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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. 

Comfort food

Trigger warning, this is a raw, real share about trauma, depression, chronic illness.

Collin went to Arkansas with Liam and without me. It was my decision. And it’s a decision that can only be made when you have a strong partner on your side.

We’re in a trial right now, and this trial requires only quarterly travel. Believe it or not, Little Rock quickly became a second home to us, traveling every other week for our first trial. The trial was a failure – it’s hard not to reflect on wasted hours – when you feel everything is on a clock. But I think of fun dinners, exploring a new city, making new friends. (I guess not friends – I have very few of them – and making/keeping friends hasn’t been the same since Liam was diagnosed. I just can’t sit there listening to all the things – the sports, the successes of their kids – the things Liam never had a chance at.)

It’s hard to understand how this thing feels.

I had a nightmare the other night – I think it might help you visualize it. There was a weight on top of me, a table, a person, I’m not really sure. I just couldn’t breathe. I couldn’t get up. I fought. I punched and kicked and screamed. No matter how hard I fought, I was stuck…there…suffocating under the weight of it all. It’s in my every thought…it hangs over me like a rain cloud. And I can never escape it, I’m never dry from it.

I won’t discuss what’s going on with my daughter – she’s growing into a young woman and her privacy is paramount, the right of every young woman as they make these transitions. But I will say I am home because I’m leaning in on her care as deeply as I can. I need another me, another four mes.

This vacation hasn’t been a vacation at all. But at least I’m here, feeling my feelings, living through the hurt, through the pain that parenthood can bring, and fighting for my faith in God, maybe, my faith in miracles, maybe, my faith in survival, definitely.

So tonight I ate Dino Nuggets and watched Reality Bites. Because what I crave most is comfort, softness, joy – the things that feel so out of reach, just beyond my fingertips. I don’t update this blog enough because it hurts so fucking much. But writing is something that matters to me so I’m going to keep sharing, even if no one reads, because it’s healthy.

An overdue update

Three years – that’s a long time! I’m a neglectful blogger I admit. I’ve changed over the last five years since Liam was diagnosed. My words don’t come as easily as they once did, and sometimes putting things down on paper (or in this case online) brings a stark reality to what’s going on. I used to be quick with a joke or clever reference. I feel harder now and find myself emotionally isolating from friends and family often.

I’m constantly reminded by my kids and husband – this is happening to all of us, not just me. There’s strength together.

Finding happiness

I’ll start by saying Liam is happy, more or less. He’s still a goofball who loves to dance, even if he can no longer do it on two legs. He plays computer games like Roblox, is really great at impressions (you have to meet frat boy Kyle), and loves to make jokes. He’s still a Lego fanatic and I admit I overbuy that stuff because someday he won’t be able to build anymore. I’ve had to back off because I’m literally putting us in debt trying to give him everything.

“Frat Boy Kyle” on a boat

We are doing more arts and crafts and even playing board games. Battleship is his favorite. Liam and I also sit in bed and share funny cat TikToks. He’s obsessed with cats ever since we adopted Sage.

Sage

He’s really a funny kid – he makes these crazy faces (where’d he get that from) and gets the giggles if anyone farts. Every since he was a baby, we’d talk about how much laughter he brought into our family and he absolutely still does!

He doesn’t have very many friends and spends a lot of time with Collin and me. He deeply dislikes school but the school says he does have a couple of kids he talks to during the day. Liam still calls me from the office every day begging I pick him up.

We don’t really get invited to birthday parties anymore or any other activities with other kids but the kids do show up to his birthday. For that I’m grateful. Shoutout to one mom (won’t call her out here) who always invites Liam and reaches out to me to ask how he can be included and supported. It’s a big deal to us.

Liam turned 11 in September.

Rolling with the punches

Everyone prepares you for your kids first step, no one prepares you for the last.

