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.

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.

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.

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.

“Is that your son ma’am,” a sheepish, young rent-a-cop asked me as Liam joyfully sprinted through the fountains in Sundance Square in Fort Worth, Texas.

“Yes, isn’t he adorable?” I said, grinning.

“I’m so sorry to have to do this but you aren’t allowed to play in the fountain after 6.”

I blushed having assumed he came to gush about my kid and said, “Oh, I’m so sorry we didn’t know.”

The next day, he would start his trial drug, which meant a long day of testing at the hospital. We had the pulmonologist for general DMD assessment (not related to the trial) late in the afternoon at the same place the day before. Liam and I decided to get a beautiful hotel in downtown Fort Worth, right near the fountains.

Dad said Liam would have loved telling his friends he got arrested.

We went country, when we’re typically a bit more rock-n-roll

We decided to head to the Stockyards, an area of Fort Worth straight out of Urban Cowboy. Please tell me you’ve seen this Debra Winger movie?

Old brick buildings with shops that sell over-priced cowboy boots and hats to tourists, country bars advertising LoneStar from women clad in Daisy Dukes and animal stables filled with horses, cows and, of course, longhorns adorn the cobblestone streets. Twice a day they run stock right down the road. Trust me, we live in Texas, but this isn’t at all what we experience in our daily lives.

We picked the oldest steakhouse in the area – Cattleman’s. The decor – wood panel, brick and pictures of cows – I assume hasn’t changed since the 80s. The servers wear wranglers, boots and country shirts. The biscuits are to die for, the steaks are huge, and the potatoes are smothered in delicious things.

I had some wine and a big ole medium-rare steak. Liam had chicken tenders.

We talked about Fortnite. We gossiped about school. He told me about the new house he’s building in Minecraft with lots of windows.

He told me that he wants to be an artist when he grows up. My fears crept in – what happens when he can’t lift his arms someday. But I swallowed it.

We had to go to sleep eventually

I think of life a bit differently now. I’ve always loved moments in time, but I don’t think I was hyper focused on trying to keep those moments from ending. I didn’t want to go to bed, and I was the responsible one. I wanted to talk to my son all night. But, he passed out in my arms and I shed a few tears on his sweet little dirty blonde hair. How can I love someone this much? We slept hard that night, an unexpected peaceful sleep for me.

A harmful thing people say when you find out your kid has a chronic disease is “no one knows when they’re going to die.” Having a DMD diagnosis is like starting a kitchen timer but on a six-year-old to find a cure soon enough before too much damage is done.

We must make life-altering decisions about our young children – like the one Collin and I had to make whether to put our kid on a trial drug that could delay traditional interventions for a year if we get a placebo. What if we’re wrong?

They are getting so close to a cure people tell me, but what if it’s not close enough to help my son. It’s such a hard thing for me personally to bridge between hope and facts, and that is what keeps me up at night. What if my hope, what if my faith in a miracle isn’t strong enough? What if all the doubts, worries and fears in my head stops our miracle? So many stories hit the news about miracles, but what if ours never comes? (oof that sounds like my anxiety spilling out)

Access to care is complicated

The next morning, I went to our typical place to check in – the self-serve kiosk – and it said in big red letters you can’t check in because we’re in a trial. I thought, I’ll just go up to my research coordinator and discuss it with her since she told me to do that with any problems. Last time admissions made us pay $300 or they wouldn’t let us up to the clinic (for something covered by the trial costs) and she said, next time get me with any problems.

The front desk lady at the clinic said, “you didn’t check in downstairs.”

Me: “Well it said I couldn’t check in at the kiosk and we had a lot of trouble last time at the desk since we are in a research trial. I thought it was easier to just pop up here and talk to our research coordinator. She said if we ever have trouble to just get her.”

Her: “Well I don’t know what she told you, but you have to check in downstairs every time. Didn’t the kiosk say to check in with the front desk?”

Me: “Yes but Kayla, our research coordinator, said if we ever have any problems checking in to come get her since we were charged last time at the desk. So, I’m here. Maybe y’all could work with them so they know how to handle people in trials?”

Her: “That’s not my problem. I can get you that manager’s information if you want. They don’t report to us.”

Dad and Collin intervened and gently pulled me away before I exploded right there. It’s not her fault that process is messed up but having worked for a children’s hospital for 10 years, it’s absolutely her problem and she absolutely should note that concern from a parent and send it to the appropriate person. Collin was his charming self and she checked us in there.

