Today I met little Stewart. Born at 33 weeks gestation, he has ambiguous genitalia, lung disease that mimics - but is not - cystic fibrosis, and a host of other medical issues. He is constantly tethered to his oxygen tank - and that isn't easy for a two year old boy. He eats through a G-tube. He spends weeks at a time in Intensive Care.
I'm going to write a story about Stewart for the local paper, and I interviewed his dad today at the diner down the street from my house. Stewart's father, John, and I talked about care and health insurance and out of pocket expenses and, of course, genetics.
It's hard for me to look at tiny little Stewart, who is so much smaller than my Clark and didn't talk at all, and not see my Drew looking back at me. As I spoke to John, my eyes kept going back to Stewart, who just wanted to walk around without his oxygen tank attached to him. With all his medical issues and delays, with all that he will face in his very uncertain future, Stewart is far healthier than my two sons would ever hope to be.
"You are so lucky," I told John. "You are just so lucky to have him."
And, of course, I told him about John and Drew. And I explained about Holland.
"You dream of Paris. You save and you plan and you wait for Paris. All you have ever wanted is to live in Paris. But there is a mistake and for some reason your plane lands in Holland, and you are stuck. And you hate it because it isn't Paris. It isn't your dream, and you planned for your dream. And after a little while, you look around and you find a few things you like about Holland. There are some blessings in Holland. There are some things you come to love about Holland. And before you know it, you are thriving in Holland. And it isn't Paris. It will never be Paris. You will always wish for Paris. But this is Holland, and you live here, and you are more than just stuck. You are thriving, doing the best you can. And you make a life, here, in Holland."
His mouth hanging open, John looked at me for a second.
"Thank you," he said. "Because that is amazing."
I can't say what it's like in Paris, but I really, really like the people I let into my own personal Holland.
Tuesday, May 24, 2016
Friday, February 19, 2016
In the middle of it all, progress
I came from a big family - three siblings, lots of cousins. But I have virtually no one outside of the family I have created here in Ohio.
Deep rifts tore apart my paternal family years ago. Determined that "the cycle ends with me," I cut them off to raise my daughter in an emotionally healthy life. That left me with my elderly grandfather. My dear grandmother died two days before John, breaking my heart and leaving me in a deep pool of grief.
My maternal family is there, but for various reasons I see them only a few times a year.
That means that so many of my childhood realities are lost to my children. No family dinners on actual holidays. No birthday parties with a special bakery cake at the supper table at the farmhouse. No catching fireflies with their cousins at twilight. No sleeping under a quilt at grandma's house. No family vacations at the beach.
The decision to leave behind your family - everything you loved about them and your life and your past - even when they've hurt you, even when you know the will hurt you again, even when you're sure they will hurt your children - is honestly the hardest thing I have ever had to do. I have never had to harden my heart and turn my back on anything so completely before. The act of emotionally "walking away" was so devastating to me.
How excited I was to get married and join up with a new brood! Invested grandparents for my children, a mother-in-law turned best friend for me. Barbecue's at our house. Family vacations. Sunday dinners. But that wasn't the reality. It couldn't be. It won't be. I've gone to therapy to try to figure out how to make some of these things work, how to swim through the emotional waters and save us all from each other.
It didn't work.
But somewhere in the middle of trying to fix broken bridges with my husband's family, something unexpected happened - my heart came back to my family, in the smallest of ways.
Every single time I go back to Pennsylvania, my grandfather asks if we can have a family dinner. I always say no. But my heart is conflicted now because the very last time I saw my grandmother, she asked for a family dinner and (being the travel agent for guilt trips) convinced me to sit through the most awkward meal of my life with them.
But I know how much that meal - all of us sitting together in the same room in silence, ignoring each other - meant to her at the very end of her life, and I don't regret it.
So the last time my Pap asked about a dinner, I said yes. We went to the farm in January and opened presents with my brother and his family, my pap and my dad, and we all had dinner together. Not the easiest meal, admittedly, but we made it work. I had a short but easy conversation with my sister-in-law. It was good.
A week later, I received a Facebook message from her. Could we come for her baby's first birthday party? I was stunned. This was very generous of her to do for us. For me.
So with some hope I look forward to having a family again. Maybe not the family I always dreamed I would have, but people. People you call when you have happy news, sad news, or when you need help. People to love my children as much as I do.
