I have this friend. I've come to rely on her for so many things. Her wisdom, which is so spot on it amazes me. Her ability to understand a lot of things about my life. Enduring some very, very tough circumstances in her own life and to have handled them the way she has is a book that needs to be written. She boosts my self esteem, she says the exact right thing or knows when not to say anything. She's become my therapist, whether she likes it or not. She sees beauty in everything. We share a great love of music and find both solace and joy in just the right song. We share the same very quirky sense of humor. Nothing is off limits or too weird, which I love!! She rails at the injustice of the world like most people, but unlike most people, she tries to change it. She always has a ready smile, a ready tear, and the backbone of a steel sword. She has a marriage that makes me green with envy....25 years of ups and downs and you can still just feel the raw powerful love that dissipates for most couples after about 6 years. And not to be too crude, but she is one heck of a sassified woman, in the words of Clarence Carter, (if you don't understand, google the lyrics to "Strokin'!!) But that's off the subject! Back to her and I! She has become ESSENTIAL to me in the last 18 months. SHE JUST GETS IT.... probably because of her own life circumstances and dealing with a very special special needs child and the fact that she is just this free spirit who sees life through eyes that very few people possess. Obviously, I've come to value and treasure our friendship greatly. What is so ironic about our friendship, is that we have lived very parallel lives; we went to the same grade school, the same high school, we have many of the same friends, we have always known each other by name and sight, but we didn't become friends until about a year and a half ago. I have Facebook to thank for that. We've marveled at the fact that, despite the fact of being very kindred spirits, it took us 40 years to become friends. Last Saturday, she spent the day away from her own family and came and sat in a tiny, claustrophobic 8x8 room in the ER and acted like it didn't suck. I always have volunteers to come to the hospital with Adrianne and I, but I almost always politely turn them down because the room is cramped, constant people in and out, and frankly ,I just don't want to make small talk. But talking with her isn't like that. She somehow manages to get below the surface that I don't usually go with many people. But anyway, back to why it took us so long to connect and create one of the most authentic friendships I've ever had.
It was just the right time. During the worst time of my life, I found the friend that JUST GETS IT and what a blessing she is in my life. And Adrianne gets how fabulous she is, too, and she made sitting in that crappy ER room almost fun....Adrianne has the same irreverant sense of humor as she and I so it was perfect, and I wanted Adrianne to get to know this person who has come to mean so much to me and vice versa. I wanted her to understand the beauty that radiates from my daughter's soul...and it only takes one meeting to get that.
So there is my answer as to why we have known each other for over 40 years and have only relatively recently become friends. And now I don't know what I'd do without her.
Deanne Tomasich Stephens, I love you with all my heart. Thank you for you.
Friday, March 23, 2012
Tuesday, March 20, 2012
A WHOLE LIFETIME AHEAD OF YOU
My daughter is going to die.
I don't know if I am becoming unhealthily obsessed with the thought or if I am healthily trying to process the fact and prepare myself for when it actually happens. Which no one knows when that will be. Could be tomorrow,could be in 10 years. I feel like such a pessimist when I say that it's more likely to be closer to tomorrow than 10 years...I would be so grateful for just a few more years.....if they could be less painful years. I don't want her to suffer 4 more years the way she suffers now. So many levels of suffering that you just don't think about until you just don't have a choice anymore. Her mental and emotional suffering have started to catch up to the physical as it is dawning on her that life is not going to get magically better. Her life got ripped out from under her a year and half ago and it's not going back. It sucks. This would have been the semester she should have been graduating from K-State. Her friends, or the people who always called themselves her friends, are planning their lives, careers, families, paties, waiting tables, who knows....they have their whole lives to look forward to. That's one of those sayings we say but no one really puts real thought into. YOUR WHOLE LIFE AHEAD OF YOU!!!!!!!!!!!!!! What a thought. What a giddy, throw your arms up, dance in the rain twirling round and round while you sing a Cranberries song at the top of your lungs thought. That's what it should be anyway. Right now, the thought of having my whole life ahead of me is about more than I can stand. Oh GOd, what I wouldn't give to trade places with her. Sacreligious or not, I truly would make a deal with the devil to give her her WHOLE LIFE AHEAD OF HER. I know she has a life waiting for her on the other side...as mad as I am at God, I still cling to the beliefs that are supposed to get you through times like this. They aren't working very well for me personally right now, but I do believe in the afterlife and that God will welcome my baby with gentle open arms and then her Poppo will scoop her up and smother her with kisses upon kisses upon kisses. And she will have no pain. Her whole life, INFINITY, with no pain. Just pain free joy. And yes, I know we will be reunited. But God help me, what do I do in the meantime. People will say life goes on, that I have other children who need me, that somehow it will get easier with time. But those people don't know this fabulous, miraculous, so funny and fun, oh-so-unique relationship that has been at the core of my life for 22 years. I try so hard to imagine how I will fill that, I worry terribly that I will somehow damage Declan and Lily, especially Lily, making her feel that she somehow has to live up to or replace this phenomenal child that I built a special pedestal for the day she was born. I'm so afraid Lily will feel less special or loved because I go on and on about the daughter I lost.
