Reinventing Mother’s Day

A mom post tonight…

I’ve been struggling with this post for a few days, mostly because I just don’t know which way to take it.  I could start by telling you all that I really am not a fan of mother’s day; not because it’s a hallmark holiday, but because mother’s day is always the start of a bad week for me.  Mother’s day and the anniversary of losing Ben go hand in hand and I’m not sure I will ever be able to separate the two – they just happened too close together.  So, I could tell you that in this week, regardless of what else I’m doing or how I may seem, the only real thought running through my mind is, “Ben should be (insert age here),” and the age keeps getting bigger (it’s 6 this year, I should be the mom of a 6 year old), but the memory of him in my mind stays tiny – because he was tiny and he will never get bigger than the little man who stretched out and still was only as tall as my two hands.  I could tell you that even though my mind keeps telling me not to give into the sadness that creeps up around me during this week, my heart just keeps pulling me there.  I never thought, never ever ever, that I could still feel his loss so sharply this many years later, but maybe that’s part of the grief process when you lose a child – instead of being able to look back and see the great things that did happen in their lives, you only really get to see what was lost, of what they didn’t get to do.

Or I could take this post to Lily and tell you how her smile, her amazing giggle and her constant squirming out of arms to reach for the dog, is the perfect antidote to sadness.  On Sunday, when I was missing Ben and Jess was missing her mom, there was Lily, who instantly made us happy again, who brought us away from the grief and reminded us, just by hearing her blow raspberries, that you have to let go and live in the moment.  Loving Lily has made me whole again, in a way that I wasn’t sure was possible after losing Ben – it is all consuming, but it has also come with it’s share of lessons: you can’t look back, you can’t change the past and you can’t be afraid to move forward just because things are scary.  Beyond being the guidelines of life with Lily, these are also the lessons that have helped me heal from that grief.

So maybe, what I really should be writing about it how once upon a time I really did not like mother’s day, but going forward I think I just need to look at it from a different set of eyes – in our house it won’t be about how great mother’s are but about how lucky we are to be mother’s; how lucky I am to get to be Lily’s momma, who challenges me everyday to be more patient and more understanding, and how lucky I am to be Ben’s momma, to know that (insert number of years) later, a mom’s love doesn’t ever stop.

IMG_2709

 

Advertisements

3 x 21: Shifting Perspectives

A mom post tonight…

We’re very lucky to have some incredible role models for Lily within our Down Syndrome family and sometimes I need those role models as much, if not more, than she does. There are times when we’re hitting a milestone roadblock or we’re up to our ears in non-stop vomiting that I find an unmeasurable amount of solace in looking at Lily’s counterparts and enveloping myself in their amazing lives.

IMG_7153

In 2012, the UN General Assembly declared March 21st as World Down Syndrome Day, “to reaffirm that persons with Down syndrome are entitled to the full and effective enjoyment of all human rights and fundamental freedoms. Let us each do our part to enable children and persons with Down syndrome to participate fully in the development and life of their societies on an equal basis with others. Let us build an inclusive society for all.” (Ban Ki-moon).

IMG_0852

Last year was our first year celebrating World Day Syndrome Day as Lily’s parents and we celebrated it quietly and with just the three of us. This year we chose to spend the day embracing our lives in this amazing community we are surrounded with. We were honoured to start our day with the Canadian Down Syndrome Society in opening the market at the Toronto Stock Exchange. Though it began a little rough, with an unintentional sleep-in causing us to rush to try and get out the door and then getting thoroughly turned around between the Exchange Tower and First Canadian Place, once we stepped into the broadcast studio we were quickly reminded why we were there. If you looked beyond the “official” types who were there representing different Down Syndrome affiliate groups, you would find yourself immersed in a group of parents and supporters watching, with so much pride, these individuals displaying the best parts of human nature – engaging, kindness, laughter and so incredibly supportive of one another. We had time to speak with a few of the self-advocates and I was filled with so much joy listening to them speak about their ambitions, their careers, their passions – so many of them echoing similar sentiments: that they simply want to educate people about what it’s like to live with Down Syndrome; to show people, who aren’t as lucky as we are, that having Down Syndrome doesn’t detract from you life, it enhances it.

