Some days it takes everything I have just to get dressed. I know I am depressed but honestly i really am not ready to feel any other way. i want to care about Robbie's absences, losing weight, and our budget but I simply don't care. I am sick of doctor appointments and laundry and cooking and functioning.
Shelby and I are doing a crappy job of functioning. Seriously we lost a Friday folder which is like a prek crime. We completely missed permission slip for Kelsey to participate in an activity at school, we never go to bed before 1 am, and sometimes we pick political arguments w/ each other just so we can yell. I wish we could just snap out of this but i can't begin to imagine how we do that.
I just hurt so much these days, at times it's all I feel. Other times i am so angry it makes me feel sick. I just really miss happiness, my believe in a greater good. I even miss the stupid stuff that used to make me mad.
It's strange when the future becomes something you can't think of. The future scares me so much but I miss the hope of the future. Now it's a dark place I protect myself from.
We are trying to decide if and when to move back home but it isn't an easy decision. Staying in Georgia offers a lot. Cost of living is way lower, no snow, amazing friends, and this is the place we have raised our family so it's home too. Home on the other hand has family and you can't really put a price on that. There is a familiarity there that no place else can offer. I know after we found out both Shelby and i wanted our moms and I don't think that has changed for either of us but we have 3 kids, 2 of them in school and we can't just leave. There is other employment issues at play here and everything is just shaky right now.
I am still in shock honestly, I still type DMD because typing the words is too hard for me because I will say them in my head. I can't believe this is happening. He had a speech delay.
Monday, February 27, 2012
Saturday, February 25, 2012
Sigh...
I never know when the pain will be too hard to push down, what will knock me to the ground. It's almost 3 am. I am watching a repeat of Live w/ Kelly. (Dad, they replay it at 2am, who knew?) it's a wedding episode and I love weddings so i thought this would be good. Then the parents of the groom walked down the aisle. it's very likely i will never be the mother of the groom.
This isn't the way things are supposed to be.
This isn't the way things are supposed to be.
Friday, February 24, 2012
Being Human
I was not going to post about this but after a lot of soul searching I feel it's important that I record this part of the journey just because someday someone might read this while going through the same kind of thing and maybe reading about this will help them. obviously this is my first time dealing w/ this kind of situation and maybe I am expecting too much, although i don't feel I am.
On December 15th our neurologist grabbed my hand and told me they were there to help and would be w/ us every step of the way. he hasn't so much as acknowledge our presence during our last 2 appointment sending in his very nice but very not knowledgeable of DMD nurse practitioner. At the first follow up they almost refused to see us because we were only 5 minutes early and they prefer we be 15 minutes early in case we need to fill out paperwork,which we have not needed to do. Then we sat and waited over an hour in a room. When the nurse practitioner did come into see us she couldn't answer even one of my simple questions. I left very upset. Our 2ND appointment went slightly better this time we were 20 minutes early to not fill out paperwork again and we sat for 40 minutes in the room. Both our pediatrician and nurse practitioner have spent the last 2 months discussing who will do the monthly checks to make sure his steroids aren't causing issues, they have yet to come to a decision but they did read someone should do it. I am not kidding that is pretty much an exact quote. I mean I have read that too, I also discovered that he should be on a calcium supplement, which no one prescribed and when I asked they said that was good idea. when I asked about a medical social worker i was asked to call around and let them know what I found out since other people could benefit from it.
The pulmonologist was especially cruel arguing w/ us that their were several different types of duchennes then realizing she misspoke and said their were several kinds of MD which is of course true but she was really getting nasty w/ us when we had no clue what she was talking about. She then said everything looked good but we needed to do a sleep study to make sure he was getting enough oxygen at night because and this a quote "That's the first thing to go." This isn't a car w/ tons of miles this is my son. I mean who says that? Never once did she say she was sorry or even offer the slightest bit of compassion. Even asking what it was she was supposed to do for us. Apparently she didn't have time to read the referral.
Yesterday we meant w/ geneticist which I was very, very worried about. He was awesome. Asking how we were handling everything ad actually caring about my answer. He was the first person to say that given my family history I am likely not a carrier and that there was nothing I could have done to cause this. he talked to me for 20 minutes, even though my kids were acting crazy, it's was great and above and beyond what I was expecting.
