I need to go back and tell her. I need to tell her that the first time she holds him and feels that her family is "complete" is exactly the moment that will be her coffin when he's no longer there. I need to tell her that all the times she buries her face in his soft neck are precisely what will bring her to her knees on a daily basis once that neck has been kissed for the last time. She needs to know that the first time he gets really sick will seem like a skinned knee compared to the anguish and unknown of what is coming. Somehow I've got to tell her that coming home from the hospital after that initial illness doesn't mean that she's "won" anything. I have to go back in time and have the conversation that lets her know that no matter how many parts of her die, no matter how hard she "fights", no matter how many pieces of her life that she gives up along the way, she cannot make him stay. There has to be a way for me to warn her about those memories she thinks she's making. I need to tell her that the happy times full of smiles and laughter will eventually become razorblades. That they'll know exactly when and how deep to cut in order to leave her a gaping sieve of pain, but not enough to completely end it. They'll tear at her flesh until there is nothing left but a shell, and she'll be expected to be ok with living in that shell. She'll be expected to want to wake up another day, only to be cut again and again.
She looks so happy right now, but I know what awaits her. Shouldn't I be able to warn her? Shouldn't I be the one to tell her that what's coming will leave her a dead woman among the living? But, I can't. It isn't possible for her to know what lies ahead. No one will tell her. No one will turn her face away from that soft neck for fear of the future pain. She'll bury her face in it again and again and drink in his beautiful scent, all the time assuming that she can always come back for more. When he gets sick she'll push and push and let herself die so that he might live. She'll forget her friends and her family. She'll ignore her own needs, and all for nothing. For now, my inability to give her that information is her gift. The gift of ignorance. And although I may be wiser to what's in store, although I may know something that she doesn't, I'm grateful for her innocence. I'm grateful for my inability to crush her. That will come soon enough, and when it does it isn't the presence of the biting razorblade memories that will be her end, it's the absence of that sweetest scent that will mortally wound her soul.
Sunday, July 28, 2013
Wednesday, July 24, 2013
Cheap Seats
I recently read in one of my MANY books on grief and afterlife, about how people surrounding the grieving person were struggling to do the "right thing" when it came to comfort. One of the things the author talked about was going to a library and finding books on grief and coping mechanisms. Although I know that there is no rule book for grief, and no way that any one person could possibly write the perfect manual, I do think that this is one of the better ideas. And that thought brings me to the pieces that I would add to such a book. I'm typically uninterested in academic degrees alone than I am in such a title playing a submissive to role to actual life experience, and am much more likely to listen to insights about grief from someone who has a PhD in pain. Having said that, these are my thoughts.
SIT AND LISTEN. That's it. It's really that simple. Show up and sit down. But, only do so when you have nowhere to be because grief doesn't understand time or appointments. I would advise you not to give the impression that you are constantly available because, first of all that isn't true, and secondly, you can't be all things to another person at all times. It's just not feasible. It's sort of the "grab your own oxygen mask before applying it to others" airplane rule. And think about it, isn't saying that you can do ANYTHING for the grieving person sort of implying that they could be doing something differently as well? That maybe if they worked harder, prayed harder, meditated more, reached out, etc, etc, etc, that things could be better? Listening also means mouth closed and ears open. This is the hardest part, but the best thing you can do is to just be. Just listen. If, however, you sense a break in the outpouring of grief in which you feel compelled to respond, immediately remove these next few phrases from your brain, thereby making it impossible for them to reach your lips:
"You should..."
"Yes, but..."
"You have to stay strong for..."
"Maybe if you just..."
"In a better place"
"An angel now"
"Time heals..."
"I understand"
None of these things are helpful, because there is no fix. There is no "all better." There is no "someday." Those possibilities have been erased. Know that if the person you are listening to (not TALKING to) has made it this far in that particular day, it's likely all that they are capable of doing. And the same will be true for tomorrow and for each tomorrow after that.
CRY. I'm often surprised at the number of people who shy away from talking to me because they "didn't want to break down because that's the last thing you need." Interesting. I suppose I might feel the same way if I weren't the one living this, but because I am I can tell you that I've never once been upset with someone for sharing in my pain in that very physical show of emotion. How could you NOT cry? And if crying makes you uncomfortable I suppose it probably is better to avoid talking to me, or anyone else who's grieving for that matter. But know that your tears cannot make this worse. Your emotion doesn't lessen ours or make it go away. The grieving person will be able to let you know when it's too much because they'll simply move on, as they've lost the ability to take on any more. So, just let the tears fall, at least for me. I'll likely be right there with you.
EXPECT NOTHING. This happens to be exactly what a grieving person has to offer. Nothing. Expect that phone calls will not be returned. Expect that your biggest gesture of love and comfort may not be immediately noticed (although I will tell you that it doesn't go completely unnoticed). Expect that the grieving person will say something that makes you uncomfortable. Examples:
"I'm SO angry! I hate everyone!"
"I can't possibly continue living another second."
"I need to drink/smoke/sleep to get through the next few minutes/hours/days/years."
