm very capable of functioning and making it appear as though I'm enjoying the moments that I'm living. And I'll let you in on an even bigger secret...sometimes I actually AM enjoying them. In these moments I can hear any number of things related to grief and recognize them for what they are, words from another person, and simply acknowledge and let go. Other times, my grief is so oppressive that any suggestion made in any way burns right through my chest and leaves me gasping for air. In fact, both situations can feature the EXACT SAME WORDS SPOKEN IN THE EXACT SAME CONTEXT, and the reaction is solely dependent on that moment. Again, it isn't wrong or right, it just is. So many things have been said to me over the past two years that have had every intention of lifting my spirits, and to the obvious disappointment of the speaker, have had the profoundly opposite effect. Likewise, I've experienced some harsh words that did little more than glance off of an already open wound.
I have no advice here. It's simply an observation. And it's directed solely at my own experience, because obviously that's the only one I've had. So, maybe I'm just talking to myself here. In that case, I would like to say, "Self, I know that you're hurting beyond anything you'd deemed possible. I know that there are times when you smile and laugh that you feel as though you are betraying your son's life. I know that sometimes you thoroughly enjoy the experience of a moment. I know that many times you have wished to never have to experience another one, even the nice ones. I know that pain and love are synonymous for you now. I know that you've seen awe-inspiring beauty and the depths of hell, all rolled into one confusing package. I'm offering no solution. I'm offering no judgement. I'm simply saying that 'I know.' And 'I see.' I know that you're never doing well or poorly. You simply are. Do with that what you will, Self. I believe we have much more to learn."
I think this very concept influences a person's grief path a great deal. I've met those who feel, somewhere deep within them, that in order to handle their grief, they must appear to always be doing well. This type of grief is more acceptable to society, and it isn't difficult for me to see why. I happen to be in another group. I'm in the one who feels as though expressing the depths of my pain is the only way to experience my grief "well". I fear that losing that image of pain and suffering is somehow betraying the life that I've lost. Now, both groups "know" on some level that neither mantra is true. Both statements are just too generalized, but that knowledge exists right along side the fact that this is JUST how we're going to do it. Neither of these approaches is wrong, nor one more helpful than the other. They just simply are. The funny thing is that society tends to want the ones who are doing "well" to give themselves permission to grieve (as if they aren't), and those who are doing "poorly" to move past their grief (as if this is possible). And that's ok as long as the griever knows that that is a societal perception and not reality. The truth is that grief is a rolling wave of emotions. It has no rhythm or cadence. It has peaks and valleys, but you can't see which is before you. Even the level ground is unpredictable. I think it would be beneficial to simply recognize our current state and give ourselves compassion for the myriad of emotions that make up that one moment. (I'm glad my therapist doesn't read my blog because she'd have every right to bang her head against the wall at this point).
This is why it is difficult to say what is and is not acceptable from outside sources when it comes to a grieving person. I've read several great articles that list the dos and don'ts of dealing with someone experiencing grief. Reading things such as these can be so comforting at times because it makes you feel less lonely, and any sort of life raft that can pull you up for even a second from that type of isolation, is refreshing. However, obviously not all points are always true for me. Some days I'm very capable of functioning and making it appear as though I'm enjoying the moments that I'm living. And I'll let you in on an even bigger secret...sometimes I actually AM enjoying them. In these moments I can hear any number of things related to grief and recognize them for what they are, words from another person, and simply acknowledge and let go. Other times, my grief is so oppressive that any suggestion made in any way burns right through my chest and leaves me gasping for air. In fact, both situations can feature the EXACT SAME WORDS SPOKEN IN THE EXACT SAME CONTEXT, and the reaction is solely dependent on that moment. Again, it isn't wrong or right, it just is. So many things have been said to me over the past two years that have had every intention of lifting my spirits, and to the obvious disappointment of the speaker, have had the profoundly opposite effect. Likewise, I've experienced some harsh words that did little more than glance off of an already open wound.