I honestly do not expect everyone to treat us as if we are their number one priority or that their life revolves around what is happening w/ my family but it doesn't take much to act like you care. i realize it is just another day at the office and that doctors cannot get emotionally involved in every case. I think though they could acknowledge that for us our life is currently revolving around this. that our child is sick and as the people we are paying to take care of our kid they do owe us a bit of sensitivity.
I am scared, terrified, unsure, and extremely angry about this diagnosis. I need to know that the people treating my child our educated on his disease. I need the doctors, nurses, receptionists to treat us like humans not numbers. Just because Shelby and I aren't sobbing doesn't mean this isn't still hurting. We have to be as normal as possible for our kids, that doesn't mean that we are indifferent to this disease or that you can talk about my child's body parts like they are car parts. I don't know maybe I am asking too much but am i really? Is it wrong to expect compassion?
On December 15th our neurologist grabbed my hand and told me they were there to help and would be w/ us every step of the way. he hasn't so much as acknowledge our presence during our last 2 appointment sending in his very nice but very not knowledgeable of DMD nurse practitioner. At the first follow up they almost refused to see us because we were only 5 minutes early and they prefer we be 15 minutes early in case we need to fill out paperwork,which we have not needed to do. Then we sat and waited over an hour in a room. When the nurse practitioner did come into see us she couldn't answer even one of my simple questions. I left very upset. Our 2ND appointment went slightly better this time we were 20 minutes early to not fill out paperwork again and we sat for 40 minutes in the room. Both our pediatrician and nurse practitioner have spent the last 2 months discussing who will do the monthly checks to make sure his steroids aren't causing issues, they have yet to come to a decision but they did read someone should do it. I am not kidding that is pretty much an exact quote. I mean I have read that too, I also discovered that he should be on a calcium supplement, which no one prescribed and when I asked they said that was good idea. when I asked about a medical social worker i was asked to call around and let them know what I found out since other people could benefit from it.
The pulmonologist was especially cruel arguing w/ us that their were several different types of duchennes then realizing she misspoke and said their were several kinds of MD which is of course true but she was really getting nasty w/ us when we had no clue what she was talking about. She then said everything looked good but we needed to do a sleep study to make sure he was getting enough oxygen at night because and this a quote "That's the first thing to go." This isn't a car w/ tons of miles this is my son. I mean who says that? Never once did she say she was sorry or even offer the slightest bit of compassion. Even asking what it was she was supposed to do for us. Apparently she didn't have time to read the referral.
Yesterday we meant w/ geneticist which I was very, very worried about. He was awesome. Asking how we were handling everything ad actually caring about my answer. He was the first person to say that given my family history I am likely not a carrier and that there was nothing I could have done to cause this. he talked to me for 20 minutes, even though my kids were acting crazy, it's was great and above and beyond what I was expecting.
I honestly do not expect everyone to treat us as if we are their number one priority or that their life revolves around what is happening w/ my family but it doesn't take much to act like you care. i realize it is just another day at the office and that doctors cannot get emotionally involved in every case. I think though they could acknowledge that for us our life is currently revolving around this. that our child is sick and as the people we are paying to take care of our kid they do owe us a bit of sensitivity.
I am scared, terrified, unsure, and extremely angry about this diagnosis. I need to know that the people treating my child our educated on his disease. I need the doctors, nurses, receptionists to treat us like humans not numbers. Just because Shelby and I aren't sobbing doesn't mean this isn't still hurting. We have to be as normal as possible for our kids, that doesn't mean that we are indifferent to this disease or that you can talk about my child's body parts like they are car parts. I don't know maybe I am asking too much but am i really? Is it wrong to expect compassion?
Thursday, February 23, 2012
Why Do I Fall?
He asked me. i couldn't answer him. He's 5 years old, he shouldn't have to hear why. I don't know what to do about his questions, I don't want to lie but I don't want to take normal from him. How am I supposed to look into that sweet face and tell him he's sick and there is nothing we can to do to make it better?
I don't want to lose Robbie. I don't want to see a world w/o him. I don't want to watch him weaken. I want to fight. That is almost the cruelest part of this whole thing. There is no fight to have. We can raise money for charity, i can blog, we can buy shamrocks. That's all we get, hope and prayer for medical breakthrough.
