I remember when your brother turned five. He was so excited to be "one whole hand." Five. It seems so much older than four. I wonder what you'd look like? Would you be excited about starting school in the fall? What bookbag would you choose? Would I fall in line with all the other mothers who are "mourning" the last days of their youngest baby being at home with them? I'm certainly mourning, but I wish with my whole heart that it were for that reason.
Sometimes it's hard not to be angry with you, to feel cheated. I know that isn't rational, but grief doesn't really care about that. I'm hurt that you left. I know you had no control over that, but I guess the pain has to go somewhere. I'm angry that instead of feeling overwhelmed by the prospect of returning to work now that my last baby is in school, I'm trying to figure out whether I'll ever be stable enough to do so again. Lately, I've been thinking that answer is probably yes. That doesn't necessarily feel good though. But then I remember that very few things feel wholly "good" or "right". Everything brings this underlying layer of pain or in some ways even worse, ambivalence. It's difficult to be passionate about anything these days. The attempt to do so seems futile.
However, I will say to you, as your fifth birthday approaches, that although we may have no idea what to get you for your birthday, the gifts you've given us have been immeasurable. As we were all crammed in the car the other night, coming home from various activities, I was struck once again by our good fortune. We had been running around all night, chasing your brother and sisters. And why? Because we can. They're healthy. They have friends.
Without you, I would still be trying to "control" nearly every aspect of my life. I would still be obsessed with making life as easy as possible for your siblings. I would still think it was my job to protect them from everything. You changed that for me. That's a gift one can't fully accept on their own. That came from you. Because of your life, your existence, your illness, your death, I KNOW that it isn't my job to "control" anything. Instead, I just get to live. I get to watch your siblings grow and learn, and I do so without fear. I do so without the idea that I need to protect them. All I do is love them as they go along. I watch them as they learn some of the things I already have, as well as teach me the things I could have never learned without them. I thank you for that.
I realize more and more with each passing day how very lucky I am to be your mother. You've taught me strength, generosity, humility, pain, and absolute, unconditional love. I would give it all up to smell your soft curls as I wrap my arms around you one more time, but knowing that this can't be, I'm simply grateful.
Your birthday always brings with it, a new type of pain. It burns and stings and I barely make it through the day. The support of friends and family, and their understanding that this day simply has to be set aside for that pain, is what gets me through it. So tomorrow, as we try to navigate the day, as we send up your 5 lanterns, as we hug and hold one another, send us a sign that you see us and feel our pain. Let us know that you're celebrating too. Know that we miss you with every breath, that we love you with each heartbeat, and that we celebrate your gifts to us on this day that you turn, "one whole hand."
Sunday, May 24, 2015
Sunday, May 10, 2015
Broken Mother's Memory
As per my usual, I've been awake for hours and it's only 5 am. My mind has my body trapped in that place where the past meets a future that will never exist. It's a funny thing, the grieving mother's "memory". At first, all I could think about were those last hours. The sights, the smells, the sounds...post traumatic stress at its finest. Eventually, mixed with those gut gripping moments, came memories of happier times. But all of that somehow gets jumbled now with thoughts of a future that my forever baby can never have. It's as if time doesn't exist in the broken mother's memory, at least not time as we know it.
He's going to be 5 soon. Five sounds so much older than 4. That probably has something to do with the fact that a 5 year old is now a school-aged child. I've never seen my son at 5 years old. And I never will. I won't see him try to carry a backpack that's bigger than he is. I won't see him learn to tie his shoes or read his first sentence from a book. That doesn't make any sense, so I think my mind creates those moments for me. It's like a "memory" from a future that will never exist. Just as I get flashes of the past, I see moments that have never happened as if I'm remembering them in some bizarre, reverse order.
Today is Mother's Day. I'm not a fan of this particular day, but add it to the list of days I wish I could sleep through. I need one more macaroni and fingerprint portrait to make it complete, but it won't come. I need a dandelion bouquet full of ants thrust in my face from the pudgy hand of a preschooler. Maybe today, my broken mother's memory will flash to a time when that happens. Maybe for a split second, that curse/gift of life without time, will take me to a place where I don't have to question my status as a mother of four.