IMG_7142

On this day last year I spent my time reflecting on what Lily’s life was like at the moment – what her diagnosis was bringing to our lives right then. This year I find myself picturing where her life will take her and how I really and truly believe that her life is going to be amazing. There are so many people our there right now- self-advocates standing up to be heard, parents demanding their children not be dismissed – paving the way for the next generation of kids with Down Syndrome. As time passes and each March 21st brings more awareness, I hold on to the hope that inclusion and integration will no longer be catch phrases but will actually be the norm; the hope that when Lily is ready to take the world by storm – as I know she will – the world will be ready for her and truly see her abilities.

IMG_6976IMG_6975IMG_6974

* Special thanks to Trina Hoadley for the amazing photos of Lily, as part of Toronto’s Circle 21 World Down Syndrome Day celebrations. You can see more of her beautiful work here.

A Great December

Guys, it’s a good thing that it’s almost the new year, because I totally need to make a resolution that I’m going to update you all a lot more often.  Lately I’ve just been so busy that by the time I can sit down and write a post so many things have happened and I’m scared I’m going to forget something.

jessandlily

First – it was my birthday and now I’m 2! That meant it was totally time to party.  The mom’s planned a fun afternoon for me and my friends – there was a slide and a ball pit, cars to drive, lots of food and then cake! Can I tell you that I’m seriously digging cake.  My Theresa made the most delicious cake ever (because that’s what she does) and it was so good that I actually tried to eat the plate!

lilycake

I got to see so many cool people – my birthday twin and my BFF (Daniele & Shanelle) came, even though they’re so much older and they brought their friends Sarah and Cameron, who were so much fun, and they even let Rachel and Tammy come along too.  I got to spend a lot of time with my friend Caleigh too, who is the same age as me but knows how to run and walk.  Even still, she slows down so that we can play together – she’s awesome! Mostly, it was just the best birthday ever! I can’t wait until next year.

caleighandlily

It was more than just my birthday party that was super cool, it was also my birthday present from the mom’s…they bought me a puppy! It’s a boy puppy and he’s black and fluffy and the mom’s say he’s going to be really big (which is better for me because then he’s kind of like a pony!).  There was some debate about his name because Mama C was telling Mommy not to be ridiculous, but I think that in the end Mommy won because we’re all calling him Sprinkles now.  Mama C looks a little embarrassed when she has to call him when we’re out for walks but Mommy just laughs and laughs so I think it’s okay.  Sprinkles and I haven’t spent too much time together yet, because he’s a little bouncy and bite-y still (the mom’s say that’s because he’s teething like I am), but sometimes he just sits nicely and lets me pet him (and by pet him I actually mean pull on his fur or try and stick my fingers up his nose).  The cat doesn’t really like him, but she’s outnumbered so too bad for her!

sprinkles

I had my latest check-up with my cardiologist at Sick Kids last week.  I had to be sedated so that they could do an ECHO and look and see how my heart is doing.  The mom’s were super happy because even while I was on the medication that makes me sleepy, my oxygen sats stayed as high as 96%, which is pretty incredible.  And it turns out that it’s because I am incredible! Dr. Dipchand says that my hearts looks amazing! She confirmed that there is no blood flow at all coming from my left lung, but I’m handling it really well and there are no signs that my pulmonary pressures are high.  All of this means that I don’t have to go back and see Dr. Dipchand for ONE WHOLE YEAR! She and the mom’s talked some more about some down the road, long term stuff, but for now, unless I start showing signs that something is going funny, then she said there is no point in coming in to take another picture to show us the same thing.   It may have been the best birthday/christmas gift ever!!

crystalandlily

Speaking of Christmas – I just wanted to tell you all that I hope you have a very very very merry time with all of your family or friends or friends who are family.  I know that I’m very very lucky to have incredible people in my life who make the holiday’s so happy and amazing and I just hope that you do too! Plus, I met this Santa guy and he seems to know what’s going on….so maybe talk to him too and he’ll sort you out…

lilyandsanta

For Keeps

I think the title says it all. As of 2:15pm, the judge signed the papers and officially said that the mom’s and I belong together for keeps. We all know that it’s really no different then it was yesterday, but it feels a little bit different. I have their last name!