I know that I am entering my hard time of year - February through March - a time when my tears are automatic. When I have to watch what I read and what I say and how much I sleep and eat. This time - these six weeks - are fraught with all the unhealthy things my heart and my mind can do to my body and soul. The easy thing to do is to fall into it, stop eating, start sleeping all the time and disconnect from everything around me. But every time I disconnect, it's hard to re-establish.
I'm hopeful this year will be a turning point for me in so many ways.
Deep rifts tore apart my paternal family years ago. Determined that "the cycle ends with me," I cut them off to raise my daughter in an emotionally healthy life. That left me with my elderly grandfather. My dear grandmother died two days before John, breaking my heart and leaving me in a deep pool of grief.
My maternal family is there, but for various reasons I see them only a few times a year.
That means that so many of my childhood realities are lost to my children. No family dinners on actual holidays. No birthday parties with a special bakery cake at the supper table at the farmhouse. No catching fireflies with their cousins at twilight. No sleeping under a quilt at grandma's house. No family vacations at the beach.
The decision to leave behind your family - everything you loved about them and your life and your past - even when they've hurt you, even when you know the will hurt you again, even when you're sure they will hurt your children - is honestly the hardest thing I have ever had to do. I have never had to harden my heart and turn my back on anything so completely before. The act of emotionally "walking away" was so devastating to me.
How excited I was to get married and join up with a new brood! Invested grandparents for my children, a mother-in-law turned best friend for me. Barbecue's at our house. Family vacations. Sunday dinners. But that wasn't the reality. It couldn't be. It won't be. I've gone to therapy to try to figure out how to make some of these things work, how to swim through the emotional waters and save us all from each other.
It didn't work.
But somewhere in the middle of trying to fix broken bridges with my husband's family, something unexpected happened - my heart came back to my family, in the smallest of ways.
Every single time I go back to Pennsylvania, my grandfather asks if we can have a family dinner. I always say no. But my heart is conflicted now because the very last time I saw my grandmother, she asked for a family dinner and (being the travel agent for guilt trips) convinced me to sit through the most awkward meal of my life with them.
But I know how much that meal - all of us sitting together in the same room in silence, ignoring each other - meant to her at the very end of her life, and I don't regret it.
So the last time my Pap asked about a dinner, I said yes. We went to the farm in January and opened presents with my brother and his family, my pap and my dad, and we all had dinner together. Not the easiest meal, admittedly, but we made it work. I had a short but easy conversation with my sister-in-law. It was good.
A week later, I received a Facebook message from her. Could we come for her baby's first birthday party? I was stunned. This was very generous of her to do for us. For me.
So with some hope I look forward to having a family again. Maybe not the family I always dreamed I would have, but people. People you call when you have happy news, sad news, or when you need help. People to love my children as much as I do.
I know that I am entering my hard time of year - February through March - a time when my tears are automatic. When I have to watch what I read and what I say and how much I sleep and eat. This time - these six weeks - are fraught with all the unhealthy things my heart and my mind can do to my body and soul. The easy thing to do is to fall into it, stop eating, start sleeping all the time and disconnect from everything around me. But every time I disconnect, it's hard to re-establish.
I'm hopeful this year will be a turning point for me in so many ways.
Tuesday, February 2, 2016
Little pieces of comfort and grief
I think it's impossible to think about my life without thinking about my boys. What would it have been like to have those two little brothers running the show around here? Where would we have put them? This year would have been John's first year in T-ball. Drew would go to story hour at the library.
And things would be a lot different.
I only have those glimpses into the might-have-been every so often. And every so often, I also think about my future spiritual self in the context of my lost boys. When I die, will they be waiting for me? Will I see them? What will they look like - babies? Men? Little boys? Will they have been with my grandmother, waiting for me to join them? Will they know me? Will they love me?
I made it almost all the way through this article in the New York Times about the dreams of dying people. What do they mean? What do they predict?
And then there was this bit: An older woman cradled an invisible infant as she lay in bed. (Her husband told researchers it was the couple’s first child, who had been stillborn.)
I love my life. I love my husband and my job and all my children - living and dead. I want to live to see every moment we create together.
And sometimes, in the dark, in the sun, at the cemetery, in the grocery line, at a red light...I can't wait to hold my little boys again, to see their faces and run my fingers through their soft hair, to kiss their little cheeks.