I talk a lot about my pain because well that's mostly the only thing i feel right now. I can fake happy for my kids, I can let everyone think I am being strong, I can laugh but all I can feel is black dark pain. Sometimes when he is trying to push my buttons I just pick him up put his head against my shoulder and hold him so tight he gets mad at me. The only time I feel even slightly strong is when I have him in my arms.
I have never really experienced extraordinary tragedy. i have lost people in my life but nothing that compares to this. I really don't understand how this happening. I don't have a family history at least genetically linked to me. i just don't understand this whole spontaneous mutation of a cell thing or why I didn't even know that could happen. Most of all the thing I most fear is finding out I did carry this disease, that there is some family history we weren't aware of, or that my grandma was a carrier but she only had girls and my mom only had 1 boy so i mean it could come out that I m a carrier. i don't know how i will live that. Mom, i will live w/ it, I just don't know how. don't freak on me.
if i am a carrier then i may have passed that to my girls. i honestly don't know how my husband will continue to love me if he finds out I sentenced our family to this hell for generations to come. I hate the life I have right now. I hate this disease, hate it.
I want a cure, right now. I pray every night for a medical breakthrough. Which is kind of funny praying to a god that lets this disease afflict innocent children. All the stupid things people do to there bodies, celebrities that use drugs and alcohol to slowly kill themselves because it's so damn hard to be rich and famous. they get to be healthy and strong but my child has to die a slow horrible death. where is the justice?
I love my little bubber, he is my heart. Robbie, Kelsey, Madison are treasures the world deserves to know. they all deserve happiness. i don't want to lose one of them. Please God, if you are reading this don't take Robbie, please give someone the ability to end this hell for every family.
I don't want to lose Robbie. I don't want to see a world w/o him. I don't want to watch him weaken. I want to fight. That is almost the cruelest part of this whole thing. There is no fight to have. We can raise money for charity, i can blog, we can buy shamrocks. That's all we get, hope and prayer for medical breakthrough.
I talk a lot about my pain because well that's mostly the only thing i feel right now. I can fake happy for my kids, I can let everyone think I am being strong, I can laugh but all I can feel is black dark pain. Sometimes when he is trying to push my buttons I just pick him up put his head against my shoulder and hold him so tight he gets mad at me. The only time I feel even slightly strong is when I have him in my arms.
I have never really experienced extraordinary tragedy. i have lost people in my life but nothing that compares to this. I really don't understand how this happening. I don't have a family history at least genetically linked to me. i just don't understand this whole spontaneous mutation of a cell thing or why I didn't even know that could happen. Most of all the thing I most fear is finding out I did carry this disease, that there is some family history we weren't aware of, or that my grandma was a carrier but she only had girls and my mom only had 1 boy so i mean it could come out that I m a carrier. i don't know how i will live that. Mom, i will live w/ it, I just don't know how. don't freak on me.
if i am a carrier then i may have passed that to my girls. i honestly don't know how my husband will continue to love me if he finds out I sentenced our family to this hell for generations to come. I hate the life I have right now. I hate this disease, hate it.
I want a cure, right now. I pray every night for a medical breakthrough. Which is kind of funny praying to a god that lets this disease afflict innocent children. All the stupid things people do to there bodies, celebrities that use drugs and alcohol to slowly kill themselves because it's so damn hard to be rich and famous. they get to be healthy and strong but my child has to die a slow horrible death. where is the justice?
I love my little bubber, he is my heart. Robbie, Kelsey, Madison are treasures the world deserves to know. they all deserve happiness. i don't want to lose one of them. Please God, if you are reading this don't take Robbie, please give someone the ability to end this hell for every family.
Friday, February 17, 2012
Contentment
I miss feeling content. i feel like all the security in my life has been ripped away. I miss feeling happy, truly happy not trying to be happy while pretending life is okay. I don't want muscular dystrophy in my life, at times its so damn unfair it physically hurts.
I am so sad i don't even think its describable. Even when I'm happy it isn't all there. I don't laugh and smile the same. i probably never will. Every second my our life seems so fleeting, so fast,and enough. I am so tired of doctors, bad news, and frankly horrible bedside manner. do you know every time we go to a specialist we have to explain why we are there. Oh my God, I hate that, i just want to yell at them. Saying those words it's just , i can't it hurts because every time I hear / say them I think about how I am going to lose my son.
i don't want to go through this. i just don't and even though I want to fight I would much rather it just go away. i can't understand how this happens. we make child in love, i follow all the pregnancy rules, I have C-section, hes born, we watch him grow, we think everything is good. then it's not. a mutation in exon 45. that's what happened. No reason, no explanation,no direct genetic history. just stupid dumb luck, or gods will, or what ever crappy sentiment we use to explain the unexplainable.