My stomach turns in knots as I write. My brain races forward and backward and forward again. It's a broken mother's memory. It bends the rules of time. In an odd way, I'm grateful for this broken memory of mine. It goes well with my broken heart, and my lungs that don't quite take in enough air. It reminds me of the journey I'm taking. It reminds me that I am a mother in two worlds.
If only macaroni art and fingerpaint handprints could be delivered to both...
He's going to be 5 soon. Five sounds so much older than 4. That probably has something to do with the fact that a 5 year old is now a school-aged child. I've never seen my son at 5 years old. And I never will. I won't see him try to carry a backpack that's bigger than he is. I won't see him learn to tie his shoes or read his first sentence from a book. That doesn't make any sense, so I think my mind creates those moments for me. It's like a "memory" from a future that will never exist. Just as I get flashes of the past, I see moments that have never happened as if I'm remembering them in some bizarre, reverse order.
Today is Mother's Day. I'm not a fan of this particular day, but add it to the list of days I wish I could sleep through. I need one more macaroni and fingerprint portrait to make it complete, but it won't come. I need a dandelion bouquet full of ants thrust in my face from the pudgy hand of a preschooler. Maybe today, my broken mother's memory will flash to a time when that happens. Maybe for a split second, that curse/gift of life without time, will take me to a place where I don't have to question my status as a mother of four.
My stomach turns in knots as I write. My brain races forward and backward and forward again. It's a broken mother's memory. It bends the rules of time. In an odd way, I'm grateful for this broken memory of mine. It goes well with my broken heart, and my lungs that don't quite take in enough air. It reminds me of the journey I'm taking. It reminds me that I am a mother in two worlds.
If only macaroni art and fingerpaint handprints could be delivered to both...
Friday, February 20, 2015
The Manual
Sometimes I wonder what it might have been like to have had a manual for this grief thing I'm doing, what it would be like to have one going forward. Of course, one couldn't have existed until now because no one is doing my journey but me. However, if one had existed, I wonder what that would have looked like? I assume that it would contain bullet points, simply because even short clips of information would have been too much for my brain. Maybe it would have looked something like this:
Well, you're here. I won't say "welcome" because that doesn't really suit your current situation. So, I'll just say that you're here.
-First of all, you're going to feel guilty about that. Just being here. You assume you shouldn't be. And that's ok. You'll feel that way for a long time.
-People will tell you that you aren't to blame and that you don't need to feel guilty. These are the people who love you. They're right of course, but it won't matter. You'll still feel it.
-That fire burning in your chest is all you can think about at the moment. It surprises you that it's actual, physical pain that you feel. You can point to the very spot beneath your breast where the heat is so intense that you're surprised that the skin and surrounding structures can endure it. Over time, little by little, as you scream and release pieces of the pain into the atmosphere, that burn lessens. It's never completely gone though, and down the road, there will be moments where it comes back with as much fury as the first day the fire was lit.
-It will be difficult to live in the world. People will not understand you and you will no longer understand them.
-Family will be the hardest. They are the symbol of what is missing. Of all of the people you interact with, these will be the ones whose entire families are laid before you. You will never question "why me?" with more gusto than when family is present. They will or won't understand. It means little to you now because your focus is on breathing and that fire that engulfs your lungs. You will continue the family struggle later, perhaps forever, because it's as if the earth has split and although the roads you travel may run parallel, they will never connect again. You will watch them from afar, and they you. They cannot understand you...you cannot understand them. This will have to be ok.
-Your marriage will hurt you. The person closest to you, the one who walked each awful step with you, will be the one you turn away. The sight of him will make your blood boil, and for reasons you can't even fathom. You'll discover later that this is normal. It will hurt like hell while it's happening. You won't understand it. He won't understand it. And you'll be powerless to change it. Somewhere along the way, something will shift and you'll realize that although you thought you'd been traveling alone for some time, it was just that you couldn't see the person walking beside you. The tears had made that impossible. He'll be there. You'll be there. Different versions of both of you, but you nevertheless. And despite the changes, when you reach for his hand, yours will still fit.
-You'll be hurt by things you don't want to affect you. You'll want to be strong enough not to turn away from the woman in the grocery store who is pushing her cart full of diapers and baby food, while trying to distract the child in front of her in the seat. But there will be times when you simply cannot smile at her. The intensity of the flame will surely outlast your desire to be social, as the old you would have been. It's ok to turn away. It won't feel ok, but it will be ok.