The article is amazing. Read it here: http://nyti.ms/1P3IF2g
And things would be a lot different.
I only have those glimpses into the might-have-been every so often. And every so often, I also think about my future spiritual self in the context of my lost boys. When I die, will they be waiting for me? Will I see them? What will they look like - babies? Men? Little boys? Will they have been with my grandmother, waiting for me to join them? Will they know me? Will they love me?
I made it almost all the way through this article in the New York Times about the dreams of dying people. What do they mean? What do they predict?
And then there was this bit: An older woman cradled an invisible infant as she lay in bed. (Her husband told researchers it was the couple’s first child, who had been stillborn.)
I love my life. I love my husband and my job and all my children - living and dead. I want to live to see every moment we create together.
And sometimes, in the dark, in the sun, at the cemetery, in the grocery line, at a red light...I can't wait to hold my little boys again, to see their faces and run my fingers through their soft hair, to kiss their little cheeks.
The article is amazing. Read it here: http://nyti.ms/1P3IF2g
Monday, January 18, 2016
Grief is no hoax
It's a special pain, when someone denies your grief. When they assume - like the assholes they are - that they know how you feel, that they went through it along with you so they must be included in your circle.
Unless you have lost a child - unless there is an urn or a headstone or an obituary or a death certificate - you don't know shit. And that's the truth. Your loss - a parent, a spouse, a dog - is not comparable. Until you put a child in the ground - and I so sincerely hope you never do - you are not in this circle. Pretending you are is disrespectful to me and to my child. It is dismissive of my grief and the lifelong journey I will take going through my grief.
End of story.
Denying my children's lives - their personhood, their existence, their importance - is an even greater grievance. They lived. They have names and they have souls and I feel their spirits. They are my children and they are a part of me.
So when I read this article in the Washington Post about a professor who made it his personal mission to deny the lives and deaths of children killed in the Sandy Hook shooting, my heart skipped a beat. I cannot imagine my reaction - and it would be physical and immediate and hell would rain down, I promise you - if someone came to me and questioned my children in this manner.
It makes me sick - truly sick - because it is proof that we are living in the worst part of the history of our humanity. To deny these parents the right to grieve, publicly, privately, extensively - to mourn their children without political consequences - is unimaginable to me. It is unforgivable.
I know that when I can't cling to my children, I cling to their memory. I cling to my grief. It keeps me on this earth. It keeps my heart right.
Damn any person who would take that small comfort from a grieving parent.
https://www.washingtonpost.com/news/grade-point/wp/2016/01/13/the-father-of-a-boy-killed-at-sandy-hook-gets-death-threats-from-people-who-say-the-shooting-was-a-hoax/
Friday, January 15, 2016
Writing and feelings are inconvenient
It's true. Writing my thoughts here is inconvenient. My feelings - about mostly everything - are also irrationally inconvenient. I love and hate both. So there.
When you go through profound loss - especially the loss of a child or children - it's like you gain magnetism. Other people's grief finds you and sticks to you like a magnet. I gather up their stories - this child in hospice, this mother in her grief journey, a husband blogging about losing his wife to cancer. I read their blog posts and I cry for them. I know how they feel - or even more importantly - how they will feel in the coming weeks and months and years. I want to tell them that it will get better, that they will find peace or something that feels like peace. But I can't lie to these kindred souls. It won't get better. It will persist. You will be changed. You can't go back.
Increasingly, my from-afar interactions with these strangers is via Facebook, where they post snippets of their feelings frequently and more publicly that I ever could. I read about their chemo treatments and physical wounds that won't heal, their genetic woes and surgeries and complications. I read about funerals and obituaries, some obviously posted via phones. Thousands of people follow these stories along with me and like and comment and share.
Would it be easier, would I post more often if writing were shorter, my platform more conveniently available? Would more people read my words? Would my story be more impactful?
In the end, I don't care. I write a thousand blog posts in my head and never find the time to put them here. And if one, or two or none read these words, then I'm OK with that, too. I don't care if my story impacts others. I don't really care if it helps others. I don't know if people read this and cry for me. I don't care if they don't.
And I'm certainly not sure if this is another level of hell in the middle of the many levels of hell that I've already experienced. Another stop on the Grief Train. Another bag of mixed emotions - to care enough to read from another's feelings and to be so callous as to shrug off the need for others to care about mine.
