The hardest part of living with Duchenne at least for me is the inevitable. It's the statistics that run through my head and the constant knowledge that no one has ever won this war.
Where do I find hope there? How do I find goodness and light and how do I make sure my kids life is as happy as possible for as long as possible?
I wish had the answers. I say all the time it would be so helpful if when they handed out diagnosis they also handed out instruction booklets. I mean keep them active but not too active for as long as possible and enjoy what you have isn't exactly an instruction.
The last few months I've felt numb. Like I can't cry and I can't express what I'm feeling. I'm helpless and hopeless. He is 9 now. Most boys with duchenne lose the use of their legs between 10 and 12. That's not even the future anymore. I'm not ready for this, we haven't seen the grand canyon yet. I mean I know we can still go on vacation at least for awhile but we were supposed to see the Grand Canyon before the wheelchair. I wish we had unlimited funds and we could just vacation all the time.
I'm so afraid we won't get to the grand canyon or touch the Atlantic and Pacific oceans. That we won't go to New York City or Gettysburg or eat a lobster in Maine. Suddenly time is moving to fast and I'm in a panic. I'm not supposed to panic damn it. I have one job, keeping my shit together.
He is afraid his legs will just stop working one day and I tell him it won't be that way but I mean there will be a day where they just won't be strong enough to stand on. I mean it won't be an overnight thing but then 5 to 9 seemingly happened overnight. Duchenne has changed him. His face is rounder, the steroids have made him on edge all the time, he gets picked last in gym and at recess. He wears braces on his legs with special shoes and its hard to buy him clothes. We can't pretend we are just like everyone else anymore.
I don't want to lose Robbie. I don't want him to go to a "better place," I hate grieving what I still have. I hate being angry. I hate being sad. Sometimes I hate feeling happy.
Shelby and I feel so alone sometimes. It's like we are in a room full of family and everyone is laughing and happy and we are jealous. Sometimes I think of my parents and the joy they must have felt watching their children grow and knowing it would keep going. I have to watch all these things he has worked so hard to achieve slowly go away. The walking, the perfect penmanship, the xbox games, the ability to eat, the hugging, until he loses the ability to breath, til his heart cannot continue to beat.
I'm sorry I know that's morbid but that doesn't change it's truthiness. I know for all of us the future isn't a guarantee but it's at least a possibility. The inevitable end of duchenne is a guarantee at least until we have a medical breakthrough. Sometimes that is really hard to accept
Saturday, November 7, 2015
Thursday, August 13, 2015
Be nice
Every once in a while I find myself researching upcoming vacations. Okay that's a lie I research vacations all the time. The problem with this is every so often I click on a thread on a forum that's titled something like handicap accessible cruising or carnival's disability accessibility. It's always a mistake to click on these. It's usually like 2am and I find myself crying because wow people can be mean. So today I'm going to to write my little blog dedicated to those people.
EQUAL DOES NOT MEAN EXACTLY THE SAME. You see when I say i want my son to have the same ability to use the bathroom at school it means he needs things that a child w/o special needs doesn't need. So while it may seem like special treatment to put a bar next to the toilet its actually there so he can get up and down from the toilet. He can't do that w/o the bar so in order for him to use the bathroom like everyone else he has the bar. That is equal treatment not the same treatment but equal treatment.
I'm sick of reading the word "snowflake". yes this child is the most precious child ever because he's mine. I also think my girls are precious and my niece and nephew. I will keep insisting that the world accommodate my child. Are you saying in my shoes you wouldn't? Oh and I realize taking a cruise is not a necessity but I rarely look at Robbie and say you have muscular dystrophy you are only allowed the necessities in life. That's just stupid.
I don't expect the world to cater to my son. I understand that his life and by extension ours comes w/ limitations. Screw you if you think that I am not completely aware of this 24/7 365 days a year. I do expect the world to be kind and understanding. I expect when I say he can't walk to the bus stop that a bus will pick him up at our house. That his school will make accommodations for him. That his doctors and care staff actually know what duchenne is. Have you ever explained your child's disease to a doctor that had no clue what it was? I have. It's really hard to trust someone with your kids health when they have no clue about his disease.
