Update

 I remember hearing his little cry. With Kelsey I had been under anesthesia and i didn't get to hear her entrance into the world. I was determined to hear Robbie. It was a terrible labor for me. I'm not going to go into details but it was rough. He was rushed to the Nicu and i didn't see him again for over 24 hours. He and I had to work so hard to get him out of that Nicu and home. i remember thinking okay, this was the hurdle and now he's thriving everything is okay now. I don't know if it's better we had those 5 years not knowing or if it just makes it worse. i never look at pictures of him from back before where my eyes don't immediately go to his calves. Sometimes I get angry I was so tired in those early years like if i had known maybe i would have welcomed the exhaustion.  It's hard to think about now.

I've been struggling with what I was going to say in this post. Things have changed dramatically the last year. He's not walking anymore. We knew it was coming like you didn't get to outrun it with duchenne but I was sure we would be the family with the kid that could still walk at 18. I was so sure of it that now it feel like betrayal to admit we aren't going to get there. i also thought it would be poetic and the moment would just float on by and it would be so gentle it wouldn't even feel that different. It wasn't like that all.

Robbie fell in our van after his homecoming dance. It was barely a fall. if you had seen it you wouldn't have believed the break it resulted in. I think Shelby and i both knew. First because his foot was facing the wrong direction but also it was just this feeling of finality. He tried so hard to walk after this fall. So so hard I don't want anyone to ever say he gave up. Even now i think a small part of him is hoping he will just be able to walk again. The break healed but it was the catalyst for a lot of struggle since.

At his December clinic visit our doctors really felt it was time to come off of the steroids. that the risks were  outweighing the benefits. it was a gut punch for Shelby and I, we had been so confident that the steroids and given him so many normal-ish years and it felt like an ending.  At that visit the also noticed some issues with his lungs and heart but we all felt it was minor and a natural thing you see in duchenne.

We tried and I think succeeded in convincing ourselves that this would maybe be a good thing. Give him a chance to take a break from the side effects.  Things like mood swings and delayed puberty, all kinds of things really. We envisioned this probably brief but idyllic few years where things could just be simple. A month later he started PT and we all still thought he would walk in fact he was walking at PT in the bars. 

As he came off the steroids we started noticing some things like some swelling and exhaustion. We thought it was because of the steroids. The doctors advised us to slow down the weaning process, and we did. He fell in PT and he couldn't get back up with an electric lift.  There were a couple of mornings he got up and he was like i just can't go to school I am in pain and too tired. Finally, we had another clinic appointment in April.

The first set of doctors come in I think heart and lung doctors but honestly I can't remember the order. We were showing them the swelling and it was like the temperature in the room dropped. They started talking about needing to see heart. he left with the team to do the normal breathing test and an echo. Any way long story short what we thought were symptoms because of his steroids were actually a weakening of his heart and lungs. it was a very long emotional appointment and all 3 of  us left crying.

In some ways none of this is shocking. As of right now, no one gets to beat Duchenne. Statistically he should have been wheelchair bound a lot sooner. It is so much harder than I even imagined. I wish i could put a positive spin on it but its not a positive thing. It's like the bottom fell out, and now nothing is right or normal. We can't go to peoples houses, we can't swim at our neighborhood pool.  Planning vacations has gotten extremely difficult. Everything is just harder and so heavy. And we are so tired. And everything feels scary and unknown.

He is almost 17 and then he will be an adult. His friends are driving.  We are existing in a world that thinks accommodations are handouts. Our bathrooms are too small but grants to help families with disabilities do not cover home renovations. It is maddening and lonely.  It really didn't help that MDA summer camp only took 45 people in michigan this year so he missed out on another year of camp.And while i understand staffing issues it left alot of kids and hurt and sad and alot of parents scrambling. I do think it should have been communicated better to families and I do feel like the Detroit chapter of the MDA needs to fix some stuff. We have been an MDA family since diagnosis and really feel like a door was slammed in our faces. You can guess how many times they have checked in since 2019 that wasn't a request for us to fundraise. Anyway, while I do believe they deserve some heat for recent changes I don't want to get lost in my feelings.