Do you know what your response is to any one of these three things? It's quite simple really. The only required response to anything related to the above statements is NOTHING. Say nothing. That's right. You have absolutely no control over how this moment/day/year/lifetime turns out for this person. You do, however, have a choice. You can hold their hand while they do it, or you can walk away from the pain. And although the latter may sound cruel or harsh, the truth is that it is just as acceptable as the former. Grief is ugly and unpredictable. It's exhausting and relentless, and sometimes that is just too much for someone whose view is from the sidelines. And no matter how close you are to the situation, your view is always from the sidelines, from those cheap seats located in the furthest reaches of the stadium.
CHEAP SEATS. Keep this important aspect in mind as you watch this person navigate their own grief. You may be extremely close to the situation. You may have your own pain to deal with associated with the loss (and if this is true, it is unlikely that you are the one being sought out by the grieving person). And as much as you feel for that person and as often as you think/pray/meditate on their behalf, you are still viewing it from the outside. You have moments when you can "forget" for a time. You can get dressed without feeling guilty for continuing to live. You can drive a car in silence and not be completely blind-sided by a horrifying image that you only wish were a nightmare, but that you know you actually did experience. Those times of mental playback can be so incredibly vivid and can drop you without a moment's notice. The grieving person doesn't have the luxury of experiencing this from the periphery, so remember when you think you have an "answer" or a suggestion that you've rested. You've stepped away for a moment. You've lived. Take that moment of reflection on your view from the outside and be grateful that you missed out on the front row.
SIT AND LISTEN. That's it. It's really that simple. Show up and sit down. But, only do so when you have nowhere to be because grief doesn't understand time or appointments. I would advise you not to give the impression that you are constantly available because, first of all that isn't true, and secondly, you can't be all things to another person at all times. It's just not feasible. It's sort of the "grab your own oxygen mask before applying it to others" airplane rule. And think about it, isn't saying that you can do ANYTHING for the grieving person sort of implying that they could be doing something differently as well? That maybe if they worked harder, prayed harder, meditated more, reached out, etc, etc, etc, that things could be better? Listening also means mouth closed and ears open. This is the hardest part, but the best thing you can do is to just be. Just listen. If, however, you sense a break in the outpouring of grief in which you feel compelled to respond, immediately remove these next few phrases from your brain, thereby making it impossible for them to reach your lips:
"You should..."
"Yes, but..."
"You have to stay strong for..."
"Maybe if you just..."
"In a better place"
"An angel now"
"Time heals..."
"I understand"
None of these things are helpful, because there is no fix. There is no "all better." There is no "someday." Those possibilities have been erased. Know that if the person you are listening to (not TALKING to) has made it this far in that particular day, it's likely all that they are capable of doing. And the same will be true for tomorrow and for each tomorrow after that.
CRY. I'm often surprised at the number of people who shy away from talking to me because they "didn't want to break down because that's the last thing you need." Interesting. I suppose I might feel the same way if I weren't the one living this, but because I am I can tell you that I've never once been upset with someone for sharing in my pain in that very physical show of emotion. How could you NOT cry? And if crying makes you uncomfortable I suppose it probably is better to avoid talking to me, or anyone else who's grieving for that matter. But know that your tears cannot make this worse. Your emotion doesn't lessen ours or make it go away. The grieving person will be able to let you know when it's too much because they'll simply move on, as they've lost the ability to take on any more. So, just let the tears fall, at least for me. I'll likely be right there with you.
EXPECT NOTHING. This happens to be exactly what a grieving person has to offer. Nothing. Expect that phone calls will not be returned. Expect that your biggest gesture of love and comfort may not be immediately noticed (although I will tell you that it doesn't go completely unnoticed). Expect that the grieving person will say something that makes you uncomfortable. Examples:
"I'm SO angry! I hate everyone!"
"I can't possibly continue living another second."
"I need to drink/smoke/sleep to get through the next few minutes/hours/days/years."
Do you know what your response is to any one of these three things? It's quite simple really. The only required response to anything related to the above statements is NOTHING. Say nothing. That's right. You have absolutely no control over how this moment/day/year/lifetime turns out for this person. You do, however, have a choice. You can hold their hand while they do it, or you can walk away from the pain. And although the latter may sound cruel or harsh, the truth is that it is just as acceptable as the former. Grief is ugly and unpredictable. It's exhausting and relentless, and sometimes that is just too much for someone whose view is from the sidelines. And no matter how close you are to the situation, your view is always from the sidelines, from those cheap seats located in the furthest reaches of the stadium.
CHEAP SEATS. Keep this important aspect in mind as you watch this person navigate their own grief. You may be extremely close to the situation. You may have your own pain to deal with associated with the loss (and if this is true, it is unlikely that you are the one being sought out by the grieving person). And as much as you feel for that person and as often as you think/pray/meditate on their behalf, you are still viewing it from the outside. You have moments when you can "forget" for a time. You can get dressed without feeling guilty for continuing to live. You can drive a car in silence and not be completely blind-sided by a horrifying image that you only wish were a nightmare, but that you know you actually did experience. Those times of mental playback can be so incredibly vivid and can drop you without a moment's notice. The grieving person doesn't have the luxury of experiencing this from the periphery, so remember when you think you have an "answer" or a suggestion that you've rested. You've stepped away for a moment. You've lived. Take that moment of reflection on your view from the outside and be grateful that you missed out on the front row.