I get the Internet makes it easy to say whatever we want and hide behind a screen name. That we can find an entire community of jerks to be jerky with if we want. Maybe when you get all fired up about the audacity of a boy with down syndrome wearing a letter mans jacket "he didn't earn." or a cruise line trying to be more accommodating to a people with disabilities, or people wanting their kids to experience Disney World easier because they don't have the stamina a healthy child would, maybe you could I don't know not comment.
My kid has muscular dystrophy. I sat in an office with a doctor who told me that there is no cure. I have held his foot down while he was forced into a leg cast twice a week for 2 months. i have held him when he cried and told me he hates muscular dystrophy. I have spent hours trying to convince him he doesn't have to be embarrassed to wear his braces to school. I deal every day w/ a person who's prolonged life depends on steroids.
All I'm saying is when you go out into the Internet world and write these awful things I see them. It hurts me, someday it will hurt my child. Is it really too much to ask you to just think about what my family is going through and just not type anything? I guess I'm a big believer in being quiet it you have nothing nice to say.
EQUAL DOES NOT MEAN EXACTLY THE SAME. You see when I say i want my son to have the same ability to use the bathroom at school it means he needs things that a child w/o special needs doesn't need. So while it may seem like special treatment to put a bar next to the toilet its actually there so he can get up and down from the toilet. He can't do that w/o the bar so in order for him to use the bathroom like everyone else he has the bar. That is equal treatment not the same treatment but equal treatment.
I'm sick of reading the word "snowflake". yes this child is the most precious child ever because he's mine. I also think my girls are precious and my niece and nephew. I will keep insisting that the world accommodate my child. Are you saying in my shoes you wouldn't? Oh and I realize taking a cruise is not a necessity but I rarely look at Robbie and say you have muscular dystrophy you are only allowed the necessities in life. That's just stupid.
I don't expect the world to cater to my son. I understand that his life and by extension ours comes w/ limitations. Screw you if you think that I am not completely aware of this 24/7 365 days a year. I do expect the world to be kind and understanding. I expect when I say he can't walk to the bus stop that a bus will pick him up at our house. That his school will make accommodations for him. That his doctors and care staff actually know what duchenne is. Have you ever explained your child's disease to a doctor that had no clue what it was? I have. It's really hard to trust someone with your kids health when they have no clue about his disease.
I get the Internet makes it easy to say whatever we want and hide behind a screen name. That we can find an entire community of jerks to be jerky with if we want. Maybe when you get all fired up about the audacity of a boy with down syndrome wearing a letter mans jacket "he didn't earn." or a cruise line trying to be more accommodating to a people with disabilities, or people wanting their kids to experience Disney World easier because they don't have the stamina a healthy child would, maybe you could I don't know not comment.
My kid has muscular dystrophy. I sat in an office with a doctor who told me that there is no cure. I have held his foot down while he was forced into a leg cast twice a week for 2 months. i have held him when he cried and told me he hates muscular dystrophy. I have spent hours trying to convince him he doesn't have to be embarrassed to wear his braces to school. I deal every day w/ a person who's prolonged life depends on steroids.
All I'm saying is when you go out into the Internet world and write these awful things I see them. It hurts me, someday it will hurt my child. Is it really too much to ask you to just think about what my family is going through and just not type anything? I guess I'm a big believer in being quiet it you have nothing nice to say.
Friday, April 10, 2015
Should be Sleeping
I've found in the last year or so it gets harder and harder to share the thing I'm feeling. Maybe it's not even how I'm feeling i think I have pretty much well documented that. I think it's more like Robbie isn't five years old anymore. He's eight and duchenne is a louder and more disturbing presence in our life.
I guess it could be denial a little. Not that denial has ever done anyone a lick of good. You know I see his calve muscles getting bigger, I hear his stutter, I filled out the handicap parking pass form, but actually putting into word that duchenne is now visible in my son? That makes it real. that makes me terrified.
