Thursday, May 22, 2008
Today, I picked Tinker Tot up from school, and she was crying. When I asked her why...again she said.. "Dada and RosieD said bad things about you." I was expecting this to happen eventually since I have not been reacting to RosieD's struggle to control me. There were the nasty words shouted at me the other night, they've been bouncing around in my head, and I've been wondering if my Tinker heard them.
I had to make a difficult decision tonight and decided not to see Tinker for the next 2 weeks. I WILL NOT have my daughter in the middle of something they should be handling as adults. I will not react with anger or show them my frustration. I will miss Tinker with every fiber of my very being but, I feel this is what's best for her at the moment because.........this way.....whether I'm the bad guy or not.......she doesn't feel like she has to tell me........she doesn't have to get in my car after school, cry, and tell me Dada and RosieD said mean words. She doesn't have to cry, beg, and plead for me not to tell RosieD because she's afraid of getting in trouble.
I know there was a time I needed to have all control in my life. Because, I was so unhappy with myself. Losing Roo changed me, Blue Bell being happy again changed me. I know ex-idiot could not stand the control I tried to exert over him daily when we were married........I wonder if I am out of the equation and they really have to look at themselves.......if it will make a difference. I know in the short term, I will be branded the mother who doesn't care.......the bad mother.......they'll say I only think about Blue Bell........but as I sat holding my little Tinker crying in my arms today.......I know in my heart....... in the long run.......there will be peace. If I have to take the brunt of it so be it........but Tinker won't be getting in my car after school crying her little eyeballs out, she'll be safe from the feelings of being in the middle, or feeling like she has to tell me, even though I've told her I don't need to know everything that happens at Dada's house. IT's OK not to tell me about the bad words said about me... I talked to her about not seeing her....about just being at Dada's for a bit, and the tears stopped...she sighed in relief. I grew up in a divorced home...filled with angry words, used as a pawn by both my parents to hurt each other. I won't do that to Tinker. I won't let her feel that push and pull, feel the need to tell me things to feel loyal to me and then turn around and tell her Dada things so she feels loyal to him....She always leads her Dada to believe she doesn't have fun with me....because then well, Dada buys her presents...like ummm a HORSE! I won't contribute to her learning to be more manipulative. She was relieved..RELIEVED..when I asked her what she thought about taking a little break. It's exhausting emotionally on every level. I sent her to live with her Dada and RosieD when Roo was dying. I made the unselfish choice to do what I thought was in her best interests at the time. I didn't want her to be scared, be scarred, from witnessing Roo's painful death....but I didn't anticipate any of this. I didn't anticipate this emotional turmoil being released on her by her Dada and RosieD. I have a plan, it will take time, I have a goal, it will take patience.....for now my little 6yr old needs a break....and if I'm the one that has to be unselfish and take the emotional blows not seeing her...well...I can do it. For 2 weeks.
I've been called insane, a piece of shit, a bad mother, but I have yet to utter one mean spirited word in their direction. I won't sink to their level of playing dirty. Instead, I will do as I have always done since Roo died. I will pray.
and those prayers.....they will be answered......it's been a long time since I wrote this....8 months.....who knew that over these 8 months things would get so much worse....and then.....SO MUCH BETTER!!!
F*LUSHHHHHHHHHHHHHHHHHH
Showing posts with label Roo. Show all posts
Showing posts with label Roo. Show all posts
Saturday, January 17, 2009
Friday, January 16, 2009
We all have a story....
We all have a story. The stories in our lives shape who we are, what we feel, what we believe. Your story is different then mine. Your story might be filled with alot more happiness, tragedy, ups and downs. We all wake up in the morning and some of us choose how we will feel and react to the happenings of our day. Some of us run on auto-pilot and do what we need to do just to survive the day. Some of us wear our blinders to live in denial of all the negativity around us. Some of us rip off those blinders and tackle the day thinking... what am I going to do differently to change the way I think, feel, react, LIVE???
I have a circle of friends that I am getting to know and become closer with everyday. I'm taking control back from RosieD and trying to forgive her for one of the most heinous things anyone has ever said to me. I'm enjoying my Tinker Tot and loving up the little bit of baby she still has left in her while being blown away by the extent of her intelligence. I'm forever changing and moving forward. I'm always living in the moment, taking it all in, challenging myself to be a better me and wondering where my story leads to next.
Some days I live in fear.....but it's fear that drives me. Some days I live in grief......but it's grief that drives me. Everyday I live with H.O.P.E........but it's hope that helps drive me to believe I can react, feel, change, love, live in all the ways I choose to. Lately, I feel judgemental. I sincerely detest judgemental people but lately, I find myself being one. Maybe judgemental isn't the right word. Maybe, because of my story, my journey, it has shaped the way in which I view the world. I look at myself and Blue Bell, I think of Roo I think of our journey together, what we all went through and had to overcome, and it makes me think, there is nothing in this world we can't accomplish if we set our mind to it. There is nothing we can't achieve.
So, when I see other people making excuses or allowances for things that are clearly unacceptable or because they don't know where to start or they don't know how to change their circumstances, I get angry, I get ^gulp^ whispersunderbreath-judgemental.
My story/journey in life has helped me to see that I can do anything......My girls are capable of doing anything, and yes my story is different then yours, your difficulties, my own, may be the same or different, but we still have choices.
Choice. Roo, didn't have a choice. There's alot of choices she didn't have. She couldn't do simple things in life we take for granted, She couldn't run across the room, She couldn't choose what to eat, She couldn't choose what toy to play with, She couldn't choose to change positions, She couldn't choose to live. God made her the way she was for a reason. And for that reason, I try to revel in every choice I make. The choice of how to react, the choice of how to live, the choice of what I will and will not accept in my life, the choice of something as simple as what to eat. Really, it's all so simple.
There's always fear of climbing the mountain. Climbing it, changing, growing is the hard part. The sweet reward is standing on the top looking at the view. Standing tall, knowing you tackled something so hard, beyond reach, but knowing you survived and grew. I feared to live after Roo died. I feared to feel. I feared to love. Fear is what drove me to climb the mountain. Sometimes, I wonder if I'll ever get to the top. When I look down and get a glimpse of the view, it's breathtaking. Everything I want is right within my reach. My story, my journey, my choice.
I'm going through a period of growing. Peeling back layers of feelings, trying to figure out how, when, why, it will be. Sitting with myself, my feelings, and looking at what choices I have. I'm grateful there are many. I know where I've been, I know the story of my past, it's the story of the here and now, the future, the choice to look forward, up, beyond, and keep climbing. I can move mountains, I can climb mountains, I can dig through them, either way I'll overcome with every choice I make.
Last night, I was proud of myself. It was a shining moment, a ah-ha kind of moment. 2 hard conversations where I was able to remain calm, cool, and collected. RosieD wants to be friends again. I simply can't. I won't....I might be able to forgive her in time...but even forgiveness can not give back the friendship she destroyed with 3 words. Three hateful, spiteful, ugly words. She called me last night and I asked her to stop, don't call, don't write, don't contact me. I'm too busy climbing my mountain, reaching my goals, fulfilling my dreams, to let anyone pull me down.
I felt success, I felt triumphant, and then it came toppling down when my best friend admitted to well...I guess the word is "stalking" me. And that story....is to be told on another day. Cause, I'm holding onto feeling good, proud, and reaching my goals....standing on top of the mountain...and admiring the breath taking view. I am thisclose and nothing, no one, can take it from me or stop me.....
F*LUSHHHHHHHHHHHHHHHHHH
I have a circle of friends that I am getting to know and become closer with everyday. I'm taking control back from RosieD and trying to forgive her for one of the most heinous things anyone has ever said to me. I'm enjoying my Tinker Tot and loving up the little bit of baby she still has left in her while being blown away by the extent of her intelligence. I'm forever changing and moving forward. I'm always living in the moment, taking it all in, challenging myself to be a better me and wondering where my story leads to next.
Some days I live in fear.....but it's fear that drives me. Some days I live in grief......but it's grief that drives me. Everyday I live with H.O.P.E........but it's hope that helps drive me to believe I can react, feel, change, love, live in all the ways I choose to. Lately, I feel judgemental. I sincerely detest judgemental people but lately, I find myself being one. Maybe judgemental isn't the right word. Maybe, because of my story, my journey, it has shaped the way in which I view the world. I look at myself and Blue Bell, I think of Roo I think of our journey together, what we all went through and had to overcome, and it makes me think, there is nothing in this world we can't accomplish if we set our mind to it. There is nothing we can't achieve.
So, when I see other people making excuses or allowances for things that are clearly unacceptable or because they don't know where to start or they don't know how to change their circumstances, I get angry, I get ^gulp^ whispersunderbreath-judgemental.
My story/journey in life has helped me to see that I can do anything......My girls are capable of doing anything, and yes my story is different then yours, your difficulties, my own, may be the same or different, but we still have choices.
Choice. Roo, didn't have a choice. There's alot of choices she didn't have. She couldn't do simple things in life we take for granted, She couldn't run across the room, She couldn't choose what to eat, She couldn't choose what toy to play with, She couldn't choose to change positions, She couldn't choose to live. God made her the way she was for a reason. And for that reason, I try to revel in every choice I make. The choice of how to react, the choice of how to live, the choice of what I will and will not accept in my life, the choice of something as simple as what to eat. Really, it's all so simple.
There's always fear of climbing the mountain. Climbing it, changing, growing is the hard part. The sweet reward is standing on the top looking at the view. Standing tall, knowing you tackled something so hard, beyond reach, but knowing you survived and grew. I feared to live after Roo died. I feared to feel. I feared to love. Fear is what drove me to climb the mountain. Sometimes, I wonder if I'll ever get to the top. When I look down and get a glimpse of the view, it's breathtaking. Everything I want is right within my reach. My story, my journey, my choice.
I'm going through a period of growing. Peeling back layers of feelings, trying to figure out how, when, why, it will be. Sitting with myself, my feelings, and looking at what choices I have. I'm grateful there are many. I know where I've been, I know the story of my past, it's the story of the here and now, the future, the choice to look forward, up, beyond, and keep climbing. I can move mountains, I can climb mountains, I can dig through them, either way I'll overcome with every choice I make.
Last night, I was proud of myself. It was a shining moment, a ah-ha kind of moment. 2 hard conversations where I was able to remain calm, cool, and collected. RosieD wants to be friends again. I simply can't. I won't....I might be able to forgive her in time...but even forgiveness can not give back the friendship she destroyed with 3 words. Three hateful, spiteful, ugly words. She called me last night and I asked her to stop, don't call, don't write, don't contact me. I'm too busy climbing my mountain, reaching my goals, fulfilling my dreams, to let anyone pull me down.
I felt success, I felt triumphant, and then it came toppling down when my best friend admitted to well...I guess the word is "stalking" me. And that story....is to be told on another day. Cause, I'm holding onto feeling good, proud, and reaching my goals....standing on top of the mountain...and admiring the breath taking view. I am thisclose and nothing, no one, can take it from me or stop me.....
F*LUSHHHHHHHHHHHHHHHHHH
Wednesday, January 14, 2009
Friday, December 17, 2004HAPPY BIRTHDAY TO MY PRINCESS Roo!!!!!!!!!!!!!!!!!! I can't believe that Roo is 1 today. When she was born I had no clue the journey we were about to begin. I had no clue that in this last year Roo would help me to heal family relationships, teach me how strong I can be, bring Tinker's Dad back into her life, and touch everyone that meets her. I have learned so much from this little girl of mine, so much about life. I cherish everyday I have with her. I don't think that I will ever be able to truly accept everything that has happened to her. Bu,t I believe that I am ready to live again for my children, to give Roo much love and happiness everyday as she gives to those around her.
