A New Season

We are now several days into the official start of fall, and I suppose it is time to say farewell to summer. This summer was a good one- one of the best in recent memory. We spent a lot of time outside, the weather was sunny and warm, and we even got in a little cottage getaway at the end of August. It was very nearly perfect, and I am sure that as time goes on, the memory of hearing, “What are we going to do now, Mama?” fifty times a day will fade and I will remember this summer only as a happy, blissful time in our lives.

Some highlights:

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And now here we are, nearing the end of September. We have entered into a new season. Charlotte is in French Immersion now; in a class that doesn’t include her nearly lifelong partner in crime, Vera. These two changes combined made me very nervous about the new school year. Unsurprisingly though, these changes were probably harder on me than on Charlotte. She is now spouting French phrases around the house (“Regardez moi!”) and she still plays with Vera every day before school and during their outdoor play times.

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This is a new season for Penelope, too. She is now attending a home daycare with the most lovely caregiver I could have ever hoped for. She has adjusted to this change beautifully. Penelope has two new playmates in the toddlers that attend this daycare, and she adores it. I love the fact that she is out in the world, with her peers, and enjoying herself. She has made so much progress recently- she seems to be understanding phrases and directions and she is pointing and communicating more. She still doesn’t have any words yet, but she makes herself known. She pulls to stand easily now, and will cruise for a few steps along furniture. And speaking of steps- she can now crawl up stairs by herself! There is no doubt in my mind that she will walk one day- she is one determined girl.

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Having fun at her caregiver’s house

Anyone who knows me well knows that I do not enjoy change. AT ALL. So all of these changes occurring simultaneously made September a bit of a difficult month to navigate. In addition to the changes, I have been working a lot more- nearly twice as much as I was before- and trying to balance the shift work with family life is exhausting at times. Things are more settled now, though, and I am breathing a bit easier. I would be lying if I said I wasn’t still wary of what the future has in store, but I am trying to focus on the present. Right now, life is good. Everyone is happy and healthy. This new season is a good one so far.

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One Year and Seventy Pounds

I did something today I haven’t done in about ten years: I wore a bikini. At a public pool. I bought this bikini in the spring, hoping that I would be able to work up the courage to wear it this summer. A couple days later, I went back to the store and bought a tankini top as a back-up, which is what I have actually been wearing all summer. But it was so hot today, and my tankini needed to be washed after a few days at the cottage, and I really wanted to take Penelope to the pool. So I dusted off that bikini top, and we headed out to cool off with a swim.

Best selfie I could manage. I'm thinking I need a millenial to give me some selfie-taking tips.

Best selfie I could manage. I’m thinking I need a millenial to give me some selfie-taking tips.

I wish I could say that I tore off my tank top and shorts, and jumped into the pool with a victorious, “Look at me now, bitches!” cry. I may have parked us behind a tree because it had lots of “shade” (ie, I could shed my clothes in relative privacy and take a few deep breaths before venturing out to the pool). But I wasn’t as nervous or self-conscious as I thought I would be. Part of that stems from the fact that I’ve lost about seventy pounds over the past year or so, though my body is far from what most women’s magazines would classify as “bikini ready.” Thanks to two pregnancies and multiple cycles of weight gain and loss in my lifetime, my stomach will never be flat again. I have stretch marks and flab and I just love ice cream too much to ever be a size zero. And of course, breast-feeding did a number on my boobs, so I’m no longer as perky as my twenty-something self. I am healthy and strong now, though, and that knowledge gives me the confidence to wear and do what I want.

One year and seventy pounds has made a huge difference in my life. I don’t shy away from activities because I am unfit or ashamed of my body anymore. I used to spend my summers covering my body in as much clothing as I could get away with in the heat. I used to avoid doing things like going to the beach or to the splash pad or even just for a long walk, because I knew I would be sweaty and gross and out of breath and I felt terribly ashamed of myself. It would take me forever to get dressed to leave the house, because I would have to try on many different articles of clothing to figure out what made me feel the least hideous. This has not happened to me even once this summer. I wear tank tops and shorts most days. I have gone to the pool and the park and on many long walks with the girls without even thinking about how I would look or feel during these activities. I can get dressed in about thirty seconds (once I track down whether my clean clothes are still in the dryer or the laundry basket, waiting to be folded). I’m just living my life, without those seventy pounds weighing me down, physically and emotionally.

So yeah, I wore a bikini today. And I know that’s not much of an accomplishment in the grand scheme of things- I mean, I wore a weather-appropriate article of clothing to a local pool, it’s not like I climbed Everest or cured cancer. It just speaks to how much I have changed over the years, and I think it’s a change for the better. I wore a bikini, and I survived. There was no laughing and pointing or “beached whale” comments (at least none that I noticed). Most importantly, Penelope and I had a fun afternoon without my body image hang-ups interfering. And that’s something worth writing about.

