Waiting

On Friday, Penelope was admitted to hospital. She has been struggling for months now with loose stool and weight loss, and she had reached a point where we could no longer haphazardly try strategies at home to fix it- she needed medical management in hospital. I had feared for awhile that this is where she was headed.

Since Friday, the team at the hospital was able to rule out infectious causes for this problem, and so the next step was going to be endoscopy and colonoscopy to try to visualize any problems. The doctor was also going to take some tissue to biopsy to see if that could tell us anything. All of this was supposed to happen on Tuesday. They added her onto to the OR schedule. I was up bright and early on Tuesday morning, anxious for all this to be done so we could hopefully get some answers, and I waited for her to be called. I waited, and waited, and waited… and at the end of the day, the doctor came and told me she had been cancelled for the day and he hoped the procedure could take place on Wednesday instead.

I was crushed. Devastated. Hysterical. I know this may sound like an overreaction, but it is torture to be confined to a teeny hospital room, with a child who hasn’t had any nutrition since midnight, who has faded away before my eyes; waiting for an answer, only to be told, “Sorry! No answers for you today! Maybe tomorrow!” I am well aware that the reason she would be cancelled is because there are other kids out there who needed the OR more urgently- kids with parents and families who are beside themselves with worry. I get that. But all of this brings back the memory of waiting for her to get her brain MRI. I waited for weeks, all the while being told that she seemed fine, it wasn’t urgent, and I shouldn’t be so worried about it. And after weeks of tortuous waiting, she had the MRI- and it was abnormal. Those results, coupled with the subsequent genetic results, changed the course of our lives, and it was a devastating blow. And now I feel like I am reliving that time- hearing over and over that I shouldn’t worry so much and that this isn’t urgent. It is urgent to ME. I just want my sweet little peanut to be okay.

And so I am hoping that the waiting isn’t for naught today. I just need some answers. I want to get her home and get her better. I don’t want to wait any longer for that.

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Fever

A sickness has invaded our household. It started over the summer, and slowly took over our family. We are all now deliriously feverish, because for the first time in 22 years, the Toronto Blue Jays are going to the playoffs. The Steel family has a serious case of Blue Jays fever, and the only cure is more Blue Jays.

All decked out in our Blue Jays swag

All decked out in our Blue Jays swag

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Blue Jays fever is not just limited to our family. The entire city is positively buzzing over the success of our team. For me, the love of the Blue Jays goes far beyond just this season. I have been a fan for as long as I can remember. My grandparents went to the SkyDome on opening day and got my sister and I “Domer” stuffies- mine is still kicking around somewhere. I can remember watching playoff games over Thanksgiving, and everyone in the family would bet on the outcome (I mean, they were like fifty cent bets, it’s not like we were hanging out with a group of bookies). I would come home from school in those days and my mom would have the game on while she was baking cookies or getting dinner ready. And when Joe Carter hit that walk-off home run in ’93– well, it was one of the best moments of my childhood (seriously, click on that link and watch the video. Even if you aren’t a Jays fan; even if you aren’t a baseball fan, this video will give you chills. If it doesn’t, well, then, I recommend heading to your nearest ER because you may not have a pulse). My mom was shouting at the TV, “He did it! He did it! I can’t believe it!” And then that Coke commercial came on after the game, and I think it was the first time I cried tears of happiness.

There was such a feeling of unity among Jays fans back then, and that feeling is here again. When I wear a Blue Jays shirt to work, patients, parents, co-workers, and complete strangers will stop so we can talk about last night’s game. On the first day of school, I estimated that at least a third of the kids on the playground were sporting Blue Jays gear. Charlotte has been swept up in the fever, too. She chants, “Go, Hobay Bautista!” whenever Jose Bautista steps up to the plate. She comments frequently on how the Yankees are bad guys (total parenting win). Or, when she wants to tease me, she will say that she is going to start cheering for the Yankees because she knows that will get me riled up. Even Penelope gets in on the fun- she will hold up her finger when we say “Number one Blue Jays!”

That's right, Penelope, Blue Jays are number one!

That’s right, Penelope, Blue Jays are number one!

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I honestly cannot choose a favourite player right now. It seems like every game, someone is stepping up with an amazing catch (Kevin Pillar), a clutch homerun (Josh Donaldson, Jose Bautista, Russell Martin, Dioner Navarro, Ben Revere…I could go on and on), some stellar pitching (R.A. Dickey, Marcus Stroman, David Price, Marco Estrada, Mark Buerhle) or three home runs in one game, including a grand slam (Edwin Encarnacion…and seriously, who does that?!). They are like the very definition of a team- all players working together; no one player or position getting all the credit for their success.

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I would really like to say thank you to our Toronto Blue Jays for the spectacular ball they have played this season; for bringing our city together; and for bringing back memories of my childhood Blue Jays and cheering with my mom and now forming new memories of cheering with my family. Good luck in the post-season, boys-  bring that World Series trophy home this year. Let’s go, Blue Jays!

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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.

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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