So no emotional Facebook posts from me. I'll wallow in this little slice of obscurity and enjoy it, thank you very much.
When you go through profound loss - especially the loss of a child or children - it's like you gain magnetism. Other people's grief finds you and sticks to you like a magnet. I gather up their stories - this child in hospice, this mother in her grief journey, a husband blogging about losing his wife to cancer. I read their blog posts and I cry for them. I know how they feel - or even more importantly - how they will feel in the coming weeks and months and years. I want to tell them that it will get better, that they will find peace or something that feels like peace. But I can't lie to these kindred souls. It won't get better. It will persist. You will be changed. You can't go back.
Increasingly, my from-afar interactions with these strangers is via Facebook, where they post snippets of their feelings frequently and more publicly that I ever could. I read about their chemo treatments and physical wounds that won't heal, their genetic woes and surgeries and complications. I read about funerals and obituaries, some obviously posted via phones. Thousands of people follow these stories along with me and like and comment and share.
Would it be easier, would I post more often if writing were shorter, my platform more conveniently available? Would more people read my words? Would my story be more impactful?
In the end, I don't care. I write a thousand blog posts in my head and never find the time to put them here. And if one, or two or none read these words, then I'm OK with that, too. I don't care if my story impacts others. I don't really care if it helps others. I don't know if people read this and cry for me. I don't care if they don't.
And I'm certainly not sure if this is another level of hell in the middle of the many levels of hell that I've already experienced. Another stop on the Grief Train. Another bag of mixed emotions - to care enough to read from another's feelings and to be so callous as to shrug off the need for others to care about mine.
So no emotional Facebook posts from me. I'll wallow in this little slice of obscurity and enjoy it, thank you very much.
Friday, December 11, 2015
New neighbor
Drew's stone was set beside John's (properly) and I was elated. We planted daffodil bulbs all around for springtime and landscaped with fall mums and scarecrows. All looked as adorable as could be in Dead Baby Mama World, where you landscape around granite instead of fill sippy cups.
Because I work from home two days a week, I'll often swing by the cemetery for a "drive by" in the mornings. Last week there was a new neighbor right in front of our two cemetery plots - a fresh grave.
I'm a bit ashamed to admit this, but I was distraught. I'd just gotten the grave to how I wanted it. The stones were in place and I'd gotten to plant flowers - and I didn't want anything to disrupt the little bit of peace that came with that - not even a very nice dead old lady.
It reminds me that so much of my grief is still far out of my control and that I am capable of feeling the weirdest forms and wisps of sadness spurred from all sorts of weird circumstances.
I also feel the gravity of things harder than ever before. This old lady is now my eternal neighbor. Someday in the (hopefully) distant future, when I am cremated and added to the family vault, it will be behind Mary Lu.
How about that?
?
Tuesday, September 22, 2015
"ohn and 'dew"
I wear my necklace with my children's names on it everywhere I go. I have a charm for each child and each charm has their name and their spirit animal on it. John's has a footprint.
Anyway, I don't think there is a day in Clark's life that he hasn't seen me with that necklace. I never take it off. The other night he was standing on my bed and put his little arms around my neck to hug me. Then he had this very serious look on his face and he was looking at my necklace. So I showed him "Emily" "John" "Drew" and "Clark" on each charm.
"Emmy!"
"Ohn!"
"Dew!"
"Aark!"
And then he said it all again, going through all the charms.
I can't describe the feeling of hearing my miracle baby say the names of his brothers out loud. It was as if I had never heard their names before. Like a song sung in a different tune.
I swear, I swear, I swear, I will never let the world forget about my boys. Hearing Clark say their names makes me even more resolved to their memory.
Oh, my heart.
Anyway, I don't think there is a day in Clark's life that he hasn't seen me with that necklace. I never take it off. The other night he was standing on my bed and put his little arms around my neck to hug me. Then he had this very serious look on his face and he was looking at my necklace. So I showed him "Emily" "John" "Drew" and "Clark" on each charm.
"Emmy!"
"Ohn!"
"Dew!"
"Aark!"
And then he said it all again, going through all the charms.
I can't describe the feeling of hearing my miracle baby say the names of his brothers out loud. It was as if I had never heard their names before. Like a song sung in a different tune.
I swear, I swear, I swear, I will never let the world forget about my boys. Hearing Clark say their names makes me even more resolved to their memory.
Oh, my heart.
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