-You'll be asked to attend things that grief doesn't allow for. Weddings, birthday parties, showers, family dinners, and gatherings in general will simply be something you can't do. That will feel foreign to you, and may evoke anger in others, but it won't change the truth. Try to give yourself some compassion when those things come along and you can't "make" yourself go.
-You'll be asked why you can't attend. That will be difficult, simply because even having to explain why will hurt. They won't understand. You won't understand how they couldn't, and it will hurt. That will have to be ok too.
-Your kids. Right now they're breathing reminders of what was lost. Your heart breaks for them, but is too focused on its own pain to do much about that. Little by little, you'll get back to them. Friends will help. They'll step in and be the mom you can't for awhile. It's ok that you don't have the words to thank them. They already know.
-Sometimes when you think you're "done" for the day, one of your children will come back in from their beds to cry and ask tough questions. "Why didn't you fight harder?! Why did you give up?! We should have done more! Why wasn't it me instead?!" You'll answer the questions you can, and love through the ones you can't. It will break you all over again. But, when you check on her later in her bed, and the tears on her face have almost dried as she sleeps, you'll softly whisper a thank you. You'll thank her for saying the thing that screams through your mind every day. You'll thank her for causing you to say out loud, the reasons that your decisions were the most loving.
-Your children. They'll be such a source of pain, but that pain is mixed with a beauty that you honestly would have missed before. They're stronger than you could have guided them to be on your own. They're more compassionate than you could have modeled for them. They're more loving than you could have hoped. Yes, they are broken, but beautifully so. Try not to miss out on that beauty. Watch for it through the flames if you have to, but don't miss it.
-There could be a hundred bullet points here. It could go on forever. Your grief will, in one way or another. Honor the process, no matter where it takes you, and realize that there IS a manual. Its pages are out of order, its contents messy, but it does exist. You are writing it as you go...
Well, you're here. I won't say "welcome" because that doesn't really suit your current situation. So, I'll just say that you're here.
-First of all, you're going to feel guilty about that. Just being here. You assume you shouldn't be. And that's ok. You'll feel that way for a long time.
-People will tell you that you aren't to blame and that you don't need to feel guilty. These are the people who love you. They're right of course, but it won't matter. You'll still feel it.
-That fire burning in your chest is all you can think about at the moment. It surprises you that it's actual, physical pain that you feel. You can point to the very spot beneath your breast where the heat is so intense that you're surprised that the skin and surrounding structures can endure it. Over time, little by little, as you scream and release pieces of the pain into the atmosphere, that burn lessens. It's never completely gone though, and down the road, there will be moments where it comes back with as much fury as the first day the fire was lit.
-It will be difficult to live in the world. People will not understand you and you will no longer understand them.
-Family will be the hardest. They are the symbol of what is missing. Of all of the people you interact with, these will be the ones whose entire families are laid before you. You will never question "why me?" with more gusto than when family is present. They will or won't understand. It means little to you now because your focus is on breathing and that fire that engulfs your lungs. You will continue the family struggle later, perhaps forever, because it's as if the earth has split and although the roads you travel may run parallel, they will never connect again. You will watch them from afar, and they you. They cannot understand you...you cannot understand them. This will have to be ok.
-Your marriage will hurt you. The person closest to you, the one who walked each awful step with you, will be the one you turn away. The sight of him will make your blood boil, and for reasons you can't even fathom. You'll discover later that this is normal. It will hurt like hell while it's happening. You won't understand it. He won't understand it. And you'll be powerless to change it. Somewhere along the way, something will shift and you'll realize that although you thought you'd been traveling alone for some time, it was just that you couldn't see the person walking beside you. The tears had made that impossible. He'll be there. You'll be there. Different versions of both of you, but you nevertheless. And despite the changes, when you reach for his hand, yours will still fit.
-You'll be hurt by things you don't want to affect you. You'll want to be strong enough not to turn away from the woman in the grocery store who is pushing her cart full of diapers and baby food, while trying to distract the child in front of her in the seat. But there will be times when you simply cannot smile at her. The intensity of the flame will surely outlast your desire to be social, as the old you would have been. It's ok to turn away. It won't feel ok, but it will be ok.