Saturday, July 6, 2013
PICU vs. PITA
I've got an idea for a new "reality" tv show. First I'll explain how I came to this mind-blowing discovery. I happened to be flipping through channels and I had to get up and attend to something else, so I left it on the current channel. When I returned to the tv I noticed that the commercial was over and the show that was on was called, "Say Yes To The Dress." I was sort of preoccupied so the show remained on my tv and I started to catch glimpses of what the people were trying to do. Here are a few gems from the episode I saw:
"I just want everything to be PERFECT for this wedding because I'm kind of OCD about it."
"I'm getting really nervous because I haven't seen the dress in so long and I'm just hoping I like it as much as I did then. I mean, can you IMAGINE if I didn't like it?!?"
"I can't believe it, but this ISN'T at all the dress I remember wanting. For one thing, it's a little more white than ivory..."
This got me thinking about some clips I saw (by accident) of the show "Toddlers In Tiaras." I specifically remember a mother telling her child that her hair looked awful and that she needed to keep her fake teeth in because her regular ones were "hideous." You know, hideous in the way that only a 5 year old can be...the nerve those children have, losing their baby teeth at such an inopportune time. I also saw one of the girls talking about how she would "just die" if she didn't win grand cupcake supreme al a mode or whatever the hell it was.
How can I put this in a way that is tactful, yet gets my point across?...ARE. YOU. FREAKING. KIDDING. ME???? Screw tactful, I'm just pissed. You've GOT to be joking. We're talking about a perfect wedding dress? Really? Perfect teeth on a five year old? A perfect ivory versus a less than perfect white???? This is absolutely ridiculous. And people WATCH this crap. Tell me you don't get all teary-eyed when the bride's dress doesn't fit like a glove. Tell me you don't wait with baited breath as the entitled, self-centered, ego maniac deliberates her final say on whether or not this piece of fabric is up to par. Please tell me that's not what's driving people to watch these shows.
Needless to say, 45 seconds of the show was all I needed to see before changing the channel and seriously considering throwing the remote through the tv. This brings me to my original thought, the new reality tv show. I would call it PICU vs. PITA. This is how it would work. The show would feature just a room with chairs lining opposite walls. One side would consist of the "characters" from these two shows, and the other side would feature PICU moms. For those of you who don't know (first of all consider yourselves extremely fortunate) the PICU is a pediatric intensive care unit. Each time someone from the aptly named Pain In The Ass group complains about anything, the PICU moms get to choose someone from their team to "teach" a little perspective. For example:
PITA Mom: "My daughter had to go up on stage with an imperfect hairdo! The horror!!"
PICU Mom, whose daughter just had to be consoled as she cleaned up the clumps of hair that fell out onto the pillow as a result of the poisonous chemo treatment she just received, doesn't need to say a word. She's simply allowed to meet the idiot in the middle of the room and slam her in the head with a 2x4.
PITA Group: "But, if my dress doesn't come in a sweetheart neckline, I may as well call off the wedding! It wouldn't be perfect anyway. I never get what I want!"
PICU Mom with no malice in her voice, only fatigue and endless pain: "Do you know what the perfect day would be for our family? The day that we even get to hope that there could ever be the possibility of a wedding."
PITA Mom: "I hate to see her mess up on stage like that! She's worked so hard!"
PICU Mom: "Hard? Today I had to watch as the medication that has the same potential to kill my son as it does to cure him, drip from the top of his iv pole into his battered arm. And I told the doctors to give it."
I know this probably seems extreme and crazy, but guess what?!?! Just because you don't WANT to see it, doesn't mean that it doesn't exist. REAL people deal with this every day. They have no idea what it means to feel anxiety over a botched pirouette. Their anxiety comes from countless sleepless days and nights. Their fear lies in how much longer they can scrape by, having not eaten in 4 days because food isn't a priority. And as awful as all of that is, as painful and insane as the PICU existence can be, there are those of us who would give everything we have to get the chance to fight through that Hell again. We'd give it all up for one more smile, one more whiff of our children's perfect scent, one more grasp of their hands. So, yes, your dress may be less than perfect and your child may not be named little miss candy corn princess, but I have to say that I don't really give a damn. Unless of course you're signing up for my show, in which case, let me be the first one to greet you...with my 2x4.
"I just want everything to be PERFECT for this wedding because I'm kind of OCD about it."
"I'm getting really nervous because I haven't seen the dress in so long and I'm just hoping I like it as much as I did then. I mean, can you IMAGINE if I didn't like it?!?"
"I can't believe it, but this ISN'T at all the dress I remember wanting. For one thing, it's a little more white than ivory..."
