It's Rare Disease Day. I know it isn't a "real" holiday, but acknowledgement for people that have, know, and love people with uncommon conditions is alright with me. Rare, in this case, means diseases with an incidence rare of fewer than 200,000 cases. We don't actually know how many people have LGMD2C. Our best guess is that there are a couple hundred.
It's pretty rare. And uncommon things lead to understandable confusion. Most people think that because she can walk now, that she is different than other people with the disease. Or that they know someone with Limb Girdle, and they are still walking at 30, so maybe she will too. While these reassurances are obviously well intended, I struggle to articulate why we have to acknowledge the possibility, the certainty, even, that the doctors are right.
Awareness is powerful, here, because awareness would help people understand that those who typically know the most about the rare diseases they, or their children, have are the people that have them. One of the first things her specialist told us when we met him for the first time was "you will, very soon, know more about all this than almost anyone else."
With a disease as rare as Charlotte's, there is only what they have observed from the very small sample of previous patients. LGMD2C is part of a class of Limb Girdles called the Sarcoglycanopathies. There are three other types in this class of LGMD, all with similar severity and incidence rate. Just 20 years ago, doctors weren't even sure WHAT was missing in these kids to cause their disease progression; the disease was called SCARMD (Severe Childhood Autosomal Recessive Muscular Dystrophy). Now, at least they know what piece is missing.
It is true that doctors don't know everything, but we are working with the absolute best information that exists. It is true, even, that medicine will come a long way in a short time, and that is our hope. If you feel super inclined to help speed that process along, *wink, wink* you can donate to the Kurt and Peter Foundation, they really are the best hope of a cure in Charlotte's lifetime.
All diseases are hard. Rare diseases are hard and are also incredibly isolating, especially when they are terminal. Very few people know anything about them, much less about the limitations of science and medicine concerning them. No one copes well with hearing that something is horribly wrong with their loved one, let alone that there is so little that there can be done to help. No one knows what to say. What can you say? It's a good question, I don't know either. Most days, I am as lost for words as everyone else.
Gee Whizz, Fizz
I am kind of compulsive about making stuff. I can't be sure if it's how I relax or if I don't know how to relax at all, so I create. I am running out of wall space, and I can only eat so many cupcakes (a lot). So, I turned my focus to bath bombs.
Well. These are just ridiculously fun to make, but a little tricky to get right. They are a blast to make with Charlotte Rose; I let her grab small toys to put inside and re-discover later, pick out the scents and colors, and "mix-a-mix-a" it up.
It took me a while to pin down a recipe. None of the ones I found worked quite right. They didn't stick together or fizz as aggressively as I wanted them to. After about ten batches and 87 sad looking bath bombs that are currently awaiting relaxing baths that I probably wont take, I am really happy with the recipe. Check it out, below.
How to Make Bath Bombs
Major Ingredients
2 parts Baking Soda (I use 4 cups for about 12 2.5 inch bath bombs)
1 part Citric Acid (I use 2 cups for about 12 bath bombs)
Corn Starch (I use about 1/4 - 1/2 cup for 12 bath bombs)
Minor (flexible) Ingredients
1 tsp Isoprophyl Alcohol, Water, or Witch Hazel (If using the above amounts)
Essential Oil or Fragrance Oil (Essential oils will require fewer drops than fragrance oil)
Food Coloring or Mica Powder, if desired.
Small Amount of Coconut Oil (liquid)
Equipment
Large Bowl
Small Bottle (I use an empty Essential Oils one)
Whisk
Sifter or Wire Colander
Measuring Cups/Spoons
Molds (You don't have to get the super fancy bath bomb molds. Before I had those, I used a cupcake pan and cupcake liners) Silicone molds also work well. And I have been known to use a metal shot glass (don't use glass, please) if I had mix left over and had already exhausted all other places to put it.
Process
I begin by measuring out the baking soda into the bowl. Next, I mix the alcohol and food coloring together in the small bottle. Shake it really hard, you want to dilute the color to avoid clumps. Once it is mixed together, pour it into the baking soda and whisk until combined.
