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A New Normal

Last night, Collin and I cried.

We don’t cry often now – we do our best to be positive in front of our kids, in front of Liam. But, Collin and Liam haven’t been hanging out as much one-on-one. I asked why. Collin’s bottled-up emotions came out. He’s keeping busy because that helps keep him together. I fell completely apart when I found out – he couldn’t – he stood solid for me.

Liam has talked more about his disease than ever lately. He talks about wheelchairs, and his lack of abilities in the swimming pool. He tells us about the kids who don’t understand he has a disease.

He tells me “Mommy, not every one is born the same, right? Some of us have diseases, right?”

He talks about it with the honesty and curiosity of a six-year-old. And, then he talks about his birthday, and that he can’t go to a bounce house. I think of season two of Big Little Lies where the parents think they are protecting their kids but not sharing all the truth. But their kids are listening and absorbing all the words like sponges. Even when we think they don’t get it, they do.

This is our new normal.

As we look to a thing called serial casting, which will help prolong his ability to walk, all I can think about is my little boy in casts during the summer when everyone is playing and swimming. He just said that his Daddy will carry him everywhere he wants to go. At least now I can talk to him, without running to the bathroom to cry.

This is our new normal.

I think about my brown-eyed-boy already growing tired of supplements and this low glycemic diet. He wants pizza and ice cream and Capri Sun. He doesn’t want multigrain bread and whole wheat pasta, and he FOR SURE doesn’t want any damn cauliflower pretending to be pizza crust. And, now steroids will become part of our routine.

This is our new normal.

Liam’s legs get sore from his nightly leg braces he sleeps in. He gets tired sometimes and wants to go home when the other kids are still playing. He can’t climb the ladder of Logan’s bunk bed and he can’t get off the floor on rough days. He steps on my toes and I lift him up.

This is our new normal.

Liam is stuck to me like glue. I think he’s scared. He needs me. Liam follows me everywhere, calls my name when I pee, wants to sleep in my bed (we don’t allow that for some needed peace), wants me to help him get dressed, to scoot down the stairs with him. Every since our Boston trip, Liam only wants me. I can’t blame him – that trip was life changing in many ways – and I too feel deeply connected to Liam in ways I haven’t since he was literally attached to me. I love him so much in ways words can’t describe. I love my other kids the same, but I often don’t sit with that feeling like I did in Boston. I don’t spend every second with them like I did there, keenly focused on them. That’s something I want to give them too. The other thing it solidified for me is that I’m going to do what’s best for his care. I’m done being polite. I’m done letting a doctor talk over me and treat me like I know nothing of my son. I’m resilient and I’ve never been the type to take shit from anyone. I’m not about to start now. And Boston reminded me that people care about my son. He’s not a number to them – he’s a kid they want to help.

This is our new normal.

We swim. We laugh. We go to the movies. We fight. We love. We build forts out of old cardboard and sheets. We make homemade pizza on wheat crust. We run kids to their friends houses and private volleyball lessons. We support an almost 12-year-old with problems beyond her years and an 11-year-old with ADHD. We mow the grass and do the dishes. We do the laundry (correction I DO THE LAUNDRY) and scrub the toilets. Life goes on. It just does no matter how damn hard you try to freeze the moment, to keep everyone safely in your grasp.

This is our new normal.

But… We are determined to fight Duchenne and support our little Liam. We are strong for that fight. We are willing to make sacrifices for our new normal. We are going to cry and scream, but we are also going to find hope, find some sense in all of this, maybe even try to be happy.

We. Are. Family. And that is nothing new.

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And Then Everything Changed

I crawled into bed with Liam, nuzzled up against him. I held him there, in his checkered shorts that matched his Mario Kart pajamas and a top with one of those creeper zombie dudes from Minecraft. He was warm, his small body, as I wrapped my arms around him. He sleepily turned, tussled dirty blonde hair, warm brown eyes like melted chocolate, and said, “I love you mamma.”

See, he’s a snuggle bug and loves his mamma

He wrapped his arms around me now, squeezed tight and then softly scratched the back of my head the way his father does to me. I held my tears because although I already knew what we were going to be told by the doctor – it just felt this was the moment everything changed. The doctor’s words – not the piece of paper, not the speculative nurse on the phone – when the doctor looked me in my eyes and told me what my little Liam would face. Nothing would ever be the same.

A few tears escaped, rolled down my cheeks – slowly and methodically tracing my face down to my neck.

“Don’t cry mamma,” his soft, sleepy voice muttered. “It’s going to be okay.”

I wanted to freeze this perfect moment, our sleepy cuddles, his ability to wrap his arms around me and squeeze, a thing I never in a million years thought I might lose.

Today was diagnosis day.

I had a list.

Another lifetime ago, I was a crime reporter for the Arlington Star-Telegram. And from my few years as a young reporter, I knew that preparing questions was paramount. But, having worked for a children’s hospital for 10 years, as well, I also knew parents’ level of understanding drops significantly in times of crisis….so, let’s just say I made a list of questions.