And, it was time to do all the things and get our drugs.

Liam ran through the PT tests quicker than expected, and Dr. Marks was able to pop in and do his piece – just checking him over like doctors do – a bit early. The drugs weren’t ready yet – so we adjusted our plans from taking two doses there (three hours apart) to only one dose there. Kayla is awesome about doing her best to be efficient with our time.

I won’t detail it since it was the same issue as above when we went to Radiology. We had to check in to two different desks, and one of the ladies tried to charge us for the damn trial assessment again. I said I’ll call Kayla, my research coordinator, again as I’m instructed to do.

 The woman goes “I don’t need her on anyone’s help.”  

Me, my jaw set tight: “Yes, but you’re trying to charge us for things covered in a trial, paid for by that trial. So, I’m just going to call the person with information about the trial.”

Her: “I don’t need her help”

Collin intervened again, and I walked away.

We had just been to lab – the process is a simple as possible. The staff is super friendly, and they rushed Liam in, so we could make that very radiology appointment. (apparently in radiology, they must book an appointment for a trial like they would a normal appointment so that led to the confusion – the confusion the check in person didn’t care to clear up. And, noting all these different services have different processes and there’s no effort to streamline them. They just expect parents/patients to keep up with them.)

Radiology got a little uncomfortable when the tech taped Liam down with medical tape so he would stay perfectly still for a bone density scan. It’s not like incredibly tight – it’s more so that he can feel any movement and understand when the tape moves he moves. This scan is like three minutes long – and that’s a long time for a 6-year-old to lie perfectly still. But obviously as a mom you want to say hell no, you aren’t taping my kid to anything. And like usual, Liam took it like a champ and thought it was funny, at first at least. The tech was fantastic – and that’s why I take issue with access to care. The complicated processes to access that awesome tech is stupid ridiculous.

A few hours passed, and we got our drug.

And, now Liam takes 10 pills a day with eight grams of fat with each dose to help him absorb it. He takes it no problem at all, like it’s a normal part of his day. We don’t know if we are getting a placebo. Liam said he thinks we got the wrong medicine, but Collin feels he’s seeing some improvement. Liam tells me he just wants to fix his legs and the medicine isn’t fixing his legs. Those chats are heartbreaking, and I try to not show my devastation. I want to say that a wheelchair isn’t the worst thing. People live happy, full lives with disabilities, even though it’s hard, people do it. I want to say keeping you healthy and alive is what matters most to me and a wheelchair will just help you get around. But, he’s six. He wants to run, jump and play like the other kids. He doesn’t want to have his mom’s help to climb the stairs at the zoo. He doesn’t want to be the only kid who isn’t in trouble for climbing on rocks because he can’t. He wants a miracle, and I don’t know if I can give him that, and that sucks in ways I can’t describe.

I don’t know what I feel other than I just want this year to end and roll into open label, so I know for sure what he’s getting. This not knowing is torture. I’m not saying knowing means anything different, but it helps me make decisions about what I’m seeing in him. And maybe, this drug will be the thing that keeps him on his legs for a few extra years.

“Today is my special day, right?” Liam asked with stinky morning breath, as I snuggled next to him.

“Yes, baby, but we gotta brush those teeth first,” I said while waving my hand dramatically pretending to waft the smell away. Liam started to tackle me to share more of his stinky breath until we both broke out in giggles.

I wake up every morning and crawl into his twin bed for cuddles. He plays with my hair like he has since he was a baby. He would grab handfuls of knotty brown locks while feeding and then fall asleep in my arms, his tiny hands still clutching strands of my hair. As he grew, he would twirl my hair around his chubby little fingers while looking up into my eyes like I was the most beautiful thing he’d ever seen.

Now in the mornings, he sleepily asks about the plans for the day with those inquisitive liquid brown eyes that warm my soul. He squeezes my neck for “snugs” and kisses me on both cheeks and my forehead. (he’s done that for years to Collin and me) It’s one of the most important parts of my day, and it’s only like seven minutes.

My older kids aren’t up for much cuddling these days, but I wake them with annoying sing song voice and send the dogs in for morning face licks.  

And, it was a special day.