Add desired amount of fragrance. Mix. I continue to gently whisk to evaporate some of the alcohol; too much moisture will ruin your bath bombs (about 2-3 minutes). Add corn starch.
Next, measure the citric acid into the sifter/colander above the baking soda. You don't want clumpy citric acid. Whisk to combine.
The next bit is the trickiest. The texture of this mixture is really important. You want the mixture to pack together, but easily crumble if you poke it. If it's too dry, I add coconut oil to add moisture. If it's too wet, I add more baking soda and citric acid. Here is a great FAQ from Soap Queen about troubleshooting, it also addresses how to correct some for some things that might happen during curing.
Pack your molds. I try to keep the pressure somewhere in the middle. I like it when my bath bombs float, so I don't want them too dense. But if you don't pack them enough, they will crumble really easily. I aim for the pressure of an awkward hug.
Let sit in the mold overnight, but I usually leave them for 24 hours. After 48 hours, you should be able to package your bath bombs using whatever storage method you'd like. They should be kept in a relatively airtight container or bag as humidity can mess them up a bit.
That's it! not too bad eh? If you have any questions, leave them in the comments!
Something Happened When We Lived Out of a Suitcase
A few days before Charlotte's second birthday, we moved into our current house. For the 18 months prior, we had been living in a small condo during the week and commuting 90 miles on the weekends to get our house market ready. Half our possessions were there, half were in the condo, and I possessed roughly zero sanity.
Stuff, as it turns out, was a large driver of anxiety. Never having the right stuff and never having it in the right place stressed me out. However, I went so long without seeing so many of the things that I thought were important, I realized that they weren't as important as I thought.
I had been intrigued by the idea of a capsule wardrobe; the blog, un-fancy, is my favorite. I was only loosely implementing the concepts at the time, mostly because I was already flying by the seat of my too many pairs of pants. The commitment felt like a lot.
When we finally moved, it felt like a blank slate. We could live somewhere. I thought "why not apply the concepts of a capsule wardrobe, to as many aspects of my life as possible?" One of the great things about a blank slate, is that there is almost infinite potential.
I just had to ask myself, "what do you want?"
I wanted light. A lot of it. I wanted space to dance with Charlotte. I wanted our books and art to be a central focus; we love to read and we love to create. I wanted to clean less and play more.
- We focused on simple, clean pieces that generally lacked pattern or complex silhouettes.
- We opted for lighter slipcovers for the couches and curtains with a similar hue.
- We chose to retain as much perceived space as we could by hanging wall bookshelves.
- We picked a limited, but classic color palette.
- We prioritized space for the art we love and made it central to each room.
and
- Most importantly, we let go of the things that didn't have a purpose and didn't bring us joy.
Spontaneity and a Cat Named Nimbus
This cat. Do you ever feel like a series of events just led you to something that you needed so badly? We did not think we needed this cat. At the time, we had two kids, a geriatric border collie, and another cat that is so scared of her own shadow that we rarely see her.
A coworker sent around an email about foster kittens someone had found in the woods in Tennessee. We did not need a kitten. But this cat. The pull was strong. I don't know how I managed to convince my husband, but I did.
So, we got this cat. This teeny, tiny, five week old critter. This size-of-a-beanie-baby cat.
We named her Nimbus. I didn't realize how much our family needed her until I watched her bond with every one of us, though, especially Charlotte. They're like siblings. Nimbus nips and Charlotte doesn't like to share her toys. At the end of the day, however, Nimbus is a bath time companion and Charlotte is the perfect size for a snuggle. It's hard to find one without the other. Where Charlotte goes, nimbus goes also. Their bond reminds me of the oft envied pair of my childhood, Calvin and Hobbes. They seem to have a secret world, which only they are inhabitants.
Only eight days after we brought Nimbus home, we learned that something was wrong with Charlotte. Nimbus came to us at exactly the right time; she has been an infinite source of laughter and comfort to us.