But, the care team immediately made a mistake. Before we even had a diagnosis from the doctor, a very rushed social worker came in and carelessly with very little feeling or emotion told us about the insurance we would need to apply for to get medical devices like feeding tubes, respirators, etc. BEFORE we even spoke to a doctor, they sent in a person to talk about Liam’s death, at least in my mind. While this is a very necessary conversation because the wait is 10-15 years for that insurance, the social worker didn’t get how careless she had been with her words. Now, this isn’t a diss to social workers, this is my reaction to more disorganization among my care team and about the carelessness of her approach.

I wasn’t happy.

I said, “You realize you are talking about some heavy things and we haven’t even spoken to the doctor about our diagnosis or treatment options. We don’t know what we are dealing with and the doctor specifically instructed us not to go on what I researched online.”

She had attitude. “Do you want me to get the doctor?”

Me, angry tears flowed: “Yes, I want you to get the doctor.”

Liam was still in the room during that – staring at me with wide eyes, hopefully unaware of the eventuality of this horrible jerkface of a disease.

Liam left the room.

The child life specialist with kind eyes and a soft voice gently encouraged Liam to leave with her. He happily obliged, bouncing off behind her with so much joy. The dichotomy of his joy and our grief made the air strange. I realize I started this blog saying the doctor’s words are what I needed to bring reality in this situation, and I found those words critical before I heard them. But in reflection, those words were a blur of information and I just kept thinking of the resident’s sad eyes as he watched the doctor give us this news, his mind obviously thinking how many times he might have to do this thing. I fired off my questions, through hot tears that occasionally rolled down my cheek until I would angrily stub them away, like little cruel acid rain drops reminding me how weak I am.

I asked about studies and drugs, and in that I got a bit of hope back. Our hospital was a site for the Phase 3 PolarisDMD clinical trial with edasalonexent, and we might just qualify.

A flood of people came in and out, including the lead research coordinator enrolling patients and the physical therapist who would work with Liam to find out if he qualified. The coordinator was lovely, kind, hopeful, nice, super pregnant, and the PT had eyes hard like rocks, giving away nothing, no emotion, no feeling, just two gray rocks, eyes that would determine my son’s fate. I try to recreate her in my brain, and I just can’t see anything but cold, dark, gray rocks, and maybe that’s because she almost told us no. So maybe it’s unfair.

They gave us hope and pulled it back and gave it back again.

And, they said we could test for a trial, I stopped crying.

The PT took Liam for a time.

The PT came in and said to the research person, he doesn’t qualify.

The research person looked grim.

I cry again.

“What disqualified him?” I demanded.

“He can’t get off the floor in 10 seconds,” she replied.

“I want to see,” I barked.

“He’s got on tight pants,” Collin says gently, realizing my rising anxiety manifesting in anger and impatience. “Let’s try without them.”

Collin hasn’t grieved much because he really didn’t get the chance, taking care of me in my dark space, managing to get information and push down emotion so one of us was strong enough for two of us. I’ll forever be grateful to him.

“I’ll ask the doctor,” the research coordinator said directly.

The doctor shuffled back in, told me it’s my call if I want to test for it. I said, obviously I do, or you wouldn’t be in here. I’m sure you think I’m sounding rude, but I was so frustrated at the chaotic nature of this disjointed visit. And, I wanted to run out of the room, take my son out of here.

Sure enough, Liam took off the pants and got off the ground in eight seconds. And, the PT looked offended that she hadn’t been right.

But, we decided to not officially test for the drug until the following week, because honestly, I couldn’t take another minute in that room. The walls were closing in on me, I was sweating, and the weight of the world was slowly crushing me. More on that later…

And then we were home again.

We were home again, but nothing was the same, nothing would be the same again. But stay with me here – there is hope in all of this, at least I’m slowly starting to believe that. For now, I’m going to keep crawling in bed with my little man, breathing in his beautiful scent, hoping his joy, strength and love of life will continue to enter my lungs and live in my soul.

With bright smiles and dark eyes, bright smile dark eyes, everywhere I went, oh, I was always searching for ya bright smile dark eyes


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Stealing Liam’s Dance

Visit https://www.cureduchenne.organd http://www.parentprojecmd.org for more information about DMD and how you can get involved.

liam 3Liam dances to his favorite tune. Liam dances when there’s no tune at all. Liam bumps his booty in the grocery store. Liam boogies when he’s had too much purple Fanta. (Only sparingly, don’t judge me!) And, most of all, Liam “shakes it like a polaroid picture” when he’s got so much joy in his little body that it can’t possibly be contained inside one tiny human vessel.

Maybe you can imagine, or more than likely you can’t even imagine, the day when we were told our little chocolate-brown-eyed, chicken-nugget eating six-year-old boy’s legs would some day stop the dance because of a genetic disease – Duchenne Muscular Dystrophy (DMD).

For those of you who don’t know or only briefly recall from an old Jerry Lewis telethon, this disease is a nasty one that wastes away the muscles, stealing away your ability to dance, walk, lift your arms, breathe, swallow and keep your heart beating. DMD mostly affects boys.  You can look it up, but grab a few tissues because it’s horrible to see what this disease is doing to so many young boys. I’ve spared you some of the details but to sum it up, it sucks, it sucks hard.

I knew first.

