Monday, December 19, 2011
Happy Holiday.
Having a hard time with you being gone. I cry for at least a part of every day.Sometimes many parts, sometimes a big part. The holidays arent what they are supposed to be. I dont know if its the holidays just making it hurt a bit more, more obviously- or if it's just catching up with me in general.
I feel abandoned. I feel like I didn't realize how big of a part of my day to day life you were. Miss you so much.
I feel like the only person I have to talk to about it is my my sister- and I really don't want to make it about me. Dont want to upset her if she is having a good day. Just want the pain to go away on it's own. Nobody is going to understand. Nobody is going to make it better. Empty, crazy, abandoned and unlovable, feel like Im waiting for the other shoe to drop. Waiting to lose everything else. Feeling panicked, alone, not worth the effort.
Sunday, December 4, 2011
Please join us on Causes.com to support the United Leukodystrophy Foundation...
and...
Come to Team Brittany's page and light a candle
Friday, November 18, 2011
How do YOU feel about internet censorship by our Government?
http://americancensorship.org/infographic.html
I posted what was available to be able to explain more clearly what is extremely possible, and close to passing because I am not well enough informed myself to be able to explain any of this myself. READ the infographic. WATCH the video. If you understand the magnitude of what passing these into law could REALLY do - do YOU want to go to jail for 5 years for singing along with a pop song in a video posted on Youtube or your FB page? -then sign the letter. Don't think it will be taken that far? Ask yourself how many 12year olds have been prosecuted for downloading a song? Don't like that Censorship black bar on the top of my post? Get used to it. It will be staying for a little while. And expect to start feeling the effects of real cenorship if Americans don't shut this bullshit down. =)
Thursday, November 17, 2011
November 17 - World Prematurity Day
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| My grandson, Aiden. 34 Week Preemie <3 |
Learn more by checking out the official World Prematurity Day Facebook page or visiting MarchofDimes.com
Saturday, October 29, 2011
There's Always Next Year
While reading fellow AxD mama Dawn's CaringBridge update tonight about her beautiful daughter Hailey, I was reminded of a thought I dislike, but have with more frequency as time goes on. Hailey and her brother had flu shots recently and both have a history of having fevers after shots of any kind. She was regretting having agreed to the shot, but it was important to get due to the need to stay healthy not only in general, but because Hailey is scheduled for some pretty heavy duty surgery in one month. Being in the hospital this time of year is pretty much like jumping into a petri dish and hoping to come out clean. Now that she has gotten the vaccination, she has a better chance of not getting the flu - but the fever she has now may prevent her from trick or treating on Halloween night.
Honestly, one thing I've gained from having 3.5 million kids is the attitude of "Hey - this sucks, but get over it. There's always next year."
One of many things I've gained from having a kid with Alexander Disease is "There aren't any promises - and there ISN'T always next year".
I'm not saying that Hailey or Brittany wont have a next year, I wholeheartedly believe they both will- but I am saying that a year from now is ridiculously far away, and so much can happen in a year. For instance - a year ago right now, Brittany had recently been released from the hospital - and was about to be re-hospitalized - more than once. She was in fact about to spend a significant time in a hospital bed, we were about to be told I wouldn't be bringing her home, I was about to become "Mommy" to my ganddaughter, and my grandson had yet to be born. As shocking as it sounds, I was knee deep in trying to decide if we bring him home once he's born, or if we place him elsewhere - give him up for adoption. If the couple of months prior to a year ago today were any indication, I was to have a very ill, high need adult child to be taking care of, until she passed away, or had to be placed in more professional care.I was pregnant with Wyatt and pretty sick and on bedrest - as much as I could be with a very sick kid and 7 healthy ones in my care. I was worried about not making it through labor because of my blood pressure. A year ago, Maddy Wyse had a very, very sick little girl named Georgie who was 3 years old.
Today, I have my daughter home. Today, Maddy's daughter has been gone for 7 months.
All I'm saying is that today is a gift, and every tomorrow you are given is a miracle. That's not just true for us families with sick kids, it's true for everyone. It's just easier to see when faced with it every day. As hard as it is to remember sometimes in our busy, crazy day to day lives, it's important to keep in mind that there isn't always going to be a next year.
Someday we are all going to be looking back on last year, wishing we had been able to experience every moment over again, knowing now exactly how fleeting every minute we have truly is.
Honestly, one thing I've gained from having 3.5 million kids is the attitude of "Hey - this sucks, but get over it. There's always next year."
One of many things I've gained from having a kid with Alexander Disease is "There aren't any promises - and there ISN'T always next year".
I'm not saying that Hailey or Brittany wont have a next year, I wholeheartedly believe they both will- but I am saying that a year from now is ridiculously far away, and so much can happen in a year. For instance - a year ago right now, Brittany had recently been released from the hospital - and was about to be re-hospitalized - more than once. She was in fact about to spend a significant time in a hospital bed, we were about to be told I wouldn't be bringing her home, I was about to become "Mommy" to my ganddaughter, and my grandson had yet to be born. As shocking as it sounds, I was knee deep in trying to decide if we bring him home once he's born, or if we place him elsewhere - give him up for adoption. If the couple of months prior to a year ago today were any indication, I was to have a very ill, high need adult child to be taking care of, until she passed away, or had to be placed in more professional care.I was pregnant with Wyatt and pretty sick and on bedrest - as much as I could be with a very sick kid and 7 healthy ones in my care. I was worried about not making it through labor because of my blood pressure. A year ago, Maddy Wyse had a very, very sick little girl named Georgie who was 3 years old.
Today, I have my daughter home. Today, Maddy's daughter has been gone for 7 months.
All I'm saying is that today is a gift, and every tomorrow you are given is a miracle. That's not just true for us families with sick kids, it's true for everyone. It's just easier to see when faced with it every day. As hard as it is to remember sometimes in our busy, crazy day to day lives, it's important to keep in mind that there isn't always going to be a next year.
Someday we are all going to be looking back on last year, wishing we had been able to experience every moment over again, knowing now exactly how fleeting every minute we have truly is.
To a Child...
I just posted this on my facebook page, but thought Id post it here as well because I haven't posted in a while because a couple of people have basically ruined blogging for me - and because I wanted the opportunity to have it posted someplace that it would endure, not just slip away on my news feed.
As inspirational and sappy as this little film is - it also serves a purpose. It's easy to forget the simple, truthful message in it - daily life is busy and we, as adults, have a lot on our plates to contend with.
Nick's mom and dad, Hailey's mom and dad and Georgie's mom and dad have had that potential taken from them by Alexander Disease. Anaya's mom has been robbed by Krabbe Leukodystrophy.
If you can even grasp the enormity of this, please watch the video and remember it's message.
Saturday, September 24, 2011
No Witty Titles...Just Sad.
Reagan is about to turn two on the 26th. We are going to have her birthday "party" tomorrow. It wont really be much of a party - it feels more like a refuge.
Yesterday my step mom passed away. I have been hoping for Peace for her for what seems so long, but it has only been - what - a month? Yes, about a month since she was hospitalized then placed in hospice. Time doesn't seem to make any sense right now to be honest. Has it only been a day since she passed?? I guess there is just SO much pain involved that it seems longer. Anyway, Reagans birthday is basically going to be my kiddos and my sister and her kiddos. If daddy can stay awake, he will be there too...but I doubt it.Overnights, is a bitch to work - specially when he leaves at 3:30pm and doesn't get home til after 8am. That's okay though - daddy can have private audience with the princess on her actual big day. So basically, Reagy's party is going to be a quiet time where our kids can get back to the business of being young and carefree, and my sister and I can make arrangements for the upcoming week. The service, my family travelling to Portland, the video slideshow I'm going to put together. I'm not going to lie, I can scarcely wait for the comfort of her company. I have been prone to random, unprovoked thoughts and tears all day. I need someone who understands because she is feeling broken, too.
That being said, when she called today and told me that we should postpone until tomorrow I admit I was relieved. Mainly because my brain felt a bit fried after her passing, and the crying, and the emotion. I still need my sister here with me, but frankly my house was trashed, I hadn't made the cake or baked the macaroni....I felt like too much needed to be done, and I didnt have it in me to do it. She was having the same kind of day - so it worked out.
When I went to tell the kids that we were postponing until tomorrow, I was folding blankets.