All of my friends just absolutely fell in love with her last week. Every minute of the day someone was holding her and she just loved it. I know you all are waiting for details, I'm just so busy living again.Her appt was awesome we go back on Jan 3 for testing. They are going to do the skin biopsy again, evoked potential testing on her eyes, eeg, mri, gi, pulmo, cardio, another swallowing study, we are gonna be busy. The doctor at the clinic put his initial diagnosis as Metabolic encephalopathy, mental retardation, failure to thrive, and short stature. Roo has not really grown since she was 8 months old. Her head circumference is the same, her weight up and down if we could hit 17 lbs and keep going I would be a happy mommy!, and her length has been the same for 4 months. I told the doctor, I know she is the way she is, but I would like a diagnosis to at least have something to go by. He said that there is a 30% chance we may not find one. He will go as far as I want to go in looking. He confirmed what I already knew about this being progressive. He would like to try the mito cocktail or something like that but he wants to do his testing 1st. I told him I was moving up in Feb. and was surprised when he said that the testing can't wait till then.
So, we are on a better path, still not a great one, but better!Roo has been doing OK, she has another ear infection she needs tubes. Her breathing is awful and I'm so sick and tired of bringing her to the doctor and them telling me its because she has no productive cough and that's just the way it is. I mean there's got be something I can do to get that crap out her throat and chest. I have been doing chest pt that her therapist taught me, I can move some of it but not always. I'm doing breathing treatments and just praying it gets better.She's also been having trouble pooping lately. It seems like she is just not strong enough to push it out, poor thing. She just tries so hard and nothing so me and mostly her dad have been helping her out. I tried some mineral oil to see if that would help and after 3 days still nothing so we'll see.
After being in Ohio last week, around my family and friends, I feel a great sense of peace. I know that whatever happens I will be OK, that my girls and I are surrounded by love, and Roo's life will change people and touch them. It's awesome just to watch my friends hold her, I can see in their eyes the love, and how she just literally melts their heart.
updated: Roo did touch so many lives and change people. I am forever grateful for what she gave here on earth. Blue Bells' 1st gym meet was on the 18th last year, this year the championships are on the 18th. I met a Mom and little girl last year at Blue's 1st gym meet. The little baby girl had Mito, what are the odds, I like to believe that many of Blue's meets are on the 18th to remind us that Roo is still with us and proud of the both of us. For the Mom I am able to be despite her loss, for the wonderful, amazing, shining, girl Blue is, despite having watched Roo die a slow death. She would be 5 now, I'm sure fighting with Tinker over my affection and attention, Blue being annoyed by both her little sissies, God chose this path that we all walk. I step back in wonder everyday at how much Tinker and Blue's bond has grown. How Blue has let go of her anger towards Tinker, because she is not Roo, how they both have flourished and grown. I miss Roo so much, I know Blue misses her too, each day the both of us live to honor her and her memory, understanding each other more then most Mother's and daughter's can........We may not talk about Roo much to the people around us, We may act like life has moved on, truth is we don't need to express through words anymore, those around us know how much we have suffered, how much we have fought to come back and learn how to live without Roo and through her memory, how lucky are we, that through a wink, smile, hug, or encouraging words, we know that everyone around us that loves us deeply, also carries our sweet Roo in their hearts.....F*LUSHHHHHHHHHHHblue raz
All of my friends just absolutely fell in love with her last week. Every minute of the day someone was holding her and she just loved it. I know you all are waiting for details, I'm just so busy living again.Her appt was awesome we go back on Jan 3 for testing. They are going to do the skin biopsy again, evoked potential testing on her eyes, eeg, mri, gi, pulmo, cardio, another swallowing study, we are gonna be busy. The doctor at the clinic put his initial diagnosis as Metabolic encephalopathy, mental retardation, failure to thrive, and short stature. Roo has not really grown since she was 8 months old. Her head circumference is the same, her weight up and down if we could hit 17 lbs and keep going I would be a happy mommy!, and her length has been the same for 4 months. I told the doctor, I know she is the way she is, but I would like a diagnosis to at least have something to go by. He said that there is a 30% chance we may not find one. He will go as far as I want to go in looking. He confirmed what I already knew about this being progressive. He would like to try the mito cocktail or something like that but he wants to do his testing 1st. I told him I was moving up in Feb. and was surprised when he said that the testing can't wait till then.
So, we are on a better path, still not a great one, but better!Roo has been doing OK, she has another ear infection she needs tubes. Her breathing is awful and I'm so sick and tired of bringing her to the doctor and them telling me its because she has no productive cough and that's just the way it is. I mean there's got be something I can do to get that crap out her throat and chest. I have been doing chest pt that her therapist taught me, I can move some of it but not always. I'm doing breathing treatments and just praying it gets better.She's also been having trouble pooping lately. It seems like she is just not strong enough to push it out, poor thing. She just tries so hard and nothing so me and mostly her dad have been helping her out. I tried some mineral oil to see if that would help and after 3 days still nothing so we'll see.
After being in Ohio last week, around my family and friends, I feel a great sense of peace. I know that whatever happens I will be OK, that my girls and I are surrounded by love, and Roo's life will change people and touch them. It's awesome just to watch my friends hold her, I can see in their eyes the love, and how she just literally melts their heart.
updated: Roo did touch so many lives and change people. I am forever grateful for what she gave here on earth. Blue Bells' 1st gym meet was on the 18th last year, this year the championships are on the 18th. I met a Mom and little girl last year at Blue's 1st gym meet. The little baby girl had Mito, what are the odds, I like to believe that many of Blue's meets are on the 18th to remind us that Roo is still with us and proud of the both of us. For the Mom I am able to be despite her loss, for the wonderful, amazing, shining, girl Blue is, despite having watched Roo die a slow death. She would be 5 now, I'm sure fighting with Tinker over my affection and attention, Blue being annoyed by both her little sissies, God chose this path that we all walk. I step back in wonder everyday at how much Tinker and Blue's bond has grown. How Blue has let go of her anger towards Tinker, because she is not Roo, how they both have flourished and grown. I miss Roo so much, I know Blue misses her too, each day the both of us live to honor her and her memory, understanding each other more then most Mother's and daughter's can........We may not talk about Roo much to the people around us, We may act like life has moved on, truth is we don't need to express through words anymore, those around us know how much we have suffered, how much we have fought to come back and learn how to live without Roo and through her memory, how lucky are we, that through a wink, smile, hug, or encouraging words, we know that everyone around us that loves us deeply, also carries our sweet Roo in their hearts.....F*LUSHHHHHHHHHHHblue raz
Monday, January 12, 2009
My body always remembers......
My body always remembers no matter how hard I try to keep busy. No matter how hard I try to block out the date. It's there. The 18th. Looming every month as another month gone by since I held my baby. Since I've seen her laugh and smile. Since I've held her curled up in my arms, next to me, rubbing her little hand, and laying cheek to cheek. Sleeping with her in my arms, holding her forehead so that she could rest without the constant movement from her involuntary moments.
My heart is aching. It's so weird to live life, be happy, live normally, get up day after day, get dressed, smile and laugh and make new memories with the girlies, and then wake up one day and feel like all my emotional progress has just been wiped away, but so goes the journey of grief.
I'm finally better from this last round of illness I battled for 3 weeks. More tests on Thurs and possibly a muscle biopsy. It was hard and daunting but I must say that now when I get sick, I don't get depressed. It is a fact of my life. I learned from Roo that I can get through anything. When I'm so struck down physically, I draw from Roo's strength, her spirit, she always fought so hard. I know that no matter what ickie weird infection that may strike me down I will always bounce right back up. Takes time, but I do.
When Roo was alive I always felt if I had enough will for her to live she would. I would guess most mothers would feel the same in that situation. We have to, in order to survive the pain, in order to get by each and everyday of watching lose a little piece of our children, to a horrible disease. I've learned to take that strong emotion, that strong emotional will, and apply it to myself now when I get sick. It is true what they say, if you think good things, they will happen.
On a lighter note, because yes, life has been bright, shiny, and happy lately!!!! Blue
Bell got straight A's again and Tinker Tot is closer to being home full time!!! Oh, my girlies are growing up!! I have a busy day lying ahead of me and needed to get my grief feelings out, to start my day. So, I guess this is a selfish blog, it's just for me, because in my real life, I can't walk around today saying, ohhhh how my heart just hurts today, ohhh Roo is on my mind with every breath I take, with every beat of my heart, with every thought passing through my mind.
Honestly, this past week, I've been shiny and upbeat, feeling SO MUCH BETTER PHYSICALLY PRAISE GOD!!! and living in the moment. Following the new journey that God has placed before me, cherishing, and loving every moment of it. What I do with my days, lifts my spirit, and helps me to be able to give back into the world. Helps the girlies to see their Mommy in a new light, in a different way, and the positive impact far outweighs anything else.
I have had peace and healing come into my heart. The positive in my life, the steps forward I am making are truly remarkable. The way I view the world through my eyes is forever changed because of my Roo. I see so much goodness, I see the potential in every child that is close to me, I can see past so much to see the goodness, something I wasn't ever able to do before. Isn't it amazing how one little tiny girl change so much in so short a time?????
No matter how hard I try to forget she is no longer here. No matter how hard I try to forget the pain, no matter how hard I strive to maintain the positive and goodness I am surrounded by, my body never forgets. It hurts, it stings, but also where I am now, I take a moment feel it, refocus, stand back up tall, take a breath wipe away my tears, and know that my baby is shining down on me, through me, through her sissies, proud of us all, and saying GO MOMMY GO!!! Grab your dreams, grab your ambition, grab that happiness that lies right there before you, and I do. I'm holding on to it tightly, this journey God has placed before me, to help me to heal, and at the same time help others by reaching out through love.
No matter how hard I try to forget, what I do with my days, everyday, is the same thing I did for my Roo when she was alive here on earth. It's positive, it's giving, it's providing that strong sense of will to others, it's adding goodness to the world. it's emotional, it's giving, it's draining, BUT IT GIVES BACK SO MUCH MORE. Fills my spirit, fills my emotional emptiness, fills my heart.
Let the day begin, no more tears, there is much work to be done. I'll be smiling today, breathing, enjoying my healthy body (for the moment) and watch little miracles happen.
No matter how hard I try to forget, my body always remembers, and my spirit gets stronger as I feel God and Roo give me the will to reach my goals and dreams.
How wonderfully blessed am I??? I can't even put it into words. I miss Roo, I miss Tinker(she's at the ex-idiots), Blue is finally sleeping........I'm sitting here bracing myself for the 18th......This month...the 18th...I'll be sitting at Blue's gym meet, cheering her on, holding my breath as she begins each routine...thinking how things have come full circle. Blue started back at gym the day we buried Roo, now, she's a star gymnast, shining and beaming, reaching the podium, her room filled with medals and trophies. A young girl that works so hard, loves what she can do, and has a greater understanding on what a gift it is to be able to flip, fly, and twirl. All the while, knowing our Roo, is smiling down, watching us, watching me beam with pride, my heart swell with joy, as Blue continues to succeed and impress everyone with her will and spirit....it's no wonder those 2 had a bond like no other............2 sisters...one born into a broken body with a huge spirit...and one that is finally able to do what she loves...in memory of her sissy.....one word that sums up my life....BITTERSWEET. F*LUSHHHHHHHHHHHHHHHHHH mango martini.
My heart is aching. It's so weird to live life, be happy, live normally, get up day after day, get dressed, smile and laugh and make new memories with the girlies, and then wake up one day and feel like all my emotional progress has just been wiped away, but so goes the journey of grief.
I'm finally better from this last round of illness I battled for 3 weeks. More tests on Thurs and possibly a muscle biopsy. It was hard and daunting but I must say that now when I get sick, I don't get depressed. It is a fact of my life. I learned from Roo that I can get through anything. When I'm so struck down physically, I draw from Roo's strength, her spirit, she always fought so hard. I know that no matter what ickie weird infection that may strike me down I will always bounce right back up. Takes time, but I do.