Today was trial assessment day, and I was feeling sick to my stomach with nerves. What if Liam couldn’t get up off the ground in under 10 seconds? What if he couldn’t swallow a pill after our week of practice? What next if this trial didn’t work for us? What if he got in and ended up on a placebo for a year? Would that harm him to delay treatment? If you’ve done any reading about clinical trials, the criteria is very strict and they are very competitive to get those few available slots. Parents are willing to risk putting their kids through all of the testing, all of the medication required not knowing if they are on a placebo drug. That’s how desperate we are for miracle drug. For me, it’s the hope we will roll over to the medicine after the trial year if all goes as planned. But that’s a risk, a possible year with no intervention.

My brain was firing on all cylinders, but all Liam could think about was getting through the tests so he could go to Five Below to spend money and so he could have lunch with grandpa. I was just talking in circles to my ever-patient parent partner and husband, Collin, and he nodded along saying a repetitive cycle of positive words, as he had for seven straight days. He wasn’t annoyed, though he had every right to be.

Dad and Collin flanked me, providing me the balance I needed if I fell to either side, as we walked in through the doors. And, Liam, of course was as joyful as ever, planning how he’d spend the $100 he would get for trying his very best and being a good listener. I’m sure a few parents just threw their hands in the air thinking I bribed my son. This is new parenting territory for us and things we are asking of him you don’t ask of 6-year-old kids. I’m just throwing all those damn parenting books out the window and doing my best to navigate these new, rough waters.

Registering didn’t help my nerves.

I expected smiles and rainbows from everyone at the children’s hospital, at least when we were greeted. BUT, the self-kiosk wouldn’t work for us because we were there for a trial. So we went to the registration desk. The person at the desk didn’t know anything about our trial after looking up our information. So, let’s follow that – we can’t self-check in at the kiosk because of the trial yet the person at the registration desk mere steps away from that very kiosk doesn’t know anything about our being in a trial. She said we can’t go up until we pay $300 for today’s visit. We reminded her, we are in a clinical trial, that’s why we had to come to the desk, and they pay for everything. Person would not budge and made us pay, even though we knew they would have to reimburse us, she refused to let us go up without paying. And, we paid. Just imagine if we didn’t have good insurance or the ability to pay at that point in time. I get it, they are new to trials here, but that means you take a minute, make a few calls and figure it out with us. Not just shame us for not paying until we do. This person and these processes serve a critical role in access to life-saving healthcare for kids, and I have to say the process is broken.

We finally made it to the neurology clinic.

I thought eventually walking into that colorful, warm, inviting space I might feel better about it. But, to be honest, I hate it there. I hate we must be in this space and sometimes the happy pictures of kids running and playing make me want to break something. I hate that some committee sat and planned this space, thinking of what might soothe me and Liam in this the worst time in our lives. I hate the smell. I hate the sad eyes of people in that space, the air is filled with uncertainty and fear. Those emotions hit me hard, like I’m feeling everyone’s pain. I hate that they know me here, in a place I’d rather not be known. Maybe that doesn’t make sense, but there are days I just want to be normal again, have that old life back. But that’s gone now and we have to move on with our new life and that means in this space, where Rainbow Brite threw up.

But, Liam is barely impacted. He’s ready to show everyone that he can swallow a pill and get off the ground in under 10 seconds. Plus, there are fun games for kids to play on this big electronic monitor. He’s getting pretty good at them too. He reminds me this isn’t about me, but about him, and when he’s joyful I have to try to find it too.

He was ready.

We went through a mountain of paper work, like you would for a home loan, but this was about my baby taking an experimental drug. Our research coordinator is absolutely amazing. She immediately expressed horror about our being charged at the desk and she got us a refund within like 24 hours. The reason we are sticking it out at this hospital is for the study and because of her organization, dedication, kindness and hope for the future.

And, Liam swallowed a pill like a champ. He had to swallow a decently big pill (like a gel-sized Ibuprofen) so he now only will take 10 pills a day. If he couldn’t do the bigger pill, he would take 26 pills throughout the day, roughly the size of a tic tac. Can you imagine being six taking nearly 10 pills three times a day?

I realize this blog is getting long.

But, we are almost there. The PT person who wasn’t my favorite caregiver the last time, seemed to have a bit of bounce in her step and her cold gray eyes were lighter. She had fun blonde curls in her hair and something in me felt like she was going to fight for my baby. But, he didn’t need that fight – he had the fight inside with or without her. I had to sit in the hall with Dad and Collin, but he kicked ass. Forty-five minutes later, he was out of the room, and he succeeded. I cried. I held him.

“Do I get 100 dollars now momma?” he said, his toothless grin melting my heart.