This got me thinking about some clips I saw (by accident) of the show "Toddlers In Tiaras." I specifically remember a mother telling her child that her hair looked awful and that she needed to keep her fake teeth in because her regular ones were "hideous." You know, hideous in the way that only a 5 year old can be...the nerve those children have, losing their baby teeth at such an inopportune time. I also saw one of the girls talking about how she would "just die" if she didn't win grand cupcake supreme al a mode or whatever the hell it was.
How can I put this in a way that is tactful, yet gets my point across?...ARE. YOU. FREAKING. KIDDING. ME???? Screw tactful, I'm just pissed. You've GOT to be joking. We're talking about a perfect wedding dress? Really? Perfect teeth on a five year old? A perfect ivory versus a less than perfect white???? This is absolutely ridiculous. And people WATCH this crap. Tell me you don't get all teary-eyed when the bride's dress doesn't fit like a glove. Tell me you don't wait with baited breath as the entitled, self-centered, ego maniac deliberates her final say on whether or not this piece of fabric is up to par. Please tell me that's not what's driving people to watch these shows.
Needless to say, 45 seconds of the show was all I needed to see before changing the channel and seriously considering throwing the remote through the tv. This brings me to my original thought, the new reality tv show. I would call it PICU vs. PITA. This is how it would work. The show would feature just a room with chairs lining opposite walls. One side would consist of the "characters" from these two shows, and the other side would feature PICU moms. For those of you who don't know (first of all consider yourselves extremely fortunate) the PICU is a pediatric intensive care unit. Each time someone from the aptly named Pain In The Ass group complains about anything, the PICU moms get to choose someone from their team to "teach" a little perspective. For example:
PITA Mom: "My daughter had to go up on stage with an imperfect hairdo! The horror!!"
PICU Mom, whose daughter just had to be consoled as she cleaned up the clumps of hair that fell out onto the pillow as a result of the poisonous chemo treatment she just received, doesn't need to say a word. She's simply allowed to meet the idiot in the middle of the room and slam her in the head with a 2x4.
PITA Group: "But, if my dress doesn't come in a sweetheart neckline, I may as well call off the wedding! It wouldn't be perfect anyway. I never get what I want!"
PICU Mom with no malice in her voice, only fatigue and endless pain: "Do you know what the perfect day would be for our family? The day that we even get to hope that there could ever be the possibility of a wedding."
PITA Mom: "I hate to see her mess up on stage like that! She's worked so hard!"
PICU Mom: "Hard? Today I had to watch as the medication that has the same potential to kill my son as it does to cure him, drip from the top of his iv pole into his battered arm. And I told the doctors to give it."
I know this probably seems extreme and crazy, but guess what?!?! Just because you don't WANT to see it, doesn't mean that it doesn't exist. REAL people deal with this every day. They have no idea what it means to feel anxiety over a botched pirouette. Their anxiety comes from countless sleepless days and nights. Their fear lies in how much longer they can scrape by, having not eaten in 4 days because food isn't a priority. And as awful as all of that is, as painful and insane as the PICU existence can be, there are those of us who would give everything we have to get the chance to fight through that Hell again. We'd give it all up for one more smile, one more whiff of our children's perfect scent, one more grasp of their hands. So, yes, your dress may be less than perfect and your child may not be named little miss candy corn princess, but I have to say that I don't really give a damn. Unless of course you're signing up for my show, in which case, let me be the first one to greet you...with my 2x4.
Tuesday, June 11, 2013
Stranger
I don't belong here anymore. I don't fit. You can't live through this kind of pain and then function in the world that existed before your fall. Somehow people still care about mundane things. Even though they know he's gone, they still have the capacity to think about something other than the gaping hole he left. I don't. I can't focus on anything but the pain. How could I not? How do you ignore a fire in your chest? This is one flame that can't be extinguished. It can't be fixed. But, the difference between myself and everyone around me is that I know now that sometimes that's just the way things happen.
I question myself constantly. Did I try hard enough? Did I "fight" as people claim to be doing every day? Did I give up? I must have, right? I mean, if it's true that others are making it because they're fighting, the only logical explanation for someone who no longer has that option is that they've failed. I get in trouble for saying that. I'm berated for thinking that I could have done something to protect him, to have saved him from the Hell that he experienced. But tell me what I'm supposed to think. If it's true that you aren't at fault when your child is in pain, why do you keep trying to prevent it? Why do people continue to kill themselves to stay one step ahead of their children's happiness? And I'm not even talking about sick children. I'm talking about all parents doing everything they can to prevent even the smallest injustice from plaguing their child. The idea that anyone has any control over that makes me angry.
I'm angry because I couldn't protect my children. This is why I don't fit. I will never again worry about whether or not my child has a good nap, or the right cup to drink from, the best teacher, the right sports team, etc. None of that matters, and I know that. Anyone can read that sentence and see that of course those things don't matter, but you don't KNOW it until you KNOW it. Some would say that this type of thinking is a gift, a blessing even. You no longer concern yourself with details and are therefore able to focus on things that matter. But, I assure you, this is NOT a gift. It's isolating. The loneliness on this side of things is so overwhelming that it goes beyond description. How are you supposed to engage in conversation with friends and family when this is your way of thinking? How do you offer any insight into anything other than the giant, raw wound that permeates every part of you?