It was a beautiful Texas Tuesday. I was workpupsing from home with Oliver and Olivia, who were doing their best to distract me (picture to the right), when the phone rang. It was the school, so I picked up thinking I would have to take off my Christmas pajamas (yes it was February – but they are fuzzy pants in my defense), put on some real pants and go pick someone up. I have three kids at the same elementary school, so it’s common to get a call from school about one thing or another.

It was Coach calling to say that during gym period Liam was struggling to get up on a balance beam. As a clumsy person (I spilled not one but TWO cups of coffee just during a volleyball game and got caught in a net – a story for another day), I thought nothing of it. I rang my pediatrician who said, okay, let’s see him. We always joked that Liam had his own pace and we often waited for him to do things it took the rest of us less time to do. I sit in a lot of regret that I didn’t think more of it then. Never in a million years did I think anything was wrong with him, not like this. But in reflection, some of his quirks were actually signs of this screwed up disease.

I’m a worrier but this time I thought maybe he had a sore muscle or maybe he was injured. Of all the things I worry about – my husband can attest there’s a long list – I never once thought his not being able to do something in gym would change my entire life. Collin, that hubby I mentioned, said ahh it’s nothing, just take him in. So, I took him in Friday morning.

Four words changed my life.

“I think it’s neurological.” 

I frantically googled while managing to compose myself enough to get out of the door after she said those words. She referred us to a neurologist, told me to call them as soon as possible as their waits could be months long. I knew then I was going to call from the parking lot. As I waited to check out, one the first things that popped up on google was a video of a boy getting up off the ground who had DMD. And, I knew. At that moment I knew. 

We were able to get an appointment that Tuesday – yeah that was a horrible weekend of compulsive web searches, not sleeping and tears, lots of tears.

I don’t remember much from that Tuesday appointment, but a couple of things stood out.

  1. The doctor looked at the nurse practitioner while feeling Liam’s calves during the physical exam and said in sort of a whisper – “that’s not muscle.” See with DMD the boys get a thing called “fatty calf.” As their muscle fiber deteriorates, it’s replaced with fat cells, so they tend to have thick calves, something I had researched extensively and obsessively. I spent hours looking at his calves, feeling his calves, trying to convince myself I was wrong. And, a split second in the doctor’s office they confirmed my suspicions in sort of a callous, uncaring way, like two researchers. I don’t think they intended to do this thing, to be honest, I just think they assumed I had no clue what they meant when they exchanged those small words. Small words with such a big emotional impact. I’ll never forget it. 
  2. The doctor explained that they would need to run two tests – one for his Creatine Kinase level. Know I’m not a doctor, but the test measures the amount of the CK enzyme in the blood. Simply put, advanced amounts of CK indicates muscle damage. And, the second, he handed Liam a purple or some other bright happy color cardboard box. This box he would need to take down to the lab so he could do genetic testing. The thing that plays on repeat in my mind like a bad movie scene is watching his face when he got that pretty box, when he asked me if he could open his present. He thought that little box contained a gift, a toy of some sort. His brown eyes were shining and he was smiling so big when the doctor handed it to him, and it crushed me. It still crushes me when I picture that moment in my mind, over and over. I sat outside crying in my Dad’s arms when Liam, excitedly, went in to give blood to get these tests that would determine the rest of his life. And, he came out, after giving blood, smiling ear to ear. He told me he was the bravest boy in the room and he didn’t even cry. I couldn’t bear it at that moment, his absolute joy when the world was crashing down around me. I just pulled him in and held him so tight, my tears falling on his dirty blonde hair. “What’s wrong mommy?” he said, and I just said “I love you so much baby.” I had no words, only grief.

So that’s the first part of our story. I don’t know if I’m writing this for anyone really or just documenting this for me and my family. Share if you want, read if you want, comment if you want, correct me on my bad doctoring. I plan to share our journey here, and I’m a little behind. I’ve been a professional writer my whole life. Words put a roof over my head, yet it’s taken me almost six weeks to find these words, and I’m still not sure they are the right ones. They are raw. They are real. 

Brothers and Sisters

Liam is wrestling his sister. She’s way taller, so takes it easy as he attacks her over and over. They both break out into a fit of giggles. I love hearing it. I love the way she looks at him with her big blue eyes and even bigger heart. Samantha wasn’t doing well with this thing, and through therapy she’s moving into a place of acceptance. Being 12 is so hard, but being 12 going through what she’s going through, impossible.

Her Best Sister Act

She steps in when I hit my breaking point. I don’t ask her to do that. I don’t want her to do that, but she just does. She’ll distract Liam with a new game or toy. She will play with him outside or just tickle him. He calms down with her. She’s the messiest girl you’ll ever meet. She is a math whiz and speaks like she’s 20, always has been mature for her age. But being a sibling of a kid with a chronic illness, it’s a different kind of mature. I remember back when we were stuck in a hotel after our house fire. I know right, we’ve dealt with enough trauma already. Samantha was just this skinny little 6-year-old kid who was dressing her tiny little brother on the couch of our hotel. It was just so sweet. And she continues to amaze me with her kindness. I don’t what we did right with her, but we did something right.  

