Happiness and Knowing Smiles

I’ve been taking part in a Summer Disability Blog Hop Series. The entry I wrote about the challenges we face when Lily is sick was part of that. This weeks post is asking about the Comforts and Connections that we make and as I started to write a new post, I realized that I had an older one that probably said everything that I wanted to….so, don’t feel crazy if you think you’ve read this before, and if you haven’t…then I hope you enjoy!
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There is something about Lily that really seems to attract people. I know that sounds like a proud mom boasting, and maybe this really does happen to everyone, but we seem to get stopped a lot when we’re out with Lily. There’s just something about her – her eyes, her squishy faced smile, or most usually, her hair – that makes people want to stop and say hello.

Less often, but more meaningful, are the other’s who stop us. Mom’s who look at Lily, catch our eye and share a knowing smile. They are mom’s who are walking down the same hallway with us at the doctor’s office, or riding the same bus with their own daughter. Without fail, they wait for the perfect moment and then, gently and never intrusively, come over and just want to share with us how lucky we are. These are mom’s who tell us of their own children, their own miracles, and just want us to know that beyond any hardships we, or Lily, may face, at the end of the road there is so much love. It’s always the same message – you’re going to know a love that you didn’t even know existed. They will warn us that people will be mean but they tell us to be strong and never give up hope that she will do something amazing with her life. It always something they repeat – over and over again – don’t think she won’t be able to do it, she’s going to be amazing. She’s going to surprise you in so many ways and you’re going be so happy that this is your life. Love her, they tell us, and what you’ll get in return will make up for anything you think you may have lost.

“She said I was lucky – that I’d been offered a shortcut to what life is all about when some people search for it their whole lives and never know. She said I had a secret – a secret to happiness and that, while some people may look at me and pity me, in time I’d feel like I knew something they didn’t. “Someday, Kas,” she said, “you’ll feel so happy in spite of their pity glances. And you’ll wish you could let them know – that you could show them what life is about.” ~ Kelle Hampton; Bloom

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Time Heals

Time is a funny thing.  For the past few weeks Jess and I have been constantly reminding ourselves that “time heals” – we knew that we just needed to give Lily and her body some time to get over this bout of…well, whatever it was.  And of course we were right, but those weeks felt long and it was sometimes hard to keep focused on the light at the end.  But, as all of this was happening, I woke up one morning and realized that, for the first time, I had missed the anniversary of Lily’s cardiac arrest.  Although I will never hear the date “July 15th” without knowing what it means in our lives, July 15th came and went this year and it wasn’t until it was over that I realized that it had passed us by.  And that’s the joy of time – sometimes it really does begin to heal you.

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I feel that a lot of this year has been spent moving forwards.  Not only has Lily’s development moved in leaps and bounds, I think that this year has given me the chance to start moving forwards as well.  In April we had an event at work where a patron died suddenly and being involved in that situation threw me for a bit of a tailspin.  It brought me to the point where I questioned whether staying in my current career was the best decision for me, if I would ever be able to be involved in the kind of situations that we deal with and actually do my job without it causing this same type of reaction. I felt weak and humiliated.  But then someone said something that truly and completely resonated with me; she said, “things may not get better, but that’s okay.”  For the first time, I began to accept that  I may never be able to react the same way to an emergency situation: I may always get anxious and I may always have a day or two afterwards that are really hard, but that’s okay.  This may just be who I am now and that’s okay.  For all of the times that I’ve said it about Lily, I’ve never given myself permission to accept it about myself.  We’re not perfect people – our past experiences shape and define how we react to future events and for me, this means accepting that while I can deal with an emergency while it’s happening, it’s more than likely that I’m going to have a rough reaction once it’s done.  By knowing and embracing that fact, I can now focus on how to get through it the next time – showing myself the same kindness and patience that I show Lily.  It may not get better -it may just be different, and that’s okay.

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A Challenging Post

I find one of the most difficult challenges about parenting a child with special needs is trying to find a work/life balance in a world where these 2 things don’t always want to play nicely together.  I’m incredibly fortunate that my job offers flexible hours and it is a benefit that I value over any dollar figure.  This has allowed me to be more involved with Lily’s day-t0-day care (therapy, medical appointments, etc) than if I was work a more tightly-scheduled job.  And while I certain have chunks of time that are much busier and require my focused attention, in general the balance comes somewhat naturally.

When it does get difficult though is when parenting Lily actually requires 2 sets of hands; when you need a second person to unhook her feeding tube as she’s starting to vomit because otherwise it will get pulled loose as you’re trying to keep her from vomiting directly onto you and what little formula that is still in her stomach will leak out and be wasted.  I’m not saying that 1 parent couldn’t do it alone.  I’m in awe of the single parents who live this life – hell, I’m even in awe of Jess most days as she does it without me, but when Lily is sick and is literally vomiting up every meal before it’s even half way done, I’m grateful that there can be two of us.