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My Mini-Me

If I had to describe myself as a little kid, I would say that I was a scaredy-cat people-pleaser. I was shy and anxious, especially in new situations, but I desperately wanted others, especially adults, to like me and to think I was a “good” girl. Charlotte most definitely inherited my “people-pleaser” trait, which I suppose is fine for now, but I don’t really think of her as a scaredy-cat. She runs around on the playground without fear, makes new friends easily, tries new foods, has little to no separation anxiety, and is in general a pretty adaptable kid. The other day, though, that scaredy-cat trait rose to the surface, and I had the somewhat unnerving experience of interacting with myself at five years old.

We are two of a kind

We are two of a kind

A bit of a back story is needed here. We enrolled Charlotte in swimming when she was about four months old. We wanted her to learn how to swim so that she could have fun in the water without fear of drowning. She stayed in swimming lessons until she was over three years old, and then we took a little break from the lessons so that she could experience other activities like dance and soccer. We figured we had laid the foundation for her enjoyment of the water, and a little break wouldn’t hurt her. We figured she would pick up where she had left off when she returned to the pool. We were wrong.

Not afraid of the monkey bars

Not afraid of the monkey bars

Somehow, in the year or so that she did not attend any swimming lessons, Charlotte developed a fear of the water. She panics in water that is deeper than knee-high. She refused to go in the pool at her sports camp in early July because she was afraid. Upon learning this, Mark and I decided that she needed to be reintroduced to the water. We enrolled her in a week of swim camp. The weekend before swim camp started, we had the opportunity to go swimming at my aunt’s pool. At first, she was terrified and in tears. I calmly swam with her and helped her and coached her and by the end of the day, she was swimming to the deep end of the pool by herself (with her puddle-jumper on). She was definitely ready for swim camp.

No fear at the splash pad, since the water is only slightly more than ankle-deep

No fear at the splash pad, since the water is only slightly more than ankle-deep

And by all accounts, the first day went well. She reported having lots of fun in the water that day. She needed a bath, though, after all that sunscreen and chlorine, so Mark got her in the tub. And somehow, the topic of putting her head underwater came up…and all her fear returned. She was clearly terrified of putting her head underwater, for reasons she could not explain to us. And Mark felt that the best course of action here would be for her to practice doing so in the bathtub. As you may have guessed, this did not go well.

I could tell that she was positively torn between wanting to make us happy by doing it but being absolutely terrified and unable to do it at the same time. She would look at us with those big eyes and sincerely promise that this time, she was going to do it, and then completely chicken out. We tried everything. I was holding her in my arms so that she would feel safe. Didn’t work. Mark dunked his head under water to show her how easy it was. Didn’t work. We practiced breath-holding and nose-plugging. Didn’t work. She just could not do it, and I swear, I was in the same situation as a kid. I was afraid of the water, my dad wanted me to just go under, and even though I really wanted to do it, my fear wouldn’t let me. It was so bizarre seeing my daughter exhibit the exact behaviour I had exhibited at her age. And now I am on the other side of it- as an adult, I know how easy it is to do and how much fun it is to swim underwater, and I just want her to be able to do it. But I also recognize how crippling that fear can be.

Part of me wants to tell her to forget it, she doesn’t have to do it, and to just cuddle her in my arms so that she forgets her fear. And the other part of me wants to push her to get over her fear, so that she doesn’t base her life around her anxieties. I know how terrible it is to make life choices out of fear, and more than anything, I don’t want her to take that path. Sure, right now, it is just a refusal to put her head underwater, but eventually, it can become a refusal to leave an unhappy relationship in her early twenties because she is afraid of being alone or a refusal to change career paths because she is too afraid of the unknown.

I know it isn’t realistic to expect her never to be afraid. I just want her to learn to overcome her fears- to know that, yes, she can be scared, but that fear doesn’t have to control her. And the earlier she realizes this, the better. I am thirty-four, and STILL trying not to let fear control me. I don’t want that for Charlotte. And so, I am going to push her, gently and often, to put her head underwater. And I know that one of these days, she will do it. And she will see a world open up to her, where she can do somersaults and handstands and try to touch the bottom of the pool and jump off the diving board and HAVE FUN. I hope she can make the connection that all that fun opened up to her because she did something scary. I hope she learns that doing scary things can have a big pay off. I hope she realizes how strong and brave she really is. Truly, I hope she is not like me.

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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!

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