Bright Smile, Dark Eyes

Logan is a kid with a larger than life personality and a loud voice to match it. (so weird that he would have those things haha) He has these deep brown eyes and this hair that would put Edward Cullen to shame. It’s just so shiny and falls perfectly with so little effort. He’s also a vampire, I’m kidding, of course. Logan has this incredibly wide smile and these striking facial features. I tell them all the time he should be an Abercrombie model. He is tall, skinny and has GIANT feet. He has ADHD and faces daily challenges in a school system that is designed for neurotypical learners. He’s the first to crack a pun or tell a joke. He loves to create weird videos and hates sports. He loves video games and most of his friends are gamer girls. Logan is a great kid with a huge heart. He also feels things in the deep way like I feel them. He’s emotional like me.

Misplaced Jealously 

His journey with Liam is much different than Sam’s. He’s incredibly jealous of Liam. He doesn’t understand and he isn’t a forward thinker in the way Sam is – he focuses on what is impacting him in the moment. He just can’t get over how much time Liam spent with me when he was first diagnosed and when we went to Boston. Liam also is fiercely jealous of Logan, and the main thing they fight over is well, me. And while it’s sweet they both love me so much, it’s getting a bit out of control up to physical fighting over who gets to sit by me or hug me first (there’s so much space for them both to do all those things) They even fight over who says I love you more. I know what you are thinking, great problem to have mom. Sure, until you need to shower or brush your teeth and have no space to do that thing. Or maybe hang with Collin. If Liam had his way, he would be with me ALONE every second of the day. Well he lets Samantha around sometimes. He even gets mad when Collin won’t leave for work or if Collin wants to sit with us in his own bedroom. I know some of that is fear. I know some of that is this incredibly sacred bond we created in Boston – we just spent every moment together in this new place so scared, so nervous. We ended up enjoying our time even stuck in the clinic for so long. And I feel it too, that need to spend every second with him, to protect him from everything I can, since I can’t protect him from this bullshit horrible disease.

But all this to Logan = mom loves Liam more.

Oh The Steroids…

And the steroids, the steroids. It just adds fuel to this constant fire between them. Liam gets so much anger in that tiny little body of his. I see it though. He can’t stop it from exploding. We just keep him safe and comfortable. I sometimes just have to walk awaycry in the bathroom, pace the backyard, and come back to him.

The steroids are helping Liam physically in so many ways. And our next trip to Boston is coming up, and I do hope everything else looks good right now for him. I absolutely fear the day my son no longer walks. But what I fear more is when Duchenne ravages his heart, lungs, throat. That’s why we are taking the steroid even though we are dealing with some rage and behavior stuff that would break a parent if they didn’t have to consider the benefit of the meds causing it.

A mom told me it’s going to get better after a few more months and I’m so hopeful for that day.

We’ve got to keep fighting for a cure. We’ve got to keep working toward safer medicines for our sons, alternative treatments to the standard of care. It’s not good enough for them and I’m continually grateful to the hard-fighting parents in this Duchenne community for their efforts to find a cure. I stand with you. I am here to fight with you.

Brothers and Sisters

Liam is wrestling his sister. She’s way taller, so takes it easy as he attacks her over and over. They both break out into a fit of giggles. I love hearing it. I love the way she looks at him with her big blue eyes and even bigger heart. Samantha wasn’t doing well with this thing, and through therapy she’s moving into a place of acceptance. Being 12 is so hard, but being 12 going through what she’s going through, impossible.

Her Best Sister Act

She steps in when I hit my breaking point. I don’t ask her to do that. I don’t want her to do that, but she just does. She’ll distract Liam with a new game or toy. She will play with him outside or just tickle him. He calms down with her. She’s the messiest girl you’ll ever meet. She is a math whiz and speaks like she’s 20, always has been mature for her age. But being a sibling of a kid with a chronic illness, it’s a different kind of mature. I remember back when we were stuck in a hotel after our house fire. I know right, we’ve dealt with enough trauma already. Samantha was just this skinny little 6-year-old kid who was dressing her tiny little brother on the couch of our hotel. It was just so sweet. And she continues to amaze me with her kindness. I don’t what we did right with her, but we did something right.  

Bright Smile, Dark Eyes

Logan is a kid with a larger than life personality and a loud voice to match it. (so weird that he would have those things haha) He has these deep brown eyes and this hair that would put Edward Cullen to shame. It’s just so shiny and falls perfectly with so little effort. He’s also a vampire, I’m kidding, of course. Logan has this incredibly wide smile and these striking facial features. I tell them all the time he should be an Abercrombie model. He is tall, skinny and has GIANT feet. He has ADHD and faces daily challenges in a school system that is designed for neurotypical learners. He’s the first to crack a pun or tell a joke. He loves to create weird videos and hates sports. He loves video games and most of his friends are gamer girls. Logan is a great kid with a huge heart. He also feels things in the deep way like I feel them. He’s emotional like me.

