It's 11:30 at night and we are sitting on the couch playing a game. Robbie mentions he needs to grab something from his room, He gets up but he trips. We try to get to him in time but he falls. It's a slow fall so we think he's okay. He's on the ground though and he is making weird noises. He says he can't get his breath. I'm on the ground with him now and his lips are starting to turn blue. He's sitting up but its too hard for him to do on the ground anymore. He just doesn't have the core strength. I get behind him let him lean back into me and we get him breathing and calm again. Shelby gets a gate belt and we get him in a desk chair. He is still kind of panicked his back hurts a little and he wants his water. Slowly he starts feeling better. I go where he can't see me and I break down. Madi finds me, I tell her it's okay I was just scared and she says she was too. He's okay, I leave the baby monitor in his room for the night. I listen to him watching youtube videos and commenting out loud to himself, he's okay, he had a minor fall and a panic attack, I know that but I am having trouble relaxing and going to sleep.
Duchenne happens slowly. taking a little bit and a little bit more all the time. Most people miss the subtle changes to our life or the small ways we are just different. Some times the 5 of us forget too. We start feeling normal but normal just never comes there is always some new thing we are adjusting to. Tonight we were just sitting in our family room playing a robot rap battle game. We had spent most the day doing Christmas prep and though this time of year brings up so much sad feeling we were just content for a few minutes. Then I was on the floor with my 13-year-old in my arms trying to get him to calm down and breath. He's okay I just keep telling myself. Please just let him be okay.
I hate sharing this stuff. It's 2 days before Christmas. I know it sounds dramatic and it's not feel good or inspiring but here's the thing: this is what it is like in our house. We are close and we play games where we are rapping robots. There are presents are hidden all over the house and last night we had nitrogen ice cream and took our kids Christmas shopping. Tomorrow we are going to the movies with my parents. We will open presents Christmas eve morning before we go spend a few days in Ohio with Shelby's parents. We will come home and have Christmas with my family. We will then have our annual "McGregor Week" which is a fun way of saying we are going to wear PJs, make our favorite foods and binge-watch everything. Our life can feel really hard and overwhelming because, I mean, it is. Also, it is full of love and laughter.
I'm angry a lot of the time. I think its represented a lot on this blog. Honestly, I recently went back and read a lot of my posts from the last couple of years and I realized almost all of them are me trying to justify feeling angry. I'm sort of tired of doing that. I'm not going to be doing that anymore. Anger is just an emotion. I was watching an interview with Alanis Morrisette recently and she talked about anger and the power it represented. That a lot of bad things can be born out of anger but there is also power there. I agree with her and I also think a lot of good can come from anger. As long as its not the only thing I'm feeling I'm just going to let it be. Maybe it's not a character flaw, maybe I'm just strong enough to let my self express it.
2019 was sort of a weird year around here, highs and lows and in-betweens, but I am so happy to be my husband's wife and my kid's mom and I hope everyone of my friends and family have a happy holiday.
Monday, December 23, 2019
Friday, November 1, 2019
Complicated
I spend a lot of time trying to explain complex feelings. I don't even know why I feel a need to do that, just that sometimes putting it in writing or saying it out loud helps. When Robbie was diagnosed there was so much advice and there still is but most of that just hurts. I know no one means it to hurt but all I tend to hear is that I am somehow doing this wrong. Then I get mad because I don't know the best way through this, so I'm just doing my best. I'm convinced there isn't a right way. Duchenne is tragic, it asks a lot of a family, and then it asks for more. I don't have answers and I'm not compelled to write about my feelings so I get an answer. I just know that for me being honest with my feelings is the only way I can deal with them. I'm convinced that I am not alone in needing to be upfront with my grief. I don't want to hide it, in fact, I refuse to hide it. Some times it's ugly and angry, sometimes it's sad, but mostly it's just true.
I don't believe I can be strong enough for Robbie if I'm not strong enough to be honest when I feel like I am drowning in feelings. I used to think feeling angry was wrong. Like if I was angry I wouldn't be able to feel the good stuff in my life. The thing I discovered for me is that I am strongest when I let myself feel the weakest. That my way of getting myself, my son, and my family through the hardest things life throws at us is to just embrace the feelings. There is no shame in being sad or angry, just as there is no shame in laughing or just feeling joy.
When we came home after our 2 weeks with our families after Robbie's diagnosis, I was terrified of feeling good. Like it wasn't allowed. That if I made love to my husband, or enjoyed a book, or cooked a meal I liked to cook, I would be selfish. That if Robbie was going to deal with this for the rest of his life I had an obligation to stop enjoying mine. It sounds crazy now, but back then I was so lost nothing made sense to me anymore. All my life I had been able to find a trite saying, a silver lining, something I could point to and know that's why this thing had happened, but duchenne, that I couldn't give a positive spin. That felt like a failure on top of all the other reasons I felt like I had failed.