Three years ago I could think "we have time." or "We have 7 years until a wheel chair." but now? It's four years away if we are lucky and I'm panicked. There is so much I still want to do. What if I am not as strong as those other blogging moms? Simple honest truth I don't want to do this. Am I allowed to say that? I mean who wants to do this?
I say I don't want to do this not in an I quit way. I will do this and be as strong as that little boy needs me to be but I'm human. Today we got new ABO's (leg braces) They are big and obvious and there is this wedge and he is going to hate wearing them to school. What the hell am I supposed to tell him? How do I make him feel okay about it? Oh and he has to ease into wearing them while he stimultaneously eases into the new night onesI'm not sure how many hours other people have in their days but how I am going to ease him into a total of 4-8 hours between the two during the 5 hours he has after school? No more playing outside? That seems unfair.
I think when your dealing with something like this you have moments where you feel good and happy. I mean we have pretty happy and fulfilling life but then your getting xrays and braces and you wonder just for a second why can't he be okay? I just hate to see life be so hard for him. the nights he's scared and feeling lonely and I hold him in my arms and I feel so damn useless because I am so powerless.
Mom's fix things.I turn a pound of chicken breast into chicken Parmesan. give band aides and kisses. I give my tween advice and listen to whatever is bothering her, I listen to my kindergartner read annoying books about Taco the dog and help her when she is stuck on a word, I make their life easier. How do i make his life easier when it feels like we are running some terrible race with new impossible obstacles all the time?
2 am posts are usually the best for crazy grammar and typos so sorry for that. They tend be the most honest and raw too so special apology to my mom who will hopefully reads this after work.
I guess it could be denial a little. Not that denial has ever done anyone a lick of good. You know I see his calve muscles getting bigger, I hear his stutter, I filled out the handicap parking pass form, but actually putting into word that duchenne is now visible in my son? That makes it real. that makes me terrified.
Three years ago I could think "we have time." or "We have 7 years until a wheel chair." but now? It's four years away if we are lucky and I'm panicked. There is so much I still want to do. What if I am not as strong as those other blogging moms? Simple honest truth I don't want to do this. Am I allowed to say that? I mean who wants to do this?
I say I don't want to do this not in an I quit way. I will do this and be as strong as that little boy needs me to be but I'm human. Today we got new ABO's (leg braces) They are big and obvious and there is this wedge and he is going to hate wearing them to school. What the hell am I supposed to tell him? How do I make him feel okay about it? Oh and he has to ease into wearing them while he stimultaneously eases into the new night onesI'm not sure how many hours other people have in their days but how I am going to ease him into a total of 4-8 hours between the two during the 5 hours he has after school? No more playing outside? That seems unfair.
I think when your dealing with something like this you have moments where you feel good and happy. I mean we have pretty happy and fulfilling life but then your getting xrays and braces and you wonder just for a second why can't he be okay? I just hate to see life be so hard for him. the nights he's scared and feeling lonely and I hold him in my arms and I feel so damn useless because I am so powerless.
Mom's fix things.I turn a pound of chicken breast into chicken Parmesan. give band aides and kisses. I give my tween advice and listen to whatever is bothering her, I listen to my kindergartner read annoying books about Taco the dog and help her when she is stuck on a word, I make their life easier. How do i make his life easier when it feels like we are running some terrible race with new impossible obstacles all the time?
2 am posts are usually the best for crazy grammar and typos so sorry for that. They tend be the most honest and raw too so special apology to my mom who will hopefully reads this after work.
Monday, March 30, 2015
Why Someone is Brave-Kelsey McGregor
This is Kelsey's paper about her brother.