Misplaced Jealously 

His journey with Liam is much different than Sam’s. He’s incredibly jealous of Liam. He doesn’t understand and he isn’t a forward thinker in the way Sam is – he focuses on what is impacting him in the moment. He just can’t get over how much time Liam spent with me when he was first diagnosed and when we went to Boston. Liam also is fiercely jealous of Logan, and the main thing they fight over is well, me. And while it’s sweet they both love me so much, it’s getting a bit out of control up to physical fighting over who gets to sit by me or hug me first (there’s so much space for them both to do all those things) They even fight over who says I love you more. I know what you are thinking, great problem to have mom. Sure, until you need to shower or brush your teeth and have no space to do that thing. Or maybe hang with Collin. If Liam had his way, he would be with me ALONE every second of the day. Well he lets Samantha around sometimes. He even gets mad when Collin won’t leave for work or if Collin wants to sit with us in his own bedroom. I know some of that is fear. I know some of that is this incredibly sacred bond we created in Boston – we just spent every moment together in this new place so scared, so nervous. We ended up enjoying our time even stuck in the clinic for so long. And I feel it too, that need to spend every second with him, to protect him from everything I can, since I can’t protect him from this bullshit horrible disease.

But all this to Logan = mom loves Liam more.

Oh The Steroids…

And the steroids, the steroids. It just adds fuel to this constant fire between them. Liam gets so much anger in that tiny little body of his. I see it though. He can’t stop it from exploding. We just keep him safe and comfortable. I sometimes just have to walk awaycry in the bathroom, pace the backyard, and come back to him.

The steroids are helping Liam physically in so many ways. And our next trip to Boston is coming up, and I do hope everything else looks good right now for him. I absolutely fear the day my son no longer walks. But what I fear more is when Duchenne ravages his heart, lungs, throat. That’s why we are taking the steroid even though we are dealing with some rage and behavior stuff that would break a parent if they didn’t have to consider the benefit of the meds causing it.

A mom told me it’s going to get better after a few more months and I’m so hopeful for that day.

We’ve got to keep fighting for a cure. We’ve got to keep working toward safer medicines for our sons, alternative treatments to the standard of care. It’s not good enough for them and I’m continually grateful to the hard-fighting parents in this Duchenne community for their efforts to find a cure. I stand with you. I am here to fight with you.

Birthday Blues

Birthdays are a time of joy for kids. They get spoiled rotten by their friends and family. They eat cake and get PRESENTS. And that’s what we are going to do for Liam. Despite the dread in my heart that every minute is stealing something precious from him. Every minute means a new challenge, a new hardship for him and our family.

I know what you’re thinking – celebrate every minute you have with him. And sure, that’s an easy thing to say in hopes of providing some support to a suffering mom. I appreciate that.

But unfortunately, when you learn about DMD, time becomes different. Because every minute of the day we don’t have a cure, is every minute that his muscles deteriorate. Every birthday we celebrate is like a ticking clock without a cure. None of us know how long that clock is going to tick, but we all know that it’s a race against time, against birthdays coming before we can stop this stupid disease.

And, no Liam doesn’t fully get it now. He’s full of spirit. He’s a spitfire to say the least. He still dances to his own music. He asked me today if he was like Eleven from Stranger Things, because she went to the hospital a lot and she’s special. We make every doctor visit and hospital visit special. Every moment hopeful for him.

I think of that precious day he was born – so much hope for the future, so much life to live. I fought to get that boy out too – and almost ended up in C-section. I remember being on oxygen, my epidural fading, my body weak, my will to push gone. But I did it, and the precious sound of his cries were worth every bit of pain. Every person in the room – the nurses, my mom, my sister, Collin, me – were crying exhausted, joyful tears right along with him as he entered this world. Seriously, it was a scene y’all!  

I’ve gotten better at accepting things, creating a new normal, and still encouraging his dreams. We are still planning that family trip to Europe when I turn 40 next year. We are still moving forward with our lives. But, seeing boys losing their lives as young as 12 and 13 to this disease I’m haunted – beyond the physical things, what about Liam’s heart, his throat, and the things that keep him alive? How many birthdays do we get with him? I’d be lying if I said I didn’t think of these things, that I didn’t cry in the middle of the night with these things, even if I shake it off and bring a smile the next day. And it’s not the same as with my other kids, because there is a disease ravaging his perfect little body. I just want as many years as I can get with him.

We are doing what we can with the help of the team a University of Massachusetts. They battled with our insurance company, and after exhausting all our resources, we are getting our medicine for one year. Then, we start the fight again with our insurance company as that resource only lasts for so long.

Liam is adjusting well. The mood swings are fading. But I have been letting the strict diet soften, and we gotta keep an eye on his weight since steroids make you hungry. We started a beta blocker as a preventative measure to keep his heart strong that Hottie Mc Hottie heart doctor prescribed. Liam continues on a cocktail of supplements and vitamins. We saw a lot of progress with the serial casting. We stretch him and use his AFOs at night. He’s stronger and has more stamina right now. He walks flat footed until he gets tired and must resort to toe walking because of the pain. We go back in December and I just hope everything is still okay, at least for now. That’s all I can hope for.