Eventually, the newness of grief wears off. For some reason, it has become almost expected that as soon as the grief becomes manageable you just push it down and move on. We try to shield ourselves from the things that hurt, to convince ourselves that feeling a bad feeling somehow makes us weak but what makes us weak is not letting those things out. Letting it consume us until we seem fine on the outside but we are a mess internally. I knew when we got a diagnosis that the entire trajectory of my family's life was going to be different than the one I had envisioned. I knew that my kids were going to spend their childhoods dealing with things I couldn't have imagined as a child. I knew that being strong for them made meant giving them a safe place to feel bad, or angry, or sad, or happy. That I had to be honest with my feelings so they could be honest with their own feelings.
I am sad almost every day, some days it's more anger then sadness but its a grief that is a part of who I am because it just is that way. I'm happy too, a lot more then I am sad or angry, I know to appreciate the good things because I know just how fragile they are. My kids get annoyed that I make them celebrate little things that seem insignificant but I tell them they won't ever look back and regret the times they celebrated, No one regrets that but I also want them to know they won't regret the times they let themselves feel bad. That the bad feelings are just as legitimate as the good ones. That a well-placed F word can be satisfying. That standing up for the things you think are right or wrong will always always be worth it.
I refuse to help anyone else be in denial about what is happening to my son. It's not my job to make any of this okay for anyone, even him. It's my job to fight for him, to give him a safe place, to teach him how to handle his emotions. I'm not perfect at it, I do sometimes take the easy way out, and that is okay too. Mostly, when I look back at this time of my life I want to know that I was the most honest, when it hurt the most and when it felt the best.
I don't believe I can be strong enough for Robbie if I'm not strong enough to be honest when I feel like I am drowning in feelings. I used to think feeling angry was wrong. Like if I was angry I wouldn't be able to feel the good stuff in my life. The thing I discovered for me is that I am strongest when I let myself feel the weakest. That my way of getting myself, my son, and my family through the hardest things life throws at us is to just embrace the feelings. There is no shame in being sad or angry, just as there is no shame in laughing or just feeling joy.
When we came home after our 2 weeks with our families after Robbie's diagnosis, I was terrified of feeling good. Like it wasn't allowed. That if I made love to my husband, or enjoyed a book, or cooked a meal I liked to cook, I would be selfish. That if Robbie was going to deal with this for the rest of his life I had an obligation to stop enjoying mine. It sounds crazy now, but back then I was so lost nothing made sense to me anymore. All my life I had been able to find a trite saying, a silver lining, something I could point to and know that's why this thing had happened, but duchenne, that I couldn't give a positive spin. That felt like a failure on top of all the other reasons I felt like I had failed.
Eventually, the newness of grief wears off. For some reason, it has become almost expected that as soon as the grief becomes manageable you just push it down and move on. We try to shield ourselves from the things that hurt, to convince ourselves that feeling a bad feeling somehow makes us weak but what makes us weak is not letting those things out. Letting it consume us until we seem fine on the outside but we are a mess internally. I knew when we got a diagnosis that the entire trajectory of my family's life was going to be different than the one I had envisioned. I knew that my kids were going to spend their childhoods dealing with things I couldn't have imagined as a child. I knew that being strong for them made meant giving them a safe place to feel bad, or angry, or sad, or happy. That I had to be honest with my feelings so they could be honest with their own feelings.
I am sad almost every day, some days it's more anger then sadness but its a grief that is a part of who I am because it just is that way. I'm happy too, a lot more then I am sad or angry, I know to appreciate the good things because I know just how fragile they are. My kids get annoyed that I make them celebrate little things that seem insignificant but I tell them they won't ever look back and regret the times they celebrated, No one regrets that but I also want them to know they won't regret the times they let themselves feel bad. That the bad feelings are just as legitimate as the good ones. That a well-placed F word can be satisfying. That standing up for the things you think are right or wrong will always always be worth it.
I refuse to help anyone else be in denial about what is happening to my son. It's not my job to make any of this okay for anyone, even him. It's my job to fight for him, to give him a safe place, to teach him how to handle his emotions. I'm not perfect at it, I do sometimes take the easy way out, and that is okay too. Mostly, when I look back at this time of my life I want to know that I was the most honest, when it hurt the most and when it felt the best.