I think my brother is very brave. He knows that he is "different" but goes to school every day. He goes to gym class once a week and is slower then other kids, he always gets tagged first. He wears casts to help his legs sometimes and doesn't know how to answer when a kid ask why he is wearing casts even though his legs aren't broken. When we are about to start a new school year my parents ask if he will tel his friends about MDA summer camp. He says he doesn't want them to know. He takes medicine each day that makes him grumpy and mad, but he comes home without getting in trouble. His legs hurt but he still goes on walks, to the zoo, to Disney World, and climbs high stairs at indoor water parks and our grandparents house. He walks around ford field once a year every year. He goes through too much for a little boy but somehow he's still brave.
I think my brother is very brave. He knows that he is "different" but goes to school every day. He goes to gym class once a week and is slower then other kids, he always gets tagged first. He wears casts to help his legs sometimes and doesn't know how to answer when a kid ask why he is wearing casts even though his legs aren't broken. When we are about to start a new school year my parents ask if he will tel his friends about MDA summer camp. He says he doesn't want them to know. He takes medicine each day that makes him grumpy and mad, but he comes home without getting in trouble. His legs hurt but he still goes on walks, to the zoo, to Disney World, and climbs high stairs at indoor water parks and our grandparents house. He walks around ford field once a year every year. He goes through too much for a little boy but somehow he's still brave.
Wednesday, March 4, 2015
jumbled
I haven't posted in months. The truth mentally I've been struggling. Sometimes its hard to own that to put it out for the world to see. There is a lot of pressure to think positive, to live in the moment, to focus on the good. I can't tell you how much I wish that was possible but at the end of the day I'm just human.
My son is dying, slowly. It's a truth I can't deny. It's a damn ugly way to live. Right now there is a 0% percent survival of duchenne muscular dystrophy. Zero. There's no odds to win, no poison to put in his body and hope it takes the bad stuff away, nothing, I don't even understand how that is possible.
Most the time I can shove that down. I mean I have to the truth is well it's paralyzing and I have dishes wash, lunches to pack, loads of laundry to fold. But sometimes I can't and I am afraid to admit that because the world isn't okay with hearing it. We want the feel good stories. We want the strength, and the fight. We don't want to hear about the dark times.
The nights a man and woman lay in bed and cry together because it just hurts too bad and there is only one other person that really truly gets it. The times a mom holds a little boy when he asks why? and she has no answer. The times I'm so angry at a God I don't think hears me. The times I am so jealous of everyone's healthy kids I can't see straight. The times a little boy hurts his knee and his mom and dad gasp because his leg muscles are breaking down and they can see it. The times an 8 year old is screaming at you about being hungry and crying and tells you he doesn't know why he is so mad and mom knows its the steroids.
People tell me I'm strong or I'm special but I'm not. I'm just a person that walked into a doctors office one day and walked out broken. It's not strong to love your child it's just what we do. If I could wish this away and go back to being the mom with 3 healthy kids I would. I think I'm not supposed to say that. I am supposed to say I wouldn't change it but that would be a lie. I want him to grow stronger. I want him to fall in love, have babies, find his life calling, and mostly I want him to live.
To be perfectly honest it's all weighing on me. He's 8 by 10-12 he's likely going to be in a wheelchair. Every time his writing improves, or he rides his bike further, or he cuts his food with a knife it is so bitter sweet. Every time he hugs us, gets out of bed at night, every time he climbs into the car. His Dad and I know we have to watch him lose those things. It isn't supposed to work that way.
i stopped believing God has a plan on December 15th 2011. I just can't believe and accept that this was a plan for my kid. Is that unfaithful? Maybe but it's how I feel. I have lost relationships because of that and it saddens me but I can't pretend to make other people comfortable.
I am very lucky to have my husband. When we first found out it was so hard to reconcile the different ways we were grieving. It took a lot of time and honesty and yelling to get to a place where we can say whatever horrible though crosses are mind and have someone to just wrap an arm around you and nod. Sometimes Shelby will get really wrapped up in handicap accessible housing. That is really hard for me to deal with but it's how he copes and now I know he's handling because right now it's too hard for me. I feel guilty a lot I know this isn't my fault but I can't not feel guilty. Don't we always feel guilty when our children hurt and we are powerless. Shelby used to struggle with that and try to make me feel better but now he just listens. Emotions are not something we can control and having one person that will hold me no matter what I say it's just a gift and I am proud we worked so hard to get there.
