Time to Talk?

From the moment Penelope was born, Charlotte has been a fantastic big sister. She is patient, gentle, and loving with her little sister. She is never jealous or resentful of all the extra attention Penelope has needed. To be honest, I don’t think Charlotte even realizes that there is something different about Penelope. And don’t get me wrong, I think that is wonderful and amazing and a perfect example of how kids are naturally accepting, but I’m starting to wonder if at some point, I should sit down and talk to Charlotte about how Penelope has some special needs.

A happy big sister, right from the beginning

A happy big sister, right from the beginning

This is not something I ever planned on doing- my initial idea on how to address it with Charlotte was just to answer her questions honestly as they came up, but she doesn’t really ask many questions about Penelope. I think Charlotte just thinks that all little sisters have to go to the doctor a lot and have therapy visits and special standers and feeding tubes. And I’m happy that none of that bothers her, but I’m worried that one day, when she realizes that this isn’t the norm, it will come as a big shock to her, and she might be really upset.

I guess I just want to ease her into the knowledge that Penelope is likely going to have a very different path in life compared to her. About a week ago, Charlotte made a comment about how when Penelope is in kindergarten they will be able to play together at school. I probably should have said something then, because Penelope is most likely going to need to attend a different school that will best meet her needs, but I was caught off-guard and I knew I would start to cry if I pursued the subject at that moment. Plus, Penelope is still two years away from going to school. And yet, I don’t know if I should wait two years to talk to Charlotte about it. She seems to have a vision of her and Penelope’s future together- running around at school, playing together. This is not unlike the vision I had of the two of them before Penelope’s diagnosis, and I know how much it hurt when I realized my vision would have to change. I want to spare Charlotte that pain.

This is totally uncharted territory for me. When I became a parent, I knew that there would be uncomfortable conversations with my kids one day, but there are tons of resources to help you talk to your kids about stuff like sex. Talking to your child about her sister’s special needs? Not so much.

What would you do? I know this isn’t something that needs to be dealt with urgently, but it has been rattling around in my head lately, and it would be nice to come up with some sort of plan on how to address this. For now, I think I will continue to take my cues from Charlotte, and answer any questions she may ask.  I just hope I am taking the right approach.

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Summer Break

It is officially summer, and with it comes a few changes in our daily routine. Charlotte will be finished with junior kindergarten as of Thursday (sob) and I will be tasked with filling her days for two long months. She is really going to miss school (and so will I). I love the structure that school gives to our days. Charlotte loves just about everything to do with school- seeing her friends, learning new words and concepts, eating her lunchtime bagel in her classroom with Miss Lisa, pizza days, assemblies, singing songs, and playing. Somehow I will have to find a substitute for school to keep her occupied. This is a daunting prospect to say the least.

Almost done with JK

Almost done with JK

Charlotte is not the only one whose daily routine is changing- Mark will be working from home all summer, teaching summer school online. So basically, the peaceful and relaxing days that Penelope and I spend together are on hiatus until September. I know I will have to endure a lot of the following: “What are we going to do today?” (Mark). “How many bedtimes until senior kindergarten?” (Charlotte. And me.) I think my best bet to survive the summer with my sanity intact is planning- days at the zoo, beach, visiting family, playdates, etc. Both the girls and I need structure to our days, and I want to enjoy the summer instead of just counting down the days until September.

Oh god, how am I going to keep these two entertained all summer long?!

Oh god, how am I going to keep these two entertained all summer long?!

How do you keep your kids occupied and happy during summer break? Please give me all your tips and tricks!

Cakes

We are currently in the midst of what we call the birthday season in our house. The birthday season starts in May with Mark’s birthday and ends in July with Penelope’s birthday. As a (delicious) result of the birthday season, I have been making cakes to celebrate.

For Mark’s birthday, I wanted to try something a bit different. Mark isn’t a big fan of cake and has always had a lukewarm (at best) reaction to being presented with a birthday cake. He always wants something “lighter” and “healthier” than cake (I know. He’s nuts. Who doesn’t want cake on their birthday? And the richer and more sinful, the better, right?). So this year, I did my best to honour his wishes while still keeping the birthday cake tradition alive. Here is what I did:

First, I baked an angel food cake. Angel food cake is basically the lightest cake in existence. I used a bundt pan and when it was baked and cooled, I then hollowed it out further and filled it with berries. Finally, I frosted it with a super light and fluffy frosting, so it looked just like a normal cake. Mark was surprised and pleased when he cut into the cake and discovered fruit instead. So if you are looking for a healthier and lighter alternative to traditional birthday cake, this is a great solution.

