Carry On

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

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

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

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

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

*Jumps off soap box*

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

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

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

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

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

Liam, sighs, “Yes mommy.”

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

Liam, defeated, “Yes, mommy.”

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

“Right, mommy,” he says exasperated.

Why on Earth would you do this to him Crystal?

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

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

But the trial…

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

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

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

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

What Now?

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

I can’t always verbalize things

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

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

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