Ok, it's been a really long time since I've posted. In part, because we haven't been doing a lot, and in part because I didn't feel I had anything to add. That said, I really should be better about it.
So, here goes. Haircuts.
Charlotte Rose got her first haircut yesterday. As far as milestones go, this one is kind of minor. Is it really even a milestone? A ton of her peers have had haircuts. Maybe it was a milestone for me.
She has... had... these wispy, light blonde ends which, I thought, were the most darling thing ever. But they were ratty. They were hard to get a comb through. She needed a haircut, I didn't want to do it.
But we sat down with a few towels and some scissors, her hair wet, and I started to cut. I didn't do a great job. Someone with steadier hands and a less squirmy kid would have done a lot better, but it's clean, and shorter, and and without those tiny blonde wisps. You know, exactly how a hair cut is supposed to go.
So why is it so hard for me? I am not sad to watch my baby grow up, though I do miss her being tiny. Maybe it just feels like the last bits of baby are slipping away. The little bits of hair that she's always had; they're like relics.
I kept some, clasped in a barrette, that I will find a safe home for among some of the other artifacts of her infancy. A relic that only belongs alongside tiny hospital hats because it was those tiny hospital hats that covered that hair to keep her little head warm.
It was the last bit of baby that I had any control over losing or keeping. Everything else is up to her.
For what it's worth, her new haircut looks super cute.
Hack your Frosting
I made an assortment of fruity cupcakes for Charlotte Rose's birthday party. As much as I love earl gray with lemon, or coffee infused desserts, I wasn't sure small children would.
They were kind of a hit. Cherry, peach, lemonade, apple, blue raspberry, and grape frosting were definitely kid favorites. I have since been asked a few times for the recipe. At first, I was a touch embarrassed because, guys, it's crazy simple. But hey! Simple is good. Simple is great. So I'm gonna shout that simple secret from the rooftops.
It's Kool-Aid. The .13 cent, teeny tiny packet of Kool-aid. And you don't even need the whole packet. I added a little bit at a time until it tasted right. I also added a bit of additional color to get my rainbow to look how I wanted, but you definitely don't have to.
It makes your frosting so sweet and fruity and tangy and tart.
My personal favorite is the Cherry.
Give this frosting "hack" a try, and let me know what you think!
I Should Find A Healthier Hobby
This weekend, Charlotte Rose and I made 48 mini cupcakes that tasted (yes, past tense, they are gone) like frappuchinos.
They were super duper good.
If you want to make them too, simply follow the original cupcake recipe. Swap out the sparkling water with 4 oz. of "coffee". To "brew", heat up 5 oz. of water and throw in 2 tbs. of coffee grounds and "steep" them for 5 minutes. Let the water cool, and pour the contents over two coffee filters into another cup. Pour 4 oz. of the cool coffee into the batter and bake.
Frosting is the same.
When Things are Certainly Bad and Doing Things Anyway
I get that everyone's lives are uncertain. You just never know if today, or tomorrow, or 90 years from now will be all the life you get. With a diagnosis like Charlotte's there is a lot more certainty that her life will be short, and she will have far fewer abilities and opportunities than her peers. A typical person is advised to live life to the fullest because who knows when life will be taken away. But what do you do when you know? What do you do when you know better than most people when? And you know better than most people how?
This information has, of course, changed our lives. We didn't know anything was wrong. This was a huge surprise. Most parents of children with MD have suspicions that something is wrong. Many children with MD are late walkers, if they learn to walk at all. Charlotte wasn't. Many children with MD are cognitively delayed. Charlotte isn't. Most people are searching for something to explain why their child isn't meeting milestones. We wanted to know why her stomach hurt, immediately, and all of a sudden, and so severely she was shrieking in pain. This didn't, and still doesn't make any sense.We have had to think about her future in ways we didn't plan. Sure, this is something all parents do. They make adjustments; our kids are never exactly who we expect them to be (probably to spite us). This was different. This felt like her whole future, any future, was off limits. Will she ever reach adulthood? Will she be able to go to college? Follow her dreams? Or will her dreams need to be re-evaluated to reflect how little she will be able to do on her own.
Because right now, she is "big". She fills a room. She does for herself. She accomplishes. She is normal. She can do normal things. Until she can't. And then her life will be more "can't" than "can", and loss than gain. And our perspective will have to shift from "can't" to "can still do some things". And I hate that. I hate that to survive this, I will have to celebrate things we haven't lost yet.
So, yesterday. I signed her up for ballet. She is just barely old enough, and I am biting at the bit to get her enrolled because I want her to have as many days of "can" that she can. I want her to experience normal just a little bit. However, I know that soon, too soon, it's going to go away. We aren't living in the moment, trying to pack as much life into each day as we can. We are trying to pack a whole life into a few years, because we don't have uncertainty, we have knowledge.
They say "it's better to have loved and lost, than to never have loved at all". I hope she sees it that way too. I hope that she's happy she got to dance, and knows that I was trying to give her something before she couldn't have it anymore. But I don't know. Is it cruel to dangle normalcy in front of her? To give her something that I know she can't keep?
I don't know. But I guess we have to try. I guess we have to believe that losing something is better than never having it. And that she's so excited about it right now that she refuses to take off those adorable little slippers. I wonder if it's irresponsible to do it. Especially since we know it won't last forever.
Daisylions
Toddler idioms are really freaking cute. While taking family pictures on Saturday, Charlotte ran up to me with a fistful of yellow weeds and told me she "picked flowers for you, they're daisylions!"
Cue melting. She says it with such earnest. She's earnest most of the time, even in excitement. You can tell that whatever she says, she says it so honestly and so organically, that shes convinced of it. And I am too.
The things she names and the things she says are all coming from this place of pure observation and innocent misinterpretation. Why wouldn't the pretty little yellow weeds have a name similar to the pretty white flowers? They are almost the same; they are only not flowers because we call them weeds. Makes sense to me.
Some day, she will see them as everyone else does. Annoying, proliferating, weeds. But not yet. So instead of correcting her, we will just call them daisylions until she grows up and sees them as weeds too.