One thing I've become aware of lately is that I have started to realize that if she isn't going to get better,and by better I mean just to a level that she can function without excruciating pain, I don't want her to live like this. I almost feel like I am going to vomit as I type and realize what I'm saying. And I get the sense that she is coming to the same conclusion. We've had some good conversations about this. Probably what I love the most about Adrianne and I is that we can talk about ANYTHING. Even how she wants her funeral. But we are learning together to accept the unthinkable. It is so unthinkable and yet it's all I think about...not very funny irony, is it.
When I start writing these posts I never know where they are going. They usually don't have some profound point.They usually ramble in many directions,none of them poignant. But for some reason I am stuck on the thought of having ONE'S WHOLE LIFE AHEAD OF YOU! And fucking unfair it is that that means something different for Adrianne than it does for other fresh -out- of -college, set -the-world -on- fire 22 year olds. I grieve every minute of every day for the things that won't be, that she won't experience. I grieve for me and I feel so cheated. I grieve that we won't shop for wedding dresses together. I grieve that she won't find that overwhelming white hot love that you think you're the only one in the world that feels that way!!! I grieve for the moment she realizes that she's carrying anothing human being inside her and even more so for that moment 8 1/2 months later when that nurse lays that little pink and white gunky squirmy package of pure love on her tummy and she knows that she can never love anything else like this again. Again, I grieve for me, because I would love that baby so much I can already feel it in my heart. It already hurts andit'sonly a thouhgt! I would pray that she/he could be the teeniest bit as special as his/her mama. But I would know that's not possible..although, from what I hear about grandbabies, they way outshine their parents! My whole life ahead of me....it just seems like a vast empty field. Wha do you do in an empty field? IT sounds so selfish to be bitching about having a life ahead of me when so many people don't. Life without Adrianne seems lke that vast empty wasteland. I will figure out what to sow or build in that space...I know that whatever I do with the rest of my life, it will center around Adrianne in someway, be it raising CF awareness, fundraising, creating a foundation in Adrianne's name to help grant the dreams of other CF kids...I don'tknow. I just know that I wish life was a little more fair and the playing field a little more equal. OUR WHOLE LIVES AHEAD OF US.....it shouldn't mean 89 for some people and 22 for others. Andif it means 22 for some...it shouldn't be Adrianne that gets the short stick. I'm sure the other guy who gets the bad card disagress, but Idon't care!!!
SO..Adrianne's whole life ahead of her...I can only promise her one thing for sure....that time will be filled with all of the love and smooches she can stand.
Then again...some very cool things have been happening in the CF field lately. PLease, please, please God, let them happen in time. Give her time to fall in love. She wants to be a mommy so bad. Please give her time. Let her have just a few of life's great moments...I'm begging, praying. I could make deals with You all day long. I will do every good work I can think of. I will be a better mother. I will be a better daughter and sister and aunt. I will meet my neighbors and I will be a friend to anyone who needs me. I will be a better person in general. Take anything from me....give her some of life's golden times. Please, oh please. Oh please.