I was incredibly lucky to be surrounded by the people who made this adoption all possible in the first place. Obviously the mom’s and I were there, but we were also joined by our adoption worker Mary, Gramma & Pa and Grandpa, of course my cousins Ollie and Thor along with so many other people who have been our biggest supporters over the last year and a half – Steve, Jason, Telly, Rita & Thano and Madison. And then, we the three people, Auntie CC, Theresa and Cathy (MeMa) who put their names on the line and told CAS how they thought the mom’s would be great parents and how they deserved the chance to love a kid like me. If they hadn’t done that and done it so well, then maybe none of this would have happened. For that, I know the mom’s are so so so grateful (and really, how could they not be – they got me out of the deal!).

It was a pretty amazing day all around, but something very surprising happened while we were in the court room that took us all by surprise and made the day even more incredible. We all filed in the room and the mom’s and I sat up at the front. It took a minute for the judge to start talking, and he started by welcoming us all there and telling us that adoption days are the happiest kind of days because they get to help create a family (he didn’t really need to tell us that). But then, he went on and told us that my adoption in particular was very happy for him because he was the judge who was there when my birth parents made the hard decision to let me be adopted because they wanted me to have the best home possible. He’s the man who really made it possible for the mom’s and I to be together. He told us that he remembered when my birth parents came in and he felt really lucky to get to meet me in person and get to see with his own eyes that I found a family who loves me so very much. He said he doesn’t always get a chance to see things come in a full circle and this was special to him. I know the mom’s agree with him and if I could speak I would tell him that he doesn’t know how right he is. Today, I feel pretty loved.

Where I Leave Off

One last mom post tonight before Lily returns and tells you all about her “re-birthday” party, her trip to neurology this week and our big plans for the rest of the summer. But until then….

Most of you know that Jess and I are very different – sometimes as different as two people can be. While undoubtedly frustrating in certain situations, it comes back to reward us in the most unexpected ways and I realize that it’s a gift. Today, was one of those days. Today, I opened my email and read this:

July 14

I remember everything.

Every single detail of that morning.

You woke me at 4:00am. I tried to put Lily back to bed. Twice. I held her for about 20 minutes and then lay her down each time. She would last about 15 minutes before she would wake up screaming. Finally, around 5:30, I went to the washroom and you came in. You spilled Omeprazole all down my leg, and we laughed about it. I had no clean clothes, so medication-soaked clothes were what I was stuck with. I took Lily downstairs and swaddled her to put her in the stroller. Immediately, she was asleep. I walked for about an hour and a half before she awoke. She woke up screaming. I walked down Plains Rd. in front of my old elementary school holding her while she screamed. I jokingly told her, “Lily, if you don’t stop crying, I’m going to strangle you”. I would come to regret using that phrase shortly. I finally put her down in the stroller and started walking quickly home. I decided then that I would let you sleep for another couple of hours before we took Lily to Sick Kids. Something was very wrong. As we walked down our street, she fell asleep again, and I noticed a neighbour’s unusual flower in front of their house. That crazy purple one that is round and has antennae all over it. I stopped the stroller and took a photo with my phone. Stopping woke her up. I picked her up with my left arm and brought the stroller in with my right. I left the stroller downstairs and brought her upstairs. She was absolutely alive at that point.

