Little Moments

People often ask me how I cope with everything that is going on with Penelope. “How do you deal with it?” they ask. “If it were me, I would lose my mind,” they say. And the truth is, some days I do feel like I’m losing my mind. When she was first diagnosed, I was up all night, watching her sleep between feedings, terrified that if I closed my eyes, she would have a seizure or stop breathing. As time went on, and she didn’t have any seizures, I adjusted. I wasn’t happy about the situation, but at least I could close my eyes again without the fear that something was immediately about to go wrong. And I think what got me through that time, and what still gets me through every day, was reveling in the little moments that happen every day-those  little moments that bring happiness and are what make life worth living.

Little moments like Charlotte running up to me, throwing her arms around my neck, and declaring, “You are the best mommy in the whole world!” Or, “Mommy, you are so cutie!” I inhale her uniquely Charlotte scent- a combination of laundry detergent, shea butter lotion, and coconut shampoo- and I cherish the feeling of her small arms wrapped around me.

My sweet, huggable Charlotte

My sweet, huggable Charlotte

 

Little moments like when I have Penelope in the bath at the end of a long day, and she is full of smiles. She coos, and kicks her legs in the water, and I can feel my stress being washed away. Some days, the best part of my day is seeing how happy she is in the bath.

Penelope loving her bath

Penelope loving her bath

 

Little moments like Charlotte coming upstairs, dressed in some crazy combination of clothes. I’ve seen her wearing pajamas over her jeans, a tutu over the pajamas, accessorized with a sun hat and fairy wings. She is always so proud of her creative outfit, and I am proud that she is able to indulge that free spirit.

Charlotte dressed in her interpretation of the tooth fairy

Charlotte dressed in her interpretation of the tooth fairy

 

Little moments like when Charlotte asks me if she can sit with Penelope and wants me to take their picture. She adores her little sister, and the feeling is completely mutual. Often, when Penelope is fussing for whatever reason, Charlotte is the one who is able to get a smile out of her. I love seeing that sisterly bond.

My girls

My girls

 

Little moments like Penelope achieving a milestone. Last week, she finally rolled over for the first time. She wasn’t quite 100% of the way over- she couldn’t get one of her arms out from underneath her- but it was a big deal, and it filled me with so much joy.

Rolling over for the first time

Rolling over for the first time

It is the little moments that get me through. I don’t think that is unique to our situation, though. I think that is how most people get through life, and you don’t need to have a child with complex needs to relate to this. Like every parent, I’m just taking it one day at a time, trying not to stress about the things I can’t control, and trying to take pleasure out of all the good things in our life- and there are a lot of good things here.

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Anger Management

8:57pm. I have checked the time on my phone for what seems like the thousandth time today. I heave a sigh, and realize it is time to give up expecting that phone call. In reality, I should have given up hours ago, but sometimes I just can’t let go of that hope. The anger and disappointment is bubbling up, and, as usual, I try to swallow it.

I am waiting for a phone call from our pediatrician. We were supposed to see him this week, but as luck would have, he has some kind of scheduling conflict and needed to cancel. He actually called me, personally, to tell me, on Thursday, which I greatly appreciated. I informed him we were heading to our appointment with the developmental specialist at Bloorview, and he promised to call me the next day, so we could review what was said at the appointment, reassess her feeding plan, and address any concerns we had with him. I hung up the phone feeling hopeful and pleased that he understood our needs.

And now it is four days later, and I am filled with disappointment and resentment. I am still appreciative of everything he has done for us- he has made a lot of arrangements for Penelope and has been kind and empathetic, in ways that other doctors were not. And believe me, as a nurse, I understand how you can get caught up with sick patients and their families, and the day gets away from you. This is why my golden rule is to never promise something I may not be able to deliver. If there was even a chance that he was not going to be able to call, he should have been clear about that. Penelope is pretty stable and there is no emergency that needs to be dealt with, but there are issues that need to be addressed- that’s why we had the appointment scheduled. He offered to call, I did not ask him to. I mean, who is he, Chandler Bing- can’t end a conversation without saying, “I’ll call you!”?

When you are the parent of a child with health problems, appointments with a health care provider who is competent, caring, and trustworthy are like a beacon of hope. I am able to look forward to talking to someone who listens, who understands what our problems are, and who works with us to fix things. Being let down yet again by someone who is supposed to be helping us is completely crushing. And though this is by no means the first time I have been disappointed in our health care system, I am still unprepared. I think that part of the reason I am so upset about this is that it reminds me of the disappointment I faced on a daily basis while waiting for Penelope’s MRI to be scheduled.