I don't know if I am becoming unhealthily obsessed with the thought or if I am healthily trying to process the fact and prepare myself for when it actually happens. Which no one knows when that will be. Could be tomorrow,could be in 10 years. I feel like such a pessimist when I say that it's more likely to be closer to tomorrow than 10 years...I would be so grateful for just a few more years.....if they could be less painful years. I don't want her to suffer 4 more years the way she suffers now. So many levels of suffering that you just don't think about until you just don't have a choice anymore. Her mental and emotional suffering have started to catch up to the physical as it is dawning on her that life is not going to get magically better. Her life got ripped out from under her a year and half ago and it's not going back. It sucks. This would have been the semester she should have been graduating from K-State. Her friends, or the people who always called themselves her friends, are planning their lives, careers, families, paties, waiting tables, who knows....they have their whole lives to look forward to. That's one of those sayings we say but no one really puts real thought into. YOUR WHOLE LIFE AHEAD OF YOU!!!!!!!!!!!!!! What a thought. What a giddy, throw your arms up, dance in the rain twirling round and round while you sing a Cranberries song at the top of your lungs thought. That's what it should be anyway. Right now, the thought of having my whole life ahead of me is about more than I can stand. Oh GOd, what I wouldn't give to trade places with her. Sacreligious or not, I truly would make a deal with the devil to give her her WHOLE LIFE AHEAD OF HER. I know she has a life waiting for her on the other side...as mad as I am at God, I still cling to the beliefs that are supposed to get you through times like this. They aren't working very well for me personally right now, but I do believe in the afterlife and that God will welcome my baby with gentle open arms and then her Poppo will scoop her up and smother her with kisses upon kisses upon kisses. And she will have no pain. Her whole life, INFINITY, with no pain. Just pain free joy. And yes, I know we will be reunited. But God help me, what do I do in the meantime. People will say life goes on, that I have other children who need me, that somehow it will get easier with time. But those people don't know this fabulous, miraculous, so funny and fun, oh-so-unique relationship that has been at the core of my life for 22 years. I try so hard to imagine how I will fill that, I worry terribly that I will somehow damage Declan and Lily, especially Lily, making her feel that she somehow has to live up to or replace this phenomenal child that I built a special pedestal for the day she was born. I'm so afraid Lily will feel less special or loved because I go on and on about the daughter I lost.
One thing I've become aware of lately is that I have started to realize that if she isn't going to get better,and by better I mean just to a level that she can function without excruciating pain, I don't want her to live like this. I almost feel like I am going to vomit as I type and realize what I'm saying. And I get the sense that she is coming to the same conclusion. We've had some good conversations about this. Probably what I love the most about Adrianne and I is that we can talk about ANYTHING. Even how she wants her funeral. But we are learning together to accept the unthinkable. It is so unthinkable and yet it's all I think about...not very funny irony, is it.
When I start writing these posts I never know where they are going. They usually don't have some profound point.They usually ramble in many directions,none of them poignant. But for some reason I am stuck on the thought of having ONE'S WHOLE LIFE AHEAD OF YOU! And fucking unfair it is that that means something different for Adrianne than it does for other fresh -out- of -college, set -the-world -on- fire 22 year olds. I grieve every minute of every day for the things that won't be, that she won't experience. I grieve for me and I feel so cheated. I grieve that we won't shop for wedding dresses together. I grieve that she won't find that overwhelming white hot love that you think you're the only one in the world that feels that way!!! I grieve for the moment she realizes that she's carrying anothing human being inside her and even more so for that moment 8 1/2 months later when that nurse lays that little pink and white gunky squirmy package of pure love on her tummy and she knows that she can never love anything else like this again. Again, I grieve for me, because I would love that baby so much I can already feel it in my heart. It already hurts andit'sonly a thouhgt! I would pray that she/he could be the teeniest bit as special as his/her mama. But I would know that's not possible..although, from what I hear about grandbabies, they way outshine their parents! My whole life ahead of me....it just seems like a vast empty field. Wha do you do in an empty field? IT sounds so selfish to be bitching about having a life ahead of me when so many people don't. Life without Adrianne seems lke that vast empty wasteland. I will figure out what to sow or build in that space...I know that whatever I do with the rest of my life, it will center around Adrianne in someway, be it raising CF awareness, fundraising, creating a foundation in Adrianne's name to help grant the dreams of other CF kids...I don'tknow. I just know that I wish life was a little more fair and the playing field a little more equal. OUR WHOLE LIVES AHEAD OF US.....it shouldn't mean 89 for some people and 22 for others. Andif it means 22 for some...it shouldn't be Adrianne that gets the short stick. I'm sure the other guy who gets the bad card disagress, but Idon't care!!!
SO..Adrianne's whole life ahead of her...I can only promise her one thing for sure....that time will be filled with all of the love and smooches she can stand.
Then again...some very cool things have been happening in the CF field lately. PLease, please, please God, let them happen in time. Give her time to fall in love. She wants to be a mommy so bad. Please give her time. Let her have just a few of life's great moments...I'm begging, praying. I could make deals with You all day long. I will do every good work I can think of. I will be a better mother. I will be a better daughter and sister and aunt. I will meet my neighbors and I will be a friend to anyone who needs me. I will be a better person in general. Take anything from me....give her some of life's golden times. Please, oh please. Oh please.
Subscribe to:
Posts (Atom)