Thursday, May 30, 2019
Surviving
I don't know for sure when I broke. I don't know if it was in the moment of diagnosis or before while we searched for an answer. The praying and begging and bargaining I did over those months. Going from doctor to doctor specialist to specialist. Each" there is something not quite right here but we need to do testing" took a little more of me. I thought a diagnosis would give me some magic answer and we would do what we needed to make him whole and then we would move on.
No one told us what they were testing for, which was cruel. I often wonder if they thought they were saving us from hurt, did they think it noble to hand us over to a google search? I knew what the doctor would say that morning. I cried on my knees in the bathroom begging a God I still believed would hear to spare my child. Take me just let him be okay. When they gave us the news it was like our life split from happiness, joy and, struggle but full of color to surviving and gray.
Survival when all around you there is life is cruel. It breaks me apart and I put myself back together again almost daily. I pretend so well. Laugh off the insomnia, Embrace the anger, pack the lunches, take the nap, beat myself up for not being enough on another day and f-ing smile. Over and over again. Fake the happy, please the masses, be okay because you're the "special parent". Please, everyone, stop saying that. This isn't special. It's not an inspiration. You can't put a bow on it and make it pretty. It hurts and I still pray to a God I don't think is there but if he is that no one else I love will ever feel this "special pain".
I used to think just get through this moment and then it will get better but progressive degenerative illness isn't like that. It doesn't get better, you don't start to accept it. You just wait. You wait for the next checkbox. You watch the heel cords tighten, you watch the steroids do their thing, You knew the broken bones were inevitable even as you tried to let him have his freedom, you know what's next and how very far science is from where you want it to be, and worst of all you watch all 3 of your kids struggle to understand that which is senseless.
I like to pretend things are normal, I think any parent struggling with different does the same. We all find a way to live with the different, to find a certain joy in it, but make no mistake I will always grieve for the normal we do not have. I won't pretend this "new normal" is enough because it's not. Children suffering is just not okay.
Maybe I have broken in the years since his diagnosis, as reality has set in and our life started to feel more and more lonely and isolated. Maybe broken isn't the right word? Maybe I'm just different now? It's not that life didn't turn out how I planned, because that happens to everyone. It's that life will never return to normal. In our house, there will constantly be a new normal to adjust to, a new challenge to survive, a new thing we can't do anymore. There will always be a loss.
No one told us what they were testing for, which was cruel. I often wonder if they thought they were saving us from hurt, did they think it noble to hand us over to a google search? I knew what the doctor would say that morning. I cried on my knees in the bathroom begging a God I still believed would hear to spare my child. Take me just let him be okay. When they gave us the news it was like our life split from happiness, joy and, struggle but full of color to surviving and gray.
Survival when all around you there is life is cruel. It breaks me apart and I put myself back together again almost daily. I pretend so well. Laugh off the insomnia, Embrace the anger, pack the lunches, take the nap, beat myself up for not being enough on another day and f-ing smile. Over and over again. Fake the happy, please the masses, be okay because you're the "special parent". Please, everyone, stop saying that. This isn't special. It's not an inspiration. You can't put a bow on it and make it pretty. It hurts and I still pray to a God I don't think is there but if he is that no one else I love will ever feel this "special pain".
I used to think just get through this moment and then it will get better but progressive degenerative illness isn't like that. It doesn't get better, you don't start to accept it. You just wait. You wait for the next checkbox. You watch the heel cords tighten, you watch the steroids do their thing, You knew the broken bones were inevitable even as you tried to let him have his freedom, you know what's next and how very far science is from where you want it to be, and worst of all you watch all 3 of your kids struggle to understand that which is senseless.
I like to pretend things are normal, I think any parent struggling with different does the same. We all find a way to live with the different, to find a certain joy in it, but make no mistake I will always grieve for the normal we do not have. I won't pretend this "new normal" is enough because it's not. Children suffering is just not okay.
Maybe I have broken in the years since his diagnosis, as reality has set in and our life started to feel more and more lonely and isolated. Maybe broken isn't the right word? Maybe I'm just different now? It's not that life didn't turn out how I planned, because that happens to everyone. It's that life will never return to normal. In our house, there will constantly be a new normal to adjust to, a new challenge to survive, a new thing we can't do anymore. There will always be a loss.
Tuesday, May 14, 2019
Today
I'm never going to be an inspiration. No one will wax poetically about my strength and positivity in the face of obstacles. I won't say things are great when they aren't. I won't shrug off my families difficulties with platitudes about God's plans or finding a bright side. I used to feel guilty about that. Like I was somehow to not allowed to face this in an authentic true to self way. Like I owed it to everyone else to be happy. That is silly because at the end of the day my family has to get through this in a way that works for the 5 of us. I don't have to make things easier for anyone but us.