Mid-fold, I said " Auntie and Nana are coming tomorrow, not today". It took a beat of knowing "something" wasn't right about that until I realized. Nana isn't coming. Ever.
See, it's always been "Auntie and Nana". Always. My sister's family has always been an extended family - I don't know how to think of one without the other. Auntie and Nana have been there for every single important big, and not so big event in our lives.
Right now I feel panicked and like Erica and I are out there, in the open - exposed and unprotected. Vulnerable. Who is going to take care of us now?? I feel like we are clinging to eachother in the middle of the ocean, waiting to be saved - or to drown.
Most of this probably wont even make sense to anyone. It's just how I feel...and its breaking my heart.
I want to go back to being young, untouched by this pain and while we always counted on each other SO much - we had Edye to count on, too. More than I even realized until now.
She was our shelter, our safety. She was our example of success as a woman. She was dedicated to her career. An important, amazing job she loved. More than her career she was dedicated to her family. My God did she love us. She shared our joy and pride in every one of our kids accomplishments. She was independent and strong. Kind hearted and loyal.She was proud of her family.She was an amazing role model and stellar human being.She was the one I was always afraid of letting down- and the one who never let me feel like I had. Erica is upset that while she feels the obituary she put together - my God did I just type "obituary"? - is "fine", it doesn't reflect WHO my step mom was. I Don't think it's possible to find the time in a day to tell anyone who she was. I worry I wont be able to pull it together to find the right words to speak about her at her service next week. Or if I do - I wont be able to KEEP it together to actually speak them. It's okay though, because WE know. Anyone who knew her knows.
She was up at 4am to get ready and catch the boat into Manhattan.She worked all day, never making it home before evening. She was bowling league - or Bocce. She was cruises to Alaska. She was "Coffee with Frannie". She was good NY pizza - or Chinese. She was "Are you hungry? What can I make you?" the minute you showed up at her door.She was colorful - she was outrageous. She was pretty clothes full of glamour and somehow managed to be an endless amount of terry cloth and flip flops and goofy sun hats, too. She was manis and pedis on Saturdays instead of sleeping in. She was coffee and fresh bagels while sitting in our PJs, reading the "gossip papers" on Sundays.She was "Have you read...?" She was "Nana is making you a blanket". She was trips to the Bronx Zoo, and swimming and Peak's Island. She was bags and bags of clothes and toys and books for her grandbabies. She was their playmate - over and over and over again reading the stories or playing with the toys she brought. She was the audience to fashion shows of the wardrobes she brought over for the girls. She was "let's sit and color". She was an endless supply of sharks and dinosaurs when Kaylee was a tomboy and obsessed with such things. She was the same, years later when her grandson Matthew came along and loved the same things. She was the dead end reached by anyone who wanted to hurt any of us in any way. She was never too tired, she was never too bored for her grandkids. She never had an unkind word for them. She was SO proud. She was THAT Nana.
What I wouldn't give for a picture of her, surrounded by us and her grandchildren - and two great grandchildren. Why hadnt we done that?
I am so sad and hurt that over the past couple of years she had so much of HER stolen from her by the dementia and neurological issues. Because of this, while my "middle" kiddos were able to spend time with her at my sisters house during school breaks, they do not know her like my older kids will remember her as. Even my niece and nephew who always lived with her wont remember her like that. My youngest babies wont ever know her that way.They wont ever see her as I see her. Or long for her voice like I do. My sister hopes to imprint her in their minds by speaking of her often and remembering the times before she was sick. She wants them to really listen when people speak of her. Maybe then, after hearing it enough, they will remember her that way. Not as sick Nana. I want my older kids to hold onto their memories of the real Nana - keep her alive in their hearts for as long as possible. Hopefully forever.
I want our kids to have their Nana.
I want my Mom.
I take comfort in knowing that when the time comes and Brittany's health declines - and the end comes, Nana will be there waiting.
My baby wont be alone because her Nana will be with her to be her shelter.
While the post I published last month after visiting to say goodbye, when we worried she was on death's door, was Sick Nana- This picture is Our Nana. It was taken at my sister's wedding - and right now, I don't think I've ever seen anything more beautiful.
She was a magnificent person. My broken heart is so filled with pride to be her daughter.
Yesterday my step mom passed away. I have been hoping for Peace for her for what seems so long, but it has only been - what - a month? Yes, about a month since she was hospitalized then placed in hospice. Time doesn't seem to make any sense right now to be honest. Has it only been a day since she passed?? I guess there is just SO much pain involved that it seems longer. Anyway, Reagans birthday is basically going to be my kiddos and my sister and her kiddos. If daddy can stay awake, he will be there too...but I doubt it.Overnights, is a bitch to work - specially when he leaves at 3:30pm and doesn't get home til after 8am. That's okay though - daddy can have private audience with the princess on her actual big day. So basically, Reagy's party is going to be a quiet time where our kids can get back to the business of being young and carefree, and my sister and I can make arrangements for the upcoming week. The service, my family travelling to Portland, the video slideshow I'm going to put together. I'm not going to lie, I can scarcely wait for the comfort of her company. I have been prone to random, unprovoked thoughts and tears all day. I need someone who understands because she is feeling broken, too.
That being said, when she called today and told me that we should postpone until tomorrow I admit I was relieved. Mainly because my brain felt a bit fried after her passing, and the crying, and the emotion. I still need my sister here with me, but frankly my house was trashed, I hadn't made the cake or baked the macaroni....I felt like too much needed to be done, and I didnt have it in me to do it. She was having the same kind of day - so it worked out.
When I went to tell the kids that we were postponing until tomorrow, I was folding blankets.
Mid-fold, I said " Auntie and Nana are coming tomorrow, not today". It took a beat of knowing "something" wasn't right about that until I realized. Nana isn't coming. Ever.
See, it's always been "Auntie and Nana". Always. My sister's family has always been an extended family - I don't know how to think of one without the other. Auntie and Nana have been there for every single important big, and not so big event in our lives.
Right now I feel panicked and like Erica and I are out there, in the open - exposed and unprotected. Vulnerable. Who is going to take care of us now?? I feel like we are clinging to eachother in the middle of the ocean, waiting to be saved - or to drown.
Most of this probably wont even make sense to anyone. It's just how I feel...and its breaking my heart.
I want to go back to being young, untouched by this pain and while we always counted on each other SO much - we had Edye to count on, too. More than I even realized until now.
She was our shelter, our safety. She was our example of success as a woman. She was dedicated to her career. An important, amazing job she loved. More than her career she was dedicated to her family. My God did she love us. She shared our joy and pride in every one of our kids accomplishments. She was independent and strong. Kind hearted and loyal.She was proud of her family.She was an amazing role model and stellar human being.She was the one I was always afraid of letting down- and the one who never let me feel like I had. Erica is upset that while she feels the obituary she put together - my God did I just type "obituary"? - is "fine", it doesn't reflect WHO my step mom was. I Don't think it's possible to find the time in a day to tell anyone who she was. I worry I wont be able to pull it together to find the right words to speak about her at her service next week. Or if I do - I wont be able to KEEP it together to actually speak them. It's okay though, because WE know. Anyone who knew her knows.
She was up at 4am to get ready and catch the boat into Manhattan.She worked all day, never making it home before evening. She was bowling league - or Bocce. She was cruises to Alaska. She was "Coffee with Frannie". She was good NY pizza - or Chinese. She was "Are you hungry? What can I make you?" the minute you showed up at her door.She was colorful - she was outrageous. She was pretty clothes full of glamour and somehow managed to be an endless amount of terry cloth and flip flops and goofy sun hats, too. She was manis and pedis on Saturdays instead of sleeping in. She was coffee and fresh bagels while sitting in our PJs, reading the "gossip papers" on Sundays.She was "Have you read...?" She was "Nana is making you a blanket". She was trips to the Bronx Zoo, and swimming and Peak's Island. She was bags and bags of clothes and toys and books for her grandbabies. She was their playmate - over and over and over again reading the stories or playing with the toys she brought. She was the audience to fashion shows of the wardrobes she brought over for the girls. She was "let's sit and color". She was an endless supply of sharks and dinosaurs when Kaylee was a tomboy and obsessed with such things. She was the same, years later when her grandson Matthew came along and loved the same things. She was the dead end reached by anyone who wanted to hurt any of us in any way. She was never too tired, she was never too bored for her grandkids. She never had an unkind word for them. She was SO proud. She was THAT Nana.