When Roo was alive I always felt if I had enough will for her to live she would. I would guess most mothers would feel the same in that situation. We have to, in order to survive the pain, in order to get by each and everyday of watching lose a little piece of our children, to a horrible disease. I've learned to take that strong emotion, that strong emotional will, and apply it to myself now when I get sick. It is true what they say, if you think good things, they will happen.
On a lighter note, because yes, life has been bright, shiny, and happy lately!!!! Blue
Bell got straight A's again and Tinker Tot is closer to being home full time!!! Oh, my girlies are growing up!! I have a busy day lying ahead of me and needed to get my grief feelings out, to start my day. So, I guess this is a selfish blog, it's just for me, because in my real life, I can't walk around today saying, ohhhh how my heart just hurts today, ohhh Roo is on my mind with every breath I take, with every beat of my heart, with every thought passing through my mind.
Honestly, this past week, I've been shiny and upbeat, feeling SO MUCH BETTER PHYSICALLY PRAISE GOD!!! and living in the moment. Following the new journey that God has placed before me, cherishing, and loving every moment of it. What I do with my days, lifts my spirit, and helps me to be able to give back into the world. Helps the girlies to see their Mommy in a new light, in a different way, and the positive impact far outweighs anything else.
I have had peace and healing come into my heart. The positive in my life, the steps forward I am making are truly remarkable. The way I view the world through my eyes is forever changed because of my Roo. I see so much goodness, I see the potential in every child that is close to me, I can see past so much to see the goodness, something I wasn't ever able to do before. Isn't it amazing how one little tiny girl change so much in so short a time?????
No matter how hard I try to forget she is no longer here. No matter how hard I try to forget the pain, no matter how hard I strive to maintain the positive and goodness I am surrounded by, my body never forgets. It hurts, it stings, but also where I am now, I take a moment feel it, refocus, stand back up tall, take a breath wipe away my tears, and know that my baby is shining down on me, through me, through her sissies, proud of us all, and saying GO MOMMY GO!!! Grab your dreams, grab your ambition, grab that happiness that lies right there before you, and I do. I'm holding on to it tightly, this journey God has placed before me, to help me to heal, and at the same time help others by reaching out through love.
No matter how hard I try to forget, what I do with my days, everyday, is the same thing I did for my Roo when she was alive here on earth. It's positive, it's giving, it's providing that strong sense of will to others, it's adding goodness to the world. it's emotional, it's giving, it's draining, BUT IT GIVES BACK SO MUCH MORE. Fills my spirit, fills my emotional emptiness, fills my heart.
Let the day begin, no more tears, there is much work to be done. I'll be smiling today, breathing, enjoying my healthy body (for the moment) and watch little miracles happen.
No matter how hard I try to forget, my body always remembers, and my spirit gets stronger as I feel God and Roo give me the will to reach my goals and dreams.
How wonderfully blessed am I??? I can't even put it into words. I miss Roo, I miss Tinker(she's at the ex-idiots), Blue is finally sleeping........I'm sitting here bracing myself for the 18th......This month...the 18th...I'll be sitting at Blue's gym meet, cheering her on, holding my breath as she begins each routine...thinking how things have come full circle. Blue started back at gym the day we buried Roo, now, she's a star gymnast, shining and beaming, reaching the podium, her room filled with medals and trophies. A young girl that works so hard, loves what she can do, and has a greater understanding on what a gift it is to be able to flip, fly, and twirl. All the while, knowing our Roo, is smiling down, watching us, watching me beam with pride, my heart swell with joy, as Blue continues to succeed and impress everyone with her will and spirit....it's no wonder those 2 had a bond like no other............2 sisters...one born into a broken body with a huge spirit...and one that is finally able to do what she loves...in memory of her sissy.....one word that sums up my life....BITTERSWEET. F*LUSHHHHHHHHHHHHHHHHHH mango martini.
Friday, January 9, 2009
I cry for Roo
I cry for you today sweet Roo.
So, here I sit with tears streaming down my face. I'm tired. Tired of many things and yet grateful for so many things. I feel conflicted inside I don't know I just guess it's where I am in my grief. I just sat and watched the video I made for Roo. I watch it everyday and most days it makes me happy but today it made me cry. Yes ,the 18th is coming, I am more emotional. Feelings that I thought I could bury and let go have reared their ugly head in my heart.
I don't have hatred, I don't have regret, I have a bit of anger, but that's only because of judgements placed on me by others. Now, I should be the 1st to know that I should not let what others think about me bother me. What bothers me so much and what I try so hard NOT to think about is the perception of what people think happened at the end of your life. I fought so hard for you, my baby, with every ounce of my being and soul. I spent so many hours on the phone with doctors, hours at the specialists, hours doing research, hours holding you while you seized and not being able to do a dayum thing about it, hours laying next to you watching you sleep praying out to GOD please SAVE MY BABY. When I was still in thatstinkinstate I believed that if I moved to Ohio, got better doctors, and all the medical equipment I needed to keep you alive that you would LIVE. I believed I could save you Roo, I believed with all the love I had for my sweet girl, I could SAVE MY ROO.
It wasn't until the day when I met with her epilepsy neuro and her metabolic neuro and they told me that she had atrophy of her brain, meaning it was shrinking and liquefying, and that she only had a year or two to live that the fear in me began. I had fear to let myself really feel love for her, knowing that she would be gone. I had fear about what it would be like to watch this horrible disease claim her life. I fought so HARD with every bit of my heart and soul. SHE FOUGHT SO HARD!!!! Even when I had to bring her to the hospital when I promised her I would never do that to her again, I did it because I needed my baby not to be in pain or to suffer.
The last 3 months of her life she screamed and screamed and seized and seized and struggled for every breath she took. We watched her heart rate run at 200 and held our breath wondering how long could her little heart stand that till it gave out. Then we would watch it plummet down to 60, 40, 30 and hold our breath and wonder is this it??? Is her little heart going to stop??? Over and Over and Over again for 3 months we watched, we held our breath, we prayed, we cried, what was so hard at the end? We couldn't hold her in our arms. Her breathing was so bad she couldn't tolerate us holding her. So, I would lay next to her cheek to cheek and hold her little hand and rub it. She would open her eyes and look at us and know we were there. She was suffering so bad but she would still give us her beautiful smile.
Today my arms are empty and I would give anything in the world to feel her one more time. I got my child the best doctors, nurses, equipment, I struggled so hard in making the decision to get her tummy surgery done in fear that by helping her I would lose her. But, she was strong she pulled through, and I saved her from dying from aspiration pneumonia. I got her vest, it helped with her lungs, and even in the end when her lungs were so bad we still used it because when she was seizing non stop and screaming, the comfort of the vest vibrations would soothe her.
She slipped away more times then I can count and each time we thought THIS IS IT!! They would call me in the room and bam! She would come right back. She fought and hung on day after day. Each day, we thought, this is the day and another day passed and she was still here. It was so frustrating to watch her hurt and not want to let her go. I finally stopped saying to myself, today is the day, and just soaked up every minute she was with us. I got mad at her.
I'm so sorry, Roo, I got mad at you, Mommy just didn't understand why you chose to suffer and hang on so long, I just couldn't bear it. I finally realized, you had your own plan, and you were going to go HOME in your own way. I made peace and said OK baby, you and God know when your time is, and I will stay by your side, I will sing you your song to help you stop crying, I will hold your head so you can fall asleep, I will hold your arm to keep it from moving so you can rest sweet baby. It hurts so bad to know that I knew, your Daddy knew, your nurses knew, everyone around you knew that you were going to die and some people think that Mommy wanted that for you! It hurts Roo, it hurts! I sit here and cry, my heart breaks, and I'm mad at myself for letting myself feel hurt by this. Roo, you know how hard mommy fought for your life. To give you the best life! But God's plan was for you to be here only a short time. Today is one of the days I don't understand it. I don't want to question God and say why?? why my baby??? why me?? why my daughters?? why do we all have to have this pain and why did you have to have that horrible disease??? I don't want to question why! I want everybody to see that from the day you were born that I fought for you to live. Even when we were in thatstinkingstate and they didn't want to give you your feeding tube because the doctors said you were terminal I wouldn't accept that! I fought and begged and pleaded for that tube! And, in the end that's what people think I did to make you leave. Roo how can they not understand???????? I don't get it! Losing you, your journey here on earth is the hardest most painful experience of my life. I'm sitting her just crying, I tell myself all that matters is that I know that I DID EVERYTHING I COULD! I know the only thing that matters is that you know that Mommy tried her best to give you the most and to save you. I know with every sign you show me your telling me it's OK.
Some days I just can't stand this pain. I can't stand feeling selfish. I want you back here in my arms, I can't stand feeling guilty for wanting you back, when you suffered so much at the end. I can't stand that I couldn't protect you and things were made so much worse. It shouldn't matter to me what people think because I know the truth. I know what's in my heart, I'm the one that was there. No one can know what this pain is like. Only other mothers that have lost their children. Especially, the mothers that have lost their children to this ugly disease.
Roo, I know you wouldn't want me to feel so sad, sitting here crying my eyes, and heart out. I know you don't want that for Mommy. I know you want Mommy to have peace and feel joy again and I try for you, Roo, I do. But, then I have my days like today where the tears just keep flowing and my heart is just in pieces and I wish that people could just see that you fought so hard to stay with us, you really really did, but God needed you back with him. All Mommy could do was make you comfortable on your journey back to God and heaven. I didn't know until about a month after you died that day there was no day nurse. I knew you were going to leave when you were alone, which was pretty hard to do being that you were never alone ever at the end. I know you must have walked right into heaven after the night nurse left. When you knew, no one else would be coming ,and that me , Daddy, and sissy were still sleeping. You lil schooch! I knew that you were going to go on your own time. I think you knew Mommy wouldn't be able to stand the memory of your last breath.
I can't stand the memory in my head of waking up and looking up at Daddy checking for your heart beat with the stethoscope already knowing that you were GONE. Nobody has to live with that memory or image in their head. If only they knew Roo, how then, could they say that I wanted that for you???? I try so hard to remember the good times and slowly but surely I can............but the memory that haunts me the most is the day I woke up and you were gone. The way you looked..........I can't stand the memory in my mind and nobody has to live with that but me and Daddy.
Daddy gave you your last bath that day. Mommy just couldn't do it and I knew it was important for Daddy to have that special time with you. It felt like forever, he was washing you, and giving you your last bath. I could hear him crying through the bathroom. Then, in the bedroom it felt like it took him forever to get you dressed. In your orange pooh bear outfit, Mommy's favorite. Daddy made you look so beautiful. You smelled so pretty with your special lotion. Mommy still wears it everyday so i have a little bit of you with me. I held you and held you, knowing that soon I had to call the funeral home. I just couldn't bear to have them come and take you from me. I wrapped you in your pooh bear blanket, took a deep breath, I remember carrying you downstairs, and placing you on the stretcher. You looked so small on that big stretcher. I kissed your sweet smelling cheek and told you I would see you again in a day for the last time. After that, I don't really remember anything. I placed you on that stretcher and for the weeks and months following my mind, heart, and soul went with you.
I hurt so bad, I hurt the people around me, I couldn't stand living without you, I didn't want to live anymore. But you and God kept telling me I had to. I had to, your sisters needed me. So, Mommy reached out, got help, and since then I have been better. I have learned how to grieve you and miss you in a better way. Without hurting myself or hurting those around me. When my tears fall, I'm by myself. I keep this all inside. Those around me know I'm hurting but they cannot understand and most times I don't let them see it. Today here I am, typing it all out, putting it out there.
