We have officially made the move over to our new space! If you want to follow the adventures of our family, please feel free to make your way over there – we would love to have you!
We have officially made the move over to our new space! If you want to follow the adventures of our family, please feel free to make your way over there – we would love to have you!
The last few days have felt like an incredible roller coaster, but the good kind for once: the dips have lead right into these amazing highs that have sent shivers up our spines with hopefulness and finally culminated in today.
It was Lily’s first day of Junior Kindergarten. It wasn’t perfect, not by a long shot. We had to wake her up and she was cranky; she vomited up her entire breakfast (luckily before she was dressed) and then, during our unexpected morning bath, she pooped in the tub; she screamed through having her hair bruised and refused to look at the camera while I tried, desperately, to get that iconic “first day of school” photo, with my perfectly printed sign and her adorable first day of school outfit. Her teacher and EA seem wonderful and took the time to listen to the few things we were able to tell them this morning and are excited to get working on walking and eating. The other kids in her class are adorable and are just a little more advanced than she is at this point, which is exactly what we were hoping for – that she would end up in a classroom where the other kids might help to motivate her. However, right now Lily doesn’t really love other kids and while they told us that she did okay, reading between the lines we were able to tell that she was feeling out of her element for most of the day and had no issues voicing that.
But do you know what? This is all okay. This is nothing we weren’t expecting with Lily and frankly is nothing that all parents go through: somedays don’t work out the way that they do in your imagination, sometimes your kid vomits at the worst possible time, sometimes they’re not the amazing kid that you know them to be. This is the life of being a parent that were relishing. A little less worry about therapies and feeding schedules and heart conditions, and more focus on making the transition into school the best one for her. So while this day certainly didn’t match the vision I always had of the first day of school, I’m still flying fairly high on the fact that this is where our life is and how nice it is to be experiencing something at the same time as all of the other kindergarten parents. I never, ever thought that putting together a back-pack for school would include diapers and a foley catheter instead of crayons and lunch, but in the end it’s the backpack that matters, not the contents.
One of the things we were happy to bring along today was Lily’s new walker! While she had been fit for it earlier in the year, there was some back-and-forth between us and my insurance company about whether they were going to cover the cost that comes out of our pocket (we’re lucky in Ontario that the Assistive Devices Program does cover 75% of the cost of the walker) and we couldn’t complete the order until that got worked out. It finally did at the end of July and her pretty blue mustang walker arrived just in time for school. When we first tried it out months ago, Lily needed a lot of support to take even the most tentative steps – a lot of crouching behind her and prompting her legs to go through the motions. We’ve spent a lot of time with her therapists from Bloorview working on getting her legs ready and the difference it made was incredible. While she was cautious when we first got her in place, it only took a couple of minutes for her to put the pieces together and she took some incredible confident steps….and then she did it again and again and again. She may not be running a marathon anytime soon, but I can actually see a time in the not very distant future where she’ll be walking to school instead of being strolled there and there are actually zero words to describe how incredible that hope feels. She’s standing on this huge verge, this incredible milestone, and there is no greater feeling than watching her work out how to make it happen.
The truth is, I’m prouder of this little girl than I have ever been of my own self, and I really do think that she is going to do amazing things; it may not be some big elaborate gift that she brings to the world – she may not cure cancer or write the most incredible book of sonnets, but I don’t think a girl who works so hard and is so determined can get through life without touching people. In fact, I think it may have already started. Last week I had an incredibly interesting encounter through Twitter with an individual that I had never met, in person or online. My brother-in-law had been at a TFC game and was taken aback when he heard two of the employees at BMO Field calling each other “retards”. He tweeted both TFC and BMO Field to bring their attention to it and I re-tweeted and echoed my own sentiment that I hoped this was something they would address with their employees. This random person sent me a tweet back with a horrible response and I was completely shocked. I thought about ignoring him and blocking him so that I didn’t have to deal with his stupidity, but then I remembered this experience and knew that, in order to be the mother that I want to be, I had to address it and not just passively accept the behaviour. I attached a photo of Lily, standing proudly in her new walker, and sent him a tweet thanking him for sending such a useless response. To be perfectly honest, I expected the encounter to end there because honestly, who would respond to this? Well it turns out, this person would. Not only did he acknowledge that his original tweet was pathetic, apologize profusely and promise me that he would never use the r-word again, he then made a donation to the National Down Syndrome Association to show that he truly meant everything that he said. It was beyond anything that I had ever expected and made me so happy that Lily was able to help create this small change in the world. I can only hope that this change spurs another – that he really will never use this type of word again and maybe take a minute to share this experience with someone else and keep the change going forward.
A little extra change going on around here has to do with Giggle & Hugs itself. I had been toying with the idea of moving this site to a self-hosted domain and combining it with one of my other passions – photography. While I think that I’m still quite a way from being an actual “photographer”, I’ve been feeling more confident about the quality of the work I’ve been producing lately and have decided to take a chance on myself. So, this blog will be moving and you can come and find us here: www.giggleandhugs.com. The site is still in it’s initial stages and the focus right now is still on this blog, but hopefully over the new couple of weeks you will see it evolve into a small dream come true. If you’ve been following us here by email, then you will be able to subscribe to the new site as well and we’d love to have you!
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!
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:
Me: “Yes Grace?” (because this is the 18th time she’s said my name in 5 minutes)
Grace: “I love your eyes”
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.
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.
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!
There are absolutely no words to describe the day we had…but of course I’m going to try.
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.
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.
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.
5 years ago.
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.
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.
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.
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!
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!
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
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.
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.
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….
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…
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.
This is my Pride. It took a lot of years, but then this lady happened and suddenly everything made sense. I was no longer ashamed or worried about what people would think. The door opened to a world where love is just love, and families and just families, and I get to spend every single day with this woman who makes my life so much better than it ever was without her.