What I wouldn't give for a picture of her, surrounded by us and her grandchildren - and two great grandchildren. Why hadnt we done that?
I am so sad and hurt that over the past couple of years she had so much of HER stolen from her by the dementia and neurological issues. Because of this, while my "middle" kiddos were able to spend time with her at my sisters house during school breaks, they do not know her like my older kids will remember her as. Even my niece and nephew who always lived with her wont remember her like that. My youngest babies wont ever know her that way.They wont ever see her as I see her. Or long for her voice like I do. My sister hopes to imprint her in their minds by speaking of her often and remembering the times before she was sick. She wants them to really listen when people speak of her. Maybe then, after hearing it enough, they will remember her that way. Not as sick Nana. I want my older kids to hold onto their memories of the real Nana - keep her alive in their hearts for as long as possible. Hopefully forever.
I want our kids to have their Nana.
I want my Mom.
I take comfort in knowing that when the time comes and Brittany's health declines - and the end comes, Nana will be there waiting.
My baby wont be alone because her Nana will be with her to be her shelter.
While the post I published last month after visiting to say goodbye, when we worried she was on death's door, was Sick Nana- This picture is Our Nana. It was taken at my sister's wedding - and right now, I don't think I've ever seen anything more beautiful.
Edythe J. Childs
September 23, 2011
Portland
September 23, 2011
Portland
Edythe J. Childs, 64, of Portland, Maine passed away September 23, 2011 in Westbrook, Maine.
Edythe was born in Concord, New Hampshire, a daughter of Leighton and Louisa Harrington Childs. She graduated from Pembroke Academy and she was also a graduate of Franklin Pierce College in New Hampshire. Edythe participated in the Volunteers In Service To America program in North Carolina.
Edythe was very proud of her nearly 30 year career at American International Group in New York. During that time she accomplished much professionally and made many endearing friendships, too many to list but all beloved. She retired in 2008 as Director of Human Resources and Payroll, her goal being to spend more time with her family.
Her hobbies included painting, reading, crocheting, and spoiling children and grandchildren.
Edythe is survived by two daughters, Erica B. Sarapas and her husband Matt of Portland, Maine and Angela Laroche of Somersworth, New Hampshire. She is also survived by two brothers, Frank L. Childs of New Boston, New Hampshire and John Childs of Exeter, New Hampshire, two sisters, Frances Charron of Hillsboro, New Hampshire and Maryellen Plante of Pittsfield, New Hampshire, and Aunt MaryJane French and cousin Jack Callahan of Durham, New Hampshire. Most importantly, she is survived by ten grandchildren, all of whom drew a smile from her until her final moments; Matthew and Sophia Sarapas of Portland, Maine, Brittany, Kaylee, Rylie, Emily, Hallie and Jacob Laroche, Reagan and Wyatt Powers and two great grandchildren, Isabella and Aiden Laroche of Somersworth, New Hampshire.
A memorial service will be held 11 A.M., Saturday, October 1, 2011 at the Hobbs Funeral Home, 230 Cottage Road, South Portland, Maine.
Edythe was born in Concord, New Hampshire, a daughter of Leighton and Louisa Harrington Childs. She graduated from Pembroke Academy and she was also a graduate of Franklin Pierce College in New Hampshire. Edythe participated in the Volunteers In Service To America program in North Carolina.
Edythe was very proud of her nearly 30 year career at American International Group in New York. During that time she accomplished much professionally and made many endearing friendships, too many to list but all beloved. She retired in 2008 as Director of Human Resources and Payroll, her goal being to spend more time with her family.
Her hobbies included painting, reading, crocheting, and spoiling children and grandchildren.
Edythe is survived by two daughters, Erica B. Sarapas and her husband Matt of Portland, Maine and Angela Laroche of Somersworth, New Hampshire. She is also survived by two brothers, Frank L. Childs of New Boston, New Hampshire and John Childs of Exeter, New Hampshire, two sisters, Frances Charron of Hillsboro, New Hampshire and Maryellen Plante of Pittsfield, New Hampshire, and Aunt MaryJane French and cousin Jack Callahan of Durham, New Hampshire. Most importantly, she is survived by ten grandchildren, all of whom drew a smile from her until her final moments; Matthew and Sophia Sarapas of Portland, Maine, Brittany, Kaylee, Rylie, Emily, Hallie and Jacob Laroche, Reagan and Wyatt Powers and two great grandchildren, Isabella and Aiden Laroche of Somersworth, New Hampshire.
A memorial service will be held 11 A.M., Saturday, October 1, 2011 at the Hobbs Funeral Home, 230 Cottage Road, South Portland, Maine.
She was a magnificent person. My broken heart is so filled with pride to be her daughter.
Tuesday, September 20, 2011
My birthday wish
On November 21st I have the distinct pleasure ::::eyeroll:::: of turning 39. In lieu of gifts or cards I was hoping that the people closest ( and anyone interested in supporting this cause in my daughter's honor) to me would be willing to make a small ( or large! ) donation on Causes.com's Alexander Disease page to the Stennis Foundation.
I made this online Wish event in honor of my daughter Brittany who suffers from AxD and a good friend's daughter who passed away at age three in March of this year after suffering horribly from AxD. I have met so many AMAZING families in our effort to gain emotional support and raise awareness. This is my tribute to ALL of them. Please join the Cause - do a few short activities to raise a bit of money for the cause - and donate if you are able.
I made this online Wish event in honor of my daughter Brittany who suffers from AxD and a good friend's daughter who passed away at age three in March of this year after suffering horribly from AxD. I have met so many AMAZING families in our effort to gain emotional support and raise awareness. This is my tribute to ALL of them. Please join the Cause - do a few short activities to raise a bit of money for the cause - and donate if you are able.
Friday, September 9, 2011
I am finally getting around to posting =)
Sadly it will be a short one until tonight or possibly tomorrow night.
Please check out the new blog for Team Brittany!
Sadly it will be a short one until tonight or possibly tomorrow night.
Please check out the new blog for Team Brittany!
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| Also check out THIS! |
Sunday, August 21, 2011
Lots of people have been asking, so here is what I am able to share.
It has been a difficult couple of days...and if that is true for me, I know that that is probably the biggest understatement I could make about what it has been like for my sister. Before I go any further, I'd like to qualify why I felt it necessary to take and even share pictures of the time I spent with my sister and step mom.
See, I have "inherited" an insatiable need for documenting family events, gatherings and yeap, plain old daily life. I have SO many pictures of my children for the simple reason that "Nana" has always been the family historian. After spending the day with my step mom in the nursing home, Kaylee and I went back to my sister's house and had dinner, then a sleepover.I just wasn't ready to leave my sister. Frankly, I wasn't ready this morning either - but Zac had something going on in Hillsborough with his family that I wanted to lend whatever small support I could to him during. Last night after we ate, I wandered around my sister's house and spent most of my time having my eye drawn to things that remind me of Nana (I'm not really digging the phrase "My stepmom" - I've called her Nana since my kids were born, and since my oldest is about to turn 21, it is a hard habit to break. ). The two biggest things that I couldn't walk past were her book collection and the family photos. Bookshelves, frames, albums and pictures on the fridge. The four pictures I have included here are solid reminders of the four moments of peace I felt yeserday.
She is a huge reader, and it is something we all share. Nana, my sister, myself and our girls as well as our boys. Her books are something that she treasured - and shared generously with me. Truth be told, I took home a stack - and in the stack are ones I haven't read -as well as the first book she ever recommended to me. I've read my own copy many times. But her hardcover, large print edition is something I just want to have in my hands for a little while. I slept with it last night. She hasn't been able to sit and read for almost two years now.
The family photos are abundant. They chronicle every visit, every occasion, and many many days of no consequence. There were many of her with people she loved - but many many more that didn't include her in them at all. Yet, they all had the touch of Nana's hand in their composition. More often than not, she is the one behind the lens, capturing the memory. I am so thankful she knew to record our lives - and instill a love for doing so in my sister and I. I know we will both carry on, capturing the moments of our lives, both large and small. I know I will be forever sad that Nana is not receiving copies of the moments in her kids lives anymore. They were something she treasured - and displayed with pride.