I shouldn't care about those who judge me. For there is only one judgement that counts and that is Gods. I would never do anything that would compromise me getting into heaven because I have known and always knew that is where I will be reunited with my baby. I will get to see her whole and perfect and there is nothing I will or could do to keep that from happening. So, now I live each day to make all of my girls proud. It is so hard some days and yes the days with peace come a little more with time. But, I will always have these days when I cry for my sweet Roo. My sweet love. when I yearn for her smell, to hold her, to see her smile, hear her laugh, brush her hair, hear her cry because she's by herself and wants company, see her try so hard to play, see her try so hard to live.
Roo please help Mommy today. I don't want to cry all day. but I'm crying for you!!! I miss you soooooo much!!! No one will ever know, I just feel like no matter what I do no one will ever understand, and it bothers Mommy so much that people think these things that are sooooo wrong! I cry for you today my sweet Roo. Mommy promises that I will try to be happy, to make each day good, and I know that on these days, God and you, will give me the strength to withstand the pain, to walk through it, to be able to overcome some of it. I cry for you today sweet Roo. I sit here and I cry..............no one will ever know or understand this pain. All mommy can do is know I did my best, continue everyday to do my best, make you proud of me, and be a good person. I love you so much Roo! I imagine you chasing those butterflies and being with all the other angel babies that have gone to heaven whom mommy loves so much. I can hear you, saying to my heart, mommy don't cry because where you are you are free from pain and happy.
I cry for you today sweet Roo. You and God know what my prayers are and sometimes they aren't quick to be answered but I know that you will answer these prayers of mine. Till we are able to hold each other again sweet girl.....
F*Lushhhhhhhhhhhhhhhhh
So, here I sit with tears streaming down my face. I'm tired. Tired of many things and yet grateful for so many things. I feel conflicted inside I don't know I just guess it's where I am in my grief. I just sat and watched the video I made for Roo. I watch it everyday and most days it makes me happy but today it made me cry. Yes ,the 18th is coming, I am more emotional. Feelings that I thought I could bury and let go have reared their ugly head in my heart.
I don't have hatred, I don't have regret, I have a bit of anger, but that's only because of judgements placed on me by others. Now, I should be the 1st to know that I should not let what others think about me bother me. What bothers me so much and what I try so hard NOT to think about is the perception of what people think happened at the end of your life. I fought so hard for you, my baby, with every ounce of my being and soul. I spent so many hours on the phone with doctors, hours at the specialists, hours doing research, hours holding you while you seized and not being able to do a dayum thing about it, hours laying next to you watching you sleep praying out to GOD please SAVE MY BABY. When I was still in thatstinkinstate I believed that if I moved to Ohio, got better doctors, and all the medical equipment I needed to keep you alive that you would LIVE. I believed I could save you Roo, I believed with all the love I had for my sweet girl, I could SAVE MY ROO.
It wasn't until the day when I met with her epilepsy neuro and her metabolic neuro and they told me that she had atrophy of her brain, meaning it was shrinking and liquefying, and that she only had a year or two to live that the fear in me began. I had fear to let myself really feel love for her, knowing that she would be gone. I had fear about what it would be like to watch this horrible disease claim her life. I fought so HARD with every bit of my heart and soul. SHE FOUGHT SO HARD!!!! Even when I had to bring her to the hospital when I promised her I would never do that to her again, I did it because I needed my baby not to be in pain or to suffer.
The last 3 months of her life she screamed and screamed and seized and seized and struggled for every breath she took. We watched her heart rate run at 200 and held our breath wondering how long could her little heart stand that till it gave out. Then we would watch it plummet down to 60, 40, 30 and hold our breath and wonder is this it??? Is her little heart going to stop??? Over and Over and Over again for 3 months we watched, we held our breath, we prayed, we cried, what was so hard at the end? We couldn't hold her in our arms. Her breathing was so bad she couldn't tolerate us holding her. So, I would lay next to her cheek to cheek and hold her little hand and rub it. She would open her eyes and look at us and know we were there. She was suffering so bad but she would still give us her beautiful smile.
Today my arms are empty and I would give anything in the world to feel her one more time. I got my child the best doctors, nurses, equipment, I struggled so hard in making the decision to get her tummy surgery done in fear that by helping her I would lose her. But, she was strong she pulled through, and I saved her from dying from aspiration pneumonia. I got her vest, it helped with her lungs, and even in the end when her lungs were so bad we still used it because when she was seizing non stop and screaming, the comfort of the vest vibrations would soothe her.
She slipped away more times then I can count and each time we thought THIS IS IT!! They would call me in the room and bam! She would come right back. She fought and hung on day after day. Each day, we thought, this is the day and another day passed and she was still here. It was so frustrating to watch her hurt and not want to let her go. I finally stopped saying to myself, today is the day, and just soaked up every minute she was with us. I got mad at her.
I'm so sorry, Roo, I got mad at you, Mommy just didn't understand why you chose to suffer and hang on so long, I just couldn't bear it. I finally realized, you had your own plan, and you were going to go HOME in your own way. I made peace and said OK baby, you and God know when your time is, and I will stay by your side, I will sing you your song to help you stop crying, I will hold your head so you can fall asleep, I will hold your arm to keep it from moving so you can rest sweet baby. It hurts so bad to know that I knew, your Daddy knew, your nurses knew, everyone around you knew that you were going to die and some people think that Mommy wanted that for you! It hurts Roo, it hurts! I sit here and cry, my heart breaks, and I'm mad at myself for letting myself feel hurt by this. Roo, you know how hard mommy fought for your life. To give you the best life! But God's plan was for you to be here only a short time. Today is one of the days I don't understand it. I don't want to question God and say why?? why my baby??? why me?? why my daughters?? why do we all have to have this pain and why did you have to have that horrible disease??? I don't want to question why! I want everybody to see that from the day you were born that I fought for you to live. Even when we were in thatstinkingstate and they didn't want to give you your feeding tube because the doctors said you were terminal I wouldn't accept that! I fought and begged and pleaded for that tube! And, in the end that's what people think I did to make you leave. Roo how can they not understand???????? I don't get it! Losing you, your journey here on earth is the hardest most painful experience of my life. I'm sitting her just crying, I tell myself all that matters is that I know that I DID EVERYTHING I COULD! I know the only thing that matters is that you know that Mommy tried her best to give you the most and to save you. I know with every sign you show me your telling me it's OK.
Some days I just can't stand this pain. I can't stand feeling selfish. I want you back here in my arms, I can't stand feeling guilty for wanting you back, when you suffered so much at the end. I can't stand that I couldn't protect you and things were made so much worse. It shouldn't matter to me what people think because I know the truth. I know what's in my heart, I'm the one that was there. No one can know what this pain is like. Only other mothers that have lost their children. Especially, the mothers that have lost their children to this ugly disease.
Roo, I know you wouldn't want me to feel so sad, sitting here crying my eyes, and heart out. I know you don't want that for Mommy. I know you want Mommy to have peace and feel joy again and I try for you, Roo, I do. But, then I have my days like today where the tears just keep flowing and my heart is just in pieces and I wish that people could just see that you fought so hard to stay with us, you really really did, but God needed you back with him. All Mommy could do was make you comfortable on your journey back to God and heaven. I didn't know until about a month after you died that day there was no day nurse. I knew you were going to leave when you were alone, which was pretty hard to do being that you were never alone ever at the end. I know you must have walked right into heaven after the night nurse left. When you knew, no one else would be coming ,and that me , Daddy, and sissy were still sleeping. You lil schooch! I knew that you were going to go on your own time. I think you knew Mommy wouldn't be able to stand the memory of your last breath.
I can't stand the memory in my head of waking up and looking up at Daddy checking for your heart beat with the stethoscope already knowing that you were GONE. Nobody has to live with that memory or image in their head. If only they knew Roo, how then, could they say that I wanted that for you???? I try so hard to remember the good times and slowly but surely I can............but the memory that haunts me the most is the day I woke up and you were gone. The way you looked..........I can't stand the memory in my mind and nobody has to live with that but me and Daddy.
Daddy gave you your last bath that day. Mommy just couldn't do it and I knew it was important for Daddy to have that special time with you. It felt like forever, he was washing you, and giving you your last bath. I could hear him crying through the bathroom. Then, in the bedroom it felt like it took him forever to get you dressed. In your orange pooh bear outfit, Mommy's favorite. Daddy made you look so beautiful. You smelled so pretty with your special lotion. Mommy still wears it everyday so i have a little bit of you with me. I held you and held you, knowing that soon I had to call the funeral home. I just couldn't bear to have them come and take you from me. I wrapped you in your pooh bear blanket, took a deep breath, I remember carrying you downstairs, and placing you on the stretcher. You looked so small on that big stretcher. I kissed your sweet smelling cheek and told you I would see you again in a day for the last time. After that, I don't really remember anything. I placed you on that stretcher and for the weeks and months following my mind, heart, and soul went with you.
I hurt so bad, I hurt the people around me, I couldn't stand living without you, I didn't want to live anymore. But you and God kept telling me I had to. I had to, your sisters needed me. So, Mommy reached out, got help, and since then I have been better. I have learned how to grieve you and miss you in a better way. Without hurting myself or hurting those around me. When my tears fall, I'm by myself. I keep this all inside. Those around me know I'm hurting but they cannot understand and most times I don't let them see it. Today here I am, typing it all out, putting it out there.
I shouldn't care about those who judge me. For there is only one judgement that counts and that is Gods. I would never do anything that would compromise me getting into heaven because I have known and always knew that is where I will be reunited with my baby. I will get to see her whole and perfect and there is nothing I will or could do to keep that from happening. So, now I live each day to make all of my girls proud. It is so hard some days and yes the days with peace come a little more with time. But, I will always have these days when I cry for my sweet Roo. My sweet love. when I yearn for her smell, to hold her, to see her smile, hear her laugh, brush her hair, hear her cry because she's by herself and wants company, see her try so hard to play, see her try so hard to live.
Roo please help Mommy today. I don't want to cry all day. but I'm crying for you!!! I miss you soooooo much!!! No one will ever know, I just feel like no matter what I do no one will ever understand, and it bothers Mommy so much that people think these things that are sooooo wrong! I cry for you today my sweet Roo. Mommy promises that I will try to be happy, to make each day good, and I know that on these days, God and you, will give me the strength to withstand the pain, to walk through it, to be able to overcome some of it. I cry for you today sweet Roo. I sit here and I cry..............no one will ever know or understand this pain. All mommy can do is know I did my best, continue everyday to do my best, make you proud of me, and be a good person. I love you so much Roo! I imagine you chasing those butterflies and being with all the other angel babies that have gone to heaven whom mommy loves so much. I can hear you, saying to my heart, mommy don't cry because where you are you are free from pain and happy.
I cry for you today sweet Roo. You and God know what my prayers are and sometimes they aren't quick to be answered but I know that you will answer these prayers of mine. Till we are able to hold each other again sweet girl.....
F*Lushhhhhhhhhhhhhhhhh
Wednesday, January 7, 2009
Finding Balance Part 1
Wednesday, May 30, 2007
Finding Balance part 1
Finding balance is proving to more challenging lately. I have 2 wonderful, amazing, beautiful, and brilliant daughters. For 2 1/2yrs they were sharing their childhood together, day in, day out. Then Roo came along and all of our lives were tossed upside down and all around and this Mommy had to make some pretty tough choices. I've had to make some pretty hard decisions over the past 3 yrs and some of them have been really great for my girls and others well not so great.
