Butterflies, rainbows, and days with clouds in the sky, are what we call Roo signs. Per Blue's request....I'm sharing her recent masterpiece....
Butterflies.......
Butterflies are cupcakes flying in the sky.
They are a gentle kiss from a Mother.
Their gentle tongue tickles the flowers,
in which they drink from.
Butterflies are examples of a humans life,
starting and ending,
when their life and soul goes to...
the special place we dream of......
Blue
Showing posts with label Blue. Show all posts
Showing posts with label Blue. Show all posts
Sunday, January 18, 2009
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.
Sunday, December 21, 2008
Tween
Tween........
I drive so much nowadays with the girls in 2 different schools. Blue Bell's school an hr round trip and Tinker Tot's another 15 away from where I live. Then there's those 4xs a week I'm about 40 more miles away at the gym with Blue. So, in all this driving it gives me tons of time to think. Last night, as I was driving Blue home from gym I thought about my past 9yrs with her. Just her and me. I was a single parent when Blue was born, young, working hard to get by and establish a nice life for her and me. This is going to sound strange but I had tons of support but at the same time I was all alone. In the 9 1/2yrs that I have been her Mother or since becoming a Mother there have been so many bright spots and many lows. Blue Bell is an amazing young girl in every way. And in every way she is my clone, my mini-me, right down to the way she talks, the way she loves, her passion, her competitiveness, always striving to accomplish and be the best she can be. But, she's also stubborn, moody, did I mention stubborn, bossy, nosey, and has ADHD, and post traumatic stress disorder.
It wasn't until Tinker Tot was born that I truly realized how challenging my Blue can be. I mean of course there were the terrible 2's when I can remember sitting in my Mother's living room crying my eyeballs out saying that I would never make it. The frustration, the exhaustion, the level of dislike I had for her that evening still lingers in my mind and haunts me. Here we are 7yrs later and it's like she's 2 all over again some days. I have an oober amount of patience for my Blue Bell. My heart breaks for her in so many ways and I give her as much as I can emotionally and otherwise.
Let me backtrack for a second and give you all some background info.....maybe this blog will make a little more sense. In my life things have not lasted very long. My parents divorced when I was Blue Bell's age. We moved so much I never was in one school or state longer then 3 yrs. My family members and I since the divorce all go through periods of time where we don't speak for years, then talk for a few, then don't speak again. So needless to say the one constant in my life for the last 9yrs has been Blue Bell. Friends have come and gone, Relationships have come and gone, family has come and gone. But in 9yrs, ALL 9yrs, there has been Blue. It is sad and wonderful all at the same time. She is the longest relationship and constant I have had in my whole life.
Realizing that last night was strange for me. Thinking about our 9yrs together the ups and downs, the triumphs and struggles, the tears and joy. Lately, her and I have been butting heads BIG TIME. It hurts so bad. I hate when we are angry at each other, I hate when I have to rein her in with boundaries and punishment. It is so HARD. But this weekend, well the S*t hit the fan. It was an awful battle of the wills between her and I on Saturday and I spent most of my day hating every minute of my life. ALL. OF. IT.
I guess as Mothers we all feel that way now and then. It was a day I thought neither one of us would survive but we did. Tinker Tot cried, she was scared, she's never seen me so angry. She's never seen her sister so angry. We all hung in there, Blue staking out her side of the battle, me staking out mine. I was not going to give into her relentless teen ways and tried everything I knew to do. Tinker Tot isn't permanently scared for life. Actually, I think it was a learning experience for her. She doesn't want to make Mommy that mad E.V.E.R. But Tinker is the complete opposite of Louie........I'll have to write a blog of her own one day soon.
I was racking my brain on Sat. night to think where oh where did things go wrong that day? Why did my Blue Bell have such a meltdown? Why must she test and push to see how far she can go and every button there is? There was no clear cut answer. Usually, I could think well this happened or I know she saw something that reminded her of Roo, or some reason or excuse for the complete and total fit of rage and anger. But this weekend, there was no excuse other then she's 9yrs old and I swear she has PMS already LOL.
I felt on Sat. what I felt those 7yrs ago in my Mother's living room. How am I going to do this? How am I going to survive her tween and teenage years? I'm older now, wiser sure, but physically not up for a battle of the wills with her. I feel like sometimes we are in the terrible 2's all over again. I guess what I need is a break. A serious 24-48hrs of no kids, just some time for me. And just like when she was 2 I have support but I feel all alone too.
I see other Moms I know that are able to just dump off their kids on the 1st person that they can find to watch them and go out and have fun or stay home and relax. For me, I've never been able to do that. I feel so much guilt for asking someone to take her. People have offered, I guess it all goes back to me not being the greatest at asking for help.
I love Blue Bell with all my heart and soul. Because she is so much like me, so strong, so loving, so insightful, brave, intelligent, beautiful. She captures peoples hearts and so many love her. She is top of her class at school. She is rocking it in gymnastics. She is growing and thriving but MAN the growing pains are tough.
We will survive just like we always have and do. I'm sure I will continue to tell her that I'm taking her receipt and returning her cause she's broken and she'll laugh and smile at me. I'll tell her I'm putting her up on Ebay. She'll roll her eyes. I'll tell her get that homework done. She'll so lovingly screech "I AM!!!!!!!"
That's my Blue Bell. My dynamic, complicated, moody, and sometimes angry kid. Full of energy, Full of love, Full of lots of tween hormones.
My Blue. My tween monster. My heart, joy, and laughter. I can only think that God gave me Blue Bell to keep me on my toes, to keep me going in the dark moments of grief, to remind me of everything good.