Liam lost his ability to walk this year. He can stand for a few seconds to use the restroom but not without support. He has a very nice electric wheelchair thanks to the folks at UMass and Children’s Legacy who for months worked on our insurance to make it happen. (His first chair was generously funded by some amazing people.)

With that, we’re seen a drastic increase in OCD – as they lose control of their body, they want to control other things, a very dumbed down way to describe what’s happening. He asks lots of questions and is becoming keenly aware of what’s happening to him. (We are chatting with his doctors about therapy). I can’t imagine having all that boy energy without being able to exert it. Unfair, that’s the word for it.

We redid the bathroom so he has an accessible shower and he can actually fit his chair through the door. We are in the process of getting a lift and a stander. (Insurance denied the standing function for his chair of course).

Trials and tribulations

After nearly a year and a half going back in forth to Arkansas we dropped out of the trial. To once again over simplify something medical, it just didn’t work. Plain and simple. My Dad was a godsend during this time, staying with the older kids so we could go together. We did live it up in Arkansas- staying at beautiful hotels and enjoying amazing dinners – thanks to the trial. We were actually regulars at some spots in a town we didn’t live in!

We also had an incredible care team in Little Rock who adored Liam. I feel lucky Houston didn’t have a spot for us. Arkansas Children’s was doing the same treatment but it’s was definitely less trafficked there and easy to access the hospital. We also switched to home care towards the end, and the nurse was lovely.

We always keep our sights open to trials. I’m more wary now though because Liam’s quality of life matters. Years of being devoted to a trial can be incredibly taxing. We’ll continue to look to our medical team for the right course of treatment and possible trials. We continue to go to Dr Wongs every six months and will continue as long it’s feasible for us.

Ohhh and we did get to Disney with Make a Wish this summer! I’m going to do an entire post on that!

Life isn’t always easy

I won’t divulge my older kids business too much, but Sam definitely struggles with what’s going on and we’re doing our best to support her. She’s a fiercely strong, loving sister who’s always taken care of Liam. You can only imagine what she’s going through. Logan treats Liam like any other little brother and doesn’t get too caught up in the future. He’s very present minded, a gift I wish I had.

Collin and I are surviving, going through the motions. Sometimes it feels so disconnecting moving on with this dark cloud constantly hovering. It will catch me off guard during the day or in the middle of the night and it’s like the wind is knocked out of me. But I gotta swallow it down and be tough for my family. I do break sometimes but try to stay busy doing stuff for them and with them.

Wrapping up

I feel I’m not as active as other parents with fundraising, setting up a foundation, updating this blog. Work is very busy but our needs are growing beyond our finances. I’m thankful every day we both have good jobs as I know other families only have one working parent or are single parents juggling all of this alone. But I plan to carve out more time for this stuff to support Liam and all DMD boys.

Actually wrapping up this time. We pray for a cure every day. We pray for our miracle. We pray for guidance to the science and medical professionals searching for a cure. We accept all prayers, good thoughts, warm energy for our son. I’m a Christian and trying to understand that part of me again but my faith definitely falters with the unfairness of this disease. My faith is mine and mine alone and not up for anyone’s judgment and that’s the same respect I give everyone in my life. We don’t discriminate and hope the united power of all voices will support our son and all boys suffering from DMD.

Woah that’s a lot of words. I need a nap. Bye for now but not three years.

Birthdays

Birthdays. They are a celebration of life. But for a DMD mom, every birthday hits a little different. Every year that ticks by means one year of muscle waste and one more year away from a cure. Liam is 8 tomorrow. And, 8, as many of us know in the community, is particularly hard because it ages us out of lots of trials.

Though, I hear there’s one for older boys coming our way, just hope we stay ambulatory long enough to get there.

I haven’t written a lot lately because honestly, I’m struggling. Thanks to COVID-19, the trial we are lined up for was delayed so we had to unpack those suitcases filled with our clothes for the months we would be in Boston, filled with that tiny spark of hope. 