Blue Bell, wow, what a smart little whippersnapper that kid is. I'll never forget the day she asked me if Roo was going to die. We didn't even have a dx for Roo yet but Blue she just knew in her heart that something wasn't right. Blue had such a strong connection and bond with Roo it surpasses anything in life I've ever seen between 2 people. She was the 1st one to get Roo to smile. Roo didn't smile until she was about 6 months old and when she started well it was a lot of effort and goofiness to get her to do it again. Blue was also the 1st one to get Roo to laugh, somewhere between 7 and 8 months old. I was in the other room and thought Roo was crying. I knew Blue Bell had something to do with that noise I was hearing and came storming into the living room to find Blue laying next to her sissie, singing to her, and Roo laughing up a storm. What an exciting day!!!!! I said BB, how did you do that?????? Well Mommy I just sang her Twinkle Twinkle it always gets me and Tinker to laugh and smile when you sing it silly. Roo, the schooch that she is (I hate saying was) would only smile the 1st time we would sing it to her. If you weren't there in the room when someone started singing the song and thought you could get another smile you were wrong. Just once, that's it no repeat. So, us girls, being the strong-willed girlies we are got out all our bells and whistles and did everything silly you could imagine and before you knew it Roo was laughing and smiling alllllllllll the time. Finally, after months of waiting for her cooing, smiling, laughing, things that all should have happened in the 1st months of her life, all came together, and it was amazing and beautiful.
Well, as usual I digress. I was going to write about this past weekend and having to chose between doing this or that to make the Tinker happy or Blue. Didn't know all that stuff about Roo was going to come out but there it is. F*Lushhhhhhhhhh
Finding Balance part 1
Finding balance is proving to more challenging lately. I have 2 wonderful, amazing, beautiful, and brilliant daughters. For 2 1/2yrs they were sharing their childhood together, day in, day out. Then Roo came along and all of our lives were tossed upside down and all around and this Mommy had to make some pretty tough choices. I've had to make some pretty hard decisions over the past 3 yrs and some of them have been really great for my girls and others well not so great.
Blue Bell, wow, what a smart little whippersnapper that kid is. I'll never forget the day she asked me if Roo was going to die. We didn't even have a dx for Roo yet but Blue she just knew in her heart that something wasn't right. Blue had such a strong connection and bond with Roo it surpasses anything in life I've ever seen between 2 people. She was the 1st one to get Roo to smile. Roo didn't smile until she was about 6 months old and when she started well it was a lot of effort and goofiness to get her to do it again. Blue was also the 1st one to get Roo to laugh, somewhere between 7 and 8 months old. I was in the other room and thought Roo was crying. I knew Blue Bell had something to do with that noise I was hearing and came storming into the living room to find Blue laying next to her sissie, singing to her, and Roo laughing up a storm. What an exciting day!!!!! I said BB, how did you do that?????? Well Mommy I just sang her Twinkle Twinkle it always gets me and Tinker to laugh and smile when you sing it silly. Roo, the schooch that she is (I hate saying was) would only smile the 1st time we would sing it to her. If you weren't there in the room when someone started singing the song and thought you could get another smile you were wrong. Just once, that's it no repeat. So, us girls, being the strong-willed girlies we are got out all our bells and whistles and did everything silly you could imagine and before you knew it Roo was laughing and smiling alllllllllll the time. Finally, after months of waiting for her cooing, smiling, laughing, things that all should have happened in the 1st months of her life, all came together, and it was amazing and beautiful.
Well, as usual I digress. I was going to write about this past weekend and having to chose between doing this or that to make the Tinker happy or Blue. Didn't know all that stuff about Roo was going to come out but there it is. F*Lushhhhhhhhhh
Monday, January 5, 2009
She went home....
October 2008
Tinker Tot was just picked up by her Dad. I won't see her again till Weds. We had 5 glorious days together. We got costumes for Halloween, pumpkins, there was gymnastics, smiles, laughter, cuddles.
I spent the last few days cleaning out the basement. My life was literally in shambles after Roo died. I'm still sorting through it all emotionally and in the physical sense. Sometimes, I think I'm OK with letting things that were Roo's go. As I was sorting through boxes I found, her rattle that also used to be Tinker's, her Strawberry Shortcake Jammies, syringes, her chart, stuffed animals, and the only picture that I had of her and Blue Bell on her 1st Halloween that I thought was long lost.
Weds. night I sat at gym watching Blue Bell and Tinker Tot and realized that I had not felt anything with the 18th quickly approaching. Halloween is coming the start of the holidays so to speak and the start of grieving in so many ways through memories. It's just when I think I have a handle on things, I don't. I haven't cried in months and well I just had a total meltdown. Tears are burning my cheeks, my heart is pounding, my head feels like its going to burst. I'm mourning my Roo and the piece of me that died with her.
In real life, there are few people that I talk to about her. Few people, that I feel understand. I get mean when I am hurting so bad inside and I hate that part of myself. I want to change it, I want the hurt to go away, but I know that the waves of grief will continue to hit me unexpectedly like this for the rest of my life. Where I was laughing, enjoying Blue and Tinker just 2 days ago, feeling peace, I should have known it was the calm before the emotional storm. Time does heal wounds in some ways. Roo was a piece of me, is a piece of me, that's missing. True, I'm a better, stronger, person. But, I don't like the part of me that hurts. I don't like the part of me that is selfish for wanting her back when she suffered so much. I don't like that I've had to fight so hard to just have some normalcy in my life.
I know Roo wouldn't want me sitting her crying my eyeballs out, I know she wouldn't want me sitting here with all this pain in my soul, I know she wants me to be Happy. I have been happy, I've been enjoying Blue and Tinker, I've been trying the best I can. Pushing and stuffing the feelings down inside and pretending they don't exist isn't a way of dealing with the grief though, but it's the only way I know how. I don't want Tinker Tot to see me grieving and it always happens that we have her on the 18th, making it so hard for me to hide my pain. As soon as she left tonight, I blew up, and then just sat and cried as Blue and I held each other. Blue said, "Mommy, I would rather see you cry then you be short with me." She also said, "Mommy, if you cry I will hold you till you feel better." That makes me feel so guilty.
When Roo was alive I cried in front of more people then I was comfortable with but never in front of Blue Bell. One of the many reasons I sent Tinker Tot to stay with her Dad was because I didn't want her to have a Mommy who cried everyday. **wiping tear from my cheek**
Blue Bell gave me all reasons why God has chosen this path for us. Her faith is so strong when mine is so weak. She said, "God has chosen this for us. Mommy, I know you hurt so bad, but it's all for a reason....." and then she listed as many as she could think of and yes, they were all good.
Maybe another one right now at this time is for Blue to see my crying. To know, it's OK to cry when you hurt instead of just being angry. That it's OK to feel totally overwhelmed at times with goodness and pain all at once that the only way to express it is through tears.
Halloween is coming. I'm fighting so many battles right now. I'm ripping off the emotional band aid and going through Roo's things. The memories that I was afraid were getting dim from time are clear and brisk in my mind.
Halloween is coming. That night I'll be trick or treating with my girls. I'll be walking house to house seeing everyone's reaction to the girlie's costumes and hear them say trick or treat and thank you. I'll be smiling, remembering, wishing, thanking, hopeful, reminiscent, hurting. I'll be me.....just missing my piece.
F*Lushhhhhhhhhhhhhhhhhhhhh
Tinker Tot was just picked up by her Dad. I won't see her again till Weds. We had 5 glorious days together. We got costumes for Halloween, pumpkins, there was gymnastics, smiles, laughter, cuddles.
I spent the last few days cleaning out the basement. My life was literally in shambles after Roo died. I'm still sorting through it all emotionally and in the physical sense. Sometimes, I think I'm OK with letting things that were Roo's go. As I was sorting through boxes I found, her rattle that also used to be Tinker's, her Strawberry Shortcake Jammies, syringes, her chart, stuffed animals, and the only picture that I had of her and Blue Bell on her 1st Halloween that I thought was long lost.
Weds. night I sat at gym watching Blue Bell and Tinker Tot and realized that I had not felt anything with the 18th quickly approaching. Halloween is coming the start of the holidays so to speak and the start of grieving in so many ways through memories. It's just when I think I have a handle on things, I don't. I haven't cried in months and well I just had a total meltdown. Tears are burning my cheeks, my heart is pounding, my head feels like its going to burst. I'm mourning my Roo and the piece of me that died with her.
In real life, there are few people that I talk to about her. Few people, that I feel understand. I get mean when I am hurting so bad inside and I hate that part of myself. I want to change it, I want the hurt to go away, but I know that the waves of grief will continue to hit me unexpectedly like this for the rest of my life. Where I was laughing, enjoying Blue and Tinker just 2 days ago, feeling peace, I should have known it was the calm before the emotional storm. Time does heal wounds in some ways. Roo was a piece of me, is a piece of me, that's missing. True, I'm a better, stronger, person. But, I don't like the part of me that hurts. I don't like the part of me that is selfish for wanting her back when she suffered so much. I don't like that I've had to fight so hard to just have some normalcy in my life.
I know Roo wouldn't want me sitting her crying my eyeballs out, I know she wouldn't want me sitting here with all this pain in my soul, I know she wants me to be Happy. I have been happy, I've been enjoying Blue and Tinker, I've been trying the best I can. Pushing and stuffing the feelings down inside and pretending they don't exist isn't a way of dealing with the grief though, but it's the only way I know how. I don't want Tinker Tot to see me grieving and it always happens that we have her on the 18th, making it so hard for me to hide my pain. As soon as she left tonight, I blew up, and then just sat and cried as Blue and I held each other. Blue said, "Mommy, I would rather see you cry then you be short with me." She also said, "Mommy, if you cry I will hold you till you feel better." That makes me feel so guilty.
When Roo was alive I cried in front of more people then I was comfortable with but never in front of Blue Bell. One of the many reasons I sent Tinker Tot to stay with her Dad was because I didn't want her to have a Mommy who cried everyday. **wiping tear from my cheek**
Blue Bell gave me all reasons why God has chosen this path for us. Her faith is so strong when mine is so weak. She said, "God has chosen this for us. Mommy, I know you hurt so bad, but it's all for a reason....." and then she listed as many as she could think of and yes, they were all good.
Maybe another one right now at this time is for Blue to see my crying. To know, it's OK to cry when you hurt instead of just being angry. That it's OK to feel totally overwhelmed at times with goodness and pain all at once that the only way to express it is through tears.
Halloween is coming. I'm fighting so many battles right now. I'm ripping off the emotional band aid and going through Roo's things. The memories that I was afraid were getting dim from time are clear and brisk in my mind.
Halloween is coming. That night I'll be trick or treating with my girls. I'll be walking house to house seeing everyone's reaction to the girlie's costumes and hear them say trick or treat and thank you. I'll be smiling, remembering, wishing, thanking, hopeful, reminiscent, hurting. I'll be me.....just missing my piece.
F*Lushhhhhhhhhhhhhhhhhhhhh
Saturday, December 27, 2008
I CRY FOR YOU
I cry for you today sweet Roo.
So, here I sit with tears streaming down my face. I'm tired. Tired of so many things and yet grateful for so many things. I feel so conflicted inside I don't know I just guess it's where I am in my grief. I just sat and watched the video I made for Roo. I watch it everyday and most days it makes me happy but today it made me cry. Yes ,the 18th is coming so I am more emotional. Feelings that I thought I could bury and let go have reared their ugly head in my heart. I don't have hatred, I don't have regret, I have a bit of anger, but that's only because of judgements placed on me by others. Now, I should be the 1st to know that I should not let what others think about me bother me. What bothers me so much and what I try so hard NOT to think about is the perception of what people think happened at the end of your life. I fought so hard for you, my baby, with every ounce of my being and soul. I spent so many hours on the phone with doctors, hours at the specialists, hours doing research, hours holding you while you seized and not being able to do a dayum thing about it, hours laying next to you watching you sleep praying out to GOD please SAVE MY BABY. When I was still in thatstinkinstate I believed that if I moved to Ohio and got better doctors and all the medical equipment I needed to keep you alive that you would LIVE. I believed that I could save you Roo, I believed that with all the love I had for my sweet girl that I could SAVE MY ROO.