It's been quite a ride in Motherhood with her. I look forward to our next 9 1/2 yrs and beyond. I'm excited to see how she grows and who she becomes.
In the meantime, I'm sure there will be days when I'm ransacking my house looking for that receipt.
I drive so much nowadays with the girls in 2 different schools. Blue Bell's school an hr round trip and Tinker Tot's another 15 away from where I live. Then there's those 4xs a week I'm about 40 more miles away at the gym with Blue. So, in all this driving it gives me tons of time to think. Last night, as I was driving Blue home from gym I thought about my past 9yrs with her. Just her and me. I was a single parent when Blue was born, young, working hard to get by and establish a nice life for her and me. This is going to sound strange but I had tons of support but at the same time I was all alone. In the 9 1/2yrs that I have been her Mother or since becoming a Mother there have been so many bright spots and many lows. Blue Bell is an amazing young girl in every way. And in every way she is my clone, my mini-me, right down to the way she talks, the way she loves, her passion, her competitiveness, always striving to accomplish and be the best she can be. But, she's also stubborn, moody, did I mention stubborn, bossy, nosey, and has ADHD, and post traumatic stress disorder.
It wasn't until Tinker Tot was born that I truly realized how challenging my Blue can be. I mean of course there were the terrible 2's when I can remember sitting in my Mother's living room crying my eyeballs out saying that I would never make it. The frustration, the exhaustion, the level of dislike I had for her that evening still lingers in my mind and haunts me. Here we are 7yrs later and it's like she's 2 all over again some days. I have an oober amount of patience for my Blue Bell. My heart breaks for her in so many ways and I give her as much as I can emotionally and otherwise.
Let me backtrack for a second and give you all some background info.....maybe this blog will make a little more sense. In my life things have not lasted very long. My parents divorced when I was Blue Bell's age. We moved so much I never was in one school or state longer then 3 yrs. My family members and I since the divorce all go through periods of time where we don't speak for years, then talk for a few, then don't speak again. So needless to say the one constant in my life for the last 9yrs has been Blue Bell. Friends have come and gone, Relationships have come and gone, family has come and gone. But in 9yrs, ALL 9yrs, there has been Blue. It is sad and wonderful all at the same time. She is the longest relationship and constant I have had in my whole life.
Realizing that last night was strange for me. Thinking about our 9yrs together the ups and downs, the triumphs and struggles, the tears and joy. Lately, her and I have been butting heads BIG TIME. It hurts so bad. I hate when we are angry at each other, I hate when I have to rein her in with boundaries and punishment. It is so HARD. But this weekend, well the S*t hit the fan. It was an awful battle of the wills between her and I on Saturday and I spent most of my day hating every minute of my life. ALL. OF. IT.
I guess as Mothers we all feel that way now and then. It was a day I thought neither one of us would survive but we did. Tinker Tot cried, she was scared, she's never seen me so angry. She's never seen her sister so angry. We all hung in there, Blue staking out her side of the battle, me staking out mine. I was not going to give into her relentless teen ways and tried everything I knew to do. Tinker Tot isn't permanently scared for life. Actually, I think it was a learning experience for her. She doesn't want to make Mommy that mad E.V.E.R. But Tinker is the complete opposite of Louie........I'll have to write a blog of her own one day soon.
I was racking my brain on Sat. night to think where oh where did things go wrong that day? Why did my Blue Bell have such a meltdown? Why must she test and push to see how far she can go and every button there is? There was no clear cut answer. Usually, I could think well this happened or I know she saw something that reminded her of Roo, or some reason or excuse for the complete and total fit of rage and anger. But this weekend, there was no excuse other then she's 9yrs old and I swear she has PMS already LOL.
I felt on Sat. what I felt those 7yrs ago in my Mother's living room. How am I going to do this? How am I going to survive her tween and teenage years? I'm older now, wiser sure, but physically not up for a battle of the wills with her. I feel like sometimes we are in the terrible 2's all over again. I guess what I need is a break. A serious 24-48hrs of no kids, just some time for me. And just like when she was 2 I have support but I feel all alone too.
I see other Moms I know that are able to just dump off their kids on the 1st person that they can find to watch them and go out and have fun or stay home and relax. For me, I've never been able to do that. I feel so much guilt for asking someone to take her. People have offered, I guess it all goes back to me not being the greatest at asking for help.
I love Blue Bell with all my heart and soul. Because she is so much like me, so strong, so loving, so insightful, brave, intelligent, beautiful. She captures peoples hearts and so many love her. She is top of her class at school. She is rocking it in gymnastics. She is growing and thriving but MAN the growing pains are tough.
We will survive just like we always have and do. I'm sure I will continue to tell her that I'm taking her receipt and returning her cause she's broken and she'll laugh and smile at me. I'll tell her I'm putting her up on Ebay. She'll roll her eyes. I'll tell her get that homework done. She'll so lovingly screech "I AM!!!!!!!"
That's my Blue Bell. My dynamic, complicated, moody, and sometimes angry kid. Full of energy, Full of love, Full of lots of tween hormones.
My Blue. My tween monster. My heart, joy, and laughter. I can only think that God gave me Blue Bell to keep me on my toes, to keep me going in the dark moments of grief, to remind me of everything good.
It's been quite a ride in Motherhood with her. I look forward to our next 9 1/2 yrs and beyond. I'm excited to see how she grows and who she becomes.
In the meantime, I'm sure there will be days when I'm ransacking my house looking for that receipt.
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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