I have no advice here. It's simply an observation. And it's directed solely at my own experience, because obviously that's the only one I've had. So, maybe I'm just talking to myself here. In that case, I would like to say, "Self, I know that you're hurting beyond anything you'd deemed possible. I know that there are times when you smile and laugh that you feel as though you are betraying your son's life. I know that sometimes you thoroughly enjoy the experience of a moment. I know that many times you have wished to never have to experience another one, even the nice ones. I know that pain and love are synonymous for you now. I know that you've seen awe-inspiring beauty and the depths of hell, all rolled into one confusing package. I'm offering no solution. I'm offering no judgement. I'm simply saying that 'I know.' And 'I see.' I know that you're never doing well or poorly. You simply are. Do with that what you will, Self. I believe we have much more to learn."
Thursday, October 30, 2014
Dear Brittany
Dear Brittany,
I, like most of us who make up the cyber world, have never met you but have nonetheless been invited into a very sacred part of your life journey. I've read parts of your story several times. I sometimes watch your videos on repeat, just to catch a glimpse of the haunting wisdom in your eyes. Most of us have seen the countless articles from supporters and critics alike. Everyone seems to have their own ideas about which decisions would be the best ones for you and your life.
I've read that some believe you to be selfish in choosing to end your life prematurely, and others applaud your ability to do so. I'm not here to champion either side. I'm simply writing to say...Thank You. Thank you for sharing such an intimate moment in your life. Thank you for giving a voice to the idea that "life at all costs" isn't as simple as it seems. And I thank you for unknowingly giving me permission to let go of the guilt I carry for choosing a similar path for my 2 year old son.
Although we didn't know what we were fighting for most of his life, eighteen hours before he died we were given a name for his debilitating disease. Once that positive result passed through the lips of the neurologist who sat next to me on my makeshift "parent bed" in my son's ICU room, I knew what it meant. It meant only one thing. He was terminal. In fact, he'd technically been terminal since birth. The gravity of that moment will always weigh heavily on my broken heart. The deafening silence that surrounded me as realization began to form will forever haunt my thoughts. I'd had a decision to make, and I made it. Yes, he was going to die, but I chose it. I had to say the words, "Do Not Resuscitate." Me. His mother. I had to. How does a mother choose this? How do you choose the time that your baby dies? You just do. And I did.
In one of your videos, you mentioned that if you got to choose what happened after your death you would choose for your mother to be ok. She won't be, of course, but I can tell you that by choosing this yourself, you're giving her the only gift you've got left. My son couldn't tell me that he was done fighting. I fear closing my eyes at night because I'm immediately transported back to that moment, to that awful day that I gave the go ahead to disconnect his life support. Was it too soon? Did he have more fight left? What if I'd made a mistake? So you see, hearing you say that you would choose to leave on your own terms, before life became unbearable is salve on a wound that I never thought would heal. Your mother will be spared those last few days of seeing her child suffer as a shell of her former self. She'll be spared that question of whether or not the time has come. Some claim that you are selfish for your choice to pass away on your own terms, but I can't think of a more selfless act. You are leaving them with happy memories of you, of choices that you made yourself, and with the peace of mind that you've fulfilled your wishes.
The loss of my son was soul-shredding. I spend every breath trying to find reasons to pick up the pieces and put them back together. Some pieces, I'd assumed, would be gone forever. You've proven me wrong by sharing your story and lifting a giant burden from my shoulders. The ache in my chest is lighter because of your honesty. I thank you for that immeasurable gift. My wish for you is for peace in every decision you make, and enough love to carry you through the process.
I, like most of us who make up the cyber world, have never met you but have nonetheless been invited into a very sacred part of your life journey. I've read parts of your story several times. I sometimes watch your videos on repeat, just to catch a glimpse of the haunting wisdom in your eyes. Most of us have seen the countless articles from supporters and critics alike. Everyone seems to have their own ideas about which decisions would be the best ones for you and your life.
I've read that some believe you to be selfish in choosing to end your life prematurely, and others applaud your ability to do so. I'm not here to champion either side. I'm simply writing to say...Thank You. Thank you for sharing such an intimate moment in your life. Thank you for giving a voice to the idea that "life at all costs" isn't as simple as it seems. And I thank you for unknowingly giving me permission to let go of the guilt I carry for choosing a similar path for my 2 year old son.