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The next cake I made was for Charlotte’s birthday. As I mentioned awhile ago, Charlotte was extremely excited about her birthday and had been thinking about what kind of cake she wanted for months. Given her love for chocolate and for Frozen, I decided to marry the two for her cake.

Once the cake was baked and cooled, I frosted it with a crumb coat and let it set in the fridge overnight. The next day, I lay white fondant on the top and then, using a 1M Wilton tip, covered the sides in blue ombre frosting rosettes. It was tricky to get the frosting the right shades of blue, but after a bit of experimenting, I was pleased with the result.

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Next, I prepared some white and blue chocolate snowflakes. I found white and blue chocolate wafers at Bulk Barn and melted them. I then drew up the melted chocolate with a syringe and traced a snowflake pattern on parchment paper. It did take some experimenting to get the snowflakes just right. At first, I tried to do it freehand, but that did not work well, so I printed out a snowflake stencil and put it under the parchment paper and traced the pattern. I added a bit of blue crystal sugar to the white snowflakes to make them really pop against the white fondant background. The finishing touch was provided by the Frozen figurines lent to me by my friend, Ingrid, to top the cake. I used all the figurines except for Hans, because he is an asshole who does not deserve to be anywhere near my daughter’s cake. No, I don’t take a kid’s movie too seriously, why do you ask?

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I loved the look of this cake, with the rosettes and ombre effect. This is a technique I would happily do again and again. You can make your cake look pretty awesome and it is relatively easy. So if you are at all inclined to baking cakes, I highly recommend this method for your next celebration. And if you are not a baker and we are friends, if you ask me nicely, I may do it for you.

I’m Old. And I Kinda Love it.

I am thirty-four years old today. I used to think that getting older would be terrifying and awful, but it actually is pretty great. I feel like I’m in that sweet spot in life where I’m still young enough not to have a daily medication dispenser that is the size of a briefcase but old enough to stop caring so much about what other people think of me. Some of the things I do now that I didn’t when I was younger because I was too anxious and self-conscious include:

1. Leaving the house with my glasses on and no make-up. Which now happens pretty much every day. Ten years ago, I would have needed to be pretty ill to allow myself that freedom. Twenty years ago, even illness wouldn’t stop me from putting in my contacts and putting on my make-up. That is actually what I would do before going to the doctor to get a wicked case of strep throat assessed. Insanity!

2. Singing along to the radio with the car windows down. In my youth, I would have the music blasting, but a carefully cool and indifferent look on my face. Now, I belt out Taylor Swift and bop around in that driver’s seat happily. I’m sure the group of high school kids waiting for the bus had a good laugh at that sight, but I really don’t care. In fact, I’m happy to provide a little entertainment.

3. Speaking of the car radio, I don’t often listen to music in the car anymore. Instead, you will catch me listening to AM radio for the traffic, news, and weather reports. My teenage self would be APPALLED. I was always so annoyed when my parents switched to an AM station- um, BORING! But now, I find it so practical and informative that I just can’t resist it.

4. Ordering what I actually want to eat when out at a restaurant instead of ordering only a salad or refusing dessert because I wanted to be dainty and feminine. Fuck that! If I somehow find the time to get of the house for dinner, you better believe I’m ordering filet mignon with a slice of cheesecake for dessert.

5. Dressing for comfort instead of fashion. Ten, fifteen years ago, I wouldn’t be caught dead wearing running shoes outside of a gym. Now, I wear them on just about any occasion. I literally do not own a pair of high heels. In fact, the most uncomfortable shoes in my current rotation are the lovely new Birkenstocks I got for my birthday (thanks, Dad and Liz!) and that’s only because they haven’t completely molded to my feet yet.