Then, my Grandma LaFlash passed away, which was a hard thing on my entire family.

And, then I lose my job.

So, it just feels like I’m a carton character with a storm cloud directly over my head.

I’m turning 40 next month and I feel like a failure. I’ve gained 35 pounds since Liam’s diagnosis. I will officially not have a job a week before my 40th. And, all this fighting for Liam and I feel like it’s getting us nowhere.

I know that’s not true. We have a great doctor. The steroids are helping him a lot. The stretches are helping a lot. The night splints are helping a lot. His diet looks good, so we’ve curbed the weight gain. We moved and he’s gained so much independence with the bedroom and bathroom downstairs. 

We added our first support bar in the bathroom. It felt hard, but it’s helping him.

The crushing guilt of feeling sad on his birthday sucks. He’s so excited and I want to be excited too. He can’t have a party, another COVID-19 thing because selfish people can’t put on a damn mask to stop this thing. But we are going to make it special.

We are going to reflect on him – he is more than this disease. Liam giggles so hard and loves even harder. He loves bacon and eggs and mashed potatoes and McDonald’s (even though we can’t go that often). Liam hums, sings and dances to the music in his head. He builds Legos and loves to watch Roblox videos on YouTube. He would go anywhere with me, do anything with me. He is a momma’s boy. He loves to chat– Collin and I call him chatter box. He loves his brother, adores his brother, even if Logan often doesn’t feel the same way. He loves his sister even more. She calls him “Bubby” and has since he was so little. He enjoys swimming and riding on his hovercraft go-kart thingy.

I hate that he’s going to be cheated on life. I hate it so much. But we are going to keep fighting. We aren’t going to give up on him or on all the boys who are fighting this disease.

Happy birthday Liam. Just know mom loves you so much it hurts. I’m here with you. I’ll stand beside you. I’ll lift you up. I’ll support you. We will fight for your life together.

One Year

I remember the moment. The doctor said, “that’s not muscle” as he was feeling Liam’s calves. I think of when Liam was handed that purple box to go down to get his DNA test. He was excited, thought it was a present from the doctor. He excitedly pressed the elevator button, his big brown eyes filled with joy. 

I sat in the lobby while he went back with Collin and cried in my Dad’s arms. I’ll never forget it.

I lost it that next few weeks. I was devastated, heartbroken and managing through some dark suicidal thoughts.

(Note, with DMD boys muscle tissue is replaced with fat causing the enlarged calves)

A lot has happened

It’s hard to put into words all that has happened in the last year. We made decisions, we continue to make decisions every day, not knowing always if they are right.

We decided to leave Cook Children’s because the doctor refused to acknowledge me or my questions. His nurses spent more time with Liam than he ever did. We also had huge issues with admissions and billing, as they are incredibly disjointed but seem to blame the patients versus reevaluating poor processes. We had an allergic reaction to trial meds after working hard to get in that trial, so that was rough. 

I researched the best Duchenne doctors in the world, and immediately got on Dr. Wong’s schedule. But we considering cancelling. I remember Dr. Wong calling me directly – she told me she will be Liam’s quarterback, and she absolutely has been true to her word.

We are on a treatment plan she put together for us, based on standard of care for Duchenne. That plan has brought Liam to stable, after experiencing rapid decline. Good news? Sure, but at what cost. Steroids impact his bone density, alter his mood, make him gain weight and could impact his vision. 

And, we fought hard to get Emflaza with our insurance who insisted we start predisone first. But we were able to show how predisone could harm Liam since he was already above weight.  It was fight, and one we only won for one year. So, back at it next year. 

See, Duchenne parents are asked to make life-altering decisions about their kids almost daily, hoping that one day they might cure this disease before it continues to advance. Every day without a cure, every single moment, is watching our kids get weaker. So yeah, stable sounds good right now. 

We moved

We bought a new house. The process is typically incredibly stressful but our realtor – my stepmom Onease – helped us through to make it as easy as possible. We are so grateful to have family help us with this huge life change. But all those showings were taxing on the five us stuffed up in the van.