Although we didn't know what we were fighting for most of his life, eighteen hours before he died we were given a name for his debilitating disease. Once that positive result passed through the lips of the neurologist who sat next to me on my makeshift "parent bed" in my son's ICU room, I knew what it meant. It meant only one thing. He was terminal. In fact, he'd technically been terminal since birth. The gravity of that moment will always weigh heavily on my broken heart. The deafening silence that surrounded me as realization began to form will forever haunt my thoughts. I'd had a decision to make, and I made it. Yes, he was going to die, but I chose it. I had to say the words, "Do Not Resuscitate." Me. His mother. I had to. How does a mother choose this? How do you choose the time that your baby dies? You just do. And I did.
In one of your videos, you mentioned that if you got to choose what happened after your death you would choose for your mother to be ok. She won't be, of course, but I can tell you that by choosing this yourself, you're giving her the only gift you've got left. My son couldn't tell me that he was done fighting. I fear closing my eyes at night because I'm immediately transported back to that moment, to that awful day that I gave the go ahead to disconnect his life support. Was it too soon? Did he have more fight left? What if I'd made a mistake? So you see, hearing you say that you would choose to leave on your own terms, before life became unbearable is salve on a wound that I never thought would heal. Your mother will be spared those last few days of seeing her child suffer as a shell of her former self. She'll be spared that question of whether or not the time has come. Some claim that you are selfish for your choice to pass away on your own terms, but I can't think of a more selfless act. You are leaving them with happy memories of you, of choices that you made yourself, and with the peace of mind that you've fulfilled your wishes.
The loss of my son was soul-shredding. I spend every breath trying to find reasons to pick up the pieces and put them back together. Some pieces, I'd assumed, would be gone forever. You've proven me wrong by sharing your story and lifting a giant burden from my shoulders. The ache in my chest is lighter because of your honesty. I thank you for that immeasurable gift. My wish for you is for peace in every decision you make, and enough love to carry you through the process.
Monday, October 6, 2014
"Fall"
It used to mean warm sweaters and bonfires. It used to mean watching leaves change and smiling at the inevitable giddiness of your kids as holidays approach. It used be "complaining" about the end of summer, while being blissfully oblivious to the fact that you're doing that while curling on the couch with hot chocolate and watching football with your family on a lazy Sunday. It doesn't mean any of that anymore. All of that was stolen.
It used to be discussing holiday traditions with other school parents. What does your family do for Halloween? That answer used to be so simple. "Oh, not much I guess. We go to my sister's house and my mom makes every kind of soup imaginable. The kids trick or treat around my old hometown. Of course, there is always that huge gamble of whether or not the 4 costumes I picked out will be warm enough! Fingers crossed!" I didn't think it was much at the time, because I didn't know it was everything. And not just the act, or the gathering, but the desire to DO those things was ever-present yet always unnoticed.
What does the season of fall mean now? It means haunting nightmares. It means children talking about costumes, but only 3 of them have decided what they'll be this year. There used to be four. I'm programmed for 4. I don't know how to do three. And Halloween means working particularly hard to put on a fake smile for my children as they run from door to door. No part of me wants anything to do with Halloween. But, even as I dread that day, I know that the burning pain I will experience then will be a papercut compared to the days to come.
Soon I'll have to listen to excited talk about Thanksgiving and Christmas. I'll hear songs that used to bring immediate happiness and anticipation, and now only bring anger and hurt. I used to love Christmas. Who doesn't when they've never been burned? It can be such a magical time of giving and love for others. But it also has the power to bring with it, the pain of an entire year. Now, Christmas means going through the motions of "family traditions" that mean nothing to me. How could they? My family isn't here. And while that statement inevitably brings up the "you have three children and a husband here" sentiment, it doesn't change the fact that what I say is true.
Having these feelings, and expressing them openly does not mean that I'm not grateful for the people in my life. I take less for granted than I ever would have, had I not met and loved my son. But, I've heard enough of the stories of putting on a brave face and shining in the face of tragedy. The truth is that sometimes "shining" means simply getting out of bed on these days. It means sitting in a room of people who are smiling and laughing while you hide behind a face of stone. For me, any expectation that I would "suck it up" to enjoy these days is ludicrous. It's the same as walking through a graveyard and asking its occupants to get up and participate. I am often confused by the idea that anyone could think that I'm able to function beyond basic movement. The truth is, I cannot walk and yet, my legs take me from one side of the room to the other. I cannot breathe, yet my chest rises and falls without fail. None of these functions are voluntary at this point. They just happen. And that's how my "holidays" will pass. They will just happen.