Yesterday arriving at the nursing home, I was taken aback by the deterioration in Nana that has occurred since a month ago, when I saw her last. My sister took some of my kiddos on vacation with her family for the week of Fourth of July,and when I saw her then, she was not in the greatest shape - but at this point she has deteriorated significantly since then. She is agitated and unable to rest. The more stimulated she is, the less likely it is that she sits for more than 2 minutes....and usually less. She is not lucid and quite unaware of most of what goes on around her. I suspected from the look in her eye when she saw me, that she wasn't recognizing me. My cousin Andy arriving with his beautiful daughter Emma confirmed I was right. She didn't recognize him,either - but let me tell you, there was no denying once she did realize who she was looking at.
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| "I know you! Hey! Can you come sit with me?". Andy didn't need to be asked twice =) |
And later on....
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| Nana: "You always took good care of me" Andy: "No, Aunt Edye...You took good care of me." I still want to cry just thinking about it. He's right, she did. And he is one of the few ( two maybe? ) cousins that came to see her. His brother, Rob was there the day before. If their brother Jeremy wasn't killed in the line of duty as an Epsom officer 14 years ago, I am certain he would be there, too. |
I wish the rest of my kids could handle the nursing home...or the state Nana is in. I want more pictures like this:
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| Kaylee and her Nan |
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| My sister and my stepmom - I really cannot imagine one without the other. I love my sister SO much. I wish I could fix this. |
Ultimately, it didn't really matter because all I had was a 100 dollar bill - and my suggestion that Dover DD accept that along with my ID so they could record who gave it to them, was refused. The fact that they were messing with Nana's munchkins and bringing on my tears earned the drive thru lady my eternal disgust and I was sure to yell "THANKS! THANKS FOR NOTHING!" while driving away - a one fingered salute out the window.
Did I SAY I was dealing well? Didn't think so. Hope you can at least appreciate my honesty.
I was unable to prevent random tears throughout the entire visit. I didn't sob like a ninny - while she was in the room at least - but the tears were impossible to prevent. Nan's inappropriate behavior spawned them. Watching Kaylee talking to her ... watching Andy with her ...watching Emma, who is 13, unable to prevent her own tears....memories, thoughts and many many "what if's" spawned them. Watching her sit down with a very little old lady in a wheelchair in the diningroom and hold her hand across the table, telling her how beautiful she is spawned them. I had a nearly uncontrollable desire to curl up in her lap. I wanted to hug her the entire visit, but didn't want to agitate her further. When we left I was unable to control it any more - and just wrapped my arms around her and told her I loved her so much. She placed her hand on my arm, which was around her neck as I bent down to hug her - and she leaned into my hug. It was so hard to let go.
My sister points out that the one picture we are missing is one of Nana and I. I wanted to, but couldn't do it. I don't want to see the pain I am feeling. If I go back next week, if there is time left to, she may possibly be so drugged from the pain patch that I will have lost my chance - and that weighs on my mind.
We don't know what is going to happen and when. I don't know for sure when I will be back in Portland. I am going to try for Tuesday and Wednesday. All we know for sure is my transportation issue is a fucking bitch, and that Hospice has stopped antibiotics and placed a pain patch ( or at least hopefully they have by today) - she is in just so much pain, and the oral meds aren't enough - and she isn't reliable about being cooperative about taking them. OR staying off her feet. Her leg is twice the size - at least- as the other, and the skin looks hot and infected.
The only other thing I know is this:
Regardless of what my stepmom's family think - especially the ones who have not been around to see her for the last two years as she declines - she would never forgive us if we let this continue. Contrary to what I was afraid of, after seeing her yesterday, I am 150% at peace, knowing she wont be in pain, or confused, or living where she is , and how she is for much longer. What is going on is the epitomy of what she was afraid of ever happening to her as she aged. Her doctors agree that what has been chosen, is the right thing to do for Edye.
My aunt has said "It's a leg wound. why are we just giving up on her?".
Nothing could be further from the truth in any of that question.
It's not "We" or "Us" giving up on her.
It's not the leg wound.
It's my sister honoring my stepmom's desire for dignity. Truth be told, if she could ever have known that my sister even let her be taken to the nursing home and allowed to live the way she is right now- the lack of lucidity...the confusion...the inability to care for herself...the inability to recognize her family or even make sense 98% of the time, or communicate her wants , when she even HAS any wants - she would have never forgiven us. The leg wound is irrelevant. It's never going to get better enough to unmedicate her, but even if it did, my stepmom is gone. The times when she "comes back" enough to be recognizable are few and far between. Seeing what little realization she has through the haze and confusion is more than I can bear to see in her eyes. All there is sadness and pain.
My aunt telling my sister that having Nan in the nursing home and hospice attending to her, is "at least easier on YOU now" is unfathomable to me. Unforgivable. Where were YOU for two years? What on Earth do you know about the degree of difficulty it has been to care for her when she doesn't want the care? What do you know about the "ease" that lies in leaving her in a place she never would have been able to accept living - knowing she is alone and that today may have been the last day she shows some recognition? How easy is it knowing your mother is suffering?
Maybe she should have been a fly on the wall last night after dinner as Erica and I sat overwhelmed, on the floor of my stepmom's room.
Then, she could have appreciated how "Easy" it was on my sister as we sat there, choosing what her mom would have wanted to wear for her own funeral.
Not only would she never have forgiven us for making her continue like this indefinitely, Edye never would have forgiven some of you for being selfish enough to place blame with her daughter so you wouldn't have to feel the guilt of not being there to offer care and support, while her only child shows the generosity and compassion of letting go.
Why do you THINK she chose my sister for these decisions, so many years ago??
I cannot believe some of you - her family - didn't know her well enough to have seen her with the amazing dignity and composure she had - and not know that was the only way she wanted to live.
God save you, if you so much as make my sister flinch in the future.
She may walk away from your accusations and carelessness, but I will be damned if I will.
I can't do much, but I wont let your selfishness and lack of kindness touch her.
She is already quite destroyed.
Thursday, August 18, 2011
Anniversary
There are things that we don't want to happen but have to accept, things we don't want to know but have to learn, and people we can't live without but have to let go. ~Author Unknown
Today is the 16th anniversary of the day Zacs dad passed away in a car accident. His family is a wonderful one, and it hurts to see them all - Zac included -suffering over his loss. He must have been an amazing man, because his family loves and talk about him daily. They miss him terribly and I am sad that Zac thinks about the fact that his dad never got to see him grow into a man. Never got to meet his grandchildren. I wish I had known him, because someone who all of these people I love simply adored him - he had to have been amazing. Zac was only 6 when he lost him, and I know how much his dads presence has been missed in his life. Looking at the few pictures I've seen, it's easy to see why his whole family sees David in Zac. I can easily see David in Wyatt, as a matter of fact. With all that's going on in our house right now- all the loss and potential and loss already gone by...it's hard to even know what the ache in my chest is even for at any given time. I don't have to have known Zac's dad to know I would have loved him, and I mourn his family's loss of him.
Rest Peacefully - I wish you could see the man your son has become, and the man he will help your grandson to be. You would be so proud.
Today is the 16th anniversary of the day Zacs dad passed away in a car accident. His family is a wonderful one, and it hurts to see them all - Zac included -suffering over his loss. He must have been an amazing man, because his family loves and talk about him daily. They miss him terribly and I am sad that Zac thinks about the fact that his dad never got to see him grow into a man. Never got to meet his grandchildren. I wish I had known him, because someone who all of these people I love simply adored him - he had to have been amazing. Zac was only 6 when he lost him, and I know how much his dads presence has been missed in his life. Looking at the few pictures I've seen, it's easy to see why his whole family sees David in Zac. I can easily see David in Wyatt, as a matter of fact. With all that's going on in our house right now- all the loss and potential and loss already gone by...it's hard to even know what the ache in my chest is even for at any given time. I don't have to have known Zac's dad to know I would have loved him, and I mourn his family's loss of him.
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| I kidnapped this picture off Zac's Aunt Cheryl's Facebook today...Zac's mom and dad are on the left. His aunts Cheryl and Marcie are the crazy ladies in the middle =) |
Not ready.