-You'll be asked to attend things that grief doesn't allow for. Weddings, birthday parties, showers, family dinners, and gatherings in general will simply be something you can't do. That will feel foreign to you, and may evoke anger in others, but it won't change the truth. Try to give yourself some compassion when those things come along and you can't "make" yourself go.
-You'll be asked why you can't attend. That will be difficult, simply because even having to explain why will hurt. They won't understand. You won't understand how they couldn't, and it will hurt. That will have to be ok too.
-Your kids. Right now they're breathing reminders of what was lost. Your heart breaks for them, but is too focused on its own pain to do much about that. Little by little, you'll get back to them. Friends will help. They'll step in and be the mom you can't for awhile. It's ok that you don't have the words to thank them. They already know.
-Sometimes when you think you're "done" for the day, one of your children will come back in from their beds to cry and ask tough questions. "Why didn't you fight harder?! Why did you give up?! We should have done more! Why wasn't it me instead?!" You'll answer the questions you can, and love through the ones you can't. It will break you all over again. But, when you check on her later in her bed, and the tears on her face have almost dried as she sleeps, you'll softly whisper a thank you. You'll thank her for saying the thing that screams through your mind every day. You'll thank her for causing you to say out loud, the reasons that your decisions were the most loving.
-Your children. They'll be such a source of pain, but that pain is mixed with a beauty that you honestly would have missed before. They're stronger than you could have guided them to be on your own. They're more compassionate than you could have modeled for them. They're more loving than you could have hoped. Yes, they are broken, but beautifully so. Try not to miss out on that beauty. Watch for it through the flames if you have to, but don't miss it.
-There could be a hundred bullet points here. It could go on forever. Your grief will, in one way or another. Honor the process, no matter where it takes you, and realize that there IS a manual. Its pages are out of order, its contents messy, but it does exist. You are writing it as you go...
Sunday, January 4, 2015
The Nothing
Remember that kid's movie, circa 1984, that featured a young boy, mythical creatures, and special book that transported its reader to an alternate reality? It was called The Neverending Story, and this is what I thought the movie was about at the time. I recently watched it again with my children just to share a bit of my childhood, and I realized that I hadn't a clue what message was actually being conveyed.
The movie is about grief. The young boy has just lost his mother. He lives with his father who is clearly hurting and is trying to raise his son without his partner. Of course I knew that grief played a role in the plot, but I'd had no idea just how intricately woven with pain it had been. I couldn't have, partly because I was a child but more importantly because I had never experienced profound grief myself.
As I was watching with my children, I began to wonder which character I was playing in our own never-ending story. Was I the grieving father? No, I don't often hide my pain and I'm terrible at "pushing through" and ignoring it. Am I the child? No, I didn't lose a parent and the grief is different for those who have. I certainly wasn't the eccentirc book store owner, so who was I? The kids really started getting into the movie, and as children often do, they began asking questions about what was happening. That's when it hit me. I knew who I was. I am The Nothing.
In the movie, The Nothing is what every character is trying to avoid. They're trying to outrun it. What they don't know, throughout the interactive story, is that The Nothing isn't a being to be outrun. It is a force within them. It's the threat of being swallowed by grief. It is portrayed as all things devoid of color and light. It is...Nothing.
I say that I'm The Nothing, not to be melodramatic, but because it makes the most sense to me. My loss has turned me inside out and upside down. I no longer recognize myself, and no matter how hard I try to ignore it and push it down, that new part of me cannot be denied. It cannot be reversed, and it will not be quieted. What I mean to say is that many of my actions and reactions are unrecognizable to me, not only in the capacity that it's foreign to the "old me", but also in that it rarely seems human. I don't respond to situations the way that other people around me do, and I understand why, but that knowledge doesn't make it easier to feel like an outsider.
We recently got a family dog, and he ran away a few days ago. Let me tell you how this scenario goes down for The Nothing. I love my dog, and he's more "my" dog than anyone else in my family, but as I watched those around me react to his disappearance, I began to feel like something may be wrong with me. I received many condolences and offers of help to find him, and while I'm very grateful for the kindness of others, I was clearly not as distraught as even complete strangers were. Some people talked about how scary it is when your pet is lost. While I certainly understand that it would be a difficult situation for many people, I couldn't ever find that particular emotion for myself. Fear? No, I did not feel fear. At least not in the way that I've known in my life. This is not to say that someone else's emotions about a lost pet are wrong. This is not an evaluation of other people's feelings. It's simply a description of my grief process and the ways in which it has changed my life.