One more thing I want to say and I know this post has been kind of all over the place. Shelby and I are greiving. It's weird to greive what you haven't lost but still we greive. We greive the football he can't play, or the legs w/o braces he can't have. We greive the grandchildren we likely wont have. We greive for our daugthers knowing they will lose their brother they love so much and knowing the times he gets our attention before them. When we are angry or take something the wrong please don't be angry we never want to anger anyone we are just walking around emotionally wounded. We don't want or expect anyone to fix it for us. We just want to know we aren't alone.
My son is dying, slowly. It's a truth I can't deny. It's a damn ugly way to live. Right now there is a 0% percent survival of duchenne muscular dystrophy. Zero. There's no odds to win, no poison to put in his body and hope it takes the bad stuff away, nothing, I don't even understand how that is possible.
Most the time I can shove that down. I mean I have to the truth is well it's paralyzing and I have dishes wash, lunches to pack, loads of laundry to fold. But sometimes I can't and I am afraid to admit that because the world isn't okay with hearing it. We want the feel good stories. We want the strength, and the fight. We don't want to hear about the dark times.
The nights a man and woman lay in bed and cry together because it just hurts too bad and there is only one other person that really truly gets it. The times a mom holds a little boy when he asks why? and she has no answer. The times I'm so angry at a God I don't think hears me. The times I am so jealous of everyone's healthy kids I can't see straight. The times a little boy hurts his knee and his mom and dad gasp because his leg muscles are breaking down and they can see it. The times an 8 year old is screaming at you about being hungry and crying and tells you he doesn't know why he is so mad and mom knows its the steroids.
People tell me I'm strong or I'm special but I'm not. I'm just a person that walked into a doctors office one day and walked out broken. It's not strong to love your child it's just what we do. If I could wish this away and go back to being the mom with 3 healthy kids I would. I think I'm not supposed to say that. I am supposed to say I wouldn't change it but that would be a lie. I want him to grow stronger. I want him to fall in love, have babies, find his life calling, and mostly I want him to live.
To be perfectly honest it's all weighing on me. He's 8 by 10-12 he's likely going to be in a wheelchair. Every time his writing improves, or he rides his bike further, or he cuts his food with a knife it is so bitter sweet. Every time he hugs us, gets out of bed at night, every time he climbs into the car. His Dad and I know we have to watch him lose those things. It isn't supposed to work that way.
i stopped believing God has a plan on December 15th 2011. I just can't believe and accept that this was a plan for my kid. Is that unfaithful? Maybe but it's how I feel. I have lost relationships because of that and it saddens me but I can't pretend to make other people comfortable.
I am very lucky to have my husband. When we first found out it was so hard to reconcile the different ways we were grieving. It took a lot of time and honesty and yelling to get to a place where we can say whatever horrible though crosses are mind and have someone to just wrap an arm around you and nod. Sometimes Shelby will get really wrapped up in handicap accessible housing. That is really hard for me to deal with but it's how he copes and now I know he's handling because right now it's too hard for me. I feel guilty a lot I know this isn't my fault but I can't not feel guilty. Don't we always feel guilty when our children hurt and we are powerless. Shelby used to struggle with that and try to make me feel better but now he just listens. Emotions are not something we can control and having one person that will hold me no matter what I say it's just a gift and I am proud we worked so hard to get there.
One more thing I want to say and I know this post has been kind of all over the place. Shelby and I are greiving. It's weird to greive what you haven't lost but still we greive. We greive the football he can't play, or the legs w/o braces he can't have. We greive the grandchildren we likely wont have. We greive for our daugthers knowing they will lose their brother they love so much and knowing the times he gets our attention before them. When we are angry or take something the wrong please don't be angry we never want to anger anyone we are just walking around emotionally wounded. We don't want or expect anyone to fix it for us. We just want to know we aren't alone.
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