It wasn't until the day when I met with her epilepsy neuro and her metabolic neuro and they told me that she had atrophy of her brain, meaning it was shrinking and liquefying and that she only had a year or two to live that the fear in me began. I had fear to let myself really feel love for her knowing that she would be gone. I had fear about what it would be like to watch this horrible disease claim her life. I fought so HARD with every bit of my heart and soul. SHE FOUGHT SO HARD!!!! Even when I had to bring her to the hospital when I promised her I would never do that to her again I did it because I needed my baby not to be in pain and to suffer.
The last 3 months of her life she screamed and screamed and seized and seized and struggled for every breath she took. We watched her heart rate run at 200 and held our breath wondering how long could her little heart stand that till it gave out. Then we would watch it plummet down to 60, 40, 30 and hold our breath and wonder is this it??? Is her little heart going to stop??? Over and Over and Over again for 3 months we watched, we held our breath, we prayed, we cried, what was so hard at the end was that we couldn't hold her in our arms. Her breathing was so bad that she couldn't tolerate us holding her. So I would lay next to her cheek to cheek and hold her little hand and rub it. She would open her eyes and look at us and know we were there she was suffering so bad but she would still give us that beautiful smile.
Today my arms are empty and I would give anything in the world to feel her one more time.
I got my child the best doctors, nurses, equipment, I struggled so hard in making the decision to get her tummy surgery done in fear that by helping her I would lose her. But she was strong she pulled through and I saved her from dying from aspiration pneumonia. I got her vest for her and it helped with her lungs and even in the end when her lungs were so bad we still used it because when she was seizing non stop and screaming the comfort of the vest vibrations would soothe her.
She slipped away more times then I can count and each time we thought THIS IS IT!! they would call me in the room and bam! she would come right back. She fought and hung on day after day. Each day us thinking this is the day and another day passing that she was still here. It was so frustrating to watch her hurt but not wanting to let her go. I finally stopped saying to myself today is the day and just soaked up every minute more that she was with us. I got mad at her.
I'm so sorry Roo I got mad at you, Mommy just didn't understand why you chose to suffer and hang on so long I just couldn't bear it. I finally realized that you had your own plan and that you were going to go HOME in your own way. I made peace with that and said OK baby you and God know when your time is and I will stay by your side and I will sing you your song to help you stop crying, I will hold your head so you can fall asleep, I will hold your arm to keep it from moving so you can rest sweet baby.
It hurts so bad to know that I knew, your Daddy knew, your nurses knew, everyone around you knew that you were going to die and some people think that mommy wanted that for you! It hurts Roo it hurts! I sit here and cry and my heart breaks and I'm mad at myself for letting myself feel hurt by this. Roo, you know how hard mommy fought for your life. To give you the best life! But God's plan was for you to be here only a short time. Today is one of the days I don't understand it. I don't want to question God and say why?? why my baby??? why me?? why my daughters?? why do we all have to have this pain and why did you have to have that horrible disease???
I don't want to question why! I want everybody to see that from the day you were born that I fought for you to live. Even when we were in thatstinkingstate and they didn't want to give you your feeding tube because the doctors said you were terminal I wouldn't accept that! I fought and begged and pleaded for that tube! And, in the end that's what people think I did to make you leave. Roo how can they not understand???????? I don't get it! Losing you, your journey here on earth is the hardest most painful experience of my life. I'm sitting her just crying I tell myself all that matters is that I know that I DID EVERYTHING I COULD! I know the only thing that matters is that you know that Mommy tried her best to give you the most and to save you. I know with every sign you show me your telling me it's OK. Some days I just can't stand this pain. I can't stand feeling selfish that I want you back here in my arms, I can't stand feeling guilty for wanting you back when you suffered so much at the end. I can't stand that I couldn't protect you and things were made so much worse.
It shouldn't matter to me what people think because I know the truth. I know what's in my heart I'm the one that was there. No one can know what this pain is like only other mothers that have lost their children. especially those mothers that have lost their children to this ugly disease.
Roo, I know you wouldn't want me to feel so sad to be sitting here crying my eyes and heart out. I know you don't want that for Mommy. I know you want Mommy to have peace and feel joy again and I try for you, Roo, I do. But, then I have my days like today where the tears just keep flowing and my heart is just in pieces and I wish that people could just see that you fought so hard to stay with us, you really really did, but God needed you back with him. All Mommy could do was make you as comfortable as I could on your journey back to God and to heaven.
I didn't know until about a month after you died that day there was no day nurse. I knew you were going to leave when you were alone, which was pretty hard to do being that you were never alone ever at the end. I know you must have walked right into heaven after the night nurse left. When you knew no one else would be coming and that me , Daddy, and sissy were still sleeping. You lil schooch! I knew that you were going to go on your own time. I think you knew Mommy wouldn't be able to stand the memory of your last breath. I can't stand the memory in my head of waking up and looking up at Daddy checking for your heart beat with the stethoscope already knowing that you were GONE.
Nobody has to live with that memory that image in their head. If only they knew Roo, how then could they say that I wanted that for you???? I try so hard to remember the good times and slowly but surely I can............but the memory that haunts me the most is the day I woke up and you were gone. The way you looked..........I can't stand that image in my mind and nobody has to live with that but me and Daddy.
Daddy gave you your last bath that day. Mommy just couldn't do it and I knew it was important for Daddy to have that special time with you. It felt like forever, he was washing you and giving you your last bath. I could hear him crying through the bathroom. Then, in the bedroom it felt like it took him forever to get you dressed. In your orange pooh bear, outfit Mommy's favorite. Daddy made you look so beautiful. You smelled so pretty with your special lotion. Mommy still wears it everyday so i have a little bit of you with me. I held you and held you knowing that soon I had to call the funeral home. I just couldn't bear to have them come and take you from me. I wrapped you in your pooh bear blanket and took a deep breath and I remember carrying you downstairs and placing you on the stretcher you looked so small on that big stretcher. kissing your cheek telling you I would see you again in a day for the last time. After that, I don't really remember anything. I placed you on that stretcher and for the weeks and months following my mind, heart, and soul went with you. I hurt so bad, I hurt the people around me, I couldn't stand living without you, I didn't want to live anymore. But you and God kept telling me I had to. I had to, your sisters needed me.
So, mommy reached out and got help and since then I have been better. I have learned how to grieve you and miss you in a better way. Without hurting myself or hurting those around me. When my tears fall I'm by myself. I keep this all inside. Those around me know I'm hurting but they cannot understand and most times I don't let them see it. Today here I am, typing it all out, putting it out there.
I shouldn't care about those who judge me. For there is only one judgement that counts and that is Gods. I would never do anything that would compromise me getting into heaven because i have known and always knew that is where I will be reunited with my baby. I will get to see her whole and perfect and there is nothing I will or could do to keep that from happening. so now I live each day to make all of my girls proud. It is so hard some days and yes the days with peace come a little more with time. But, I will always have these days when I cry for my sweet Roo. My sweet love. when I yearn for her smell, to hold her, to see her smile, hear her laugh, brush her hair, hear her cry because she's by herself and wants company, see her try so hard to play, see her try so hard to live.
Roo please help mommy today. I don't want to cry all day. but I'm crying for you!!! I miss you soooooo much!!! No one will ever know, I just feel like no matter what I do no one will ever understand and it bothers Mommy so much that people think these things that are sooooo wrong!
I cry for you today my sweet Roo. Mommy promises that I will try to be happy, to make each day good, and I know that on these days that God and you will give me the strength to withstand the pain, to walk through it to be able to overcome some of it. I cry for you today sweet Roo. I sit here and I cry..............no one will ever know or understand this pain. All mommy can do is know I did my best and continue everyday to do my best and make you proud of me and be a good person. I love you so much Roo! I imagine you chasing those butterflies and being with all the other angel babies that have gone to heaven whom mommy loves so much. I can hear you, saying to my heart, mommy don't cry because where you are you are free from pain and happy.
I cry for you today sweet Roo. You and God know what my prayers are and sometimes they aren't quick to be answered but I know that you will answer these prayers of mine. Till we are able to hold each other again sweet girl.....
F*Lushhhhhhhhhhhhhhhhh
So, here I sit with tears streaming down my face. I'm tired. Tired of so many things and yet grateful for so many things. I feel so conflicted inside I don't know I just guess it's where I am in my grief. I just sat and watched the video I made for Roo. I watch it everyday and most days it makes me happy but today it made me cry. Yes ,the 18th is coming so I am more emotional. Feelings that I thought I could bury and let go have reared their ugly head in my heart. I don't have hatred, I don't have regret, I have a bit of anger, but that's only because of judgements placed on me by others. Now, I should be the 1st to know that I should not let what others think about me bother me. What bothers me so much and what I try so hard NOT to think about is the perception of what people think happened at the end of your life. I fought so hard for you, my baby, with every ounce of my being and soul. I spent so many hours on the phone with doctors, hours at the specialists, hours doing research, hours holding you while you seized and not being able to do a dayum thing about it, hours laying next to you watching you sleep praying out to GOD please SAVE MY BABY. When I was still in thatstinkinstate I believed that if I moved to Ohio and got better doctors and all the medical equipment I needed to keep you alive that you would LIVE. I believed that I could save you Roo, I believed that with all the love I had for my sweet girl that I could SAVE MY ROO.
It wasn't until the day when I met with her epilepsy neuro and her metabolic neuro and they told me that she had atrophy of her brain, meaning it was shrinking and liquefying and that she only had a year or two to live that the fear in me began. I had fear to let myself really feel love for her knowing that she would be gone. I had fear about what it would be like to watch this horrible disease claim her life. I fought so HARD with every bit of my heart and soul. SHE FOUGHT SO HARD!!!! Even when I had to bring her to the hospital when I promised her I would never do that to her again I did it because I needed my baby not to be in pain and to suffer.
The last 3 months of her life she screamed and screamed and seized and seized and struggled for every breath she took. We watched her heart rate run at 200 and held our breath wondering how long could her little heart stand that till it gave out. Then we would watch it plummet down to 60, 40, 30 and hold our breath and wonder is this it??? Is her little heart going to stop??? Over and Over and Over again for 3 months we watched, we held our breath, we prayed, we cried, what was so hard at the end was that we couldn't hold her in our arms. Her breathing was so bad that she couldn't tolerate us holding her. So I would lay next to her cheek to cheek and hold her little hand and rub it. She would open her eyes and look at us and know we were there she was suffering so bad but she would still give us that beautiful smile.
Today my arms are empty and I would give anything in the world to feel her one more time.
I got my child the best doctors, nurses, equipment, I struggled so hard in making the decision to get her tummy surgery done in fear that by helping her I would lose her. But she was strong she pulled through and I saved her from dying from aspiration pneumonia. I got her vest for her and it helped with her lungs and even in the end when her lungs were so bad we still used it because when she was seizing non stop and screaming the comfort of the vest vibrations would soothe her.
She slipped away more times then I can count and each time we thought THIS IS IT!! they would call me in the room and bam! she would come right back. She fought and hung on day after day. Each day us thinking this is the day and another day passing that she was still here. It was so frustrating to watch her hurt but not wanting to let her go. I finally stopped saying to myself today is the day and just soaked up every minute more that she was with us. I got mad at her.
I'm so sorry Roo I got mad at you, Mommy just didn't understand why you chose to suffer and hang on so long I just couldn't bear it. I finally realized that you had your own plan and that you were going to go HOME in your own way. I made peace with that and said OK baby you and God know when your time is and I will stay by your side and I will sing you your song to help you stop crying, I will hold your head so you can fall asleep, I will hold your arm to keep it from moving so you can rest sweet baby.