My youngest daughter, Morgan, was very upset about his running away, as he was actually her Christmas gift. I tried to console her, but I am incapable of telling her that everything will be fine when I couldn't possibly know the outcome. Furthermore, she's smarter than that. She's grieving too after all. She knows that she can't always have the thing she wants. She knows this at 7. And while I wish every single day that this weren't true, I cannot deny it. I knew what she was actually fearing when her dog left. She feared what I did. We felt that old familiar pang of helpless, hopeless loss. She missed her brother. She begged to have her dog back, but he wasn't who she was asking me for. I know this because only a week before we'd sat together on the couch and screamed and cried for the boy we love. She begged and pleaded with me to return her best friend. She needed him back. Couldn't she "have just one more day, Mommy? I'll be the best big sister."
And guess what? Our dog is back. He came back. Of course I'm happy that he's here, but goddammit it shouldn't have been that easy. Not when my son will never show up on my doorstep. "Praise God he's back"? No. Not here. Not in this house. I certainly hope that God didn't have anything to do with the return of my dog. We needed something much more soul-repairing in this house of The Nothing.
This may end up being the most spoiled dog on the planet. I play with him and he cuddles with me every day. But, when you are The Nothing, there isn't a single thing on the planet that can penetrate that darkness. And this is where the movie loses me. It seems as though The Nothing is deemed "bad" or as if someone were "giving up". I don't see it that way. I think The Nothing is inevitable, and that by navigating in the darkness we learn some powerful things about ourselves. It doesn't make us "better." I don't believe that word will exist for me, but it's part of the process, a part I believe should be embraced and not feared.
Regardless of whether or not I even wanted to "escape" this part of my process, it isn't possible. I can fight it (although I've got no fight left) or I can acknowledge it as part of me. I choose the latter because I'm tired, and because I've learned too many times over that I can "want" all kinds of things and even work hard to achieve them and come up empty. This is not to be confused with pessimism. I'm really not a gloom and doom person. I simply feel as though I live in a different reality. This makes living a human life with human relationships difficult of course. I'm living my own never-ending story. Not my friend's, not my family's, mine. And at this point in the film, I prefer my darkness. I prefer my process. I prefer a land devoid of judgment and outside influence. After all, I am...The Nothing.
The movie is about grief. The young boy has just lost his mother. He lives with his father who is clearly hurting and is trying to raise his son without his partner. Of course I knew that grief played a role in the plot, but I'd had no idea just how intricately woven with pain it had been. I couldn't have, partly because I was a child but more importantly because I had never experienced profound grief myself.
As I was watching with my children, I began to wonder which character I was playing in our own never-ending story. Was I the grieving father? No, I don't often hide my pain and I'm terrible at "pushing through" and ignoring it. Am I the child? No, I didn't lose a parent and the grief is different for those who have. I certainly wasn't the eccentirc book store owner, so who was I? The kids really started getting into the movie, and as children often do, they began asking questions about what was happening. That's when it hit me. I knew who I was. I am The Nothing.
In the movie, The Nothing is what every character is trying to avoid. They're trying to outrun it. What they don't know, throughout the interactive story, is that The Nothing isn't a being to be outrun. It is a force within them. It's the threat of being swallowed by grief. It is portrayed as all things devoid of color and light. It is...Nothing.
I say that I'm The Nothing, not to be melodramatic, but because it makes the most sense to me. My loss has turned me inside out and upside down. I no longer recognize myself, and no matter how hard I try to ignore it and push it down, that new part of me cannot be denied. It cannot be reversed, and it will not be quieted. What I mean to say is that many of my actions and reactions are unrecognizable to me, not only in the capacity that it's foreign to the "old me", but also in that it rarely seems human. I don't respond to situations the way that other people around me do, and I understand why, but that knowledge doesn't make it easier to feel like an outsider.