Samantha, who hasn’t fully dealt with her emotions about Liam’s disease, finally broke down about it after I choked on a Ritz cracker. So sitcom absurd when Collin gave me the Heimlich and a chunk of cracker shot out of my mouth on the floor. I was totally fine but everything about life and death came crashing down around her. And, her school has had too many lockouts after several threats of violence, in week three of school. She’s now in therapy once a week to talk through her anxiety. She’s 12 and has to think about school violence on top of everything else. And then, there’s Logan who is still just insanely jealous of Liam and the attention he gets. We will be starting him with a therapist soon as well.  But, both of them still are doing great in school, keeping up with their friendships, juggling hobbies, doing their chores with a gentle nudging and enduring time in the fart box of a van as we wait through house showings.

And Collin and I are just so tense with each other right now. The house hasn’t sold. Liam is still being carried up and down the stairs. And we are still trying not kill each other during showings and open houses and volleyball and school drop offs and injuries and illnesses all the other things we are juggling.

Though we’re an unruly, loud, wild bunch, we are also a strong family.

I’m going to smile tomorrow. I’m going to bring him lunch at school and take selfies, wearing my bright red joyful lipstick. I’m going to laugh at the game truck and his friends running around together on Saturday. I’m going to stress over every party detail like I do too well. My house is going to look like Minecraft threw up inside. I’ll do it for him. I’ll hold my head up for him. I’ll smile for him. I know that friends will fade as things get harder. I know the joy around these days is going to fade. So, this seventh birthday is going to be as joyful as possible for Liam. 

 

Reality Bites: Late 30s Edition

I look around, everyone seems to be living their best life, achieving their dreams, watching their kids grow perfectly. Sure, I only see what people want me to see about their lives. But I find myself a bit like Pig Pen, when everybody else is a bit like Lucy. Yeah, Lucy’s got some problems right, but her life isn’t messy.

Let’s start with our few days in the cabin by the lake. I choked. Collin gave me the Heimlich and a cracker chunk flew across the floor. My horrified daughter spent the night crying thinking I was going to die.

“You were turning blue,” she says, in tears. I wasn’t blue, but like her mother, she is a bit dramatic.

She wouldn’t dare let me sleep without her. She was gonna stick to me like glue. I slept with Sam and Liam, teetering on the delicate edge of a queen bed.

All is good now – we went to Buc e’s on the way home and got her a T-shirt. You Texans know what I’m talking about.

We rented a boat, a boat filled with spiders. So many spiders, hanging from the roof, crawling around the ground, blowing into the lake, climbing on our legs and arms, or not, but it sure felt like it. There was a lot of screaming. But we had fun too.

Hope floats, away from me apparently.

Let’s think of the day I put my house on the market. Morning of we had a showing cancel and another one pop up. Liam, because of decreasing arm strength, drops a cup of chocolate milk all over the floor, a juice last night. Maybe he was tired, maybe he missed the table, but the horror of our reality is his muscles are slowing stopping on him. But it was a huge mess five minutes before that first showing.

The day ended up f-ing great. My house sold at full price in less than 24 hours. I bragged all over social media, like an asshole. We were ready. They did the inspections, we had some stuff, nothing major. Then the appraisal came, no word back. No word back. The weekend went by, no word back. Then, we find out our prequalified buyer didn’t qualify for his loan. We had a hot first day with lots of views and three showings, and we took the offer, didn’t even put a sign in the yard. Now, it’s like only two showings in two days, when houses in my neighborhood usually sell in no more than a week. And if I don’t sell soon, I lose the other house. I just want my kid to have a bedroom downstairs. Too good to be true, yep.

Just like a few months ago, Facebook flew me out to San Francisco. I killed my interviews. We were ready to move. Too good to be true, yep again.

And, then there’s finally getting a good plan for Liam and hitting road block after road block.

The fight for medication continues…

I talked to an insurance case worker yesterday, and she’s doing her best to help us. She is writing a letter to the medical director in hopes of working with our case. She was sympathetic, she was kind. I cried. She told me to make sure to get therapy. I told her my therapist literally fired me – the letter says termination. (They declined my medicine refill and I called. Her: you must come in. Me: Oh but y’all didn’t say, didn’t call, didn’t mention any follow up at my last visit and my medicine it out tomorrow. Her: Well, you should’ve thought of that. And it’s not my problem, it’s yours. Me: ummm thought of what? That I needed to follow a protocol never once explained to me, with no word from y’all at all until you decline my medicine? Her: I think it’s best we discharge you from our practice Me: you’re kind of an asshole Her: Hangs up)

Work is shit, and my coworkers and boss are running out of patience with me. I can’t blame them – I’m distracted, I’m not motivated, I have zero tolerance for people.

I’ve had like two weepy days, and I hate myself for it. My daughter made everyone in the house come to my room to hug me last night and express gratitude for all I do. I love that I raised her to be that person but I hate that she, at 11, feels she has to do that stuff for her mom falling apart. I suppose I’ve been tough lately for Liam and the family, and the blows keep coming. I feel I tightly raveled myself up for everyone and the world just keeps picking on the loose thread, the one you never pull cause you know that whole damn hem is coming out.  I try to keep laughing and smiling, but it’s growing increasingly hard to find humor and joy like I once could.

But you’re not alone, we are all suffering.

Collin also reminded me that I’m not alone. I selfishly spiral thinking of what is happening to me, when this crap is happening to us. The kids were so excited about their new rooms. They’ve told me all how they are going to decorate. And once again I have to share with them how life can just be cruel even if you are a good person.