It hurts so bad to know that I knew, your Daddy knew, your nurses knew, everyone around you knew that you were going to die and some people think that mommy wanted that for you! It hurts Roo it hurts! I sit here and cry and my heart breaks and I'm mad at myself for letting myself feel hurt by this. Roo, you know how hard mommy fought for your life. To give you the best life! But God's plan was for you to be here only a short time. Today is one of the days I don't understand it. I don't want to question God and say why?? why my baby??? why me?? why my daughters?? why do we all have to have this pain and why did you have to have that horrible disease???
I don't want to question why! I want everybody to see that from the day you were born that I fought for you to live. Even when we were in thatstinkingstate and they didn't want to give you your feeding tube because the doctors said you were terminal I wouldn't accept that! I fought and begged and pleaded for that tube! And, in the end that's what people think I did to make you leave. Roo how can they not understand???????? I don't get it! Losing you, your journey here on earth is the hardest most painful experience of my life. I'm sitting her just crying I tell myself all that matters is that I know that I DID EVERYTHING I COULD! I know the only thing that matters is that you know that Mommy tried her best to give you the most and to save you. I know with every sign you show me your telling me it's OK. Some days I just can't stand this pain. I can't stand feeling selfish that I want you back here in my arms, I can't stand feeling guilty for wanting you back when you suffered so much at the end. I can't stand that I couldn't protect you and things were made so much worse.
It shouldn't matter to me what people think because I know the truth. I know what's in my heart I'm the one that was there. No one can know what this pain is like only other mothers that have lost their children. especially those mothers that have lost their children to this ugly disease.
Roo, I know you wouldn't want me to feel so sad to be sitting here crying my eyes and heart out. I know you don't want that for Mommy. I know you want Mommy to have peace and feel joy again and I try for you, Roo, I do. But, then I have my days like today where the tears just keep flowing and my heart is just in pieces and I wish that people could just see that you fought so hard to stay with us, you really really did, but God needed you back with him. All Mommy could do was make you as comfortable as I could on your journey back to God and to heaven.
I didn't know until about a month after you died that day there was no day nurse. I knew you were going to leave when you were alone, which was pretty hard to do being that you were never alone ever at the end. I know you must have walked right into heaven after the night nurse left. When you knew no one else would be coming and that me , Daddy, and sissy were still sleeping. You lil schooch! I knew that you were going to go on your own time. I think you knew Mommy wouldn't be able to stand the memory of your last breath. I can't stand the memory in my head of waking up and looking up at Daddy checking for your heart beat with the stethoscope already knowing that you were GONE.
Nobody has to live with that memory that image in their head. If only they knew Roo, how then could they say that I wanted that for you???? I try so hard to remember the good times and slowly but surely I can............but the memory that haunts me the most is the day I woke up and you were gone. The way you looked..........I can't stand that image in my mind and nobody has to live with that but me and Daddy.
Daddy gave you your last bath that day. Mommy just couldn't do it and I knew it was important for Daddy to have that special time with you. It felt like forever, he was washing you and giving you your last bath. I could hear him crying through the bathroom. Then, in the bedroom it felt like it took him forever to get you dressed. In your orange pooh bear, outfit Mommy's favorite. Daddy made you look so beautiful. You smelled so pretty with your special lotion. Mommy still wears it everyday so i have a little bit of you with me. I held you and held you knowing that soon I had to call the funeral home. I just couldn't bear to have them come and take you from me. I wrapped you in your pooh bear blanket and took a deep breath and I remember carrying you downstairs and placing you on the stretcher you looked so small on that big stretcher. kissing your cheek telling you I would see you again in a day for the last time. After that, I don't really remember anything. I placed you on that stretcher and for the weeks and months following my mind, heart, and soul went with you. I hurt so bad, I hurt the people around me, I couldn't stand living without you, I didn't want to live anymore. But you and God kept telling me I had to. I had to, your sisters needed me.
So, mommy reached out and got help and since then I have been better. I have learned how to grieve you and miss you in a better way. Without hurting myself or hurting those around me. When my tears fall I'm by myself. I keep this all inside. Those around me know I'm hurting but they cannot understand and most times I don't let them see it. Today here I am, typing it all out, putting it out there.
I shouldn't care about those who judge me. For there is only one judgement that counts and that is Gods. I would never do anything that would compromise me getting into heaven because i have known and always knew that is where I will be reunited with my baby. I will get to see her whole and perfect and there is nothing I will or could do to keep that from happening. so now I live each day to make all of my girls proud. It is so hard some days and yes the days with peace come a little more with time. But, I will always have these days when I cry for my sweet Roo. My sweet love. when I yearn for her smell, to hold her, to see her smile, hear her laugh, brush her hair, hear her cry because she's by herself and wants company, see her try so hard to play, see her try so hard to live.
Roo please help mommy today. I don't want to cry all day. but I'm crying for you!!! I miss you soooooo much!!! No one will ever know, I just feel like no matter what I do no one will ever understand and it bothers Mommy so much that people think these things that are sooooo wrong!
I cry for you today my sweet Roo. Mommy promises that I will try to be happy, to make each day good, and I know that on these days that God and you will give me the strength to withstand the pain, to walk through it to be able to overcome some of it. I cry for you today sweet Roo. I sit here and I cry..............no one will ever know or understand this pain. All mommy can do is know I did my best and continue everyday to do my best and make you proud of me and be a good person. I love you so much Roo! I imagine you chasing those butterflies and being with all the other angel babies that have gone to heaven whom mommy loves so much. I can hear you, saying to my heart, mommy don't cry because where you are you are free from pain and happy.
I cry for you today sweet Roo. You and God know what my prayers are and sometimes they aren't quick to be answered but I know that you will answer these prayers of mine. Till we are able to hold each other again sweet girl.....
F*Lushhhhhhhhhhhhhhhhh
2004
Thursday, December 30, 2004
Happy New Year Everyone!!!!! Roo and I leave for Ohio on Sunday. We are going to be very very busy. The doctors up in Cleveland have lots of tests planned for her. On Monday, the 3rd, she will have an overnight EEG, Tues., She has another biopsy, and then in the afternoon we meet with an epilepsy doctor. Weds., They have 2 MRIs scheduled for her. Weds. afternoon we meet with Dr. C, Thursday, she sees the opthamologist and has an evoked potential test. I received the report from the neurologist from the Cleveland Clinic earlier this week. It was very thorough, he got all the info, and history right! He wants to test Roo for Krabbes disease and other Storage diseases. They did so many blood tests on her that haven't been done before. There wasn't enough blood to do the peroxisomal panel or the co enzyme Q tests. So, they will redraw some blood when we are up there this week. The doctors impression was........Severe, progressive encephalopathy, manifested by microcephaly, global delays, failure to thrive, severe hypotonia, mixed refractory epilepsy, and possible neuropathy. Of course, this was all stuff I already knew, but seeing it in black and white is always another punch to the stomach. Roo has been doing OK this week. She seems to have alot of days where she is very alert, alot where she only smiles a little bit ,and seems to be in her own world lately. Her seizures have come back full force. I believe she is having about 50-60 a week. Her breathing is good *knock on wood*. Please pray that we get through next week with no bumps in the road and pray for an answer for us. I really feel good with these new doctors. They said there is a 70% chance we will get a diagnosis. Hope everyone is blessed in this new year to come.
Those are hard words to read...still....but she is at peace.
F*Lush
p.s. I still wish she was here in my arms everyday.
Happy New Year Everyone!!!!! Roo and I leave for Ohio on Sunday. We are going to be very very busy. The doctors up in Cleveland have lots of tests planned for her. On Monday, the 3rd, she will have an overnight EEG, Tues., She has another biopsy, and then in the afternoon we meet with an epilepsy doctor. Weds., They have 2 MRIs scheduled for her. Weds. afternoon we meet with Dr. C, Thursday, she sees the opthamologist and has an evoked potential test. I received the report from the neurologist from the Cleveland Clinic earlier this week. It was very thorough, he got all the info, and history right! He wants to test Roo for Krabbes disease and other Storage diseases. They did so many blood tests on her that haven't been done before. There wasn't enough blood to do the peroxisomal panel or the co enzyme Q tests. So, they will redraw some blood when we are up there this week. The doctors impression was........Severe, progressive encephalopathy, manifested by microcephaly, global delays, failure to thrive, severe hypotonia, mixed refractory epilepsy, and possible neuropathy. Of course, this was all stuff I already knew, but seeing it in black and white is always another punch to the stomach. Roo has been doing OK this week. She seems to have alot of days where she is very alert, alot where she only smiles a little bit ,and seems to be in her own world lately. Her seizures have come back full force. I believe she is having about 50-60 a week. Her breathing is good *knock on wood*. Please pray that we get through next week with no bumps in the road and pray for an answer for us. I really feel good with these new doctors. They said there is a 70% chance we will get a diagnosis. Hope everyone is blessed in this new year to come.
Those are hard words to read...still....but she is at peace.
F*Lush
p.s. I still wish she was here in my arms everyday.
Mind.Is.Gone
Thursday, February 24, 2005
Well,l I think I have officially lost my mind. We went to the hospital today and had Roo's stomach emptying test done. Then we met with the seizure neuro and metabolic neuro. We talked with them both for 2hrs. It was probably the hardest doctors appt for Roo EVER. 1st, her seizures are out of control so we are going to try Topomax and see how that works. We are going to d/c the neurotin and keep the trileptal the same. We have another video EEG scheduled for the end of March but the Doctor wants to get her in asap. OK so here goes....I ask why her seizures seem to be increasing and are getting longer. I finally got the results of her MRI that was done last month and it wasn't good. She has cerebral atrophy not just in one part of her brain but, ALL, yes, ALL of her brain. It is small and shrinking and to quote the doc......."globally demylenating." Lovely........how is it that I know that she is so sick and all of this is so bad but when I hear the doc finally say the words it feels like 10,000 18 wheeler trucks flattened me that many times. Blah Blah. So there was more discussion about her brain and how the brain works and how hers isn't working. I can't remember specific details cause its 3:30 am and I CAN'T SLEEP. So, the nicest sweetest doctor, the metabolic doctor, comes in and talks with us. He wanted to know where I stood on what measures that should be taken for Roo. I told him that I wanted her DNR, I never want a trach for her, and that my main and only concern is making her comfortable. The doctor told me he was very proud of me because he could tell that I have put much thought into all my decisions and told me I was strong. HA HA! got him fooled too. We discussed once again not being able to find a diagnosis for Roo and maybe doing an autopsy I told him I have to think about that one. We talked about how Roo is having more and more days of not being there and he told me yet again that the disease is progressing. I asked him how fast and he said pretty quickly.....giving us a window of less then 1yr to 2yr at the most. But miracles always happen right! I'm just so afraid of losing my Roo. Poor Roo. She can't do much now and if she progresses to the point that she doesn't smile, , laugh or anything what is left really......I am such a mess I am having such a bad, bad, bad day. The hurt inside is more pain then I have ever felt in my life. I used to be able to just give her 2 meds put her to bed and that was it. Her bedtime routine since she got pneumonia is crazy. I draw up all the meds, neurotin, which we are going to slowly wean her off of, trileptal, pepcid, dissolve the roblin in a syringe , tylenol cause the poor buglette is teething something fierce. Then, it's giving her all the meds through her mickey button, then suction the nose, suction the mouth, give breathing treatment, then chest pt and half the time she actually sounds OK for maybe 20 min. Usually, you can hear her breathing clear across the house. Everything is just too much right now. I am so afraid of going to bed because everyday just gets worse and worse. I say, "OK, I'll take it all one thing at a time." I get over one obstacle then there's another and another and another. Yes , I know that's life, but I need a little break. I think my ex and his wife are upset with me because I didn't have Tinker Tot over today but I just couldn't. I had to go to the hospital for Roo, see Blue Bel,l and I'm just worn out.