We recently got a family dog, and he ran away a few days ago. Let me tell you how this scenario goes down for The Nothing. I love my dog, and he's more "my" dog than anyone else in my family, but as I watched those around me react to his disappearance, I began to feel like something may be wrong with me. I received many condolences and offers of help to find him, and while I'm very grateful for the kindness of others, I was clearly not as distraught as even complete strangers were. Some people talked about how scary it is when your pet is lost. While I certainly understand that it would be a difficult situation for many people, I couldn't ever find that particular emotion for myself. Fear? No, I did not feel fear. At least not in the way that I've known in my life. This is not to say that someone else's emotions about a lost pet are wrong. This is not an evaluation of other people's feelings. It's simply a description of my grief process and the ways in which it has changed my life.
My youngest daughter, Morgan, was very upset about his running away, as he was actually her Christmas gift. I tried to console her, but I am incapable of telling her that everything will be fine when I couldn't possibly know the outcome. Furthermore, she's smarter than that. She's grieving too after all. She knows that she can't always have the thing she wants. She knows this at 7. And while I wish every single day that this weren't true, I cannot deny it. I knew what she was actually fearing when her dog left. She feared what I did. We felt that old familiar pang of helpless, hopeless loss. She missed her brother. She begged to have her dog back, but he wasn't who she was asking me for. I know this because only a week before we'd sat together on the couch and screamed and cried for the boy we love. She begged and pleaded with me to return her best friend. She needed him back. Couldn't she "have just one more day, Mommy? I'll be the best big sister."
And guess what? Our dog is back. He came back. Of course I'm happy that he's here, but goddammit it shouldn't have been that easy. Not when my son will never show up on my doorstep. "Praise God he's back"? No. Not here. Not in this house. I certainly hope that God didn't have anything to do with the return of my dog. We needed something much more soul-repairing in this house of The Nothing.
This may end up being the most spoiled dog on the planet. I play with him and he cuddles with me every day. But, when you are The Nothing, there isn't a single thing on the planet that can penetrate that darkness. And this is where the movie loses me. It seems as though The Nothing is deemed "bad" or as if someone were "giving up". I don't see it that way. I think The Nothing is inevitable, and that by navigating in the darkness we learn some powerful things about ourselves. It doesn't make us "better." I don't believe that word will exist for me, but it's part of the process, a part I believe should be embraced and not feared.
Regardless of whether or not I even wanted to "escape" this part of my process, it isn't possible. I can fight it (although I've got no fight left) or I can acknowledge it as part of me. I choose the latter because I'm tired, and because I've learned too many times over that I can "want" all kinds of things and even work hard to achieve them and come up empty. This is not to be confused with pessimism. I'm really not a gloom and doom person. I simply feel as though I live in a different reality. This makes living a human life with human relationships difficult of course. I'm living my own never-ending story. Not my friend's, not my family's, mine. And at this point in the film, I prefer my darkness. I prefer my process. I prefer a land devoid of judgment and outside influence. After all, I am...The Nothing.
Thursday, December 11, 2014
Busy
I've kept busy. Have you seen me? I'm sure you have. It seems I have a new project every day. I don't understand how they're getting done, but they are. Only part of me participates, and it's the unconscious part. The real me floats somewhere above the noise and watches as actual "living" takes place. I often think, "How is she doing that? WHY is she doing that?" It's like watching a play, and in this particular show the character is awfully "busy."
I tried to buy you a Christmas gift. In years past it was difficult but sort of a welcome salve on an open wound. This year is different. I found what I thought was the perfect gift, but as I reached for it, something inside me broke. The busy woman fell silent and the wounded woman stepped forward. What if I only thought this was the perfect gift? I realized in that moment that I was buying a present for my two year old. But, what if my 4 year old had moved on from cows and Mickey Mouse? Shouldn't I know that? Shouldn't I at least get to see your Christmas list? Or maybe you are still two. Maybe you've remained my forever baby. Maybe I'm supposed to buy for both? I should get gifts that my clumsy toddler would have tossed around, as well as presents that my four year old would shove in his backpack to show his preschool friends. I don't know how a mother is supposed to go from knowing every breath to the uncertainty of something as simple as a shoe size.