Maybe this is just me getting old. I try not to compare my messy lives to the apparent clean ones around me. Maybe I’m more Charlie Brown, where there’s good and bad stuff that happens to every person. I’m just tired of the bad. I’m tired of my stupid balloon filling just to be popped again. And trust, I know there’s a national shortage of helium. Let’s hope my hope balloons stop popping, or hell stop filling so full and then popping in my face. Like, just half fill them, so they just have that sad after the birthday party hang in the air. I’ll take some gentle consistency of a next-day after party balloon. 

Schools starts Monday, and there’s now this heaviness that the years are going to pass quick, and that means Liam is going to struggle more and more. Plus, my first-born little baby is starting middle school, so I’m taking it all hard when usually I’m so excited for them.

I read so many uplifting blogs, who go viral with all the right things to say. I don’t have the right words anymore, when my whole life, my career, has revolved around words.  That’s just my reality, and right now Reality Bites.

Just cure this stupid disease please.

Startled by Stairs

I love my home. I just had my kitchen redone right before we found about Liam and it’s beautiful, exactly to my tastes. I love the pool. I love the big master bedroom. Though it’s not perfect, I’ve called it home for 10 years.

But one little slip on stairs from Liam, luckily only one stair before he plopped on his bottom, I knew it was time. 

I could’ve gotten a stair lift. I have this crippling fear of those next phases of DMD. And, the stair lift scared me. So now we open our hearts to the potential of something new that might meet his needs better now and ongoing.

Liam can still walk, he can still climb stairs, but with increasing difficulty. So, I just wanted him to feel the same, for now, and the stair lift to me seemed hard to accept. So maybe I wanted me to feel the same. He’s adapted to everything we’ve asked of him with a smile and this bountiful joy I find hard to describe. And, now, even in times when the steroids lead to fits of rage he sometimes can’t understand or control, he comes to us. He apologizes. He says he loves us. I laid with him on the floor during one of these fits, and I patted his back. I told him I understood it’s hard and it’s okay to let it out. He cried until he didn’t anymore, and he held me. He looks at me with those big trusting brown eyes and I question everything that we are doing. He doesn’t question me, doesn’t resist what I ask of him and that kills me sometimes of the things I must ask of him.

Acceptance with a Slice of Anger

I’ve accepted this diagnosis in what I would describe as a phased approach. I accept what I can take day to day. The too much in the future stuff sends me right back to the couch in old sweat pants when I should be functioning. I see so many other parents handling these different phases with so much grace, and I’m trying to find that inside of me, well grace with my typical brand of sarcasm and occasional snark. Not sure how they don’t just walk around and punch nosey adults in the face. I feel angry sometimes, angry at adults who have those healthy kids who stare at us happy not to have our fate when my son is walking around in casts. I think the anger will fade but at times I don’t want to share my life story with them. I don’t want to educate them. I want to just enjoy my trip to Target to get a Lego set for Liam he’ll give up on once bored and I’ll finish it because I HAVE TO, or I won’t sleep. I read this blog and read some of my Facebook posts, and at times it seethes with anger. And, I’m not an angry person. I’m working on that.

Trolls Gonna Troll

This week was incredibly trying for the DMD community, with an online troll going to multiple parents’ pages telling them they shouldn’t have had kids knowing they could have DMD. That we harmed them by bringing them into this world knowing they would suffer. It absolutely kills me to read that. I didn’t know anything about DMD before my son was diagnosed with it. We weren’t screened for this in our prenatal testing. We didn’t know. And, to be 100 percent honest, I don’t know what I would have done then. I would never shame a parent/s choice when dealing with news from prenatal screening as those aren’t easy conversations, aren’t easy decisions. It isn’t fair to slap a “well I would have” on situations like these – it’s harmful to people already being harmed.

But what I do know now that Liam brought insurmountable joy to our home the moment he was born. He is just radiating joy, humor, love. I will try to keep him dancing as long as I can, and when he can’t dance anymore on his two legs, we’ll find a new way to keep dancing.

Carry On

As kids, there are things we only get to do, like eat Trix cereal. And, for a long time, kids cornered the market on bad behavior in public. But a few viral posts in, you can easily see that adults have started to not only eat Trix cereal, the jerks, but have decided bad behavior isn’t just for kids anymore. Parents fist fighting at kid hockey games, little old ladies being racist in Burger King, leaders of the free world telling American citizens of color to go back where they came from. 

I had finished my blog in its entirety yesterday, but I must mention that we did face, for the first time since our diagnosis, a look at how awful people can be to folks with disabilities, even children. It was jarring, hurtful and shocking to me. And it gave me even more compassion for all those who have suffered at the hands of bullies, racists and bigots that my privilege has mostly protected me from.

I want to rehash it, but also don’t want to give those people any more of my time or energy. They might have ruined my dinner and my fun night duck feeding, but I won’t let it ruin my blog.