Penelope was referred to Sick Kids to have an MRI done on her brain back in October, when all these problems were first coming to light. I was told to expect to hear from the hospital within a week, and hopefully to have the MRI done within a few weeks. Two weeks went by, and I heard nothing. I left messages with the MRI department, inquiring as to the status of the referral. No one returned my call. Finally, almost three weeks after the initial referral, someone answered the phone when I called. I was told, unapologetically, that Penelope’s requisition was considered elective, and would therefore not be scheduled until likely January or February. I broke down, sobbing. How was I supposed to wait MONTHS to find out if there was a problem with my baby’s brain? The clerk was immune to my distress. A few days later, I received a phone call from the nurse at the clinic there, and she was able to put us on the cancellation list. This meant that if an opening came up, we would receive a call and would probably have about 24-48 hours notice as to the appointment date. And so the tortuous waiting began. For about six weeks, I walked around with my phone virtually glued to my hand. I dropped everything to answer calls. And every day that passed where I didn’t hear from them, my hope dimmed and my anger grew. At the end of November, I finally got the call that there was a spot for her, and I was filled with relief. And of course, that relief was short-lived when we found out that the MRI did show some abnormalities. The relief was replaced with anger- why did we have to wait so long to find this out?

So here I am again- days passing, waiting for a phone call that isn’t coming. Anger and resentment building inside me, making it hard to find happiness in every day events- a coping mechanism I rely on to keep from falling apart.

Being at the mercy of the health care system is incredibly difficult. I understand that Penelope is not acutely ill at the moment, and that our doctor likely has much sicker patients that he is responsible for, and so he may not consider it a priority to call me. But to me, there is nothing more important than her care. And there is little that is more frustrating and more disappointing, than an unkept promise to be in touch.

So what do I do now? How do I prevent this anger from taking over my life? I suppose I will keep trying to contact him through the staff at his office, though I have not had success with that so far. At least calling his office gives me the illusion that I am doing something to remedy the situation. The reality is that I am completely powerless here- I have zero control over when I will hear from him. And in the meantime, I will keep writing- this is helping to reduce that ball of resentment in my chest- and I will look at Penelope’s sweet, happy face, and let the love I have for her wash away the anger- even temporarily.

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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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The Shoulds

Beep. Beep. Beep. Penelope’s feeding pump alerts me to the fact that her feed is done. It is just before 9pm. I turn on the hall light and slip into her room and turn off the pump. As I disconnect her and flush her tube, I gaze upon her peaceful, sleeping face, and I’m struck by the thought, How did we get here? I don’t want this. The sadness hits me, and it’s so powerful that I can barely breathe. I shouldn’t be cleaning out enteral feeding equipment, I should be cleaning out bottles and plastic baby dishes, stained with vegetable puree. I shouldn’t be adjusting feeding rates and volumes to find an intake that she can tolerate, I should be experimenting with different flavours and textures of baby food to discover her likes and dislikes. And while Penelope is taking some puree and rice cereal, she’s recently had a bit of a setback in that area, and she gets most of her calories from the feeding tube.

I shouldn’t be taking her to doctor’s appointments all over the city every week, I should be taking her to Mom and Tot swim classes and sing-alongs. I should be baby-proofing the house, moving all small and delicate items out of the reach of a baby who is starting to crawl and get into everything she can. Instead, I am doing exercises prescribed by an occupational therapist, hoping that today will be the day that she will roll over for the first time. I shouldn’t be covering her hands with socks to prevent her from pulling out her NG tube, I should be putting toys in her hand and watching her explore and discover the world.

As these thoughts fill my head, I can feel that familiar lump in my throat, and the tears that threaten to fall once again, and I think, Enough. I cannot keep dwelling on the shoulds. I need to be happy and accepting of what our life is- that is what Penelope needs, and it is what I need, too.

And so, I’m going to think about the way her face lights up with a smile when I walk into her room in the morning. I’m going to listen to her cooing happily, and revel in that beautiful sound. I’m going to watch her as she stares at her big sister, completely enthralled with everything Charlotte does, and I’m going to enjoy seeing the strong sisterly bond that is already forming.

 

Penelope is completely fascinated by Charlotte

Penelope is completely fascinated by Charlotte

I’m going to cuddle her, and sigh with pleasure at the way she just curls into me, much like a newborn baby does. I’m going to cover her with kisses and tickle her toes and sing to her and play Pat-a-Cake and I will watch the happiness the fills her eyes as I do so. I’m going to enjoy her and love her for who she is: a wonderful, beautiful, sweet, bright baby. And I’m going to stop thinking about the shoulds.

Beautiful, happy baby

Beautiful, happy baby

Well, I’m going to try. Let’s face it, I’m not perfect, and I know there will be days when the shoulds start to creep in. But I’m going to be a lot more vigilant at pushing them out.

Relationship Troubles

Trouble is brewing on the horizon of my relationship. A lack of variety, my needs not being met, and I just don’t feel like I’m being heard. I’m talking, of course, about my relationship with Netflix.

For awhile now, frustrations have been bubbling under the surface of our interactions. “Forget it, Julie,” I’d tell myself. “It will get better. Netflix can change!” I finally accepted that our relationship was in trouble the other day when I was browsing through my recommendations after the kids were in bed and I was ready to unwind. First of all, well over half of the recommended shows were for kids. Come ON, Netflix! Don’t you know that it’s my time now? At 7a.m., when I’m barely awake, yes, of course, offer all the kids shows you have in stock. But at night, why can’t you understand that I do not want to scroll through Dora, Bob the Builder, Thomas, Pinky Dinky Doo, etc, to find something to watch? What are you trying to tell me, Netflix? That I don’t deserve a life outside of my kids? Well, that’s just insulting.