When we got upstairs I took her from my shoulder and went to put her down on the change table. Her face was white. She wasn’t moving. Her eyes were closed. I tried to shake her awake, and then tried yelling. Obviously, neither worked. I screamed for you. I said the baby wasn’t breathing and that you had to call 911. I yelled twice, and you were there, handing me your phone. I was holding Lily face-down in my hand and had slapped her back. I still didn’t know that she was dead. I told the 911 operator, “My baby is not breathing”, but I actually kind of thought that she still was. You had her on the change table when the operator asked me if we were doing CPR. I said, “We can’t do CPR, her sternum is still open”, when you corrected me and said, “Her sternum is not open, don’t tell him that.” And I told him, believing with everything that I am that I was right, “We can’t do CPR – her sternum was just closed because she just had an AVSD repair, and we are still not allowed to even pick her up by her arms.” Then I thought about what it may be and said, “The AVSD was complicated by chylothorax, and she has several plural effusions around her lungs and heart, so she’s going to need a chest tube. Can paramedics do chest tubes? There must just be too much fluid. They’re going to need to insert a chest tube”. As I was speaking, all I could imagine was you doing a chest compression and Lily’s sternum snapping and you pulling out her heart on your two fingers. I truly (although, wrongly) believed that doing CPR would do more harm than good. The dispatcher asked me to open all the doors and put the dog away, all the while repeating, “There is so much help coming. Just hang on. I have so many people coming to help you. They will be there so soon.” And they were. The firefighters arrived first, parking two trucks across O’Connor, and blocking traffic in both directions. I was outside when our nosy neighbour from across the street popped her head out of her house to ask if everything was okay. I just said, “No” and walked back inside. I couldn’t even deal with what was going on upstairs, so I did the next best thing which basically involved me hyper-ventilating at the bottom of the stairs. I quickly composed myself, and went outside, only to have you go running past me to the paramedics that had just arrived, and telling them that the firefighters needed them upstairs – now. One went up, and right after that one of the firefighters came flying outside holding Lily stretched out in front of him to the ambulance. You looked at me and said, “Go! I’ll meet you at Sick Kids”, so I did. I still didn’t think that she was dead. There was a cop blocking off the top of Northbrook at Cosburn, and we sped around the corner over to Coxwell, and down to the hospital. There were people outside to meet us – just like on ER. I got out first and when they pulled the stretcher out of the ambulance, I saw what I hadn’t been able to grasp earlier – she was dead. They pulled the stretcher out, and the paramedic was straddling her, doing those chest compressions that we had been so terrified to do. In that moment all I thought to myself was, “Oh my God. She’s dead. They don’t do chest compressions if you’re not dead. She can’t die first.” I was escorted into the hospital by a cop and as soon as we were in the room, a child life specialist was by my side. Apparently, when your baby dies, they don’t like to leave you alone, so I had this lady following me and interrupting my pacing while I was trying to phone and tell you that we weren’t at Sick Kids and to not go there. You weren’t answering your phone, which was stressing me out more, until finally the lady said to me, “Look, I am very concerned about you right now. You need to sit down – please”. So I did, and tried calling you again – and felt your phone vibrating against my leg. I had used your phone to call 911, and just put it in my pocket. The Dr. that brought Lily back to us is a marvelous woman that we had previously met, and once she had a pulse I see Dr. P. looking at her face and saying, “I know this girl. I know that I have seen her here”, before scanning the room and making eye-contact with me and saying, “I remember you – you’re the adoptive mom”, and leans back down to adjust something on Lily. One of the nurses hands me the pajamas I had put on her to take her for a walk earlier – my favourite ones with reindeer. You arrive and I tell you what the child life specialist (and now a social worker), have told me (which, is unfortunately not much). After Dr. P. has called Sick Kids and made sure that Lily is stable, she walks over and hugs me. After she leaves, I notice all the police in the room. And there are LOTS. I lean over to you and say, “Crystal, do you think that all these cops are here because they think that we did something to her”? The social worker hears me and says, “Oh, no, no, no. This is just what has to happen.” That calms me, because I can’t imagine the rage I would have if someone actually accused me of intentionally hurting Lily.