But I do want to extend my compassion for all those who have been or continue to be harmed for your differences by bad behaving, entitled adults. And, I ask for those of you reading this to remind yourself, your friends and your family to not stare at, bully, comment on, or otherwise harass people because they are disabled, a different race than your own, a different religion than your own and express that religion differently, who are LGBTQ, who came to this country to escape death, torment, poverty, harassment, who have mental illnesses, who are over or under weight, who speak a different language, etc. Don’t look at someone with a scar or injury or birthmark or any other trauma. I don’t care about your opinions, I don’t care about your politics. Harassing people is wrong and, for religious folks, it’s sinful.

Be better than that. Fight for the rights of all people, not just the ones who you deem are worthy of fighting for.

*Jumps off soap box*

Now, rewind to earlier in the day when I started this blog…

“I want them off, right now,” a frustrated wispy hair Liam says.

“Baby, you have to wear those casts until Sunday, then you get a break,” I respond, my heart secretly breaking.

“BUT I DON’T WANT TO MOMMY!” he demands.

“Sugar, I know it’s no fun to wear casts, but remember when Samantha had a cast for her elbow?”

Liam, sighs, “Yes mommy.”

“Well, it helped her arm so much right?”

Liam, defeated, “Yes, mommy.”

“So, you know this is going to help you too, right?”

“Right, mommy,” he says exasperated.

Why on Earth would you do this to him Crystal?

From my limited experience, not many outside of the DMD community knows a lot about serial casting. And, in some ways posting a picture of my kid in two casts without explaining is my bad. So, here’s what Parent Project Muscular Dystrophy says about it: Serial casting is the process of applying and removing casts (weekly) that gradually stretch muscles, tendons and ligaments into current alignment.

And, it’s what the doctor recommended. Sure, it looks like we are torturing our kid during SUMMER! AHHH but I’d rather him not have to deal with casts at school.

But the trial…

Liam developed full body rashes from the trial drug. Yes, after all of that, we are off. Our results were reported to the drug company and the research coordinators. It’s an uncommon reaction, but they did document it. They were worried reintroducing the drug could lead to a worse reaction, as a group. They cannot unblind the study to find out what was causing the reaction, so that makes things even trickier to continue it, at least for me and Collin to feel confident about it, and it sucks for us to not know specifically what caused the reaction.

We also have changed our doctor, not related at all to the trial (in fact we barely interacted with our doctor during our clinic visits or trial visits other than a few minutes of rushed consultation. The research coordinator at our old hospital was great).

We feel now we are in great hands with Dr. Wong at U Mass who assured me, “I’ll be Liam’s quarterback.” Boston was life changing for me, maybe why Liam and I are attached at the hip. And, we are getting local care at my old stomping grounds Children’s Medical Center! Though we haven’t visited the DMD clinic there yet, we are working with PT at the Plano campus – where I worked for a year.

Remember, this is your kid and your kid’s health. You see them every day. You care for them every day. You are your kid’s number one advocate in this complicated healthcare system. You should be heard.

What Now?

So, our care plan – Liam is taking supplements, lots of them. He’s taking steroids, which helps to maintain muscle strength for as long as possible. He is doing serial casting, as described above, through Children’s Medical Center. When not casted, we stretch him nightly using the stretches recommended by the PT. He is in nightly AFOs (when not casted) to stretch those same muscles. Though the dietitian said we can have occasional cheat nights (why we went for burgers), Liam is following a strict eating regiment that cuts pretty much white flour and white sugar completely from his diet. Lean protein, grains, fruits, veggies, oh my. We’ve also stopped buying snacks that aren’t healthy, which I unexpectedly struggled with the most. I didn’t realize how much I was consuming salty snacks. And, we don’t buy capri suns or mac-n-cheese EVER. It’s become less of a diet and a way of life now. One of Samantha’s friends said, “No offense, Ms. Goss, but your snacks kind of suck now.” And, we are working on getting him to drink more water. Hydration is important for our DMD boys. Catch us back in Boston this December!

I can’t always verbalize things

I’ve always been good with the written word. Spoken word is harder for me. So, I can’t talk on the phone or I will break down. Sometimes I don’t want to talk about it at all. I took Liam’s diagnosis hard, really hard. I was in a dangerous place. And, so for me to be able to not get back into that place, I will continue to enforce my personal boundaries. Don’t hate me for it. I am direct with my needs right now and my boundaries, which is a huge bit of growth for me and necessary for our family. I describe it as walking on a tight rope of mental illness – a simple gust of emotional wind and I’m down in that scary pit again. I’m fighting every day. I’m open and honest on social because it’s therapeutic. All that said to mean, I thank you for hanging in there with me. I thank you for allowing me to be honest. I will never pretend to be a perfect or good person on social media. I am who I am. I make mistakes. I’ve made many mistakes. And, I’m sometimes an asshole. I sometimes use the f-word, but never in front of my parents, because they hate that lol. But, we need your support and are grateful for it.

And, if at any time I offend you or my story gets too much, you don’t owe me an explanation for unfriending me, unfollowing me or just stepping away from our story for a bit. I get it. Take care of you.

I titled this blog post Carry On, because that’s what we do. We carry on, like the song says but modified for us, if we are lost or alone or LIFE hits us like a big stupid stone we carry on. That’s what the Gosses are trying to do the best we can.