A Camp Away from Home

Have we ever known Lily to just let a happy event happen without throwing in her own little wrench? We went to Disney World and she pulled out her own g-tube for the first time, this time she had a playground donated and she got an infection around her stoma!  We actually felt really bad for her – the entire site was swollen and gross looking, so after a playground visit with Theresa, Jason and Joey, it was off to the paediatric walk-in clinic for an antibiotic and then an appointment at Sick Kids the next morning for an ultrasound (to make sure that there was no abscess around the inside of her stoma that would rupture if we had to pull the g-tube).  Luckily, the antibiotics had already started working so it was determined that we could wait a week or so to change the g-tube, which would give it a chance to heal completely.  But we’ll be back to to Sick Kids just before the beginning of school to get it changed!

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Theresa and Joey, driving our new ship!

Totally obsessed with the bubble tubes at IGT

Totally obsessed with the bubble tubes at IGT

This little bug figured out how to get over the step and onto the porch floor without any momma assistance!

This little bug figured out how to get over the step and onto the porch floor without any momma assistance!

After all of that excitement there was nothing we were looking forward to more than our annual week at Camp JAC.  Because of the playground build, we were there a week later than usual and it was funny how much the timing threw us off; for the past 5 years, camp was always the last hooray of summer before we came back to the city and started to see the usual signs that the summer was wrapping up: the weather is a bit cooler, the pools are starting to get less busy and the CNE has begun.  This year, the CNE opened before we even left and we didn’t spend the August meteor shower laying out and watching it surrounded by our campers who want to do this cool thing but usually can’t pay attention long enough to actually see it happen.

But finally we arrived and it was like an amazing homecoming.  From the minute the campers arrived, it was as though we had never left. I don’t think there is a week in the year where Jess and I laugh so much for so many days in a row.  Between the jokes, campfires and lazy afternoons spent making friendship bracelets on the swing we always end up leaving feeling exhausted but revived.  As each year passes, I find that I look forward to this week more and more and I feel less like I part of giving these campers a good time and more like they give so much more to me.   The kindness and sense of family that exists between them makes my heart happy every single day.  And really, truly, it’s impossible to be unhappy when a camper interrupts your thoughts with this exchange:

Grace: “Crystal”

Me: “Yes Grace?” (because this is the 18th time she’s said my name in 5 minutes)

Grace: “I love your eyes”

 

 

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What I especially love is just the absolute and complete acceptance of our family to our campers.  They have never questioned that Jessica and I are a family, and when Lily came along, they never questioned where her dad was, they just knew and accepted that we were both her mom’s.  This year, we ended up having a long talk one afternoon about how Lily was adopted and what that meant.  We explained to them that Lily was born to another mom and dad, but they weren’t sure they could take care of her, and so they let Jess and I adopt Lily.  They asked if Lily ever saw her other mom and dad and we explained that she did and this just made so much sense to them – of course she would see them, they’re her family too.  Sometimes you have to wish that life was this easy to explain to everyone.

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The week did not go off entirely smoothly though.  On Sunday morning I woke up with a sore throat, but it’s very dry at the house and so I thought that my sinus’ were just irritated.  As the day went on I felt worse and worse and by the time I went to bed, I could feel that I had a bit of a fever.  I was awake off and on all night and even with taking tylenol every 4 hours, I couldn’t get it to break.  When I finally went and took a look in the mirror, I realized that my throat was so swollen and gross that I could barely see the back of it.  Unfortunately, we were in a small town and so my only option (for lack of a walk-in clinic) was the town ER.  After much shorter of a wait than I expected, I walked away with an unknown diagnosis but an IV in my hand and clinic visit booked at the closest CCAC office to go and get set up with an infusion pump so that I could have IV antibiotics administered every 8 hours for the next 3 days.  The poor ENT actually thought that I had an abscess on my right tonsil but my throat was so swollen that she couldn’t get in far enough to see.  The hope was that the antibiotic would treat it enough to bring the swelling down and get a good picture of what was going on.  So, once a day, Jess had to drive me into the nearest city and wait for the nurses there to check my IV spot, move it if I had blown the vein – which of course I did on the second day – and then attach a new bag to my IV.  Luckily when I went back to the ER on Thursday morning to get reassessed, they were much happier with the state of my throat and there is no abscess to be seen so I’m off the hook with another week of oral antibiotics and a strong recommendation to speak to my family doctor about having my tonsils removed – because apparently I’ve gone back in time to being 8 years old.