The term "stepmom" never really spoke the volumes to me that my stepmother, Edye has meant to me in my life. My mother and father separated when I was 2 and divorced 2 years later, because he was an alcoholic. My father married my stepmom shortly after the divorce. Opposed to what you would THINK would happen in this situation, my mom and stepmom hit it off and were never in the type of resentful, traditionally thought of ex/current wife relationship. My stepmom was kind to me, loved me and took me in as her own, and that was good enough for my mother. I'm sure my stepmom knew my mother didnt want my dad back, and she shared her child - so maybe that was enough for her. Whatever reasons were behind it, when my father married my stepmom, I gained another mother. Edye and my dad had my sister Erica, who has literally always been a HUGE part of my heart, shortly after they married. Sometime in all of this, my mom had a very traumatic experience and had a breakdown. She knew she would be unable to care for me during all of this, and Edye and my father agreed to take me in. I was in their care for over a year. My father was abusive - but my sister and stepmom were there and were my entire life at that point.I eventually went home to my mom - and saw my father and stepmom regularly.
Eventually, they divorced.
I rarely saw my father after this...and when I did, it was when he managed to sober up long enough to arrange a visit.
My stepmother and sister, on the other hand were a permanent fixture in my life. We spent summers together, back and forth between our mom's homes...and I was just so lucky to have two moms.
Edye never, not once, treated me like I was less than her daughter.
She went back to school and got her degree. She worked her ass off to take care of my sister. When my sister was in first grade she spent the school year with my mom and I, while Edye moved to New Jersey and secured her career and a home for them. Then, my sister went home to New Jersey with her. My stepmom was a bigwig in the human resources dept of AIG. Yes, THAT AIG. The part of my summers were spent with her were heaven. She had built an amazing career, and had plenty of money - and took my sister and I to do everything. The best thing, was she would take us into Manhattan and take us to work with her. Her secretary was our secretary. We took untold amounts of office supplies hostage and we ran the office with an iron fist. It was amazing.
When I was 17 and got pregnant I was afraid to tell her. I cannot tell you how much I admired that woman and her opinion of me was just that important to me. I have no idea to this day what she thought - because she never had an unkind, unsupportive word for me. My daughter is her grand daughter. The minute she was born, she was just as accepted, loved and as fortunate as I was to have her in my life. When her sister Kaylee came along 4 years later, it was within a couple weeks of Edye's birthday and I dont know if that's why - but they have an amazing bond. When I got married, Edye bought my cake and at the last minute decided I needed a limo, among other things. She and my sister drove from Jersey to here for literally every single birthday for 6 kids, every year. It was the highlight of our celebration.
When I left my husband for the first time, after a particularly violent fight, she drove from New Jersey within hours in a blizzard, and took me and four kids to her home. Three months later, when I went back to NH - and Mark- she didn't approve, but she didn't stop me. I always felt she knew I was going to leave, but I had to do it in my own time.She saved me in many many different ways over the next decade.The least of all being the many ways she supported me when I finally left for good seven years ago. She has been both mine and my sisters rock. Anyone who knows her, knows that she is the strongest, most independent, amazing example of single motherhood - and woman you could ask for.
About 4 years ago, my sister and brother in law bought a gorgeous farmhouse in Portland, Maine - a mere hour away from me. Three years ago next week, my sister gave birth to her second child, my gorgeous, talented, fantastic niece, Sofia. I also have an amazing nephew who is a couple months older than Jake, named Matthew. Our kids flipping ADORE each other. When my sister had Fia, Edye came to Maine to help out. She had left work because of health issues...and stayed with my sister's family. She became my niece and nephews primary caregiver. My sister, a talented and amazing registered nurse , became the school nurse to a High School close to their home.
One day two years ago, my sister came home and my stepmom was disoriented, confused and my niece was covered in poop. Upon closer inspection, depsite my stepmoms claims that the diaper was defective, my sister discovered Fia wasn't wearing one.There were "things" that happened before this - but this day was the beginning to what was to become the decline of my stepmom's health. My sister hasn't gone back to work, and has instead been home taking care of my stepmom and Sofia. Over the last two years there have been hospital stays, surgeries, medications and diagnosis. One of which is Early Dementia.
I know most people have had some sort of "run in" with this type of illness - so because of that, and to spare my stepmom her dignity, I will not elaborate. It is suffice to say that my sister has had her hands full, and that I have had my head buried in the sand. I am sorry for that. So very very sorry.
When Brittany was ill last year and unable to care for herself and was basically out of her mind, my sister came to the rescue repeatedly, in many different ways. From coming to get my granddaughter and my younger kids and taking them for a few days while I got Brit hospitalized against her will for ten days - to going to visit Brit a month later when she was again hospitalized but at Maine Med - every day, for two months, in my place. I was 7 months pregnant and very ill, on bed rest and my daughter was an hour away, very ill and alone. My sister was there every single day visiting, caring for and advocating for my daughter ( in fact, my sister saved my daughters life in the hospital when SHE realized Brit had Magnesium toxicity and the nurses there chalked her inability to breathe or walk or function on "Brittany being Brittany". It wasnt pretty after that.My sister is not only a nasty bitch when necessary- but the epitomy of the phrase "mama bear") - all the while dragging my confused, sick stepmom along.
It's pretty easy to see the apple didnt fall far from the "amazing tree", right?
Things have recently, over the past year, gotten worse with my stepmom. She is diabetic and refuses to stay compliant with meds or diet. She has issues because of it. She has had infections and lots of things all dementia patients probably go through. Again, sparing my stepmoms dignity - I am just simply going to say it's been bad. Real bad.
Two weeks ago Edye needed to be hospitalized due to cellulitus in her leg. Blood sugar was up over 500. At home she was refusing to be med compliant until she was too sick to fight. By that time it was simply too late to continue at home despite being able to get meds into her. Her wound was horrible...the surrounding tissue various shade of black and blue spreading up her entire leg. Hospitalization and IV antibiotics helped stabilize - and she was moved to rehab. Now things have again gotten worse - and this time even if the antibiotics they cant get her to take help, she would always need to be on them because of the severity of the wound and her blood sugar.
Let me back up a bit. This strong, amazing woman has always said to us that she wouldn't ever under any circumstances want to live any way but able to care for herself. In fact, it has always been a "joke" with her that should she appear to be having a heart attack or stroke, my brother in law was to chuck her own the stairs so she wouldn't be on life support-become a burden-become less than what she always was:Strong and amazing. The joke is really on us, because Im sure you can see - she really wasn't joking.My sister has been her trusted go to person with medical directives and living will related things since she has been legally old enough. She - we all know- exactly how Edye would NOT want to live. Cut to the last two years and we have a proud,strong woman, AMAZING woman who is now confused and constantly upset that she cant get the words from her brain to her mouth. She cant use the right names, she cant get an entire, coherant sentence out and be understood. She cant dress herself. She cant bathe herself. She has no idea whats going on at any given time. She is just simply trapped inside her own head. She has lost the things she loved most - her independence and her connection to family. Her connection to her so well loved grandkids. She has no meaningful quality of life. Sometimes she knows all this. And it hurts so so much to watch her hurt.
Back to today.
The doctors sat my sister, the nurse...and the daughter.... down and discussed things with her and really made sure she understood that continuing with the process of treating her will prolong her life...but that she has not only expressed that she doesnt want the meds, but that her quality of life will not improve- and as we already knew, it would decline. So after much more suffering, she will eventually have the same outcome.
So, tomorrow my stepmom...my rock...is going to hospice. She will cease antibiotics. Her infection will increase, as will her blood sugar because diabetes is a fucking bitch. We hope to slip a pain patch on her to keep her comfortable. Due to the infection messing with the diabetes, she will eventually slip into a coma - and as my sister is holding up her end of my stepmoms bargain, she will not have any heroic measures and will have a DNR order.
My sister is doing as asked and is expected of her - and chucking her down the stairs.
I talked to her last night, and we both knew this was coming. I've been crying and laughing with my sister about everything from Edye's beloved mink coats, things we used to do as kids, how we will pull through and deal with my stepmoms belongings to how we really need my stepmom's secretary, John Paul to come help make the arrangements. Things no one but she and I would understand. I've been trying to decide how to include my kids in this - and have only been able to let my 17 year old know that her beloved Nan is dying and that we hope she will come say goodbye. My other kids are too little - and my oldest is just not as in her own head as she was when younger. I've been imagining what it is going to be like to see her, knowing she wont be here anymore. What it is going to be like when she's gone.
The thing that I can't shake, and what I said to my sister last night:
"Who is going to take care of us??"
But she hasn't been able to take care of us for a couple of years now. It makes no sense, but is the thing my hurting heart keeps saying.