Liam is off steps and we can tell how much more independent he is since he’s not relying on us to carry him up for his basic functions – sleeping, bathing, brushing his teeth, hanging out in his own space. The house is stunning too, the nicest home we’ve ever owned. But that too comes with sacrifice, so I’ll drive my old van until the wheels fall off so we can live here. We must cut way back on our expenses, and luckily Samantha is helping more with babysitting duties.

The family met Dr. Wong

Right after the big move, we took a long holiday. The kids headed out to Boston with us to meet Liam’s care team and tour the hospital. We think it’s important that the entire family is involved in his ongoing care. It also helped give Logan some perspective since he’s struggled with some jealousy that I’m with Liam a lot. Plus, my kids were able to play in the snow for the first time in like six years. We also hit New York, and that was an absolute highlight. We went to the MET, walked through Central Park, visited Time Square. A good friend of mine was able to meet my family. Sam and I saw a show on Broadway. We loved it.

Where are we now?

I don’t know honestly. I know that, as a family, we are doing our best to find normal, to move on, to work, to go to school, to enjoy the moments we have together. There are moments of absolute insanity for all of us, but I just feel that abundance of love within these walls. I’m just one that looks ahead, thinks ahead. But I’m retraining my brain to stop planning what’s to come, and just living with what’s here and now. Letting go of those dreams for your kids’ perfect lives is tough.

And, as for me, I’m working on my mental health. It’s a daily struggle, but I feel like I’m trying, and sometimes that’s enough. Today though, I’m going to just let myself have a moment in my grief. But, then tomorrow I’ve gotta pick back up, smile, love and be the strong mom that I know I am. 

 

Dreams

“Mommy, I’m going to play baseball when I grow up,” Liam says with a big smile. He lost one of his teeth in a cart incident at Lowe’s. They had to remove it while he was under laughing gas. Luckily it was a baby tooth, but it caused one of his teeth to be much longer in the front. YES, it’s freaking adorable.

I’m usually pretty good in front of him in these situations. I’m not going to say, you’ll never play baseball baby. I say, let’s sign up for spring. He’s walking now. He’s running still. The doctor said he can play baseball. I don’t discourage what we can do, now.

But “grow up” got into my brain like a worm wiggling deep into the thick soil of my emotions. It’s comfortable there, eating away at the small pockets of joy I’ve finally found despite this horrible thing. I try to think of these things in context. Most boys aren’t going to grow up and play baseball beyond their school years. Maybe they will for a stint, but the likelihood of such things turning into a lifelong career fame is rare. I wanted to be a New York Times best-selling author or a Pulitzer Prize winning journalist but have greater odds of being struck by lightning. So, in a context that works for me, childhood dreams aren’t always going to become reality.

But then it hits like a punch in the face, all I want for Liam is for him to be able to grow up. I don’t give a shit about baseball, I just want him to be with me.

See, Duchenne is a ticking clock. And we just want to do everything in our power to slow that clock down. That might look like seven pills in a morning for a 7-year-old but damn I’m going to do everything in my power to slow that clock. It’s so incredibly hard to juggle that “live in the now” when it comes to stuff like baseball, but then in the next breath you’re in a doctor’s office living in his future.

So, we must live in the now, while making major life decisions that impact his entire life. Live in the now but apply for social security for his future medical needs since the wait is like 10 years. Live in the now but give him medicine that long term make his bones brittle. Live in the now and give him 10 minutes in the bounce house when you know that could break his leg and he might never recover and walk again. Live in the now knowing you can never make his dreams come true.

I’m haunted by the strangest things at the strangest times – while watching a TV show, or sitting in the dentist chair, or sweeping the floor. Will he know love? Will he ever even get to have sex? Will he know what it’s like to have children? Will he be able to ever live alone? That’s the worm finding its way into every thought.

