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 decisions. Show all posts
Showing posts with label decisions. 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
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
Tuesday, January 6, 2009
HI, HOW ARE YOU????!!!!!
I talked to RosieD tonight for the 1st time in 7 months. RosieD aka. Step-Mom, new wife to the ex, oh and one of my ex-closest friends. As I was driving home in the worst ice storm of the season my phone rang. It was an incoming call from RosieD's cell phone. The same one she called my daughter from on Friday night and told her to NEVEREVER call the cell phone again. mmkay. I answered thinking Tinker Tot was calling me. See, RosieD, she never plays her stalker like games teetering on the edge of what's legal and not legal when she knows the guardian can be called immediately. RosieD, one of my closest, best, girlfriends that walked by my side through the death of Roo, held my hand as I cried, loves Tinker Tot as her own.....till 7 months ago. I answered the phone and there was her Rosie voice in my ear. Truth be told, I miss her. But, I can never forgive her for her actions over the past year. She was calling to tell me she finally brought Tinker to the doctor for her snotty runny ear....ya it's only been 2 weeks, and that Tinker's ringworm is better but only because she was putting bleach on it. BLEACH! Now, being the germaphobic I am I did think about spraying Tinker's ringworm with lysol...oh yes, I did....but settled on spraying every inch of myself instead.
35 mins I listened to RosieD tattle on about the trip to the doctor with Tinker and this and that. 35 mins. of driving through an ice storm seeing accident after accident and concentrating to keep my own darn car on the road. Smart to talk and drive...ummmm no so much. Did it keep me from being the crazy lunatic I wanted to be and tear RosieD a new one and stop pretending like the words she said to me 7 months ago didn't exist. yah.
RosieD and I used to talk everyday. Tinker Tot has grown up knowing both her "Moms" loved each other very much. There used to be movies together, roller skating, scrapbooking, dinners at each other's houses...a mixed family, non-traditional, but filled with love. I thought it was one of the greatest gifts Roo brought us. I miss her and still love her but I can't forgive what she said to me over the past year, mostly 3 words she said to me, at Tinker's soccer game.
RosieD never knew the me before Roo. She knew the me during the biggest crisis of my life. And it wasn't until I started gaining more strength physically and emotionally, that I realized how controlling she was. How shocked I was when my eyes were finally open, that she actually enjoyed me being weak. It makes me so sad to think how our friendship disintegrated because of her insecurities and jealousy. It makes me angry...but also so sad. Tonight, talking about Tinker with her, was like the good ole days. Except, we were talking about Tinker Tot's recent bout of illnesses and what needs to be done. I really think for RosieD, she felt it was a way of getting back into our friendship, it was like she didn't skip a beat, like the words that can NEVEREVER be forgiven can be unsaid. They can't. She said them they're out there. I'll talk to her because my Tinker is VERY SICK. I'll listen to what she's been doing to help nurse Tinker back to health so I know what Tinker will be like when I see her tomorrow.
14 days of a runny, snotty, ear.....12 weeks of ringworm in their home....her daughter has it on her face, arms, back, and head. I had to fight RosieD on getting tubes in Tinker's ears when she was 3. She thought I was overreacting. Ya know, I overreacted about everything because of Roo....whateva....I did work in a hospital for years....it's not like I'm stupid. Tonight, she says to me, Thank God, Thank God for her tubes......I'm thinking ya no thanks to you....she wanted her to go through allergy testing 1st....40 pricks in her back to make sure she really needed tubes and a T&A.
I know RosieD's true heart and spirit. I know we will never be friends again. I know that I will never be able to forgive her for what she said. I miss the person she pretended to be though. The good friend that was always there to laugh with me, cry with me, encourage each other, make new memories with all 5 of our girls together. I can't risk letting my guard down, no matter how much I miss who I thought she was. She made sure Tinker was in the room the whole time we were talking. I know Tinker's little heart probably jumped with joy......Tinker doesn't know the words she said that crushed my heart. Tinker is only 6. One day Tinker will be older and will see her step-mom and me in a light where all our strengths and weaknesses shine through. She will ask again what happened that one fateful day. And I, being the good person I am, will tell her once again......she never needs to know what RosieD said to me......because they love each other....and I will never take that away........by repeating those 3 little words.
watermelontini
F*Lushhhhhhhhhhhhhhhh
35 mins I listened to RosieD tattle on about the trip to the doctor with Tinker and this and that. 35 mins. of driving through an ice storm seeing accident after accident and concentrating to keep my own darn car on the road. Smart to talk and drive...ummmm no so much. Did it keep me from being the crazy lunatic I wanted to be and tear RosieD a new one and stop pretending like the words she said to me 7 months ago didn't exist. yah.
RosieD and I used to talk everyday. Tinker Tot has grown up knowing both her "Moms" loved each other very much. There used to be movies together, roller skating, scrapbooking, dinners at each other's houses...a mixed family, non-traditional, but filled with love. I thought it was one of the greatest gifts Roo brought us. I miss her and still love her but I can't forgive what she said to me over the past year, mostly 3 words she said to me, at Tinker's soccer game.
RosieD never knew the me before Roo. She knew the me during the biggest crisis of my life. And it wasn't until I started gaining more strength physically and emotionally, that I realized how controlling she was. How shocked I was when my eyes were finally open, that she actually enjoyed me being weak. It makes me so sad to think how our friendship disintegrated because of her insecurities and jealousy. It makes me angry...but also so sad. Tonight, talking about Tinker with her, was like the good ole days. Except, we were talking about Tinker Tot's recent bout of illnesses and what needs to be done. I really think for RosieD, she felt it was a way of getting back into our friendship, it was like she didn't skip a beat, like the words that can NEVEREVER be forgiven can be unsaid. They can't. She said them they're out there. I'll talk to her because my Tinker is VERY SICK. I'll listen to what she's been doing to help nurse Tinker back to health so I know what Tinker will be like when I see her tomorrow.
14 days of a runny, snotty, ear.....12 weeks of ringworm in their home....her daughter has it on her face, arms, back, and head. I had to fight RosieD on getting tubes in Tinker's ears when she was 3. She thought I was overreacting. Ya know, I overreacted about everything because of Roo....whateva....I did work in a hospital for years....it's not like I'm stupid. Tonight, she says to me, Thank God, Thank God for her tubes......I'm thinking ya no thanks to you....she wanted her to go through allergy testing 1st....40 pricks in her back to make sure she really needed tubes and a T&A.
I know RosieD's true heart and spirit. I know we will never be friends again. I know that I will never be able to forgive her for what she said. I miss the person she pretended to be though. The good friend that was always there to laugh with me, cry with me, encourage each other, make new memories with all 5 of our girls together. I can't risk letting my guard down, no matter how much I miss who I thought she was. She made sure Tinker was in the room the whole time we were talking. I know Tinker's little heart probably jumped with joy......Tinker doesn't know the words she said that crushed my heart. Tinker is only 6. One day Tinker will be older and will see her step-mom and me in a light where all our strengths and weaknesses shine through. She will ask again what happened that one fateful day. And I, being the good person I am, will tell her once again......she never needs to know what RosieD said to me......because they love each other....and I will never take that away........by repeating those 3 little words.
watermelontini
F*Lushhhhhhhhhhhhhhhh
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
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
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