“Baby, you get 100 dollars,” I said, wrapping my arms around him and holding him. I didn’t know what to feel. Happy, sad, encouraged, fearful we were making a mistake. So, I just felt his energy flow into my body, the peace, the love, the joy, the love of life he brings every day just warmed me.

They made him a robot, with those crazy fun EKG stickers, and he gave blood again without shedding a tear. “Why is everyone crying momma?” he asked, holding a sucker and a handful of stickers. He had a brightly colored band aid on his arm where he had given blood. (I’m not great with needles so Dad went back with him since Collin had to get to work)

He went home with a little heart sticker thing that would monitor him for 48 hours. He was Iron Man.

And, a few days later, we got confirmation we were in the trial.

For those of you interested, we are in the Phase III Edasalonexent trial that’s through Catabasis. I won’t go into all the details of the drug. Check here if you want more info https://www.catabasis.com/our-pipeline/our-pipeline.php.

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.”

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.

Waiting. We all hate it. Flipping through that germ-covered People from 2009, when Brad Pitt and Angelina Jolie were still an item. Playing Candy Crush until you run out of lives and have 13 minutes until the next one. Staring at the home menu of a Bambi DVD on the television screen because someone forgot to press play.

But, that’s what we had to do…FOR SIX WEEKS!

We called a few days after our appointment for the results of our CK blood test – it was 12,000. The nurse says, we just don’t know yet so don’t let this ruin your day. We need to wait on genetic tests to come back before we are sure. Are you f***ing kidding me? Let’s just say my day was officially ruined.

It was hard to move on with normal life.

Mom came. I wasn’t in a good space. I wasn’t eating. I sure as hell wasn’t sleeping. I smelled, I’m not going to lie. I said, “I can’t do this. I won’t do this. I want to preserve my family in my memory this way.” I’m not even sure what I meant, but I certainly freaked everyone out with my words and thoughts. Having a severe anxiety disorder that I was trying to manage through exercise and meditation (I know that’s so silly of me), my world spiraled out of control and I slipped into a dark space. I couldn’t even look at Liam without crying. My beautiful boy who just didn’t understand. My other kids having to lean on Collin for support.

Get professional help if you need it.

Everyone tried to help me. Tried to say the right things. But, there are not right words for this. The only true solace I found was in the words of parents who had been here, where I am at right now. My family wanted me to not think the worst, but I knew what our results would be, and I knew what we were facing. They wanted to remind me that this is happening to the whole family, not just me, but I didn’t care. They wanted to find common ground by discussing their own traumas and how they got through it. That just made me angry. They couldn’t begin to understand THIS. I was angry at them, angry at God, angry at all those parents with healthy 6-year-olds. It also made me sad – deeply sad. This was a sad I’d never known in my whole life – a deep, painful sad that you feel to your core, that makes your bones aches. A sad that frightened me.

And, my family pushed me to get help.  I immediately received meds to help me eat and sleep, and once I began to human again, I started to see just a tiny bit of sun through the dark clouds. Sometimes faith and prayer isn’t enough – sometimes you need to consult a doctor. Don’t stop those prayers, but get the advice of a professional, too, if you need it. My family stuck through with me, even when I was horrible to them, even when I pulled them into my darkness. Maybe they can’t say the right thing, but just being there is enough.

It’s okay to break.

Everyone talks about strength. People tell you that you’re strong enough to handle this or it wouldn’t happen to you. They remind you that you have to be strong for your family. But I’m here giving you permission to break no matter what’s going on in your life, just as long as you come back and put the pieces back together. This isn’t a Today Show segment – this is your life. You’re allowed to have real, raw human emotions. You’re allowed to admit when you don’t feel strong. You’re allowed to be mad. You’re allowed to be sad. And you’re allowed not to feel guilty for breaking. Don’t let others make you feel guilty for phasing through your process of grief. Please, just get help if you need it.

Faith and believing in miracles.

My therapist said that there is no reason, no greater plan, that this is just chromosomes that caused this. But, I want to believe there is some higher power who’s overseeing this thing. I want to believe in prayer and faith. I want to still believe in the miracle, in the cure.

The Results

They came six agonizing weeks later, over the phone on our last day of our epic Spring Break family vacation.
Liam has Duchenne Muscular Dystrophy. The nurse gave results over the phone and even said something about starting steroids right away, and I heard she got in trouble for that. This was not a conversation for the phone. But it helped prepare me for diagnosis day and next steps.

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

Liam 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 working 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.