I shared some space with some important people in my life this weekend, and I was able to find some peace knowing they are by my side in this, helping me find light and joy in this new and hard life.

That’s what I ask of you, even if you don’t know us.

Think of us next week when we are at our clinic visit in Boston. If you pray, pray. If you send healing vibes into the universe, do that. Meditate about it. Do anything and everything to lift my baby up next week. This is going to be a long journey and we need all the light you have the energy to give.

Distractions

The one thing that keeps me going lately is my busy life. We’re moving. I work full time. My daughter is an athlete and has a social calendar that moves like a train. My older son is filled with gaming and friends. I have friends to connect with and try to have active date nights with my husband. I traveled and had a great relaxing weekend with one of my greatest friends recently. It was a time to reconnect with her, with some other friends, with myself and even connect with new friends. I laughed until it hurt. I cried in my friend’s arms. It was what I needed. I had guilt issues leaving, but so grateful I took the time.

All of these things make it hard to find time to sit with my grief. My medicine takes that edge off so I don’t feel like crying all day.

But then it hits, like clockwork, 2 a.m. I wake up in a sweat. I feel like someone sucked the air out of my lungs. This is when I think about feeding tubes and breathing machines. This is when I consider all the things that will be stolen from Liam as he grows older. You want your kids to grow up, but then with Duchenne, you want to keep them just as they are. Growing up means suffering.

I’ve been doing better with these middle of the night panic attacks. But we head to Boston next month, and every Duchenne parent knows with each clinic visit we’re on edge. We see the things happening, but we don’t want to hear that things are going too quickly for our boys. We want their heart to be strong. We want their lungs to be strong. We want all those things that keep them alive strong. We do our best to make it a adventure, to make our boys feel special. But deep down it’s terrifying. We’re even taking a few days in NYC after to enjoy our Christmas vacation as a family.

We’re going in for our six-months post starting steroids check in. I know we have seen him get stronger, have more stamina. We’ve also seen Liam fight through mood swings. Really bad mood swings. We’ve had good days, and really bad days where I just hide in the bathroom from him to cry for a minute while he screams my name. I hate myself for that because I love him dearly. But sometimes it’s too much. Other times, I just lay with him and just let him fight it out in my arms. I fought so hard for this medicine and don’t want to resent it since it’s helping in other ways, at least I hope it is.

I hid my tears at school when I saw one of his posters that asked what he wants to be – and he wrote tall. He’ll never be tall. In fact, we don’t want him to be tall. That small little wish, something that a lot of boys won’t be regardless of this disease, almost knocked me off. It’s like I’m riding one of those clown bikes on a tight rope while juggling. I do it, it almost looks effortless at times, but one gust of wind and it all falls.

Yesterday, distractions were overwhelming me, while moving at anxiety speed to get my house ready, Liam had set up a dance party in his room for me. I stopped everything I was doing, and we danced to Thunder. Collin walked in to see what was the fuss, and just smiled and left us. We dance all the time, Liam and me. Remembering to stop and just have a little fun is a must. Not to derail, but I get a little upset when people put all this emotional pressure on cherishing every moment and making every moment perfect. I am just doing my best to find some pockets of joy, where I can, without all the pressure of finding joy in things other parents are allowed to not enjoy. I just want to find a normal place with this, if that’s even possible. So I’ve learned more to stop, listen, be present for him and all my kids. Not because I need to make every moment memorable or perfect, but because I enjoy them, frankly. They are funny and kind and silly and smart. I don’t want to miss out on that. A friend shared…

Every morning, I crawl into his bed. He has this stinky breath and crazy tussled dirty blonde hair. He’s usually in his adorable little boxer briefs. His eyes are deep liquid brown and filled with such love for me. I just cuddle up next to his warmth, sing silly little songs to him as he lets out this sleepy little giggle. That’s the reason I get up, put on my makeup and let the busy take over, because he deserves a normal life. He deserves a mom who fights for him, who stands with and for him when he can’t someday. I can’t live in grief every day any more, because that’s no life for him or me or our family. But damn, 2 a.m. is rough.