Sure there are times when I talk about other things. I can even be pretty convincing in certain conversations. But, I'm not fooling myself. The pain is still there. It's as strong as ever, even when I'm smiling. Just because I'm not sobbing at the moment doesn't mean that the pain has subsided even a little. It's jarring and crushing, all day long, every day. It doesn't go away when a fun day is planned. It isn't hiding during a perfect distraction. It's there. Always. Never leaving. This is not conducive to normal relationships with normal people. I hear them talk about typical life happenings and I'm overcome with emotion. I'm not angry at them. EVER. I'm jealous. I ache for the ability to assume anything is within my control.
I know what kind of response is elicited from a statement like that. "She's grieving. She's sad. She only thinks nothing is in her control because of the huge scar on her heart." But, I know better. I know the truth. The only question is, how do I live with that truth? I have to learn how to be a completely different person. Every decision I make, every response I have is a combination of the old me and the new me. The new me always gets more consideration. That, too, is no longer within my control.
My hair is the same. My eyes are the same blue. I still walk with the same stride. Even my smile can be faked enough to look like it always did. But, no matter how many similarities remain, the woman in the mirror is a complete stranger.
I question myself constantly. Did I try hard enough? Did I "fight" as people claim to be doing every day? Did I give up? I must have, right? I mean, if it's true that others are making it because they're fighting, the only logical explanation for someone who no longer has that option is that they've failed. I get in trouble for saying that. I'm berated for thinking that I could have done something to protect him, to have saved him from the Hell that he experienced. But tell me what I'm supposed to think. If it's true that you aren't at fault when your child is in pain, why do you keep trying to prevent it? Why do people continue to kill themselves to stay one step ahead of their children's happiness? And I'm not even talking about sick children. I'm talking about all parents doing everything they can to prevent even the smallest injustice from plaguing their child. The idea that anyone has any control over that makes me angry.
I'm angry because I couldn't protect my children. This is why I don't fit. I will never again worry about whether or not my child has a good nap, or the right cup to drink from, the best teacher, the right sports team, etc. None of that matters, and I know that. Anyone can read that sentence and see that of course those things don't matter, but you don't KNOW it until you KNOW it. Some would say that this type of thinking is a gift, a blessing even. You no longer concern yourself with details and are therefore able to focus on things that matter. But, I assure you, this is NOT a gift. It's isolating. The loneliness on this side of things is so overwhelming that it goes beyond description. How are you supposed to engage in conversation with friends and family when this is your way of thinking? How do you offer any insight into anything other than the giant, raw wound that permeates every part of you?
Sure there are times when I talk about other things. I can even be pretty convincing in certain conversations. But, I'm not fooling myself. The pain is still there. It's as strong as ever, even when I'm smiling. Just because I'm not sobbing at the moment doesn't mean that the pain has subsided even a little. It's jarring and crushing, all day long, every day. It doesn't go away when a fun day is planned. It isn't hiding during a perfect distraction. It's there. Always. Never leaving. This is not conducive to normal relationships with normal people. I hear them talk about typical life happenings and I'm overcome with emotion. I'm not angry at them. EVER. I'm jealous. I ache for the ability to assume anything is within my control.
I know what kind of response is elicited from a statement like that. "She's grieving. She's sad. She only thinks nothing is in her control because of the huge scar on her heart." But, I know better. I know the truth. The only question is, how do I live with that truth? I have to learn how to be a completely different person. Every decision I make, every response I have is a combination of the old me and the new me. The new me always gets more consideration. That, too, is no longer within my control.
My hair is the same. My eyes are the same blue. I still walk with the same stride. Even my smile can be faked enough to look like it always did. But, no matter how many similarities remain, the woman in the mirror is a complete stranger.
Friday, May 31, 2013
My Bwother
I've had a hard time articulating my feelings lately. The words in my head aren't doing my heart justice, and that's frustrating for me. Tonight, my 5-year-old daughter, Morgan, expressed what I knew was coming for a couple of weeks now. And the fact that she can't say her "r" sound makes it even more heartbreakingly beautiful. So, I've decided to let her do the talking.
"Mommy! This isn't wight! It's not the same without my bwother. I want to hold him. I want to see him. I want to hear his little giggle. Wemember his giggle, Mommy? Wemember how he used to destwoy my towers in the living woom? Wemember how he laid his head on my chest when I hugged him, and then pushed me away when he was all done? Do you wemember, Mommy?"
I remember, baby. I remember every second of every day. I remember when I'm playing with you outside. I remember when I'm forcing a smile because you've drawn a picture of him. I remember when you smile and I see the same crinkle in your eyes as your baby brother. I remember when I hold you in the chair and the softest scent of baby shampoo nearly breaks me in half. I remember in the car, in my bed, in the kitchen, in the store, in the dentist's office. I remember with every breath.
"I know I don't get to decide for my soul, but sometimes I don't like being here. Sometimes I want to be an angel and go to heaven and just get to see his face again. It isn't faiw, Mommy. My othew fwiends get to play with their bwothers every night. I just want one mowe time. Do you want one mowe time, Mommy?"