I don't know how to do this. I don't want to do this. I am just not ready.I don't know how to be strong for my sister. I dont want to let her down.
I've never felt so much pain, but been so entirely numb at the same time.
There's stuff I need her to know
I want her chicken cutlets and spaghetti. Or roast. Or chicken soup. Or the peanut butter toast cut into strips for little hands. Or the dark gingerale for sick tummies.
Does she know that one of Brits favorite things to do was make her Nan's chicken cutlets, after she taught her when she was 14?? Brit can't make them anymore either.I didn't realize that until now. Someday Brit is going to be in a similar boat - and now Nana wont see that. For that, I am grateful.
I want Sunday mornings with coffee and NY bagels delivered to us with the weekly gossip rags. I want to go get a manicure. I want to hear her laugh and say "Hey Bugs". I want to see my babies on her knee. I want her to be at my wedding, and know Im doing it for the right reasons this time. I want my little ones to know her. I want her to hug me in that too tight hug that just made all the bad stuff go away.I want days in the sun on Peak's. And her goofy hats. And the smell of tanning oil. I want happy hour on the deck where all the adults are together laughing and having snacks - and we get shirley temples, out of the way- but listening while we play Uno. I want afternoons in her waterbed during the summer, while we watch scary or John Hughes movies while she was at work. I want the Bronx Zoo and trips to her office. I want to call her at work and have her assistant put me right through, because no matter how busy she was, she was available.I want so so many things and so much more time to have them in.
I want to tell her how much I admired her. How many times I made decisions based on what she would do - or what she would think of me.I want to thank her for my sister. I want to thank her for being my mother.
I want to remember the last time I told her I loved her.
I want to know I told her just how MUCH I loved her, when she could still understand...but I know I didn't.
I want to be ready for this, but I'm just not.
I want my mom.
I love you.
Eventually, they divorced.
I rarely saw my father after this...and when I did, it was when he managed to sober up long enough to arrange a visit.
My stepmother and sister, on the other hand were a permanent fixture in my life. We spent summers together, back and forth between our mom's homes...and I was just so lucky to have two moms.
Edye never, not once, treated me like I was less than her daughter.
She went back to school and got her degree. She worked her ass off to take care of my sister. When my sister was in first grade she spent the school year with my mom and I, while Edye moved to New Jersey and secured her career and a home for them. Then, my sister went home to New Jersey with her. My stepmom was a bigwig in the human resources dept of AIG. Yes, THAT AIG. The part of my summers were spent with her were heaven. She had built an amazing career, and had plenty of money - and took my sister and I to do everything. The best thing, was she would take us into Manhattan and take us to work with her. Her secretary was our secretary. We took untold amounts of office supplies hostage and we ran the office with an iron fist. It was amazing.
When I was 17 and got pregnant I was afraid to tell her. I cannot tell you how much I admired that woman and her opinion of me was just that important to me. I have no idea to this day what she thought - because she never had an unkind, unsupportive word for me. My daughter is her grand daughter. The minute she was born, she was just as accepted, loved and as fortunate as I was to have her in my life. When her sister Kaylee came along 4 years later, it was within a couple weeks of Edye's birthday and I dont know if that's why - but they have an amazing bond. When I got married, Edye bought my cake and at the last minute decided I needed a limo, among other things. She and my sister drove from Jersey to here for literally every single birthday for 6 kids, every year. It was the highlight of our celebration.
When I left my husband for the first time, after a particularly violent fight, she drove from New Jersey within hours in a blizzard, and took me and four kids to her home. Three months later, when I went back to NH - and Mark- she didn't approve, but she didn't stop me. I always felt she knew I was going to leave, but I had to do it in my own time.She saved me in many many different ways over the next decade.The least of all being the many ways she supported me when I finally left for good seven years ago. She has been both mine and my sisters rock. Anyone who knows her, knows that she is the strongest, most independent, amazing example of single motherhood - and woman you could ask for.
About 4 years ago, my sister and brother in law bought a gorgeous farmhouse in Portland, Maine - a mere hour away from me. Three years ago next week, my sister gave birth to her second child, my gorgeous, talented, fantastic niece, Sofia. I also have an amazing nephew who is a couple months older than Jake, named Matthew. Our kids flipping ADORE each other. When my sister had Fia, Edye came to Maine to help out. She had left work because of health issues...and stayed with my sister's family. She became my niece and nephews primary caregiver. My sister, a talented and amazing registered nurse , became the school nurse to a High School close to their home.
One day two years ago, my sister came home and my stepmom was disoriented, confused and my niece was covered in poop. Upon closer inspection, depsite my stepmoms claims that the diaper was defective, my sister discovered Fia wasn't wearing one.There were "things" that happened before this - but this day was the beginning to what was to become the decline of my stepmom's health. My sister hasn't gone back to work, and has instead been home taking care of my stepmom and Sofia. Over the last two years there have been hospital stays, surgeries, medications and diagnosis. One of which is Early Dementia.
I know most people have had some sort of "run in" with this type of illness - so because of that, and to spare my stepmom her dignity, I will not elaborate. It is suffice to say that my sister has had her hands full, and that I have had my head buried in the sand. I am sorry for that. So very very sorry.
When Brittany was ill last year and unable to care for herself and was basically out of her mind, my sister came to the rescue repeatedly, in many different ways. From coming to get my granddaughter and my younger kids and taking them for a few days while I got Brit hospitalized against her will for ten days - to going to visit Brit a month later when she was again hospitalized but at Maine Med - every day, for two months, in my place. I was 7 months pregnant and very ill, on bed rest and my daughter was an hour away, very ill and alone. My sister was there every single day visiting, caring for and advocating for my daughter ( in fact, my sister saved my daughters life in the hospital when SHE realized Brit had Magnesium toxicity and the nurses there chalked her inability to breathe or walk or function on "Brittany being Brittany". It wasnt pretty after that.My sister is not only a nasty bitch when necessary- but the epitomy of the phrase "mama bear") - all the while dragging my confused, sick stepmom along.
It's pretty easy to see the apple didnt fall far from the "amazing tree", right?
Things have recently, over the past year, gotten worse with my stepmom. She is diabetic and refuses to stay compliant with meds or diet. She has issues because of it. She has had infections and lots of things all dementia patients probably go through. Again, sparing my stepmoms dignity - I am just simply going to say it's been bad. Real bad.
Two weeks ago Edye needed to be hospitalized due to cellulitus in her leg. Blood sugar was up over 500. At home she was refusing to be med compliant until she was too sick to fight. By that time it was simply too late to continue at home despite being able to get meds into her. Her wound was horrible...the surrounding tissue various shade of black and blue spreading up her entire leg. Hospitalization and IV antibiotics helped stabilize - and she was moved to rehab. Now things have again gotten worse - and this time even if the antibiotics they cant get her to take help, she would always need to be on them because of the severity of the wound and her blood sugar.
Let me back up a bit. This strong, amazing woman has always said to us that she wouldn't ever under any circumstances want to live any way but able to care for herself. In fact, it has always been a "joke" with her that should she appear to be having a heart attack or stroke, my brother in law was to chuck her own the stairs so she wouldn't be on life support-become a burden-become less than what she always was:Strong and amazing. The joke is really on us, because Im sure you can see - she really wasn't joking.My sister has been her trusted go to person with medical directives and living will related things since she has been legally old enough. She - we all know- exactly how Edye would NOT want to live. Cut to the last two years and we have a proud,strong woman, AMAZING woman who is now confused and constantly upset that she cant get the words from her brain to her mouth. She cant use the right names, she cant get an entire, coherant sentence out and be understood. She cant dress herself. She cant bathe herself. She has no idea whats going on at any given time. She is just simply trapped inside her own head. She has lost the things she loved most - her independence and her connection to family. Her connection to her so well loved grandkids. She has no meaningful quality of life. Sometimes she knows all this. And it hurts so so much to watch her hurt.
Back to today.
The doctors sat my sister, the nurse...and the daughter.... down and discussed things with her and really made sure she understood that continuing with the process of treating her will prolong her life...but that she has not only expressed that she doesnt want the meds, but that her quality of life will not improve- and as we already knew, it would decline. So after much more suffering, she will eventually have the same outcome.