 

 

 

Distractions

The one thing that keeps me going lately is my busy life. We’re moving. I work full time. My daughter is an athlete and has a social calendar that moves like a train. My older son is filled with gaming and friends. I have friends to connect with and try to have active date nights with my husband. I traveled and had a great relaxing weekend with one of my greatest friends recently. It was a time to reconnect with her, with some other friends, with myself and even connect with new friends. I laughed until it hurt. I cried in my friend’s arms. It was what I needed. I had guilt issues leaving, but so grateful I took the time.

All of these things makes it hard to find time to sit with my grief. My medicine takes that edge off so I don’t feel like crying all day.

But then it hits, like clockwork, 2 a.m. I wake up in a sweat. I feel like someone sucked the air out of my lungs. This is when I think about feeding tubes and breathing machines. This is when I consider all the things that will be stolen from Liam as he grows older. You want your kids to grow up, but then with Duchenne, you want to keep them just as they are. Growing up means suffering.

I’ve been doing better with these middle of the night panic attacks. But we head to Boston next month, and every Duchenne parent knows with each clinic visit we’re on edge. We see the things happening, but we don’t want to hear that things are going too quickly for our boys. We want their heart to be strong. We want their lungs to be strong. We want all those things that keep them alive strong. We do our best to make it a adventure, to make our boys feel special. But deep down it’s terrifying. We’re even taking a few days in NYC after to enjoy our Christmas vacation as a family.

We’re going in for our six-months post starting steroids check in. I know we have seen him get stronger, have more stamina. We’ve also seen Liam fight through mood swings. Really bad mood swings. We’ve had good days, and really bad days where I just hide in the bathroom from him to cry for a minute while he screams my name. I hate myself for that because I love him dearly. But sometimes it’s too much. Other times, I just lay with him and just let him fight it out in my arms. I fought so hard for this medicine and don’t want to resent it since it’s helping in other ways, at least I hope it is.

I hid my tears at school when I saw one of his posters that asked what he wants to be – and he wrote tall. He’ll never be tall. In fact, we don’t want him to be tall. That small little wish, something that a lot of boys won’t be regardless of this disease, almost knocked me off. It’s like I’m riding one of those clown bikes on a tight rope while juggling. I do it, it almost looks effortless at times, but one gust of wind and it all falls.

Yesterday, distractions were overwhelming me, while moving at anxiety speed to get my house ready, Liam had set up a dance party in his room for me. I stopped everything I was doing, and we danced to Thunder. Collin walked in to see what was the fuss, and just smiled and left us. We dance all the time, Liam and me. Remembering to stop and just have a little fun is a must. Not to derail, but I get a little upset when people put all this emotional pressure on cherishing every moment and making every moment perfect. I am just doing my best to find some pockets of joy, where I can, without all the pressure of finding joy in things other parents are allowed to not enjoy. I just want to find a normal place with this, if that’s even possible. So I’ve learned more to stop, listen, be present for him and all my kids. Not because I need to make every moment memorable or perfect, but because I enjoy them, frankly. They are funny and kind and silly and smart. I don’t want to miss out on that. A friend shared…

Every morning, I crawl into his bed. He has this stinky breath and crazy tussled dirty blonde hair. He’s usually in his adorable little boxer briefs. His eyes are deep liquid brown and filled with such love for me. I just cuddle up next to his warmth, sing silly little songs to him as he lets out this sleepy little giggle. That’s the reason I get up, put on my makeup and let the busy take over, because he deserves a normal life. He deserves a mom who fights for him, who stands with and for him when he can’t someday. I can’t live in grief every day any more, because that’s no life for him or me or our family. But damn, 2 a.m. is rough.

 

 

 

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 away – cry 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 away – cry 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.