Sometimes the pain of living is so overwhelming, I feel as though it can be seen as some sort of color emanating from my body. Is it red for angry? Is it blue for pain? Black for emptiness? I know this feeling well, baby. Sometimes I hate the people I see. I hate the trees, and the ground, and the sky, and the "rainbows denoting salvation and promise for tomorrow." I hate the air that I breathe. It's at those times that no amount of placating, no ridiculous platitude can pull me from the depths of the Hell that I'm in.
Through choked sobs: "Mom-my, I-just-want-him-back. I-can't-stop-the-cwying-some-times. Help me, Mommy. Can you make my heawt stop huwting like it's bwoken? Does your heawt huwt too, Mommy? Do you have the bad cwying sometimes, too?"
There are times when the pain is so much a part of my being that I can do nothing else but break. It's during these times that I have to just stop everything else. It doesn't matter if my house "needs" cleaned, or if I "need" to get a workout in. Nothing else matters but my need to crumble into a heap of heaving sobs. And now, I have to witness yet one more thing that I can't fix, can't heal with a hug. Tonight, I had to be on the other side of those sobs. She has the same guttural scream, the same pleading in her eyes. But this time, I was doing the watching. I took cues from my sources of strength. I held her as she cried and was silent as she screamed. I waited until her breathing slowed and evened out before I tried to offer comfort. I avoided saying things like, "he's in a better place." Instead, I just promised to love her, because that's the only thing I can promise anyway. I told her about the amazing gift I was given because of her. I told her how I would never have to wonder what E would look like when he's 5, 10, or 20. I'll never have to wonder because I seem him in her eyes every day.
"That is the best gift, Mommy. I don't need any pwesents fow my biwthday this year. All I wanted for my biwthday was to look in his cwib and have it NOT be empty. You should have your bwother with you when you tuwn 6. I still talk to him, but he doesn't answer me. I need to know he can hear me. I just want to see him one mowe time."
We stepped outside to get some air, and to our surprise, it had FINALLY stopped raining. Not only had the monsoon quieted, but the sun was actually trying to make an appearance. I looked toward it, and actually gasped out loud. It was BEAUTIFUL. I have seen the rays of the sun shining down through the clouds hundreds of times, but this I had never seen before. Rays of sunlight were shining straight UP. The sight was so breathtaking, and I couldn't help but imagine the immense beauty of this same sight from the other side of the clouds. I piled my children into our van and drove past the trees. I stopped, rolled down the window and said, "Hey, Morgie...I think someone is talking to you..."
The van was silent for a long time. I took a picture and just stared. Then from the back seat, I heard a soft, breathless whisper
:
"Thank you, Beastie..."
"Mommy! This isn't wight! It's not the same without my bwother. I want to hold him. I want to see him. I want to hear his little giggle. Wemember his giggle, Mommy? Wemember how he used to destwoy my towers in the living woom? Wemember how he laid his head on my chest when I hugged him, and then pushed me away when he was all done? Do you wemember, Mommy?"
I remember, baby. I remember every second of every day. I remember when I'm playing with you outside. I remember when I'm forcing a smile because you've drawn a picture of him. I remember when you smile and I see the same crinkle in your eyes as your baby brother. I remember when I hold you in the chair and the softest scent of baby shampoo nearly breaks me in half. I remember in the car, in my bed, in the kitchen, in the store, in the dentist's office. I remember with every breath.
"I know I don't get to decide for my soul, but sometimes I don't like being here. Sometimes I want to be an angel and go to heaven and just get to see his face again. It isn't faiw, Mommy. My othew fwiends get to play with their bwothers every night. I just want one mowe time. Do you want one mowe time, Mommy?"
Sometimes the pain of living is so overwhelming, I feel as though it can be seen as some sort of color emanating from my body. Is it red for angry? Is it blue for pain? Black for emptiness? I know this feeling well, baby. Sometimes I hate the people I see. I hate the trees, and the ground, and the sky, and the "rainbows denoting salvation and promise for tomorrow." I hate the air that I breathe. It's at those times that no amount of placating, no ridiculous platitude can pull me from the depths of the Hell that I'm in.
Through choked sobs: "Mom-my, I-just-want-him-back. I-can't-stop-the-cwying-some-times. Help me, Mommy. Can you make my heawt stop huwting like it's bwoken? Does your heawt huwt too, Mommy? Do you have the bad cwying sometimes, too?"
There are times when the pain is so much a part of my being that I can do nothing else but break. It's during these times that I have to just stop everything else. It doesn't matter if my house "needs" cleaned, or if I "need" to get a workout in. Nothing else matters but my need to crumble into a heap of heaving sobs. And now, I have to witness yet one more thing that I can't fix, can't heal with a hug. Tonight, I had to be on the other side of those sobs. She has the same guttural scream, the same pleading in her eyes. But this time, I was doing the watching. I took cues from my sources of strength. I held her as she cried and was silent as she screamed. I waited until her breathing slowed and evened out before I tried to offer comfort. I avoided saying things like, "he's in a better place." Instead, I just promised to love her, because that's the only thing I can promise anyway. I told her about the amazing gift I was given because of her. I told her how I would never have to wonder what E would look like when he's 5, 10, or 20. I'll never have to wonder because I seem him in her eyes every day.