So, tomorrow my stepmom...my rock...is going to hospice. She will cease antibiotics. Her infection will increase, as will her blood sugar because diabetes is a fucking bitch. We hope to slip a pain patch on her to keep her comfortable. Due to the infection messing with the diabetes, she will eventually slip into a coma - and as my sister is holding up her end of my stepmoms bargain, she will not have any heroic measures and will have a DNR order.
My sister is doing as asked and is expected of her - and chucking her down the stairs.
I talked to her last night, and we both knew this was coming. I've been crying and laughing with my sister about everything from Edye's beloved mink coats, things we used to do as kids, how we will pull through and deal with my stepmoms belongings to how we really need my stepmom's secretary, John Paul to come help make the arrangements. Things no one but she and I would understand. I've been trying to decide how to include my kids in this - and have only been able to let my 17 year old know that her beloved Nan is dying and that we hope she will come say goodbye. My other kids are too little - and my oldest is just not as in her own head as she was when younger. I've been imagining what it is going to be like to see her, knowing she wont be here anymore. What it is going to be like when she's gone.
The thing that I can't shake, and what I said to my sister last night:
"Who is going to take care of us??"
But she hasn't been able to take care of us for a couple of years now. It makes no sense, but is the thing my hurting heart keeps saying.
I don't know how to do this. I don't want to do this. I am just not ready.I don't know how to be strong for my sister. I dont want to let her down.
I've never felt so much pain, but been so entirely numb at the same time.
There's stuff I need her to know
I want her chicken cutlets and spaghetti. Or roast. Or chicken soup. Or the peanut butter toast cut into strips for little hands. Or the dark gingerale for sick tummies.
Does she know that one of Brits favorite things to do was make her Nan's chicken cutlets, after she taught her when she was 14?? Brit can't make them anymore either.I didn't realize that until now. Someday Brit is going to be in a similar boat - and now Nana wont see that. For that, I am grateful.
I want Sunday mornings with coffee and NY bagels delivered to us with the weekly gossip rags. I want to go get a manicure. I want to hear her laugh and say "Hey Bugs". I want to see my babies on her knee. I want her to be at my wedding, and know Im doing it for the right reasons this time. I want my little ones to know her. I want her to hug me in that too tight hug that just made all the bad stuff go away.I want days in the sun on Peak's. And her goofy hats. And the smell of tanning oil. I want happy hour on the deck where all the adults are together laughing and having snacks - and we get shirley temples, out of the way- but listening while we play Uno. I want afternoons in her waterbed during the summer, while we watch scary or John Hughes movies while she was at work. I want the Bronx Zoo and trips to her office. I want to call her at work and have her assistant put me right through, because no matter how busy she was, she was available.I want so so many things and so much more time to have them in.
I want to tell her how much I admired her. How many times I made decisions based on what she would do - or what she would think of me.I want to thank her for my sister. I want to thank her for being my mother.
I want to remember the last time I told her I loved her.
I want to know I told her just how MUCH I loved her, when she could still understand...but I know I didn't.
I want to be ready for this, but I'm just not.
I want my mom.
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| Dec.1994, my bridal shower. My Moms. |
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| Nana and the kids - Bayonne |
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| Nana and Rylie |
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| Nana and her boys - Matthew and Jacob 2002 or 2003 |
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| My last picture of Nana. Kaylee and Reagan. Summer 2011 |
Saturday, August 13, 2011
"The sharp knife of a short life"
As it turns out, sometimes just because you "talk about" or live with an issue a lot, it doesn't necessarily mean you have accepted it. Sometimes it just means you have become indifferent to the subject matter... or maybe that's not quite what I am looking for. Sometimes you have just become so used to YOU talking about it, that it is almost surreal, I guess. If that makes any sense.
Sometimes all that it takes to bring reality back into focus, is someone else saying the same thing you have said a million times. Witnessing your own words in another's voice. It's a different experience to hear someone else say things that deep down you know to be true...but apparently haven't accepted as reality.
Today, Zac and I made a trip to Logan Airport in Boston to pick up his mom and little brother, arriving from Florida. They are coming to visit for the better part of a week. His mom came up to meet Reagan ( and me ) and see Zac last summer, but his brother did not. So this year they both came and got to meet Wyatt, too =) Anyway, we stopped for lunch and while we were eating, his mama asked us if we had selected a date for our wedding yet. We just recently officially decided to get hitched - and rather than waiting, we decided to do it this fall. Like specifically in the next two months. We have not, however chosen a date. Or done anything else to further the wedding preparations, to be honest.
So, Zac replies :
"No, no date yet. Soon though, Ang wants to do it while Brit is still healthy enough to be a part of it and really participate."
I smiled what felt like kind of a quirky, half-assed smile.
Then, while he stared at me from across the table, I realized I had tears coming. Tears I had no hope of stopping, and that did at last flow from one corner of one eye while I looked back at him and said "What?"- like I didn't know why he was looking at me with what appeared to be a mix of some sort of pain and pity.
I think I said it again and he just shook his head a little, kind of sad-like.
Why was I saying that? Challenging him to say that the tears I was busy pretending were invisible or non existent, were really not there? I was actually thinking "What? I didn't know Brit was sick? That she was going to get bad...really bad? Maybe I wasn't aware she wasn't going to magically heal herself??"
I sat for about another 30 seconds in silence - debating if the tears were going to stop, then I got up and quickly walked to the bathroom where I cried for literally just a minute, walked back out and sat down, looked him in the eye, and said it again.
"What?"
He shook his head again, just a very tiny bit, and never broke eye contact.
Then he said "I love you",very quietly.
He does that. Just says the right thing.The one and only thing there IS to say. He just knows. Almost every single time I really need him to. And he means it.
A few people we know have remarked on how quickly we intend to get married. So quickly that we will literally have no budget for our wedding. This fact sucks. Because he has never had a wedding, and deserves one. I have had a wedding and deserved a better person to marry than the one I got the first time around. The people that have made comments weren't doing so in a nasty manner. Just a little "Whats the hurry!?" or "If you get married next year, you will have a little to spend on it" or something similar. This includes Zac. He has, on more than one occasion mentioned to me that we could have "more" if we planned it a little further out.Not even a year away - just give ourselves a couple extra months. He does agree that the ultimate goal is to make our family official - the goal is to BE husband and wife, not to" have a wedding". In that spirit, he has also suggested simply going to City Hall and gettin' our matrimony on. Ultimately, we are doing something SO much bigger than joining two people together. We are promising each other and all ten children that we are here for the long haul. No matter what happens, we will be here, joined together - all of us,after any and all tragedy- ready to pick up the pieces and go on. We are all joining together, not just Zac and I.
Lately, I have been thinking I'm cheating him and myself, truth be told - out of a memorable ceremony. One that his mom and brother and sister can attend. And I admit, ultimately I am being selfish in rushing it, over all of the things I just listed as reasons not to.
But I'm not "in a hurry" because I'm trying to hold onto a man. Or trap him into being mine forever before he smartens up. Or because I'm afraid he will run away if we don't just hurry up and do it. I'm not in a hurry to "have a wedding".
.
I'm in a hurry because I am afraid of a whole bunch of different fears that most of you wont ever have to face.And I'm glad.
In a year I don't know what condition my daughter will be in. I don't know if she will still be trucking along, "healthy-ish" - or this most recently acquired version of health anyway. I don't know if she will be able to still feed herself, or walk unassisted, or if a machine will be breathing for her.
Beyond all of that, I don't know if there is going to be enough of her mind left to know what amazing, special and love based thing we are doing.
I don't know for sure she will still be here at all.
I think because of all that , I am trying to give her something with this wedding, too.
I am trying to share with her what love can be. She is not ever going to get married. She is never going to see her daughter or son get married. She is not going to look into the face of someone she cannot - does not want to live without every day, or grow old with him.She wont ever feel the stiffness of a wedding dress, the awkwardness of a veil, the ring being slipped on her finger. The only weddings she has even been to were the three she was a flower girl in when she was a child.
I want her to be a part of what we have - have her be there when it comes full circle.I want her to see and be a part of the reward of all of the pain and suffering we, as a family, have ever been through. And there has been a lot. There is not one person in my family that is not better off because of having Zac in their life, and they all know and would admit as such.
I am being selfish...I don't want to get married without all of my children there. They deserve this so much. I just can't not have Brit here....present.... in every sense of the word, on the day we all celebrate the best thing that's ever happened to us.