I assume that fall will take on new meanings for myself and my family as the years go on, but I also know for sure that they'll always bring with them a pain that I'll never adequately describe. I won't see what silly costume he picks out, or work tirelessly to come up with a special candy for him to eat. I won't have 6 full chairs around my Thanksgiving table, and I'll never see his eyes light up when it's time to open the presents. He won't be here in the way that I want him to, and I know that. I will likely never know the "fear" of having to work through the holidays. I'll never worry that I could possibly miss out on all the festivities that this time of year inevitably brings. No, that won't be me. I won't be afraid to miss it. My fear lies in showing up.
It used to be discussing holiday traditions with other school parents. What does your family do for Halloween? That answer used to be so simple. "Oh, not much I guess. We go to my sister's house and my mom makes every kind of soup imaginable. The kids trick or treat around my old hometown. Of course, there is always that huge gamble of whether or not the 4 costumes I picked out will be warm enough! Fingers crossed!" I didn't think it was much at the time, because I didn't know it was everything. And not just the act, or the gathering, but the desire to DO those things was ever-present yet always unnoticed.
What does the season of fall mean now? It means haunting nightmares. It means children talking about costumes, but only 3 of them have decided what they'll be this year. There used to be four. I'm programmed for 4. I don't know how to do three. And Halloween means working particularly hard to put on a fake smile for my children as they run from door to door. No part of me wants anything to do with Halloween. But, even as I dread that day, I know that the burning pain I will experience then will be a papercut compared to the days to come.
Soon I'll have to listen to excited talk about Thanksgiving and Christmas. I'll hear songs that used to bring immediate happiness and anticipation, and now only bring anger and hurt. I used to love Christmas. Who doesn't when they've never been burned? It can be such a magical time of giving and love for others. But it also has the power to bring with it, the pain of an entire year. Now, Christmas means going through the motions of "family traditions" that mean nothing to me. How could they? My family isn't here. And while that statement inevitably brings up the "you have three children and a husband here" sentiment, it doesn't change the fact that what I say is true.
Having these feelings, and expressing them openly does not mean that I'm not grateful for the people in my life. I take less for granted than I ever would have, had I not met and loved my son. But, I've heard enough of the stories of putting on a brave face and shining in the face of tragedy. The truth is that sometimes "shining" means simply getting out of bed on these days. It means sitting in a room of people who are smiling and laughing while you hide behind a face of stone. For me, any expectation that I would "suck it up" to enjoy these days is ludicrous. It's the same as walking through a graveyard and asking its occupants to get up and participate. I am often confused by the idea that anyone could think that I'm able to function beyond basic movement. The truth is, I cannot walk and yet, my legs take me from one side of the room to the other. I cannot breathe, yet my chest rises and falls without fail. None of these functions are voluntary at this point. They just happen. And that's how my "holidays" will pass. They will just happen.
I assume that fall will take on new meanings for myself and my family as the years go on, but I also know for sure that they'll always bring with them a pain that I'll never adequately describe. I won't see what silly costume he picks out, or work tirelessly to come up with a special candy for him to eat. I won't have 6 full chairs around my Thanksgiving table, and I'll never see his eyes light up when it's time to open the presents. He won't be here in the way that I want him to, and I know that. I will likely never know the "fear" of having to work through the holidays. I'll never worry that I could possibly miss out on all the festivities that this time of year inevitably brings. No, that won't be me. I won't be afraid to miss it. My fear lies in showing up.
Saturday, August 23, 2014
Why Ice?
I realize that this is a widely debated topic and will certainly never come to a place of resolution in which 100% of the population is on board. However, I also know that many articles are circulating that give one side of the debate, and I would like to share another. I have learned, in my 32 years, that unless you have actually experienced something yourself, you cannot say with certainty how you would approach any situation. Having said that, I would like to discuss the topic of the ALS ice bucket challenge, as I see it based on my own experiences.