It still seems like it can't be true. I know it is but i mean it can't be. When I go to his school and I am looking at all the other boys. 4 and 5 years old, they seem so similar yet their muscles are not slowly breaking down inside of them. i don't wish this on any other boy i just want to know why us, why Robbie? He has been a real pain in the butt the last few days and I hate myself for thinking that no matter how true it is. I hate disciplining him. I have just been told that his life is limited, how I hate wasting time yelling at him or grounding him. I know i have to but it sucks.
i keep thinking it will get better but I am guessing it never does. Eventually I will learn to live w/ DMD but i can't imagine this pain going away. I want a cure. I don't want some bullshit 5 more years. I want him to have a future. i want my girls to have a brother forever not a freaking memory. I want to have my son until i die. That's all I want.
I am so sad i don't even think its describable. Even when I'm happy it isn't all there. I don't laugh and smile the same. i probably never will. Every second my our life seems so fleeting, so fast,and enough. I am so tired of doctors, bad news, and frankly horrible bedside manner. do you know every time we go to a specialist we have to explain why we are there. Oh my God, I hate that, i just want to yell at them. Saying those words it's just , i can't it hurts because every time I hear / say them I think about how I am going to lose my son.
i don't want to go through this. i just don't and even though I want to fight I would much rather it just go away. i can't understand how this happens. we make child in love, i follow all the pregnancy rules, I have C-section, hes born, we watch him grow, we think everything is good. then it's not. a mutation in exon 45. that's what happened. No reason, no explanation,no direct genetic history. just stupid dumb luck, or gods will, or what ever crappy sentiment we use to explain the unexplainable.
It still seems like it can't be true. I know it is but i mean it can't be. When I go to his school and I am looking at all the other boys. 4 and 5 years old, they seem so similar yet their muscles are not slowly breaking down inside of them. i don't wish this on any other boy i just want to know why us, why Robbie? He has been a real pain in the butt the last few days and I hate myself for thinking that no matter how true it is. I hate disciplining him. I have just been told that his life is limited, how I hate wasting time yelling at him or grounding him. I know i have to but it sucks.
i keep thinking it will get better but I am guessing it never does. Eventually I will learn to live w/ DMD but i can't imagine this pain going away. I want a cure. I don't want some bullshit 5 more years. I want him to have a future. i want my girls to have a brother forever not a freaking memory. I want to have my son until i die. That's all I want.
Tuesday, February 14, 2012
Happy Valentines Day
Today i am working on a celebration for my family. nothing huge but a yummy dinner and dessert the kids are helping me make. A little chocolate and whole lotta love. In honor of the day of love and because I don't have the energy to tap into my feelings I thought i would list the top 10 things i love.
1. My husband and kids. No one in the whole world gets me like Shelby. he sometimes luaghs when I am about to say something sarcastic because he knows it's coming. He is a rock when I need him to be and even though he snores too much I love him more then chocolate. My children are each so different yet so alike. I love to see the relationship they have formed w/ each other and I pray that they will be able to hold on to that as this road ahead of us gets bumpy.
2. My Mom and Dad because they got married 33 years ago ( I think that is right) today and w/o that there probably wouldn't me. So um thanks guys for loving each other enough to create all this awesomeness. Eww I mean thanks for all the TV watching.
3. My brother... The coach! No seriously I love you even when you make me crazy.
4. My inlaws (especially Philip) for playing board games w/ us leading to hours of laugther.
5. My friends and family, The drinks, the laughs, the walk, the being there. You are all so special and amazing and I seriously do not know what i would do w/o you.
6. Barrow county schools for sending all those attendance letters home. sorry to the trees but awesome to know our family is responsible for a fancy new parking lot somewhere.
7. http://www.nicolewphotography.com your kindness and generosity humble me.
8. Dani, the closest thing i have to a sister. having the privilege to grow up w/ you and see the world the way you see it is amazing and stays w/ me always. I am a better person because you are my cousin.
9. Motherhood. I love being a mom. Seeing these children go from little tiny babies to amazing little wise people is the best thing ever.