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In the end though, it was a fantastic week, surrounded by some of the best people I know and sadly, before we knew it, it was over and we were back on the road to our own beds, a dinner with grandpa and Uncle Jeff,  and a surprise in the mail for Lily – a new friend, who came with her own g-tube! Not only was it totally unexpected, we also have no idea where she came from, but are sending lots of thanks to this incredibly kind person!

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Million Dollar Day

There are absolutely no words to describe the day we had…but of course I’m going to try.

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Today was Lily’s playground build – an incredible gift granted to her by the Million Dollar Smiles foundation and sponsored by the Bank of Montreal.  The volunteers were all in place by 9am this morning, and after a few words (and tears) from Jess and I, they were off.  Lily was banished inside the house for the day so that she would be surprised at the final reveal, but Jess and I were able to come in and out (although not allowed to help – we were told just to spend the day relaxing with Lily), take photos and chat with everyone, and so we were able to see the incredible work in progress.  By 2:30pm, they were done, and luckily just as my dad arrived, we were allowed to bring Lily out and show her this incredible backyard haven.  She was a little overwhelmed at first by all of the people, but by the time she played in the swing, took some photos and almost dove face first into the cake, she was happy to be passed between everyone who was eager to just say hello.  I’m not exaggerating when I say that she pretty much disappeared for at least half an hour, and loved all of the hugs and snuggles she got.  By the time they wrapped up and started to head home, we couldn’t believe that this day had finally come to a close.  After a visit from Jason, Theresa and Joey, and dinner with Pa and Gramma (who of course had to try the slide out for herself!), by the time 7pm rolled around, Lily pretty much dove to get into her bed.

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I’m just focusing on the details, because I don’t even think that I can wrap my head around what emotions I’m feeling.  Beyond the excitement and eagerness to get out there and start playing, I’m just so overwhelmed by how it feels to be on the receiving end of such an incredible gesture.  I tried to explain it to the volunteers in the morning while recounting Lily’s story for them: to be able to just take Lily out to our backyard and play, on a structure that will grow with her and her abilities, is such a gift.  For us to have something, right here, that can take all of the skills she is practicing in therapy and to actually be able to use them in play, is something that we probably couldn’t have given her.  That isn’t to say that some sort of play structure was never in the future, but the fact that it’s this one – that truly has features that work for her, coming at this time, is incredible.  The playground also included a small picnic bench and I just had this amazing vision of Lily sitting there, playing while her g-tube backpack sat beside her, enjoying the sunshine and just being outside, instead of being stuck in her highchair while she eats for an hour.  Beyond that, the fact that our backyard was just filled with total and complete strangers, who all looked so happy and excited to be there and who came up to us all throughout the day and thanked US for giving them the opportunity for doing this was mind-blowing.  When we told them Lily’s story in the morning, there were a few people that I saw wiping away a couple of tears, but at the end when we were able to bring Lily out and they got to meet her and see her playing, I was the only one crying; everyone else had these incredible smiles on their faces and I realized then that the name of the foundation, Million Dollar Smiles, is about so much more than the smiles that appear on the kids faces but also about the great feeling you get when you see your efforts being truly appreciated.  How the end of just a single day could feel like a “full-circle” moment is beyond me, but it really did.  We just kept thinking today about how the neurologists told us that we shouldn’t hold on to any hope that Lily would see again, that she was blind and that wasn’t going to change – it felt like looking at an empty backyard, empty and bleak and a world that seems cold and unwelcoming.  And now, just like when look behind us and see how far Lily has come and how she has constantly surpassed so many of the expectations that people had for her, our backyard is just filled with hope of what the days ahead will bring: hopefully many afternoons filled with laughter, love and growth.