I thought about that again when I got home and collapsed on the floor. I raced into the bathroom to see if your Sesame Street toothbrush was still hanging where I'd left it. It was there. The little cow holder still held the dust that's collected there from lack of use. I don't know what I expected to find. Maybe I thought if it had fallen on its own that it meant that you'd moved on from Elmo and "moos." Maybe I thought that seeing it there in its forever home would solidify that my baby is frozen in time. His hair still the same length, the creases in his pudgy hands still just as I'd seen them on that last day when I traced them with my finger. Or maybe, just maybe I actually expected to see you there, sitting in your spot on the sink and splashing in the water. Sometimes I absolutely believe that will happen. The rational adult is silenced and the hopeful child looks with anticipation and longing for someone who will never show. I don't know how long that lasts, or how often I'll have to feel the sting of reality, but as much as that moment cuts me, I thank that part of me that forgets for the briefest moment that the whole of my being exists in a veritable Hell on earth.
As I crawl through the next month, I hope you know that the moments that look like living do not mean that I've forgotten. I can't forget. The pain is part of my existence. It's stained on my soul. I will buy the cows. I will buy the show and tell toys. They will go to sick children whose parents still get to fight for them. Next year, perhaps I'll buy something for a Kindergartner. And a few years down the road, maybe you'll get your first tie for the man that you should have been. But I'll always buy the cow. I'll always make sure to save a "moo" for the baby I held one last time. I will never know for sure which gift fits, and that's a pain I'll carry for the rest of my life, but at least they'll be under the tree. At least they'll be wrapped and tagged just as are the gifts for your siblings. They'll be my reminder that it's ok to slow down and notice. It's ok to stop and cry for the boy who can't tell me which gift he prefers. They'll remind me that while "busy" is happening, "broken" is always right around the corner waiting to be heard.
I tried to buy you a Christmas gift. In years past it was difficult but sort of a welcome salve on an open wound. This year is different. I found what I thought was the perfect gift, but as I reached for it, something inside me broke. The busy woman fell silent and the wounded woman stepped forward. What if I only thought this was the perfect gift? I realized in that moment that I was buying a present for my two year old. But, what if my 4 year old had moved on from cows and Mickey Mouse? Shouldn't I know that? Shouldn't I at least get to see your Christmas list? Or maybe you are still two. Maybe you've remained my forever baby. Maybe I'm supposed to buy for both? I should get gifts that my clumsy toddler would have tossed around, as well as presents that my four year old would shove in his backpack to show his preschool friends. I don't know how a mother is supposed to go from knowing every breath to the uncertainty of something as simple as a shoe size.
I thought about that again when I got home and collapsed on the floor. I raced into the bathroom to see if your Sesame Street toothbrush was still hanging where I'd left it. It was there. The little cow holder still held the dust that's collected there from lack of use. I don't know what I expected to find. Maybe I thought if it had fallen on its own that it meant that you'd moved on from Elmo and "moos." Maybe I thought that seeing it there in its forever home would solidify that my baby is frozen in time. His hair still the same length, the creases in his pudgy hands still just as I'd seen them on that last day when I traced them with my finger. Or maybe, just maybe I actually expected to see you there, sitting in your spot on the sink and splashing in the water. Sometimes I absolutely believe that will happen. The rational adult is silenced and the hopeful child looks with anticipation and longing for someone who will never show. I don't know how long that lasts, or how often I'll have to feel the sting of reality, but as much as that moment cuts me, I thank that part of me that forgets for the briefest moment that the whole of my being exists in a veritable Hell on earth.
As I crawl through the next month, I hope you know that the moments that look like living do not mean that I've forgotten. I can't forget. The pain is part of my existence. It's stained on my soul. I will buy the cows. I will buy the show and tell toys. They will go to sick children whose parents still get to fight for them. Next year, perhaps I'll buy something for a Kindergartner. And a few years down the road, maybe you'll get your first tie for the man that you should have been. But I'll always buy the cow. I'll always make sure to save a "moo" for the baby I held one last time. I will never know for sure which gift fits, and that's a pain I'll carry for the rest of my life, but at least they'll be under the tree. At least they'll be wrapped and tagged just as are the gifts for your siblings. They'll be my reminder that it's ok to slow down and notice. It's ok to stop and cry for the boy who can't tell me which gift he prefers. They'll remind me that while "busy" is happening, "broken" is always right around the corner waiting to be heard.
Saturday, November 15, 2014
Phantom Picture
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...
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...
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.
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