I don't mean that I walk around in a fog of anger and resentment because I don't do that. But I'm not okay, I honestly do not remember what okay felt like. It is not okay that this happens to any kid. I don't care if there is some figure sitting up in paradise with some grand scheme, This. Is. Not. Okay. 12-year-old boys shouldn't have femurs so brittle they break them twice in 16 months. If this is a plan it's a crappy plan. I will not accept there is some magic plan behind the scenes that makes this okay because, Why? There isn't a justifiable reason to do this to a child, any child. I refuse to give my faith, my prayers, my hope to an entity that allows my kid or any kid to suffer like this, I'm done. I'm really good at commitment but I refuse to say this is some mystical plan that I just don't understand. And if I am wrong and there is a plan, this plan hurts my kid and I want no part in it.
A cell divided badly and my son has to suffer for his entire life. My girls have to grow up seeing this, feeling this, living in fear. This time when he fell he was at school. The girls and I didn't get to him until he was already in a room at the ER. I will never in my life forget the terror in my girls eyes. The tremble in my mom's voice when I asked her to come to get me or the raw pain and fear in Robbie's on the phone when I asked him he was okay on the phone and said: " It, hurts, Mom." Do you know how much hurts to know I can't ever make any of that better? That no one can. That my whole family is at the mercy of this 6th family member none of us asked for.
I feel so alone sometimes, and I know some of it's me because I don't know what I or we need help with. We need a ramp and a ridiculously expensive van, and someday lifts for the house and equipment that I can't even imagine yet and I don't know how you afford those things and still give your child any kind of life quality. Which is the only thing I feel like I can do?
I am stressed all the time. My husband is stressed all the time and it feels like there is always a judgment to be made about how we are handling everything but rarely a hand up. I know both sets of parents would walk through fire if it would help so I don't want anyone to think I'm on here blasting anyone. I feel angry and helpless and alone. It's like Shelby and I do such a good job that everyone just assumes we have it handled. I mean I guess we do but it's damn lonely.
I used to have all these theories on how I would handle one of my kids having special needs but those were all based on 2-hour T.V. movies. The truth is it's just a constant battle for oxygen while we drown in the unfairness of the situation. I wish I could see some light right now, I wish I could feel hope, I wish I could find faith, but I can only be me.
I don't mean that I walk around in a fog of anger and resentment because I don't do that. But I'm not okay, I honestly do not remember what okay felt like. It is not okay that this happens to any kid. I don't care if there is some figure sitting up in paradise with some grand scheme, This. Is. Not. Okay. 12-year-old boys shouldn't have femurs so brittle they break them twice in 16 months. If this is a plan it's a crappy plan. I will not accept there is some magic plan behind the scenes that makes this okay because, Why? There isn't a justifiable reason to do this to a child, any child. I refuse to give my faith, my prayers, my hope to an entity that allows my kid or any kid to suffer like this, I'm done. I'm really good at commitment but I refuse to say this is some mystical plan that I just don't understand. And if I am wrong and there is a plan, this plan hurts my kid and I want no part in it.
A cell divided badly and my son has to suffer for his entire life. My girls have to grow up seeing this, feeling this, living in fear. This time when he fell he was at school. The girls and I didn't get to him until he was already in a room at the ER. I will never in my life forget the terror in my girls eyes. The tremble in my mom's voice when I asked her to come to get me or the raw pain and fear in Robbie's on the phone when I asked him he was okay on the phone and said: " It, hurts, Mom." Do you know how much hurts to know I can't ever make any of that better? That no one can. That my whole family is at the mercy of this 6th family member none of us asked for.
I feel so alone sometimes, and I know some of it's me because I don't know what I or we need help with. We need a ramp and a ridiculously expensive van, and someday lifts for the house and equipment that I can't even imagine yet and I don't know how you afford those things and still give your child any kind of life quality. Which is the only thing I feel like I can do?
I am stressed all the time. My husband is stressed all the time and it feels like there is always a judgment to be made about how we are handling everything but rarely a hand up. I know both sets of parents would walk through fire if it would help so I don't want anyone to think I'm on here blasting anyone. I feel angry and helpless and alone. It's like Shelby and I do such a good job that everyone just assumes we have it handled. I mean I guess we do but it's damn lonely.
I used to have all these theories on how I would handle one of my kids having special needs but those were all based on 2-hour T.V. movies. The truth is it's just a constant battle for oxygen while we drown in the unfairness of the situation. I wish I could see some light right now, I wish I could feel hope, I wish I could find faith, but I can only be me.