One more minute and this cake may have ended up on the ground - this bug is totally into throwing everything!

One more minute and this cake may have ended up on the ground – this bug is totally into throwing everything!

2 great women: Janet, Lily's vision therapist, who nominated our family, and Ana, the founder of Million Dollar Smiles

2 great women: Janet, Lily’s vision therapist, who nominated our family, and Ana, the founder of Million Dollar Smiles

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So thank you to Million Dollar Smiles and BMO. Thank you for giving our backyard, and our family, an amazing future to look forward to.

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5 Years of Love

5 years ago.

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My sister’s first pregnancy was like a stab in the heart.  Not intentionally of course, but it seemed to come so soon after I lost Ben, that I didn’t know how I would handle it.  For the first while, it was okay, she could tell me about her experiences and I could relate them back to my own.  It was exactly what I had always wanted – to share that experience with her.  But then her pregnany continued past 21 weeks and I no longer had any stories to share – she was now travelling the road that I had come off of.  Watching her, glowing in all of her expected mommyhood was harder than I had ever truly thought it would be and while I did my best to put my brave face on, it wasn’t always succesful and there were times where I had to pull away a little.  It was hard and I was terrified that when this baby finally arrived that I would be too jealous of what they had to love him the way that I wanted to.

And then came Thorsten.

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I will never be able to put into words what it felt like when I first held him close to me.  It wasn’t the same love as a parent – my sister and brother-in-law had that beaming from every inch of them – but it was fulfilling in a way that I had never expected.  In that moment I knew that, while there was a Ben-shaped hole in my heart, I didn’t have to fear that there wouldn’t be room for more love; his tiny heart beating healed mine.  With every snuggle or giggle that I’ve shared with him since I have learned that our hearts only get bigger.  When I first heard him call me “Kik”, his voice broke down the wall that I had put up to protect my heart.  He helped my heart prepare for how much I would love Lily and there are times when I see how much he loves her that I’m almost brought to my knees because I’m so thankful that he’s here.  Because of him, when my sister asked me to be in the delivery room when Ollie was born, there wasn’t a moment of hesitancy because I knew that there would only be more love.  I can’t believe that it has been 5 years since that amazing day and a year won’t go by where celebrating his birthday will also feel like celebrating my own.

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Our little family seems to be surrounded by love these days.  A few weeks ago, a friend of ours came to drop off a hammock that we were taking off their hands.  We didn’t especially know what we were going to do with it – our backyard was so overgrown that it actually resembled a jungle.  As he dropped it off, he started looking around and you could see the wheels in his head turning.  Before I knew what was happening, he had planned out how to take down the half-dead trees, pull out the decrepid garden boxes that were just taking up space and extend the patio so that we could actually enjoy our backyard.  Each weekend (and many weeknights) since have been a flurry of shovelling, raking and levelling, but it’s so close to being done that I can taste it.  Out of the goodness of his heart, we could actually begin to see a backyard that we could enjoy spending time in.

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And then, as if we had planned it this way, we got a phone call.  Lily’s early intervention vision worker, Janet, who has been with us since Lily was 8 months old, had nominated Lily to receive a backyard playground from a foundation called Million Dollar Smiles and our family had been chosen! So now all of this backyard work has a purpose because on August 14th, Million Dollar Smiles and a team from the BMO head office, who are sponsering Lily’s playground, will arrive at our house and a huge playstructure will be left behind.  There are zero works for how overwhelmed we are with all of this generosity: from Janet, who thought of Lily in the first place, to the time being put in by Million Dollar Smiles and BMO! A couple of the volunteers from Million Dollar Smiles came to the house last week to drop off the boxes and they stayed for easily half an hour, walking us through what the day would look like, the best place to put the play structure and showing us the modifications that they’re going to make so that it works best for Lily’s needs – they customize each play structure for the specific needs of each child, which is just an extra touch that makes it so meaningful.  I can’t wait until we get to see the finished product!

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