"That is the best gift, Mommy. I don't need any pwesents fow my biwthday this year. All I wanted for my biwthday was to look in his cwib and have it NOT be empty. You should have your bwother with you when you tuwn 6. I still talk to him, but he doesn't answer me. I need to know he can hear me. I just want to see him one mowe time."
We stepped outside to get some air, and to our surprise, it had FINALLY stopped raining. Not only had the monsoon quieted, but the sun was actually trying to make an appearance. I looked toward it, and actually gasped out loud. It was BEAUTIFUL. I have seen the rays of the sun shining down through the clouds hundreds of times, but this I had never seen before. Rays of sunlight were shining straight UP. The sight was so breathtaking, and I couldn't help but imagine the immense beauty of this same sight from the other side of the clouds. I piled my children into our van and drove past the trees. I stopped, rolled down the window and said, "Hey, Morgie...I think someone is talking to you..."
The van was silent for a long time. I took a picture and just stared. Then from the back seat, I heard a soft, breathless whisper
"Thank you, Beastie..."
Wednesday, May 22, 2013
Three
Toy cars.
Elmo.
Mickey Mouse.
Skinned knees.
These are things a three-year-old should have on his birthday. I don't feel like those things should be so much to ask. I'm not asking for perfection. I don't need potty training, or perfect manners. I don't care about the best birthday cake and the most amazing gifts. I don't need the perfect party theme or balloons and favors. I just want you.
Your birthday is this Saturday, and as a gift to myself I picture how you'd look if you were here. But, if I get to wish, I am going to go all the way with it. I don't picture you here as you were. I see you as you'd be if your body hadn't betrayed you. Your curls are slightly longer, but the ornery grin is still there. I struggle to keep up with you as you run from me giggling. Run. How unbelievably beautiful that would be. That's my wish for you on this third birthday. RUN, baby. Move in ways that you couldn't while you were here. And if you could, stop just long enough to let me know you're here. I'd really love to "feel" you on that special day.
Your brother and sisters will be buying gifts for you. They are excited to get you exactly what you'd want. We know we'll just have to give them away in the end, but what's Super E's birthday without an ETO? We'll send you love and kisses from your favorite place on earth. Look for the lights in the sky because I'm sending three lanterns your way. I know you'll love them. I realized I'm wearing the shirt you always liked best. Remember? The one with the stars on it? You used to point to them and look at me as I counted them. Now you get to see the stars and your lanterns from a vantage point that I can only imagine. Keep pointing...I'll keep counting.
One...Two...Three...
Happy Birthday, my sweet baby boy.
Elmo.
Mickey Mouse.
Skinned knees.
These are things a three-year-old should have on his birthday. I don't feel like those things should be so much to ask. I'm not asking for perfection. I don't need potty training, or perfect manners. I don't care about the best birthday cake and the most amazing gifts. I don't need the perfect party theme or balloons and favors. I just want you.
Your birthday is this Saturday, and as a gift to myself I picture how you'd look if you were here. But, if I get to wish, I am going to go all the way with it. I don't picture you here as you were. I see you as you'd be if your body hadn't betrayed you. Your curls are slightly longer, but the ornery grin is still there. I struggle to keep up with you as you run from me giggling. Run. How unbelievably beautiful that would be. That's my wish for you on this third birthday. RUN, baby. Move in ways that you couldn't while you were here. And if you could, stop just long enough to let me know you're here. I'd really love to "feel" you on that special day.
Your brother and sisters will be buying gifts for you. They are excited to get you exactly what you'd want. We know we'll just have to give them away in the end, but what's Super E's birthday without an ETO? We'll send you love and kisses from your favorite place on earth. Look for the lights in the sky because I'm sending three lanterns your way. I know you'll love them. I realized I'm wearing the shirt you always liked best. Remember? The one with the stars on it? You used to point to them and look at me as I counted them. Now you get to see the stars and your lanterns from a vantage point that I can only imagine. Keep pointing...I'll keep counting.
One...Two...Three...
Happy Birthday, my sweet baby boy.
Tuesday, April 30, 2013
Goodnight Baby Boy (April 30, 2013)
Goodnight baby boy. (April 30, 2011)
Red race car pjs on because it's warm tonight, and because you like vroom vrooms.
We've rocked and read our book.
"You Are My Sunshine" has been sung and the nightlight is on, just the way you like it.
I tuck you in and quietly leave the room, so grateful that you've gone to sleep.
I head down to my own bed because it's been a long day and it's going to be a busy weekend because your cousins are staying with us.
I lay down on my pillow, read my book, and fall asleep rather quickly because my bed is comfortable and this is my routine...
"SHANNON!!! SHANNON!!! Something is wrong. He's shivering or twitching or something!"
Who's talking? Who's saying this? This must be a dream. Who's shivering? Get them a blanket...