When it’s finally decided that we’re going to Sick Kids, I decide I should go home to get some stuff, let the poor dog out, and take my car to meet you and Lily at Sick Kids. When I asked the one policeman (that ended up staying with us all day) if I could leave to go home in a cab and get my car, he actually laughs at me and tells me that he will drive me home. On the way, he kept saying things like, “I can drive you guys to Sick Kids”, and, “If you need, we can give you money for a taxi home”. This is when I realized that he didn’t want me to drive, but probably also didn’t want to argue with me if I was going to disagree.

When we got home, two cop cars are outside. I go upstairs and head right to Lily’s room. On the floor is the electrode pad for the AED, and the rest of her room looks like a disaster area. Her mattress is upturned, furniture is moved, and it is just a big mess of dis-array. All I can think is, “What the hell did Crystal do? Why on earth would she have moved all this crap?” On my way back downstairs I decide that I probably shouldn’t drive, and have my policeman take me back to East General. When we get there the Sick Kids transfer team is getting ready to take Lily, and you and I get into the cop car. After getting in the car, our officer goes over dispatch and says, “Good news – our baby girl is okay. Stats are stable and we are transferring her and her parents to Sick Kids now”. The dispatcher comes back on and first I hear some cheering before she says, “We are so relieved to hear that. Can we offer you any assistance?” I have no idea what this means, but he says back, “If there’s anyone in the area that can help, we would really appreciate it.” She tells him that she’ll, “see what she can do”. We lead the ambulance (both of us had lights and sirens on), south on Coxwell to make a right on Danforth. We are cruising at a good pace, until we start to hit the traffic at Broadview, and I realize the light our way is red. We end up driving on the left side of the street and all I hoped for was that people in the opposite directions would stop; however, I realized then that there was a cop standing in the middle of the intersection keeping it closed. Before we were even through it, that cop is back in his car, speeding off in front of us. This happened at every single intersection along Bloor until we hit Bay, and then all along Bay they were holding intersections. None of them even knew Lily or either of us, but here they all were wanting to make sure that she would stay alive. By the time we got to Sick Kids, there were four other cop cars around us, taking turns driving ahead to intersections that weren’t already being held. We slowed twice for jay-walkers, but not once for a car being in our way. When we arrived at Sick Kids, again we had an entourage waiting for us to whisk us up to PICU. And thus began the longest 44 days of my life (and probably yours).

I remember everything.

I will be your memory.

Becoming a Girl

A mom post tonight….

I was having a conversation with Lily’s OT this week while we were having a joint visit with our physiotherapist – a special treat.  We were talking about how, when learning new skills, it has taken Lily a long time to figure things.  She would plateau for ages but then one day it would just click and suddenly she could do it. There has been no middle ground with her – she can’t do it until she can and then she’s amazing at it.  We had always known that kids with Down Syndrome do everything that a “typical” child does, they just do it a bit later, and Lily seemed to take that to her own level – we affectionately call it, “Lily time”.

But lately, the gains seem to be coming faster and faster.  Somewhere in between learning how to sit and becoming aware of her mouth, she’s been jumping ahead in leaps and bounds.  The baby who was so silent now chats up a storm, entertaining herself for hours.  Earlier this week we saw a girl on the edge of creeping and we watched in amazement today as she stood on her own (with a little help from the couch) for about 30 seconds (especially impressive since not even a week ago if you tried to make her bear weight on her legs she would scream murder).

Each and every time she moves forward in life, I’m reminded of just how proud I am of this little fighter and how far she has come.  Her personality has started to shimmer through – she’s quick to share a giggle when she’s delighted by something new and equally as fast to tell us when she’s done. Her eyes light up when she sees us in the morning, and at night has learned that if she just rolls around and chats to herself she doesn’t have to fall asleep right away.  She plays the xylophone like a concert pianist and finds herself terribly amusing.  Before our eyes, she’s moving away from being the strong fighter of a baby and into this tiny lady with so much determination and an fierce independent streak.  But at the end of the day, when she’s tired of working, she brings her head in on my chest and her hand plays with my necklace and reminds me that she’s still just a little girl.