There are millions of families like ours in the world.  And I have always wanted the blog to be a place where people could see that its okay to be sad. That you have been given the worst possible news and there is a chance no one else you are close to well ever experience what is happening to your family. You are allowed to not be okay. you are allowed to be a bitch. You're allowed to be angry. You don't have to think positive. you can hold feelings of joy and sadness at the same time. other people may see weakness but its strength to face down a battle you know you will lose but you keep getting up each day and getting through it. I hate Christmas time. i have spent a decade feeling guilty about it but we got the worst news of our lives 10 days before Christmas.  I can't help that I associate it with that day.  You know what who cares. I still love Thanksgiving.  My kids have multi day birthdays its okay if I phone in Christmas. 

If you're reading this and you struggle with the weight of being okay all the time know that I see you. i get you. I understand the desire to punch someone when they tell you god has a plan. I know the struggle of answering the how are you question. And even the self hatred when you say good. because what i want to say is "Well my son stopped growing around a 11 so his little sister is taller than him, once a month he asks me about taking drivers ed and while I empathize with him its not really possible, my bathrooms are too small, I hate helping him in the bathroom which makes me hate myself, and I worry my husband and I will never have alone time again, and my girls will resent us and need years of therapy, I fear if I go to a therapist they will say you are depressed and everyone that thinks I cant handle things will be right, but I didn't have 2 desserts last night, so I think. I'm okay? How are you?? 

I don't know if there was even a point to any of this. i just know I have taken a step back from a lot of things and i want people to know it's not personal if I don't answer or something, I'm just working through everything right now.

Here, on Mars

When did my life become alien? I try to remember the exact moment but maybe it just always was and I didnt notice until duchenne entered our world. I don't know and not sure it even matters when. It just is.

I used to try to be a relentlessly optimistic person. I aspired to be more positive all the time.  I hated that people saw me as ditsy and naive but I put a lot of effort into being that girl. Shied away from confrontation (still do) until it was a weapon people could wield against me.  I would shove down every negative feeling let everyone walk all over me just so maybe they would like me. I wasn't good at it and eventually it would come out and be ugly. I kept trying to be that person, i thought I was supposed to be, I could explain any awful thing away by saying it led to this other positive thing. I was reliably a yes to everyone in my life.  And then Robbie's diagnosis came and I just couldn't be that anymore.

You don't know how many of these I write and never post, How much time I spend trying to justify the totally justifiable things I feel.  How many things I wish I could share things that have been said to me the last 8 years that have cut me and left me gutted. The way I wonder if those people spent even a second thinking before they spoke and wondering why I am always the one to turn the cheek. The one asked to have grace when so little seems to be afforded to me.

I tell myself its strength to realize they will very likely never have to do what i am doing every day and somehow ignore the crap. Most people don't raise their children, watch them take their first steps, say their first words, write their first letters, learn to ride a bike. Then turn around and tick those things back off the list as they lose those abilities. most people aren't living in fear of a global pandemic while they watch almost everyone moves on as if it couldn't kill your child. Most people aren't leaving facebook because it hurt to much seeing people you love support the policies you knew could hurt your child.

I feel like I am living on Mars, like just this completely different planet. My life seems so different from everyone I know. Just this relentless stress and fear.  There is a global pandemic and I'm like please stay home wear a mask lets protect the vulnerable like my child.  Family members call me a communist.  I don't even know what to do with that. I do know it was the end of that relationship.  I will never understand the people walking around without their masks on as if they have proven anything other then how much they suck.  Imagine being proud you are potentially hurting vulnerable people. Just stupid. I know I'm being harsh and I am completely cool with it. If you are completly cool risking my sons life why should I give a shit if you are mad at me?