There were a few adult shows thrown in there- Suits (seen it), My Name is Earl (no), Gossip Girl (meh), Californication (not in the mood), and Clone Wars (no way in hell). I decided to see what else Netflix had to offer outside of the recommended category. And then, buried deep in the Drama category, I found House. And I got angry.

How could Netflix know so little about me as to recommend Clone Wars and not House? Have I not made my preferences perfectly clear? I like light-hearted, witty sitcoms like Parks and Recreation and Happy Endings (which tragically only has 3 seasons, all 3 of which I have now watched twice) and dramas with some levity infused, as in Suits and, well, House. I was stunned by this glaring omission. I mean, I gave up a long term relationship with cable for Netflix- and this is how they treat me? With a complete lack of appreciation for my interests and my needs?

And evidently, the customer “support” Netflix offers does not cover support for a customer’s emotional needs.They only deal with “technical” issues. Apparently, I have a “problem”, and am “too attached” to Netflix.  Apparently, Netflix needs “some space.” Hmmph.

Well, that’s fine. I can give them space. I’ll just stop watching for awhile. I can totally do that. Except, I really want to see the next episode of House. It’s the one where they think the guy has lupus but it turns out to be some really rare disease instead and he almost dies but the team figures it out just in time. Also, we haven’t finished watching season two of House of Cards. And Orange is the New Black will be starting again soon. Oh, who am I kidding? Netflix- I can’t stay mad at you! I love you!

Our Life

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My sweet baby girl recently turned eight months old. She is a beautiful, cuddly baby, and I adore her. But these past eight months have not been easy. When she was born via C-section and required some resuscitation, it set off alarm bells in my head that simply would not be quieted. As the hours, days, and weeks passed after her birth, my mommy spidey-sense was tingling. Something was not right. First, it was way in which her left eyelid was droopy. Then, it was the severe diaper rash that would not clear up. And when I say severe, I mean her skin was raw and bleeding, and no amount of prescription cream or rigid skin care routine worked to heal it. She was also very congested- rattly breathing with copious secretions that she had a hard time clearing. And then there was the feeding. Oh god, the feeding. Nursing her every one to two hours for months. She stubbornly refused the bottle, which meant that I was the only one who was able to feed her. I was beyond exhausted, and frustrated at constantly being told she was fine. I knew she was not fine, and that something was not right.

At our two month check up, I was no longer alone in the feeling that something was wrong. Our family doctor noticed that her head was small, and when she measured it and plotted it on the growth chart, it was clear that there was a problem. Her head was in the <0.01 percentile for size, meaning that less than 1 in ten thousand babies would have the same head size at her age. And thus began months of tests and worries. Weeks of phone calls, trying to get her moved up on waiting lists to be seen. Desperate for answers, and yet scared of what those answers might be. One of the worst things about the whole experience was the way in which I was often treated as an over-protective, hyper-worrying mom. And when the dust settled, we had a diagnosis: our baby girl is missing part of a chromosome, which has caused some abnormalities to her brain. This puts her at high risk for developmental delay and seizures, and in fact, she is about four months delayed at this point. The frustrating part of this diagnosis is that no one has been able to predict what her future will hold- there are no other known cases of people with this particular chromosome deletion. So it’s an answer that has led to more questions: Will she always be four months behind her peers or will that gap start to widen? Will she be able to lead an independent, fulfilling life, or will she continually face struggles? What new health problems will appear as time goes on?

Our current struggle is with her ability to swallow. A recent test showed aspiration during breastfeeding, meaning she was inhaling the milk as she was feeding. This led to a hospital admission and insertion of a feeding tube so that she could be nourished safely. This has turned out to be a bit of a blessing- for one thing, I am not the only one able to feed her, so I am finally getting some rest. For another, we have noticed a huge change in her- she is happy, alert, and far more interactive these days, now that she is finally receiving the right nutrition. The feeding tube is a bit of a pain to deal with, but it is certainly worth all the headaches to finally see our baby thriving.

So this is where things stand now. Our older daughter has been an absolute angel throughout this entire experience. She was never jealous of her baby sister, and is so sweet and loving towards her every day. She is understanding of her sister’s complex needs, and easily rolls with the punches with a grace and maturity that belies her three and a half years of age.

I decided to start this blog so that I could have an outlet for everything that is going on in our life. Some days, I just want scream and cry with grief and frustration, and I thought that writing here might help me get through those days. I also want other parents who have gone through or are currently facing health problems in their children to know that they aren’t alone. I have felt very alone at times while dealing with all this, and often still do, so I’m hoping that reaching out in this forum may help with that, too.

I know that no one knows what the future holds for their children, and I know that, unfortunately, many parents have to face far worse problems with their children. I know that I am lucky to have two beautiful, sweet daughters, and I wouldn’t trade either of them for anything. Knowing all of that, though, doesn’t mean that I can’t grieve for the situation I find us in. Somehow, I have to find a balance between the grief and the gratitude- someday, somehow, I will find it.

-Julie Steel