10. Chocolate. enough said.
Sometimes i just need to smile. i can't change the future. I need to find something to laugh about, celebrate the people in my life. Hope y'all have a great Valentines day full of love.
1. My husband and kids. No one in the whole world gets me like Shelby. he sometimes luaghs when I am about to say something sarcastic because he knows it's coming. He is a rock when I need him to be and even though he snores too much I love him more then chocolate. My children are each so different yet so alike. I love to see the relationship they have formed w/ each other and I pray that they will be able to hold on to that as this road ahead of us gets bumpy.
2. My Mom and Dad because they got married 33 years ago ( I think that is right) today and w/o that there probably wouldn't me. So um thanks guys for loving each other enough to create all this awesomeness. Eww I mean thanks for all the TV watching.
3. My brother... The coach! No seriously I love you even when you make me crazy.
4. My inlaws (especially Philip) for playing board games w/ us leading to hours of laugther.
5. My friends and family, The drinks, the laughs, the walk, the being there. You are all so special and amazing and I seriously do not know what i would do w/o you.
6. Barrow county schools for sending all those attendance letters home. sorry to the trees but awesome to know our family is responsible for a fancy new parking lot somewhere.
7. http://www.nicolewphotography.com your kindness and generosity humble me.
8. Dani, the closest thing i have to a sister. having the privilege to grow up w/ you and see the world the way you see it is amazing and stays w/ me always. I am a better person because you are my cousin.
9. Motherhood. I love being a mom. Seeing these children go from little tiny babies to amazing little wise people is the best thing ever.
10. Chocolate. enough said.
Sometimes i just need to smile. i can't change the future. I need to find something to laugh about, celebrate the people in my life. Hope y'all have a great Valentines day full of love.
Monday, February 13, 2012
fight
I keep waiting to wake up from the nightmare that is my life. This can't really be happening. This happens to other people. I watch their stories on Lifetime. i say wow I couldn't imagine. I hug my kids and thank God I have 3 healthy kids. it is the saddest thing ever to not be able to say "at least my family is healthy."
There is a part of me that will never be the same again. there is an anger so deep and so horrible that it scares me at times. I said before , I really mean it, I am not accustomed to being angry like this. I am usually a glass half full kind of person, so this bitter, dark feeling is not something I handle very well. For every good day i have there is 2 or 3 days of grief and anger and just general sadness.
Before we found out even before I shared w/ anyone my deepest fears, i read of another woman going through the things we were but her story ended the opposite way. I really thought that would be my story. I was actually planning my facebook post when I would tell everyone about the testing and how happy we were that the test came back normal. i didn't get to post that.
I am so happy we have a vacation coming up. I think our family needs it more then ever. No appointments,work, school, dishes, cooking. or laundry. The thought of just being a family is so exciting. i know we cant escape the realities of our life but sometimes you have to take a break or you will go crazy.
I feel the need to say this for some reason... i am very blessed to have my 3 children. Even though this is the most horrible thing I can imagine right now, I feel like it has to mean something. i am not going to try and figure out why this is happening because i do not think there is a reason in the world that would be good enough, but i am not going to just sit down and wait for the end. I have read so many things about the end stage of this disease but frankly I will not be speaking or typing those words again. I will not speak of Robbie's life expectancy because, well its morbid. I will keep posting here, on facebook, anywhere to get the word out. i am going to fight like hell. This disease has had way too much power for way to long. Awareness is the best thing any of us can do for Robbie right now. i encourage people to share what my family is going through not because I want the whole world to be sad i just want the whole world to know about this disease. Not just clovers and telethons, i want yogurt caps, and celebrity ribbons. Awareness is the key to research. Research is my sons only hope so please join me in this fight.
I just want to mention again because I haven't in a while, Shelby, the kids, some of our friends, and I are participating in the 2012 MDA Muscle Walk. We are doing this in Robbie's honor. Our team is very close to our goal but we need just a bit more. Please remember every little bit counts and makes it easier for the MDA to help families like ours. Just click on my blue icon and you will be directed to our team page.
There is a part of me that will never be the same again. there is an anger so deep and so horrible that it scares me at times. I said before , I really mean it, I am not accustomed to being angry like this. I am usually a glass half full kind of person, so this bitter, dark feeling is not something I handle very well. For every good day i have there is 2 or 3 days of grief and anger and just general sadness.