Oh, wait. My sleep fog is lifting. It's my baby. It's my husband holding my baby. Okay, focus.
I'm nursing you. But wait, the twitching is still happening. Should I stop? Yes, I should stop. Why?...
What if you have to have surgery? I should stop.
I should call a doctor. It isn't stopping. You're looking at me and even smiling sometimes, but that twitching...
No, I need to call 911. Yes, 911:
"Something is wrong with my baby. He's twitching. Coherent? Yes. Wait, I think so??? My address? Ummm, ok, I think I can remember that. I'm standing in my driveway holding him. I'll wait for you."
Daddy is holding you. He looks so scared. He needs me to tell him that this is ok. I can't.
I'm shivering.
Is it cold?
No, it isn't.
Why is this taking so long? Why are you still twitching? Stop, baby, please stop.
I leave you with Daddy while we wait in the driveway. I'm scared to hold you.
SCARED to hold my own baby? What's wrong with me? What happened? I put you to bed!!
I was asleep. ASLEEP! Because that's what you do at 3 am, right? So what is happening?
Why are you STILL twitching? This should be done now, right? Whatever this is...
Wait, nurse brain is kicking in. This must be one of those febrile seizures. This will stop soon.
We'll get some medication. It will be scary, but over soon.
The ambulance is here. Daddy is handing you to me. Maybe just being in my arms will stop this.
The paramedic has medication. Good. That's what we need. Give it to him. NOW!
It's not stopping. Why isn't it stopping? Can't this man see that I need this to work?? Make it work!
NOW!
We must be at the hospital now. The driver has stopped.
They're rushing us in.
Now they're cutting your red race car pjs off of your body so they can give you the medicine.
Can you feel my hand?
Are you ok? Can you hear me? I'm here. I'll always be here...
You weren't ok. I know that now. And now, I'm not ok.
I will stay up with you tonight as I did that night. I will not sleep until your seizure stops.
Every year. I promise.
It's been two years since that night we were shivering in the driveway.
It's funny, though because so many things have happened since then but so many things are the same.
I'm still shivering. And it still isn't cold.
Your nightlight is on, just the way you like it.
"You Are My Sunshine" has been sung.
Goodnight baby boy. (April 30, 2013)
Red race car pjs on because it's warm tonight, and because you like vroom vrooms.
We've rocked and read our book.
"You Are My Sunshine" has been sung and the nightlight is on, just the way you like it.
I tuck you in and quietly leave the room, so grateful that you've gone to sleep.
I head down to my own bed because it's been a long day and it's going to be a busy weekend because your cousins are staying with us.
I lay down on my pillow, read my book, and fall asleep rather quickly because my bed is comfortable and this is my routine...
"SHANNON!!! SHANNON!!! Something is wrong. He's shivering or twitching or something!"
Who's talking? Who's saying this? This must be a dream. Who's shivering? Get them a blanket...
Oh, wait. My sleep fog is lifting. It's my baby. It's my husband holding my baby. Okay, focus.
I'm nursing you. But wait, the twitching is still happening. Should I stop? Yes, I should stop. Why?...
What if you have to have surgery? I should stop.
I should call a doctor. It isn't stopping. You're looking at me and even smiling sometimes, but that twitching...
No, I need to call 911. Yes, 911:
"Something is wrong with my baby. He's twitching. Coherent? Yes. Wait, I think so??? My address? Ummm, ok, I think I can remember that. I'm standing in my driveway holding him. I'll wait for you."
Daddy is holding you. He looks so scared. He needs me to tell him that this is ok. I can't.
I'm shivering.
Is it cold?
No, it isn't.
Why is this taking so long? Why are you still twitching? Stop, baby, please stop.
I leave you with Daddy while we wait in the driveway. I'm scared to hold you.
SCARED to hold my own baby? What's wrong with me? What happened? I put you to bed!!
I was asleep. ASLEEP! Because that's what you do at 3 am, right? So what is happening?
Why are you STILL twitching? This should be done now, right? Whatever this is...
Wait, nurse brain is kicking in. This must be one of those febrile seizures. This will stop soon.
We'll get some medication. It will be scary, but over soon.
The ambulance is here. Daddy is handing you to me. Maybe just being in my arms will stop this.
The paramedic has medication. Good. That's what we need. Give it to him. NOW!
It's not stopping. Why isn't it stopping? Can't this man see that I need this to work?? Make it work!
NOW!
We must be at the hospital now. The driver has stopped.
They're rushing us in.
Now they're cutting your red race car pjs off of your body so they can give you the medicine.
Can you feel my hand?
Are you ok? Can you hear me? I'm here. I'll always be here...
You weren't ok. I know that now. And now, I'm not ok.
I will stay up with you tonight as I did that night. I will not sleep until your seizure stops.
Every year. I promise.
It's been two years since that night we were shivering in the driveway.
It's funny, though because so many things have happened since then but so many things are the same.
I'm still shivering. And it still isn't cold.
Your nightlight is on, just the way you like it.
"You Are My Sunshine" has been sung.
Goodnight baby boy. (April 30, 2013)
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