I'm so tired of bending myself into a pretzel to try and make this easier for anyone else.  Its why I feel so alien. So different. I cant keep trying to make this pretty or easy so it doesn't hurt anyone, or annoy them, or make them call me names. But why doesn't anyone consider what it is like for us. Do I make it too easy? Am I too quiet for fear of being asked to be quiet? People always tell us how great it is that we make it work but it's not great. Its draining and hard and all anyone sees is the end results. You dont see how hard we work to get him in and out of a pool or lake or ocean you only see the pictures of us smiling. We are supposed to be happy all the time. Not just Shelby and I but our kids too. It's just a pressure none of us need but it's always there. "Why are you guys quiet?"  "Why can't you be happy?"  "Now isn't the time to be sad." None of this was a choice any of us made and sometimes we feel things in ways you can't because so are so damn lucky. You are lucky you didn't sit in that room and hear a doctor tell there is a 0% chance of survival. We did and we are doing the best we can. I wont pretend we are doing it perfect, we aren't, I'm just asking for a little empathy.

My kids will likely not be going back to school this fall. I just don't know how in the world we send any of them back because if one of us is exposed we will all be exposed. I hate the thought of any more digital schooling and homeschooling but i hate the thought of losing Robbie so much more. I know people will disagree but I mean does your kid have reduced lung function? I don't even know why I keep trying to share these things. What do I think is going happen. Suddenly people will my perspective and think "Wow, good point." Laughable.  People will likely roll their eyes call me emotional and go out to do whatever normal people do these days.

I live with a guilt most people will never understand. A pain I don't have enough words to adequately describe.  Robbie was growing in my body where he was supposed to be safe. We will never know what caused the cell to divide wrong. I know I didn't cause this, I know that it isn't my fault, but still I feel guilty. Guilty that i'm fine and he's not. Guilty I wanted a boy so bad. Guilty that I will likely outlive him. Its an anguish i wouldn't wish on  anyone even the assholes screaming about their freedom and endangering him now.  All I am saying is that if you give this virus to someone you love even unintentionally it will be a guilt that will make even your best days haunted.

Eye Doctor

13-year-old boys are not supposed to have cataracts. They aren't supposed to ask their moms if people like them can go to college and move out or have a job. They aren't supposed to say "I can't be a doctor when I'm older because I don't have the muscle control in my hand".   It's just not supposed to be like this.

I'm so tired of texting my family whatever the latest bad news is because I just can't say it out loud. I'm tired of feeling alone yet I'm too tired to not be alone.  I just don't have it in me to be okay when I'm not. To smile while I am crumbling. It's too much.

Cataracts? Because of the steroids that I know are making other things better but have robbed him and our family of so much. Now cataracts? Wtf? Things aren't hard enough? We aren't all stressed enough?

There were all these other families there. Just walking in picking out glasses and ordering contacts but we will never be those families. Sometimes I watch them and I wonder what is that like? Healthy walking kids.  I know that's not fair that we all have problems but  he is a child and he has to have a surgery old people have because the only way to keep him mobile is to pump him full of steroids. Actually, you know what not everyone's issues are the same as watching your child slowly lose function and control of every muscle in his damn body. When the medicine that might MIGHT give you a few more years with him is freaking hurting him.  And I am powerless.  I don't want to lose my son. I just want to know what its like to not grieve your child while you're raising them.

I'm running out of words that will comfort him.  It's not fair. Its stupid. There isn't a God because a God that would let this happen to a child has no place in my heart, in my home.  I'm so tired of smiling and nodding and pretending we are fine so no one thinks I'm emotional. My kid is dying I get to be emotional and scared. I get to be angry.  He gets to be angry and emotional too.

i'm tired of feeling like no one reads this. I'm tired of people only commenting if I put a feel good spin on it. I am so damn tired of spinning shit. My 13-year-old son spends 50% of his life in a wheelchair. He has cataracts. This shit sucks. It sucks. Its not pretty, I don't find faith here. I havent found a community. It's just me and Shelby and the girls holding it all together all the time and I am exhausted. We are exhausted. We just wanted to get him a pair of glassses so he could see the board.

Everything is Not Okay but Everything is.

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.

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.

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.

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.