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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Reflection

Since posting yesterday about the unsettling discovery I made about Penelope’s schooling, I have had some time to think about things. Learning that Penelope will not be able to go to the same school as Charlotte has really upset me. I feel almost as sad as I did the day we learned of her diagnosis. In mere moments, the vision I had of Charlotte looking out for her little sister at school; of dropping them off and picking them up together; of watching the two of them in concerts; of knowing that Penelope would feel safer and more comfortable in an unfamiliar environment with the knowledge that she is in the same building as her sister; of Penelope being integrated with her peers- all of that has evaporated. And I am still reeling from the shock.

It just doesn’t seem fair. How can the school board ask this of families? To separate siblings; to make one feel excluded and inferior? I would like to find the person responsible for this policy and ask them how they would feel if it was their child who was being treated this way.

I think another reason why I am so upset about this is the fact that it is forcing me to consider Penelope’s future. I can keep my positive attitude pretty easily when I am focused on the present. I can handle the day-to-day challenges with relative ease. I can revel in the progress she makes. But when I have to look at the big picture and think about what the future holds for my sweet baby, I get scared and sad.

The reality is that she is significantly delayed. And although she has made a lot of great progress- progress I am extremely proud of and happy about- that gap between her chronological age and her developmental age is widening. I have to wonder about whether or not she will ever be able to live independently. Will she be able to have relationships and form friendships? Will she ever be able to have a job or receive any higher education? And I grieve to think these basic things which many people take for granted may be out of her reach.

I find myself in mourning yet again. Somehow, some way, I know will find my positive attitude again. But for right now, I feel sad. And that is a difficult admission for me to make. I am an optimist at heart. I always try to find the positives in difficult situations. It’s hard for me to admit that I am struggling to do that today. I think this discovery has knocked me a bit off balance, and I hope that in a day or two, I will find my footing again, and I will be able to reassure myself everything will be okay.

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My Mind Playing Tricks

To say that this has been a busy week would be an understatement. I am both physically and mentally exhausted and I cannot wait for some down time this weekend. There is one more thing to get through before I can relax, though. Tomorrow Penelope is going for her sedated echo at Sick Kids to check on the structure and function of her heart. The chromosome deletion that she has puts her at risk for thoracic aortic aneurysm, so it has been recommended to us that she get yearly echos done to assess for any signs of that.

This appointment was made months ago, and I haven’t really been thinking too much about it. We had more pressing issues to deal with: the G-tube, and those weird spasms she started having, to name a couple. As recently as a couple nights ago, I brushed off any worries about it to my dad and his wife, saying that I wasn’t too concerned about it and expected everything to be fine. Now that it’s upon us, though, I’m feeling more and more anxious about it. After all, the very first inkling we ever had that something was wrong with our baby came when I was pregnant, at the 20 week ultrasound, where the radiologist couldn’t properly visualize her heart and was concerned about its structure. A fetal echo was done, and it didn’t show any abnormalities but the cardiologist recommended she have an echo done when she was a couple weeks old. That echo was more conclusive, and showed only an innocent murmur. So even though that issue was resolved, it’s not easy to shake off worries about your baby’s heart, and now, all of a sudden, those fears are resurfacing.

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I’m hoping that it’s just my mind playing tricks on me, but I find myself watching her, thinking, “She looks pale. What if it’s because there’s something wrong with her heart? Her lips and around her nose looks a little blue. Could something actually be wrong with her heart? What if her lack of weight gain is related to a cardiac problem?” And on, and on, and on.

And of course, after everything I watched my Mom go through (she had a congenital heart defect, and after years of being in severe congestive heart failure, she passed away in 2011), the thought of Penelope having some kind of cardiac problem absolutely terrifies me. Logically, I know that the combination of that fear and my anxieties in general about Penelope’s health are likely causing me to worry about things that aren’t really a problem. I just don’t think I will be fully relaxed until I hear the cardiologist say that everything is fine. Which IS what she will say. Right?

Friday afternoon can’t come soon enough.

Charlotte and my mom, a few months before she died

Charlotte and my mom

Superstitions

When I was a little girl, I worried incessantly, over just about everything. I did this as a way to protect myself from shock and disappointment if something bad happened. I would worry about upcoming tests at school, so that I would be prepared if I received a bad grade. I would worry about recess at school, so that if my classmates didn’t want to play with me, I could face it without crying. And as I got older, this worrying took on more of a “preventative” role in my mind. If, for example, I worried about my parents getting into a car accident, this somehow prevented it from actually happening. And I used the fact that my parents never did get into a car accident as proof that this preventative worrying was actually working. And then as I got older still, I faced a variety of challenges, and for awhile, part of me blamed the fact that I hadn’t worried about these challenges in advance as justification for the situation I found myself in. The reality, obviously, is just that everyone has challenges in life, everyone makes bad decisions from time to time, and no amount of “preventative worrying” can change that. So I indulged in the preventative worrying less and less over the years, and pretty much gave it up altogether after my mom died- something I had in fact spent a lot of time worrying about, and all that worrying didn’t do a damn thing to stop it from happening.

My mom and Charlotte

My mom and Charlotte

And then Penelope was born. Things weren’t exactly going smoothly, but I still didn’t bother with any of my preventative worrying. In fact, as I planned her two-month check-up with our family doctor, I was kind of looking forward to it- I thought, maybe I can get some help in dealing with her rash, her congestion, and her constant need to nurse. It was a warm fall day, and I thought about how nice it was to be out of the house with my sweet baby. So I was not prepared to hear the doctor say that there was a serious problem with her head size. It was shocking, and the shocks kept coming over the next few months. For awhile, I really only ever expected to hear good news from the doctors who were trying to figure out why Penelope’s head was so small. For awhile, I convinced myself that she was just going to have a small head. So I was not prepared when the MRI results were abnormal. I was not prepared when the genetic results showed a chromosomal deletion. I was not prepared when she was diagnosed with a swallowing problem and needed an NG tube. And deep inside, I blamed myself for giving up the preventative worrying.

If only I hadn’t stayed so positive, and I had worried more about these tests and these appointments, then my baby wouldn’t have to deal with this. You FOOL!! I wanted to scream at my past self. Why didn’t you worry more??

Of course, this is not a rational thought. If a friend or a patient confided that thought to me, I would tell them that this is not their fault, and that all the worrying in the world wouldn’t change things. It is not so easy to follow my own advice.

And so here I am again- today, Penelope has an appointment with a developmental pediatrician to assess her developmental delay. And I am torn- do I brush off my worry and stay positive, or do I give in to this superstition, to somehow ensure that it will go well? As a mom, I would do anything to make sure she is okay, and what’s the big deal about a bit of worrying to make me feel like I’m doing something for her? And yet I know that this is not a particularly healthy habit to get into again- it’s a slippery slope from some “preventative worrying” about doctor’s appointments to checking to make sure I’ve locked the door five times to keep my family safe.

I know, rationally and logically, that the worrying isn’t going to change anything. But there is nothing rational or logical about parenthood.

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