Before we found out even before I shared w/ anyone my deepest fears, i read of another woman going through the things we were but her story ended the opposite way. I really thought that would be my story. I was actually planning my facebook post when I would tell everyone about the testing and how happy we were that the test came back normal. i didn't get to post that.
I am so happy we have a vacation coming up. I think our family needs it more then ever. No appointments,work, school, dishes, cooking. or laundry. The thought of just being a family is so exciting. i know we cant escape the realities of our life but sometimes you have to take a break or you will go crazy.
I feel the need to say this for some reason... i am very blessed to have my 3 children. Even though this is the most horrible thing I can imagine right now, I feel like it has to mean something. i am not going to try and figure out why this is happening because i do not think there is a reason in the world that would be good enough, but i am not going to just sit down and wait for the end. I have read so many things about the end stage of this disease but frankly I will not be speaking or typing those words again. I will not speak of Robbie's life expectancy because, well its morbid. I will keep posting here, on facebook, anywhere to get the word out. i am going to fight like hell. This disease has had way too much power for way to long. Awareness is the best thing any of us can do for Robbie right now. i encourage people to share what my family is going through not because I want the whole world to be sad i just want the whole world to know about this disease. Not just clovers and telethons, i want yogurt caps, and celebrity ribbons. Awareness is the key to research. Research is my sons only hope so please join me in this fight.
Thursday, February 9, 2012
Ugh..
it's not fair. I can't count how many times a day I say that. For all my big talk about hope I am still lost, terrified, and pissed off. I love my little boy so much and I don't want to loss him. I don't want to discuss his life expectancy. I want to buy a 2 story house w/ a basement like he wants because he doesn't know how hard that will be for him in the coming years.
I am sick of people telling me to enjoy the time we have to be thankful. Screw that, how am I supposed to be thankful I get to watch this disease slowly and cruelly claim my boy? That every second of everyday he is one step closer to a wheelchair and his eventual death. I wish someone could show me how to focus on today when the shadow of tomorrow is everywhere.
I cannot understand this and telling me I may never know why doesn't help. I don't understand if there is this plan why are people allowed to grow and become child molesters or murderers while my child will die young because of a stupid gene mutation.
I can't sleep at night lately, the darkness is too much and as I try I cant focus on anything else. I stay up as late as I can watching mindless television until I go into bed and lay there. I have never been someone that goes to sleep easily so this isn't huge surprise but it is making things difficult for me. I am having a hard time doing the things I need to do. i forget to pay bill, eat crappy food that i can't taste , and I look like crap.
I try to put on a mask when i am around other people. i want to appear strong because I really want to be strong. I really want to be the place people can come for comfort because I am acutly aware that is my responsiblity to lead everyone emotionally. I dont mean that as a slight to my husband. He has to lead us financially, He has to handle the logical stuff because that is his strength.
it such a contradiction to work so hard to enjoy every moment w/ him while trying to accept this diagnosis. i honestly do not know how we get thru everyday w/o a complete breakdown. The shock is just not going away. Robbie had a speech delay, and then possible apraxia, and then maybe sensory issues, and now he has DMD. How the hell does that happen? I mean there is no genetic family history of this. i was told i wasn't carrier while i was pregnant with him. i thought we were safe. Turns out that doesn't matter sometimes these things just happen.
I am sorry I don't have the strength to me hopeful today. That today it all feels to hard and i am mad and scared. I feel bad being so negative when so many people haave been wonderful to us. it feels wrong like I owe to them to just deal w/ it and start fighting. i am sure no one expects that of me now that I look at it but still i feel guilty for being so upset.
I am sick of people telling me to enjoy the time we have to be thankful. Screw that, how am I supposed to be thankful I get to watch this disease slowly and cruelly claim my boy? That every second of everyday he is one step closer to a wheelchair and his eventual death. I wish someone could show me how to focus on today when the shadow of tomorrow is everywhere.
I cannot understand this and telling me I may never know why doesn't help. I don't understand if there is this plan why are people allowed to grow and become child molesters or murderers while my child will die young because of a stupid gene mutation.
I can't sleep at night lately, the darkness is too much and as I try I cant focus on anything else. I stay up as late as I can watching mindless television until I go into bed and lay there. I have never been someone that goes to sleep easily so this isn't huge surprise but it is making things difficult for me. I am having a hard time doing the things I need to do. i forget to pay bill, eat crappy food that i can't taste , and I look like crap.