It’s a different world though and sometimes difficult for people who aren’t living it to understand.  I don’t always feel that my words can give a proper picture of what those days are like and how stressful doing it single-handedly can be.  This is when my guilt sets in.  Without actually living in my life, I can see how it may seem like having 2 parents at home is a luxury – an over-reaction, especially during the times when it comes along suddenly and I’m walking away from work under the guise of “vacation time,” to just be at home.  It’s impossible to see the internal struggle that I feel between feeling the need to be at work and making sure my responsibilities are covered there, while being just as present at home where I’m needed just as much.  Both parts of my life are important to me – I’m one of the lucky people in life who has been able to make a career from something I love, but at the same time, I know that family and my responsibilities here are always going to win out.  And while I know that’s not unreasonable or beyond any expectation, I still can’t help but feel that pull – the one to convince people that I haven’t just blown off work for a week because being at home with Jess and Lily seemed better than being at work.  In weeks like this, I would far rather be at work because it means that everything at home is running smoothly and there’s nothing happening that’s causing us to worry, or anything going on that needs the extra support.  What’s almost amusing about this is that, when Lily was smaller, we were getting some funding for some respite – so that during times like this, we could actually bring in some extra help instead of having me leave work.  But, since Lily was smaller and not as active, it was easier for a single parent to take care of situations like this.  But now that she’s older and has made so many developmental and motor gains, but fewer communication gains, we could use the respite, but don’t qualify for any of the funding.

When Lily is sick, we struggle to figure out where the cycle is happening: Is she crying because her stomach is upset and that’s what’s making her vomit, or is she vomiting because she’s crying so hard? With almost no verbal communication skills, we’re at a loss for trying to get to the bottom of it: she can’t tell us that her stomach hurts and so we’re constantly watching for other clues – anything that will give us even the smallest hint of how to try and break the cycle.  Because we don’t have the ability to communicate with her, treating her symptoms is almost a guessing game.  We start with one idea and then keep rotating new methods in or out until we find something that seems to do the trick: suction her nose before each meal, try gripe water or tylenol to help with pain, replace her formula with electrolytes so that she’s at least staying hydrated (but then causes us to worry about her calorie intake), or slow the rate of her feed down so that her stomach doesn’t feel like it’s being force fed (which then causes the problem of getting enough calories in for the day).  At one point this week we actually considered dividing the amount of formula for each feed in half and doing 8 very slow feeds instead of 4 very very slow feeds, but a very slow feed takes at least an hour, which means she would literally be hooked up to her pump continuously, and since she needs to sit still while she eats, we realized this wasn’t even a remotely feasible option.  So instead, one of us will snuggle up with her on the couch (because she’s sick and just wants to be held), and hang out there for the full hour, ready to jump when she starts to vomit.  All while the other person takes care of the rest of our lives: laundry, meals, medications, basement and backyard renovations, and staying close enough to be that second set of hands or to take her once the meal is over, because at that point the mom on the couch has to take a bathroom break.  Beyond this is just our general anxiousness when her illness is respiratory, as we’re constantly watching for signs that it’s not progressing into anything more serious: we’re watching her breathing, the colour of her nail beds and lips, we’re worried that we’ve missed something and the vomiting is actually a sign of heart failure.  Sometimes the stress alone is enough to needs both mom’s around, so that one of is always calm in case the other one is freaking out.

Fingers crossed that this bug moves on soon….

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Remedy For A No-Sleep Night

Lily is still awake. She’s not feeling great and has been off. She’s impossible to distract, crying unless she’s being held and generally just messy. It’s been, what we call, in this house, a 2 parent day – where it is literally impossible to put her down for the fear of her vomiting again because she’s crying so hard. For a girl whose meals are measured out strictly for calories, vomit is something we try to avoid at all costs. Luckily we had more than a few good days leading up to this patch and so I’ve been living in those memories during the worst parts of today…

Ready for the first swim of the summer...and loving it.  A lifeguard momma's dream come true!

Ready for the first swim of the summer…and loving it. A lifeguard momma’s dream come true!

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Deciding that birthday cake frosting is worth licking the plate clean

Deciding that birthday cake frosting is worth licking the plate clean

 

Sister really loves Canada

Sister really loves Canada

Watching the annual East York Canada Day parade

Watching the annual East York Canada Day parade

The first time she's ever rolled her eyes at me taking photos...

The first time she’s ever rolled her eyes at me taking photos…

And sometimes that’s all you need – some good, warm and fuzzy memories to get you through the nights that seem to have “no sleep” written all over them. Look for me tomorrow at Cardiac Kids, where I’ll be talking a little more about memories and when I really began to feel like Lily’s mom.