Monday, April 8, 2019
Partly Cloudy
It feels like I don't belong where I always have belonged. I'm not the same, life changed me and it didn't change the world around me. Motherhood was the goal and motherhood hurt. One day, one doctor blew apart my carefully planned life. It's not his fault, it's not mine, it just is.
They tell me to enjoy what I have. They find obscure bright sides I should look at. They tell me to hope but they don't tell me how. They find inspiration in my carrying on, my smile, Robbie's strength. They find a flaw in every decision we make, and we can't be mad at them. They don't know what we know they aren't carrying around this particular baggage.
It's 3 am and I know I should be asleep but I'm worried. I worry all the time but at night its quiet and the worry can take control of every thought. Everyone I know thinks I am dumb, that I am lucky to have Shelby, that I am weak. Most the time I can pretend it doesn't matter but not at 3 am. At 3am, I worry everyone is right and I wonder how the hell will I get through all the things Duchenne brings? How will I know the right questions to ask? What business do I have advocating for him, when the deli counter at the grocery store gives me so much anxiety. Why in the world would this happen to my son when I am so painfully inadequate when it comes to speaking up? Am I too selfish to give him what he needs, what any of my kids need?
Then it's 4am and my husband notices I am throwing myself all over the bed. "Come here," he says and he tucks me into that space he has reserved for me. My head on his chest his arms holding me tight. "Tell me." he says. I start crying. "It's just so unfair," I tell him. "I know it is baby," he says softly. and we lay alone in the dark clutching to the only other person in the world who knows what we mean.
I try so hard to find joy every day but I refuse to push the bad feelings away. I am not going to pretend I'm okay when I am not and won't demand my children do that either. I won't pretend that moments of joy are only joy because they are also intense moments of grief, living with the knowledge of eventual loss is heavy. We get up every day and we carry on. We are warriors all day, every day, but we are not immune to bad feelings. We just acknowledge their existence. We cry we yell, we hold on to each other at 4am and wake up at 6 am and do the best that we can.
My children are the bravest most amazing people I have ever met and I know I am lucky to be the one they call mom. I also know that I will likely lose one of them way too soon. That first he will lose his ability to walk, and then hug me, and then I refuse to write the rest. We try so hard to not dwell on what is, for now, inevitable but that doesn't mean we pretend it isn't there.
Maybe that's why I don't fit anymore. I used to be bright and sunny. Clouds moved into my life and I can't pretend it's still sunny. it's just partly cloudy now.
They tell me to enjoy what I have. They find obscure bright sides I should look at. They tell me to hope but they don't tell me how. They find inspiration in my carrying on, my smile, Robbie's strength. They find a flaw in every decision we make, and we can't be mad at them. They don't know what we know they aren't carrying around this particular baggage.
It's 3 am and I know I should be asleep but I'm worried. I worry all the time but at night its quiet and the worry can take control of every thought. Everyone I know thinks I am dumb, that I am lucky to have Shelby, that I am weak. Most the time I can pretend it doesn't matter but not at 3 am. At 3am, I worry everyone is right and I wonder how the hell will I get through all the things Duchenne brings? How will I know the right questions to ask? What business do I have advocating for him, when the deli counter at the grocery store gives me so much anxiety. Why in the world would this happen to my son when I am so painfully inadequate when it comes to speaking up? Am I too selfish to give him what he needs, what any of my kids need?
Then it's 4am and my husband notices I am throwing myself all over the bed. "Come here," he says and he tucks me into that space he has reserved for me. My head on his chest his arms holding me tight. "Tell me." he says. I start crying. "It's just so unfair," I tell him. "I know it is baby," he says softly. and we lay alone in the dark clutching to the only other person in the world who knows what we mean.
I try so hard to find joy every day but I refuse to push the bad feelings away. I am not going to pretend I'm okay when I am not and won't demand my children do that either. I won't pretend that moments of joy are only joy because they are also intense moments of grief, living with the knowledge of eventual loss is heavy. We get up every day and we carry on. We are warriors all day, every day, but we are not immune to bad feelings. We just acknowledge their existence. We cry we yell, we hold on to each other at 4am and wake up at 6 am and do the best that we can.
My children are the bravest most amazing people I have ever met and I know I am lucky to be the one they call mom. I also know that I will likely lose one of them way too soon. That first he will lose his ability to walk, and then hug me, and then I refuse to write the rest. We try so hard to not dwell on what is, for now, inevitable but that doesn't mean we pretend it isn't there.
Maybe that's why I don't fit anymore. I used to be bright and sunny. Clouds moved into my life and I can't pretend it's still sunny. it's just partly cloudy now.
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