What Zac and I live every single day is beautiful. Trust, understanding, confidence in each other and ourselves, knowing that no matter what gets thrown at us, it's going to be "ok" - we have each other. It is a team and a partnership. It's a quiet comfort in silence. It's celebrating loudly all of our families accomplishments. It is sharing the joy, but also sharing the burden. It is knowing he is the other half of me. That I am whole because of what we have together.
It's not having an answer for an impossible question - but somehow offering the right one...and meaning it.
It's a quiet "I love you" when nothing is going to make the hurt go away.
Sometimes all that it takes to bring reality back into focus, is someone else saying the same thing you have said a million times. Witnessing your own words in another's voice. It's a different experience to hear someone else say things that deep down you know to be true...but apparently haven't accepted as reality.
Today, Zac and I made a trip to Logan Airport in Boston to pick up his mom and little brother, arriving from Florida. They are coming to visit for the better part of a week. His mom came up to meet Reagan ( and me ) and see Zac last summer, but his brother did not. So this year they both came and got to meet Wyatt, too =) Anyway, we stopped for lunch and while we were eating, his mama asked us if we had selected a date for our wedding yet. We just recently officially decided to get hitched - and rather than waiting, we decided to do it this fall. Like specifically in the next two months. We have not, however chosen a date. Or done anything else to further the wedding preparations, to be honest.
So, Zac replies :
"No, no date yet. Soon though, Ang wants to do it while Brit is still healthy enough to be a part of it and really participate."
I smiled what felt like kind of a quirky, half-assed smile.
Then, while he stared at me from across the table, I realized I had tears coming. Tears I had no hope of stopping, and that did at last flow from one corner of one eye while I looked back at him and said "What?"- like I didn't know why he was looking at me with what appeared to be a mix of some sort of pain and pity.
I think I said it again and he just shook his head a little, kind of sad-like.
Why was I saying that? Challenging him to say that the tears I was busy pretending were invisible or non existent, were really not there? I was actually thinking "What? I didn't know Brit was sick? That she was going to get bad...really bad? Maybe I wasn't aware she wasn't going to magically heal herself??"
I sat for about another 30 seconds in silence - debating if the tears were going to stop, then I got up and quickly walked to the bathroom where I cried for literally just a minute, walked back out and sat down, looked him in the eye, and said it again.
"What?"
He shook his head again, just a very tiny bit, and never broke eye contact.
Then he said "I love you",very quietly.
He does that. Just says the right thing.The one and only thing there IS to say. He just knows. Almost every single time I really need him to. And he means it.
A few people we know have remarked on how quickly we intend to get married. So quickly that we will literally have no budget for our wedding. This fact sucks. Because he has never had a wedding, and deserves one. I have had a wedding and deserved a better person to marry than the one I got the first time around. The people that have made comments weren't doing so in a nasty manner. Just a little "Whats the hurry!?" or "If you get married next year, you will have a little to spend on it" or something similar. This includes Zac. He has, on more than one occasion mentioned to me that we could have "more" if we planned it a little further out.Not even a year away - just give ourselves a couple extra months. He does agree that the ultimate goal is to make our family official - the goal is to BE husband and wife, not to" have a wedding". In that spirit, he has also suggested simply going to City Hall and gettin' our matrimony on. Ultimately, we are doing something SO much bigger than joining two people together. We are promising each other and all ten children that we are here for the long haul. No matter what happens, we will be here, joined together - all of us,after any and all tragedy- ready to pick up the pieces and go on. We are all joining together, not just Zac and I.
Lately, I have been thinking I'm cheating him and myself, truth be told - out of a memorable ceremony. One that his mom and brother and sister can attend. And I admit, ultimately I am being selfish in rushing it, over all of the things I just listed as reasons not to.
But I'm not "in a hurry" because I'm trying to hold onto a man. Or trap him into being mine forever before he smartens up. Or because I'm afraid he will run away if we don't just hurry up and do it. I'm not in a hurry to "have a wedding".
.
I'm in a hurry because I am afraid of a whole bunch of different fears that most of you wont ever have to face.And I'm glad.
In a year I don't know what condition my daughter will be in. I don't know if she will still be trucking along, "healthy-ish" - or this most recently acquired version of health anyway. I don't know if she will be able to still feed herself, or walk unassisted, or if a machine will be breathing for her.
Beyond all of that, I don't know if there is going to be enough of her mind left to know what amazing, special and love based thing we are doing.
I don't know for sure she will still be here at all.
I think because of all that , I am trying to give her something with this wedding, too.
I am trying to share with her what love can be. She is not ever going to get married. She is never going to see her daughter or son get married. She is not going to look into the face of someone she cannot - does not want to live without every day, or grow old with him.She wont ever feel the stiffness of a wedding dress, the awkwardness of a veil, the ring being slipped on her finger. The only weddings she has even been to were the three she was a flower girl in when she was a child.
I want her to be a part of what we have - have her be there when it comes full circle.I want her to see and be a part of the reward of all of the pain and suffering we, as a family, have ever been through. And there has been a lot. There is not one person in my family that is not better off because of having Zac in their life, and they all know and would admit as such.
I am being selfish...I don't want to get married without all of my children there. They deserve this so much. I just can't not have Brit here....present.... in every sense of the word, on the day we all celebrate the best thing that's ever happened to us.
What Zac and I live every single day is beautiful. Trust, understanding, confidence in each other and ourselves, knowing that no matter what gets thrown at us, it's going to be "ok" - we have each other. It is a team and a partnership. It's a quiet comfort in silence. It's celebrating loudly all of our families accomplishments. It is sharing the joy, but also sharing the burden. It is knowing he is the other half of me. That I am whole because of what we have together.
It's not having an answer for an impossible question - but somehow offering the right one...and meaning it.
It's a quiet "I love you" when nothing is going to make the hurt go away.
Saturday, August 6, 2011
My day started of badly...Here is my "Happy Place"...
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| Wyatt Landon - 8 mos old - August 2011 |
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| Sister Time |
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| My granddaughter, Izzy - August 2011 |
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| Reagan 8-2011 |
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| Wyatt |
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| Wyatt 8-2011 |
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| Aiden and Wyatt, 8 mos - August 2011 |
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| Aiden |
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| Wyatt, trying to get in on Jake's beyblade action |
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| Fall asleep in your swing and your 2 year old sister MIGHT wax your legs. |
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| The door that captivated Rylie. |
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| Styx 8-6-2011 |
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| Izzy and Reagan getting some lovins |
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| Grammy is a slow cook, Izzy - sorry! |
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| York's Wild Animal Kingdom 2009 |
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| This is called "rototilling" . uh -huh. |
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| UNH Dairy Barn Day 2010 |
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| Daddy and Reagan (4 days old) 2009 |
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| Proud Daddy 2009 |
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| Daddy and his girl 2011 |
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| ...and his boy 2011 |
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| Christmas morning 2010 - BB Gun. Zac and Jake |
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| Zac and Wyatt Dec.2010 |
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| Christmas morning 2010 |
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| Zac and his brother Collin - My kiddos and our neighbor 2009 |
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| Kaylee, Reagan, Zac and Kelsey - reag's first time sledding |
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| My Grandson, Aiden 2011 |
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| Whipped cream fight |
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| Me and the bestie =) |
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| me and the bestie....1990 |
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| My two best friends - our birthday party 2007 (?) |
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| You KNOW I love younger men, right? |
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| This one will be a senior this year...and leaving me before I know it |
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| Add caption |
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| Kelsey's Graduation June 2011 |
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| Kelsey and her dad....yup it made me cry. And him. AND her, too. <3 |
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| see? |
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| Kaylee and Betsy |
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| Kaylee and Kelsey |
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| Triple trouble |
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| Zac and Kelsey on her graduation day |
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| Kelsey and I |
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| Kaylee and Nicole |
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| cutest grandson ever. |
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| Wyat |
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| Emmy, Reagan and Jake |
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| Reagan and Rylie |
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| Weenie |
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| Daddy and Wyatt |
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| Hallie |
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| Isabella |
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| My boys |
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| My oldest and youngest daughters |
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| I love this picture. |
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| Someday, pictures like these will hold me together - or rip me apart. |
When I woke up this morning Zac hadn't made it bac from work yet and for some reason I was caught up in some thoughts that started tears - They stopped eventually, but the thoughts nagged at me a bit.So I decided to give myself a little gift. Here, in pictures is why my heart is just so damned full.
<3
<3
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