Family, Fireworks and All Around Fun

Summer is really here and I’m finally beginning to understand what all the hype is about this season: it’s hot, the sun stays out way longer, and we’re always off doing fun things.  I don’t really like the part where my eyes keep watering and I come in from outside looking like I’ve been stung by some bees (an expression that I don’t really understand, but other people seem to get), but for the most part, I really like summer.

Over the past few weeks, Mommy and me (and Uncle Steve) have been hanging out at Grandpa’s house doing something called “renovations” – they don’t really have me fooled though, it’s just a grown-up word for big mess.  I have so much fun when I’m at Grandpa’s house – I get to go swimming in the river and we have bonfires at night.  The only part that’s not so great is that we’re away from Mama C because she’s at work and Mommy and I miss her a lot. But that also means that we get to come home to her and that always makes us both really happy.  This week we were up there with my favourite friend-family, the Randall’s (that’s MeMa’s family for those of you who understand my lingo).  They decided to take some time off and they all came up to play with me.  It had nothing to do with the river or the quiet or the canoe or the bonfires, right?

Summer also means that we get to celebrate something called Canada Day.  What I learned is that this is a weekend where we get 3 whole days with Mama C! On the Saturday we all got in the car and drove somewhere called Kitchener to see a whole lot of my family! When my great aunt Crazy Gail died, all of her brothers and sisters decided not to have a funeral but to have a big party instead (she was my kind of woman!).  Even though we were all still really sad that she couldn’t be there to be the centre of this big party, we still got to have a fun time just hanging out and being with each other.

Pa in his party hat....just kidding, he stole it from Thor!

For me, this meant finally getting to meet some (more) relatives that I hadn’t met yet.  I know I’ve said it before, but I have a LOT of family! I finally got to meet Aunt Helen and Glen, and Aunt Dot from “down east”, and then Uncle Earl and Aunt Sue from “out west”, and then more and more and more cousins: Gary, JP, Sarena, Darryl, Robin, Jamie, Jesse….it was just crazy! Someone also brought pictures from over the past few years and I got to see all of the Aunts and Uncles growing up, and then some of Mama C and Auntie CC growing up too.  I even got to see one from Grandma and Pa’s wedding day!

Snuggling with my new cousin J.P. (He has the same birthday as Mama C!)

At this party though, I also go to hang out with Auntie CC, Uncle Rico, Thor and Ollie! It was the first time that Ollie and I really got to hang out and talk – you know, just the two of us.  We had a pretty good talk and he tried to convince me that I could drink water from a cup like he does.  I’m still not entirely sure, but I’m thinking about it.

 He's totally just showing off....

Then I got to go swimming with Mama C and Uncle Rico and Thor, which was fun but very cold.  In the end Mama C and Uncle Rico played “kid swap” and I got to snuggle with Uncle Rico while Thor and Mama C went on a swimming adventure.  Then Ollie came in the pool too while I got out to hang out with Mommy, Auntie CC and Alexandra.  They were in the pool for so long that they almost missed dinner! I knew Mama C liked to swim, but where are her priorities?  In the end it worked out okay for me because I got to snuggle with Alex, which is one of my favourite things to do.  Every time she see’s me she gets more and more comfortable and this time she even tried to change my diaper…although she stopped fast when I peed on her!

On Sunday, it was actually Canada Day! Everywhere I looked people were dressed in red and white (except for me – the mom’s made me wear my rainbow dress and said something about Pride – they seemed sad that we weren’t going there).  During the day we went to Stan Wadlow Park and walked around and saw all the vendors and food, Blinky the Police Car and all of the rides that were set up.  We didn’t stay too long because it was very hot and I needed a nap, but we went back at night and that was the best part.  We met Uncle Steve and Telly and Rachel and after they all bought some food, we laid around on a big blanket.  Then, when it got dark, there were fireworks!! I love Canada Day! Uncle Steve couldn’t get over how quietly I just sat and watched the colours and the mom’s seemed pretty happy about the fact that I was obviously watching them as well (sometimes I think they like to be reassured that my eyes are working hard).