Facebook has been inundated with videos of people of all ages pouring buckets of ice water over their heads, making monetary donations, and most importantly, raising awareness for a devastating illness. The response has been overwhelming. Even the nay-sayers, who criticize performing the challenge are raising more awareness by complaining about what's being done. All of this attention only further educates the public about something that was widely misunderstood only a few short weeks ago. However, one particular article that has repeatedly shown up in my own newsfeed, disturbs me greatly. It discusses the need to decline the challenge/donation because of the use of embryonic stem cell research.
I'm not ignorant to the fact that the reason for this debate is rooted in its seemingly opposing position with religious practices. This is why the discussion will never be settled. There will always be opposing views on when a human becomes a human, or when it inherits a soul, etc. I'm not here to change anyone's mind. I'm not naive enough to think that I'm even capable of doing so. I simply wish to give another side of the story.
As previously stated, it seems only logical that one's own personal experiences would shape their opinions on any number of topics. Someone could assume that they would fall into a certain category and then after living through one of life's many trials, may decide that the original idea no longer applies. So, it makes sense to me that anyone who has not experienced a debilitating illness within their family, would draw the conclusion that something like embryonic stem cell research is not only unnecessary, but wrong. However, ALS is not the only genetic disease that devastates entire families for generations. There is a whole world of people living with, coping with, and dying from diseases that most have never considered.
Most of the disabilities and disorders that we see frequently in the media are ones that have the potential for a positive outcome. Many people endure countless clinic visits, medications, and therapies throughout their lives to combat one form of disorder or another. But so many of them do so in the hopes of PROGRESSING. I challenge you to consider what you might do in a case in which your loved one was diagnosed with something that not only couldn't be cured, but would actually mean that you got a front row seat to watching a slow decline. Some of these include Alpers-Huttenlocher syndrome, Tay Sachs, Dravet Syndrome, LGS, and Rasmussens. And the reason I can name these is because I have experienced one of them and feared the others on my road to diagnosis.
Tay-Sachs disease, for example, is often diagnosed in babies after having completely normal pregnancies and deliveries. One mother describes going to an office to have her son's eyes checked, thinking he'd need glasses, and sitting across from a doctor who informed her that her son actually had this disease. Can you imagine the shock? You're sitting there, contemplating the idea of your poor baby having to wear glasses at such a young age, how much they'll cost, etc., only to find out that he's actually dying. Dravet syndrome involves seizures that progressively get worse, until eventually the child loses nearly all function and ultimately dies. Rasmussen's is also a seizure disorder in which the eventual treatment, used to buy just a little more time before inevitable death, is to remove half of the person's brain. Diseases such as these are just a death sentence. No medication. No treatment. No trials. You're just done. And not quickly. No. You watch as the body of the child you created slowly takes your baby away, piece by piece. It's no longer the name of a disease. That doesn't define your child. What defines them is that silly way they scrunch their nose when they know they're being ornery. What defines them is that no matter how many times you've read Mr. Brown Can Moo, they'll beg you to do it again. What defines them is the sweet smell of their baby breath on your cheek as you rock them to sleep.
I'm not being melodramatic. This is real. This happens. Every day. So, am I in favor of a type of research that could save these helpless children/parents/families from having to watch this slow decline? Not just yes, but Hell yes. I understand that it may be seen as trading a life for a life. I don't happen to believe that, but honestly, that isn't even relevant at this point. These types of disorders and diseases happen, at times, without warning. I had four children. My first three have absolutely no signs of any kind of illness, and certainly not anything as devastating as these. Where was my red flag? I did what many decide to do. I had one more child. Maybe you have 2, or 3, or 4 right now. Maybe they're healthy. If so, it makes sense that you would assume that any subsequent children would also have the same fate. And it even makes sense that you might think that God had something to do with that. But, if we're giving Him/Her/It credit for anything, I choose to thank God/Allah/Mother Natures/And my lucky stars, that there are educated people out there willing to perform life-changing research.
So, why ice? Why ALS? Because my hands can grip things. Because my arms can reach above my head. Because after I've been doused, I can run away on legs that haven't betrayed me. And because I can type these words for those who can't.