I try to put on a mask when i am around other people. i want to appear strong because I really want to be strong. I really want to be the place people can come for comfort because I am acutly aware that is my responsiblity to lead everyone emotionally. I dont mean that as a slight to my husband. He has to lead us financially, He has to handle the logical stuff because that is his strength.
it such a contradiction to work so hard to enjoy every moment w/ him while trying to accept this diagnosis. i honestly do not know how we get thru everyday w/o a complete breakdown. The shock is just not going away. Robbie had a speech delay, and then possible apraxia, and then maybe sensory issues, and now he has DMD. How the hell does that happen? I mean there is no genetic family history of this. i was told i wasn't carrier while i was pregnant with him. i thought we were safe. Turns out that doesn't matter sometimes these things just happen.
I am sorry I don't have the strength to me hopeful today. That today it all feels to hard and i am mad and scared. I feel bad being so negative when so many people haave been wonderful to us. it feels wrong like I owe to them to just deal w/ it and start fighting. i am sure no one expects that of me now that I look at it but still i feel guilty for being so upset.
Tuesday, February 7, 2012
Light
December 16th was almost worst then December 15th. i will never forget waking up that morning. there was a second I was just waking up and i sat up turned my alarm off and it hit me like a ton of bricks. I fell back into bed sobbing. I remember how alone and helpless I felt in that moment. I didn't know how I was going to get thru Christmas or well life. Somehow insulated by family we got through the holidays and even enjoyed them. Then we had to come back home...
We thought we were alone. That we wouldn't have anyone to lean on. Which having seen my friends rally around other friends was kind of stupid for me to think but I thought it. One night I went to a mom's night out and there were so many friends there, some I hadn't seen in a aout a year. They hugged me, they gave me and my kids gifts, offered support, nights out, babysitting, and they had contacted so many vendors, so many outings and passes for different places donated to us from so many businesses and really they are still coming in. It was simply amazing. I have never in my life felt more support and more just goodness. Sometimes it takes the bad things to make us see the good things in our lives.
Which brings me to the last week. Sunday, I was feeling kind of crappy and i woke up and looked at my email. there was one from my friend, Tara with another message she had from a photographer. a beautiful sweet message offering to take pictures of our family so that I could remember what Robbie looks like right now. It is so incredibly generous, Shelby and I were both moved to tears.
i am still having such terrible moments of sadness. The hurt I feel it never stops. Ever. I do feel stronger everyday. I do know I'm not alone, I just want people to know that when we hear the world is different ,less kind then it was a generation ago maybe it really isn't. Maybe sometimes life, the media, society become so focused on the bad that we simply dont see the good.
My life is different then it was on December 14th. there is a black hole of suckage in my life now but there is also a great deal of love. i don't understand why this is happening. I do feel supported though. I do know we have lots of people willing to give us a shoulder to cry on. I know that there is light in my life no matter how dark it feels.
We thought we were alone. That we wouldn't have anyone to lean on. Which having seen my friends rally around other friends was kind of stupid for me to think but I thought it. One night I went to a mom's night out and there were so many friends there, some I hadn't seen in a aout a year. They hugged me, they gave me and my kids gifts, offered support, nights out, babysitting, and they had contacted so many vendors, so many outings and passes for different places donated to us from so many businesses and really they are still coming in. It was simply amazing. I have never in my life felt more support and more just goodness. Sometimes it takes the bad things to make us see the good things in our lives.
Which brings me to the last week. Sunday, I was feeling kind of crappy and i woke up and looked at my email. there was one from my friend, Tara with another message she had from a photographer. a beautiful sweet message offering to take pictures of our family so that I could remember what Robbie looks like right now. It is so incredibly generous, Shelby and I were both moved to tears.
i am still having such terrible moments of sadness. The hurt I feel it never stops. Ever. I do feel stronger everyday. I do know I'm not alone, I just want people to know that when we hear the world is different ,less kind then it was a generation ago maybe it really isn't. Maybe sometimes life, the media, society become so focused on the bad that we simply dont see the good.
My life is different then it was on December 14th. there is a black hole of suckage in my life now but there is also a great deal of love. i don't understand why this is happening. I do feel supported though. I do know we have lots of people willing to give us a shoulder to cry on. I know that there is light in my life no matter how dark it feels.
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