6. Going to bed early. Back in my youth, I would frequently postpone sleep in favour of staying up late to watch another episode of Friends/Gilmore Girls/West Wing/Scrubs or to finish off the book I was reading. If I was planning an evening out, I may not head out of the house until 10 or 11pm. Now, my bedtime is around 9pm. In the summer, I am often in bed before the sun sets. I know that if I trade sleep for entertainment, I will wake up exhausted, grumpy, and headachey. That missed sleep is gone forever- there is no opportunity to catch up on sleep anymore. After years of the sleep deprivation that comes with little kids, I seriously fucking value my sleep. Yes, I have an early bedtime and I have no regrets.

So yeah, getting older is pretty awesome. All you twentysomethings out there, stressing about aging, just think about all you have to look forward to! I love this freedom to be truly myself. At thirty-four, I feel happy and fulfilled. I have a fantastic, loving, and supportive family. I have a job that I love. I can sing at the top of my lungs when I am in the mood to do so. My feet don’t hurt. And I wouldn’t trade any of it for anything. Thirty-four is great.

My life at 34:

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I love it.

One in 7 Billion

It’s been over eighteen months, but I can still remember every detail of the day we received Penelope’s diagnosis. It was a cold day in early December. I was wearing a black tunic and leggings (this was basically my post-partum uniform). I went into the appointment feeling fairly certain that we were about to be told there was no genetic cause for her microcephaly. As we got settled into the meeting room with the doctor, Penelope began to fuss a bit, so I started nursing her. And as I held her little body in my arms, I heard the words that changed our lives: “The test results have shown that Penelope has a chromosomal deletion, and unfortunately, it is a large one, with many genes affected.”

There was a loud ringing in my ears and a lump in my throat as I tried to process that. I felt disoriented and the tears began falling freely. I was shocked, overwhelmed, and devastated. And when we were told that she was likely the only known case with this particular deletion, the feelings of isolation set in.

A rare chromosome deletion is a very lonely diagnosis. There aren’t multiple networks of information and support like there are for parents of kids with Down’s Syndrome or cerebral palsy. There are no “10q23.31-24.2 deletion” fundraising runs. There is just you and your child and a lot of fear and anxiety about the future. There is no prognosis, because no one has ever seen this condition before. There is a lot of being told, “We just have to wait and see how she does.” I now detest that phrase. I want answers, dammit! WIth a rare chromosome deletion, however, answers are not readily available. But chromosome disorders as a whole are actually not all that rare- did you know that approximately 1 in 200 babies will be born with some kind of chromosome abnormality? Sometimes the abnormalities aren’t picked up until adulthood and sometimes they have no known clinical significance. And other times, like in Penelope’s case, the physical manifestations of the abnormality are present from birth.

June 7-13th is Rare Chromosome Disorder Awareness week. If you want more information on rare chromosome disorders, there is an organization called Unique that is a great resource- check it out. And share this post- I want other parents who have a child with a rare chromosome disorder to know that they are not alone. WE are not alone and we can support one another.

My utterly unique, utterly wonderful girl

My utterly unique, utterly wonderful girl

Five

Charlotte, today you are five. I don’t know where the time has gone. It seemed like only a minute ago, you were a teeny little baby:

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and now here you are:

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My beautiful girl. You are so much more than simply beautiful, though. If I had to pick one word to describe you today, it would be sweet. You positively ooze kindness and love. You give me more kisses every day than I could possibly count. Sometimes, you get up from the dinner table because you just have to give Penelope hugs and kisses, and you say, “Oooh, I just love you so much, sisty! I just can’t stop loving you!!” And it makes my heart melt every time. You are just the best big sister ever. You are so patient and gentle with your little sister- you have never once shown any resentment towards your sibling who requires so much attention; attention that is diverted from you. Somehow, at your young age, you understand and accept Penelope’s needs effortlessly. You have taught me a lot about the power of unconditional love.

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There is more to you than sweetness, though. You are my multi-faceted girl. You love dresses and T-ball, and combine the two with ease:

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You are smart and creative. You have been teaching me all about how the caterpillar makes a chrysallis and emerges as a butterfly. You recently drew this lovely picture…of me in the shower:

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You are independent and determined:

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It wasn’t long ago that you had to be rescued from this bouncy castle because you couldn’t maneuver your way through it, and now you can do it with ease.

You love flowers and enjoy examining all the insects and worms you come across in the garden:

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You are, quite simply, Charlotte. I am so lucky to have you as my daughter. I love you more than I could ever possibly express. Happy birthday, my darling.

Love, Mommy

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