Facebook has been inundated with videos of people of all ages pouring buckets of ice water over their heads, making monetary donations, and most importantly, raising awareness for a devastating illness. The response has been overwhelming. Even the nay-sayers, who criticize performing the challenge are raising more awareness by complaining about what's being done. All of this attention only further educates the public about something that was widely misunderstood only a few short weeks ago. However, one particular article that has repeatedly shown up in my own newsfeed, disturbs me greatly. It discusses the need to decline the challenge/donation because of the use of embryonic stem cell research.
I'm not ignorant to the fact that the reason for this debate is rooted in its seemingly opposing position with religious practices. This is why the discussion will never be settled. There will always be opposing views on when a human becomes a human, or when it inherits a soul, etc. I'm not here to change anyone's mind. I'm not naive enough to think that I'm even capable of doing so. I simply wish to give another side of the story.
As previously stated, it seems only logical that one's own personal experiences would shape their opinions on any number of topics. Someone could assume that they would fall into a certain category and then after living through one of life's many trials, may decide that the original idea no longer applies. So, it makes sense to me that anyone who has not experienced a debilitating illness within their family, would draw the conclusion that something like embryonic stem cell research is not only unnecessary, but wrong. However, ALS is not the only genetic disease that devastates entire families for generations. There is a whole world of people living with, coping with, and dying from diseases that most have never considered.
Most of the disabilities and disorders that we see frequently in the media are ones that have the potential for a positive outcome. Many people endure countless clinic visits, medications, and therapies throughout their lives to combat one form of disorder or another. But so many of them do so in the hopes of PROGRESSING. I challenge you to consider what you might do in a case in which your loved one was diagnosed with something that not only couldn't be cured, but would actually mean that you got a front row seat to watching a slow decline. Some of these include Alpers-Huttenlocher syndrome, Tay Sachs, Dravet Syndrome, LGS, and Rasmussens. And the reason I can name these is because I have experienced one of them and feared the others on my road to diagnosis.
Tay-Sachs disease, for example, is often diagnosed in babies after having completely normal pregnancies and deliveries. One mother describes going to an office to have her son's eyes checked, thinking he'd need glasses, and sitting across from a doctor who informed her that her son actually had this disease. Can you imagine the shock? You're sitting there, contemplating the idea of your poor baby having to wear glasses at such a young age, how much they'll cost, etc., only to find out that he's actually dying. Dravet syndrome involves seizures that progressively get worse, until eventually the child loses nearly all function and ultimately dies. Rasmussen's is also a seizure disorder in which the eventual treatment, used to buy just a little more time before inevitable death, is to remove half of the person's brain. Diseases such as these are just a death sentence. No medication. No treatment. No trials. You're just done. And not quickly. No. You watch as the body of the child you created slowly takes your baby away, piece by piece. It's no longer the name of a disease. That doesn't define your child. What defines them is that silly way they scrunch their nose when they know they're being ornery. What defines them is that no matter how many times you've read Mr. Brown Can Moo, they'll beg you to do it again. What defines them is the sweet smell of their baby breath on your cheek as you rock them to sleep.
I'm not being melodramatic. This is real. This happens. Every day. So, am I in favor of a type of research that could save these helpless children/parents/families from having to watch this slow decline? Not just yes, but Hell yes. I understand that it may be seen as trading a life for a life. I don't happen to believe that, but honestly, that isn't even relevant at this point. These types of disorders and diseases happen, at times, without warning. I had four children. My first three have absolutely no signs of any kind of illness, and certainly not anything as devastating as these. Where was my red flag? I did what many decide to do. I had one more child. Maybe you have 2, or 3, or 4 right now. Maybe they're healthy. If so, it makes sense that you would assume that any subsequent children would also have the same fate. And it even makes sense that you might think that God had something to do with that. But, if we're giving Him/Her/It credit for anything, I choose to thank God/Allah/Mother Natures/And my lucky stars, that there are educated people out there willing to perform life-changing research.
So, why ice? Why ALS? Because my hands can grip things. Because my arms can reach above my head. Because after I've been doused, I can run away on legs that haven't betrayed me. And because I can type these words for those who can't.
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