So many emotions I can't even type them all. All I can say, is that I am just a total complete mess but I'm doing everything I can for these 2 special girls of mine. I love them both so much and they love each other both so much.................Why does there have to be so much pain???????? I am angry today. Angry like I never have been before. I can't kiss my girls boo's boo's and make them all better. It's killing me inside ripping my heart in 2. I have to re find that positive part of myself. I am most definitely doom and gloom. I am going to look into setting up Roo's funeral arraignments. It sounds morbid and even if she doesn't go until 4 yrs from now, I still want to have it all figured out because I don't wanna do it when I'm a total wreck. HOPE I STILL BELIEVE.
F*LUSHHHHHHHHHHHHHH
Well,l I think I have officially lost my mind. We went to the hospital today and had Roo's stomach emptying test done. Then we met with the seizure neuro and metabolic neuro. We talked with them both for 2hrs. It was probably the hardest doctors appt for Roo EVER. 1st, her seizures are out of control so we are going to try Topomax and see how that works. We are going to d/c the neurotin and keep the trileptal the same. We have another video EEG scheduled for the end of March but the Doctor wants to get her in asap. OK so here goes....I ask why her seizures seem to be increasing and are getting longer. I finally got the results of her MRI that was done last month and it wasn't good. She has cerebral atrophy not just in one part of her brain but, ALL, yes, ALL of her brain. It is small and shrinking and to quote the doc......."globally demylenating." Lovely........how is it that I know that she is so sick and all of this is so bad but when I hear the doc finally say the words it feels like 10,000 18 wheeler trucks flattened me that many times. Blah Blah. So there was more discussion about her brain and how the brain works and how hers isn't working. I can't remember specific details cause its 3:30 am and I CAN'T SLEEP. So, the nicest sweetest doctor, the metabolic doctor, comes in and talks with us. He wanted to know where I stood on what measures that should be taken for Roo. I told him that I wanted her DNR, I never want a trach for her, and that my main and only concern is making her comfortable. The doctor told me he was very proud of me because he could tell that I have put much thought into all my decisions and told me I was strong. HA HA! got him fooled too. We discussed once again not being able to find a diagnosis for Roo and maybe doing an autopsy I told him I have to think about that one. We talked about how Roo is having more and more days of not being there and he told me yet again that the disease is progressing. I asked him how fast and he said pretty quickly.....giving us a window of less then 1yr to 2yr at the most. But miracles always happen right! I'm just so afraid of losing my Roo. Poor Roo. She can't do much now and if she progresses to the point that she doesn't smile, , laugh or anything what is left really......I am such a mess I am having such a bad, bad, bad day. The hurt inside is more pain then I have ever felt in my life. I used to be able to just give her 2 meds put her to bed and that was it. Her bedtime routine since she got pneumonia is crazy. I draw up all the meds, neurotin, which we are going to slowly wean her off of, trileptal, pepcid, dissolve the roblin in a syringe , tylenol cause the poor buglette is teething something fierce. Then, it's giving her all the meds through her mickey button, then suction the nose, suction the mouth, give breathing treatment, then chest pt and half the time she actually sounds OK for maybe 20 min. Usually, you can hear her breathing clear across the house. Everything is just too much right now. I am so afraid of going to bed because everyday just gets worse and worse. I say, "OK, I'll take it all one thing at a time." I get over one obstacle then there's another and another and another. Yes , I know that's life, but I need a little break. I think my ex and his wife are upset with me because I didn't have Tinker Tot over today but I just couldn't. I had to go to the hospital for Roo, see Blue Bel,l and I'm just worn out.
So many emotions I can't even type them all. All I can say, is that I am just a total complete mess but I'm doing everything I can for these 2 special girls of mine. I love them both so much and they love each other both so much.................Why does there have to be so much pain???????? I am angry today. Angry like I never have been before. I can't kiss my girls boo's boo's and make them all better. It's killing me inside ripping my heart in 2. I have to re find that positive part of myself. I am most definitely doom and gloom. I am going to look into setting up Roo's funeral arraignments. It sounds morbid and even if she doesn't go until 4 yrs from now, I still want to have it all figured out because I don't wanna do it when I'm a total wreck. HOPE I STILL BELIEVE.
F*LUSHHHHHHHHHHHHHH
Sunday, January 13, 2008
Roo's 1st Birthday
Friday, December 17, 2004
HAPPY BIRTHDAY TO MY PRINCESS Roo!!!!!!!!!!!!!!!!!! I can't believe that Roo is 1 today. When she was born I had no clue the journey we were about to begin. I had no clue that in this last year Roo would help me to heal family relationships, teach me how strong I can be, bring Tinker's Dad back into her life, and touch everyone that meets her. I have learned so much from this little girl of mine, so much about life. I cherish everyday I have with her. I don't think that I will ever be able to truly accept everything that has happened to her. Bu,t I believe that I am ready to live again for my children, to give Roo much love and happiness everyday as she gives to those around her. All of my friends just absolutely fell in love with her last week. Every minute of the day someone was holding her and she just loved it. I know you all are waiting for details, I'm just so busy living again.
Her appt was awesome we go back on Jan 3 for testing. They are going to do the skin biopsy again, evoked potential testing on her eyes, eeg, mri, gi, pulmo, cardio, another swallowing study, we are gonna be busy. The doctor at the clinic put his initial diagnosis as Metabolic encephalopathy, mental retardation, failure to thrive, and short stature. Roo has not really grown since she was 8 months old. Her head circumference is the same, her weight up and down if we could hit 17 lbs and keep going I would be a happy mommy!, and her length has been the same for 4 months. I told the doctor, I know she is the way she is, but I would like a diagnosis to at least have something to go by. He said that there is a 30% chance we may not find one. He will go as far as I want to go in looking. He confirmed what I already knew about this being progressive. He would like to try the mito cocktail or something like that but he wants to do his testing 1st. I told him I was moving up in Feb. and was surprised when he said that the testing can't wait till then. So, we are on a better path, still not a great one, but better!
Roo has been doing OK, she has another ear infection she needs tubes. Her breathing is awful and I'm so sick and tired of bringing her to the doctor and them telling me its because she has no productive cough and that's just the way it is. I mean there's got be something I can do to get that crap out her throat and chest. I have been doing chest pt that her therapist taught me, I can move some of it but not always. I'm doing breathing treatments and just praying it gets better.
She's also been having trouble pooping lately. It seems like she is just not strong enough to push it out, poor thing. She just tries so hard and nothing so me and mostly her dad have been helping her out. I tried some mineral oil to see if that would help and after 3 days still nothing so we'll see. After being in Ohio last week, around my family and friends, I feel a great sense of peace. I know that whatever happens I will be OK, that my girls and I are surrounded by love, and Roo's life will change people and touch them. It's awesome just to watch my friends hold her, I can see in their eyes the love, and how she just literally melts their heart.
updated: Roo did touch so many lives and change people. I am forever grateful for what she gave here on earth. Blue Bells' 1st gym meet was on the 18th last year, this year the championships are on the 18th. I met a Mom and little girl last year at Blue's 1st gym meet. The little baby girl had Mito, what are the odds, I like to believe that many of Blue's meets are on the 18th to remind us that Roo is still with us and proud of the both of us. For the Mom I am able to be despite her loss, for the wonderful, amazing, shining, girl Blue is, despite having watched Roo die a slow death. She would be 5 now, I'm sure fighting with Tinker over my affection and attention, Blue being annoyed by both her little sissies, God chose this path that we all walk. I step back in wonder everyday at how much Tinker and Blue's bond has grown. How Blue has let go of her anger towards Tinker, because she is not Roo, how they both have flourished and grown. I miss Roo so much, I know Blue misses her too, each day the both of us live to honor her and her memory, understanding each other more then most Mother's and daughter's can........We may not talk about Roo much to the people around us, We may act like life has moved on, truth is we don't need to express through words anymore, those around us know how much we have suffered, how much we have fought to come back and learn how to live without Roo and through her memory, how lucky are we, that through a wink, smile, hug, or encouraging words, we know that everyone around us that loves us deeply, also carries our sweet Roo in their hearts.....
F*LUSHHHHHHHHHHH
blue raz
HAPPY BIRTHDAY TO MY PRINCESS Roo!!!!!!!!!!!!!!!!!! I can't believe that Roo is 1 today. When she was born I had no clue the journey we were about to begin. I had no clue that in this last year Roo would help me to heal family relationships, teach me how strong I can be, bring Tinker's Dad back into her life, and touch everyone that meets her. I have learned so much from this little girl of mine, so much about life. I cherish everyday I have with her. I don't think that I will ever be able to truly accept everything that has happened to her. Bu,t I believe that I am ready to live again for my children, to give Roo much love and happiness everyday as she gives to those around her. All of my friends just absolutely fell in love with her last week. Every minute of the day someone was holding her and she just loved it. I know you all are waiting for details, I'm just so busy living again.
Her appt was awesome we go back on Jan 3 for testing. They are going to do the skin biopsy again, evoked potential testing on her eyes, eeg, mri, gi, pulmo, cardio, another swallowing study, we are gonna be busy. The doctor at the clinic put his initial diagnosis as Metabolic encephalopathy, mental retardation, failure to thrive, and short stature. Roo has not really grown since she was 8 months old. Her head circumference is the same, her weight up and down if we could hit 17 lbs and keep going I would be a happy mommy!, and her length has been the same for 4 months. I told the doctor, I know she is the way she is, but I would like a diagnosis to at least have something to go by. He said that there is a 30% chance we may not find one. He will go as far as I want to go in looking. He confirmed what I already knew about this being progressive. He would like to try the mito cocktail or something like that but he wants to do his testing 1st. I told him I was moving up in Feb. and was surprised when he said that the testing can't wait till then. So, we are on a better path, still not a great one, but better!
Roo has been doing OK, she has another ear infection she needs tubes. Her breathing is awful and I'm so sick and tired of bringing her to the doctor and them telling me its because she has no productive cough and that's just the way it is. I mean there's got be something I can do to get that crap out her throat and chest. I have been doing chest pt that her therapist taught me, I can move some of it but not always. I'm doing breathing treatments and just praying it gets better.
She's also been having trouble pooping lately. It seems like she is just not strong enough to push it out, poor thing. She just tries so hard and nothing so me and mostly her dad have been helping her out. I tried some mineral oil to see if that would help and after 3 days still nothing so we'll see. After being in Ohio last week, around my family and friends, I feel a great sense of peace. I know that whatever happens I will be OK, that my girls and I are surrounded by love, and Roo's life will change people and touch them. It's awesome just to watch my friends hold her, I can see in their eyes the love, and how she just literally melts their heart.
updated: Roo did touch so many lives and change people. I am forever grateful for what she gave here on earth. Blue Bells' 1st gym meet was on the 18th last year, this year the championships are on the 18th. I met a Mom and little girl last year at Blue's 1st gym meet. The little baby girl had Mito, what are the odds, I like to believe that many of Blue's meets are on the 18th to remind us that Roo is still with us and proud of the both of us. For the Mom I am able to be despite her loss, for the wonderful, amazing, shining, girl Blue is, despite having watched Roo die a slow death. She would be 5 now, I'm sure fighting with Tinker over my affection and attention, Blue being annoyed by both her little sissies, God chose this path that we all walk. I step back in wonder everyday at how much Tinker and Blue's bond has grown. How Blue has let go of her anger towards Tinker, because she is not Roo, how they both have flourished and grown. I miss Roo so much, I know Blue misses her too, each day the both of us live to honor her and her memory, understanding each other more then most Mother's and daughter's can........We may not talk about Roo much to the people around us, We may act like life has moved on, truth is we don't need to express through words anymore, those around us know how much we have suffered, how much we have fought to come back and learn how to live without Roo and through her memory, how lucky are we, that through a wink, smile, hug, or encouraging words, we know that everyone around us that loves us deeply, also carries our sweet Roo in their hearts.....
F*LUSHHHHHHHHHHH
blue raz
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