Renovation Mode

Guys, Mommy is a destruction queen! For the past few weeks she has been working day and night in the basement of our house to, “get it ready”.

20130530-220502.jpg
For a while I didn’t really know what that meant but I do now and it’s a pretty amazing thing. The mom’s have decided that it’s time for me to have some siblings! That’s right, you heard it here first – we are trying to make our family bigger! The mom’s (especially Mommy) have even working on all of the paperwork that they needed to update their home study and our file has officially moved into the hands of our adoption worker Mary. The mom’s keep telling me (and themselves) that it may still be a long adventure until my new siblings come home but the first big hurdle has been passed and so we’re starting to get ready!

20130530-220648.jpg
So, while we work on renovating our family, Mommy has also been hard at work renovating the basement so that our new house can fit new family members – apparently they will need bedrooms too. She’s been pulling drywall down and tearing down the ceiling tiles. She’s pulled up 2 layers of carpet and another 2 layers of floor tile and now it almost looks like we have a blank slate. The mom’s keep throwing around words like “wiring” and “plumbing” and Mama C keeps asking when she can have a fireplace (Mommy keeps laughing at her too). It’s all pretty crazy – I don’t even recognize it anymore. She may be my “stay at home” mommy but she is clearly the hardest worker mommy around!

20130530-220210.jpg

21 Magazine and Skeptics Be Damned!

A mom post today…

Late last year, during Down Syndrome Awareness week, I saw a picture that the CDSS (Canadian Down Syndrome Society) had posted to twitter of a bunch of their staff sporting these awesome CDSS temporary tattoo’s.

IMG_7755

I sent a reply quickly, not thinking anything would come of it, asking where I could find one. To my delight, I got a tweet back from their design and communication coordinator, Kaitlyn Pescon, saying that while they weren’t actually giving them away, she would make arrangements to send me a few. From there, a lovely twitter friendship was born and Kaitlyn started reading all about Lily’s Big Adventures.

Fast forward a few months and I received a very unexpected email from Kaitlyn: the CDSS was putting together their Spring edition of their quarterly magazine, 21, and she wanted to know if I would be interested in writing an article for them. I was overjoyed, not only because it meant that I got to write for real, but because (as I’m sure is obvious), I love being able to share with people how amazing our lives have been since Lily joined our family. They gave me no real direction on what to write, just a word maximum – which was the hardest part to stick to! It took me several attempts to get the right feel for what I wanted to say: that facing life with a child with special needs can sometimes feel incredibly daunting and outright scary, but that when you become a parent the rest just falls into place. As parents, regardless of our child’s abilities, we worry that we’re not doing enough for them. We bask in their accomplishments and are constantly amazed at how fast they learn and change and grow, but we don’t allow ourselves to feel the pride in our own abilities – to nourish them and to cherish them and to make them feel secure and safe enough to develop.

IMG_7717

And so, now that the CDSS Annual Conference is wrapped up for this year, I can put this article out there for the rest of you to see. It’s not a masterpiece, it’s not going to win any awards and you’re not going to wake up and find me on the talk-show circuit, but it’s just my own little piece of our world, out there for anyone to see…

Adventures in Adopting; Adventures with Lily

And very quickly, on a happy Lily note – we had our latest check-up with our Neurologist this week and she is incredibly happy with how Lily is progressing: it’s been just over a year without any signs of additional seizure activity! She, as always, reminded us that between being born early, having Down Syndrome and her brain injury that she is at a much higher risk for developing additional types of seizures, and so the plan is to keep her on her medications for 4 more years (as opposed to 2 years in a typical child), and then re-assess at that time. Seeing neurology, of all the clinics, always seems to be so incredibly rewarding. It was neurology, after her cardiac arrest, who told us that she was blind and that she wasn’t going to see again. It was her brain injury that kept her in that hospital bed, not moving her left side and keeping her personality hidden from us. But here we are, almost 2 years later and she’s thriving. She can see across the room and scoot her bum over to pull her toy off of the couch; she watches the cat stalk across the room and tries to grab her tail at every chance; she’s figuring out how to make her hands and her feet work together to keep standing in her playpen and she’s babbling up a storm. So, take that Neurology – don’t doubt her abilities!

 

IMG_7701

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

 

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.

Tomorrow

20120918-210220.jpg

As you can see, Cookie Monster (who used to belong to my Uncle Geoffrey when he was little and at Sick Kids) and I are getting ready for bed. Now normally I like to try and stay up to play in my crib before I give the mom’s some peace but tonight I will be going right to sleep – and not just because I’ve had a pretty horrible cold – but because tomorrow is a very exciting day in our house. Tomorrow is Adoption Day!! Finally, after waiting for so so long the mom’s and me will go to the court house tomorrow where we will meet with a judge who will sign the adoption record that says that I (legally) am the daughter! Not that I wasn’t the daughter before but now I can have a birth certificate that says it too (and the mom’s keep talking about something called a bank account which sounds kind of cool). Everyone knew that the mom’s and I belong together but after tomorrow it will just be a fact. That’s pretty amazing.

20120918-210343.jpg

Happy Lil-Aversary!

One whole year.  Guys, it’s been one whole year since I came to live with the mom’s.  It’s been a crazy, whirlwind of a year, but I think overall it’s been pretty amazing.  I feel so lucky to be living with my mom’s but really, I think that they might be the really lucky ones.  They keep talking today about how much I’ve grown, how big and strong I’ve become and how I’ve come so much further than most people thought I would last August.  The mom’s and I were talking about doing a big dinner/party to celebrate my anniversary but in the end we decided to have a really big party in August – to celebrate everything: my adoption, our family and mostly that I’m here, kicking butts and taking names.  Life is good.

It’s Been A While

Have you missed me? Mama C has been hogging the spotlight lately to write about her “feelings”, but luckily I’ve been really busy so I forgive her and I’m ready to take back the reins.  I hope she’s not too sad about it.

I really have been super busy.  It’s just amazing how time flies when you’re learning so many new things.  In March, the mom’s noticed that I had really stepped up my game in all of the things I was learning – I was reaching for toys that you put in front of me, I started enjoying being on my tummy and I started to rock at rolling over.  So now the mom’s are making me do something called physiotherapy.  I had been doing it with my OT Kristin, but because I’m also eating really well (like really really well people – I can gum a cheese puff like nobody’s business and don’t even get me started on how quickly I can swallow strained carrots), Kristin wants to be able to spend our OT time on eating, so now we do physiotherapy with another person.  Sometimes I really like it – I get to play with different toys and we sing come songs while I rock back and forth, but other times it’s a lot of work and I’m not shy about letting everyone know that I’m totally into it.  But we think that it’s working because I’ve been caught sitting on my own for longer and longer and the other day I even got to hang out on my hands and knees.  The mom’s say that this is getting me prepped to start crawling.  I’m not exactly sure what that is yet, but they say that I’m going to like it.  I think it has to do with moving around the room and if I’m right about that I’m really excited! I LOVE to move.  I don’t think I like anything better than starting in one spot and then finding myself on the opposite side of the room just by rolling and rolling.  I’ve gotten stuck with my legs under the couch or the television stand but mostly I get completely stuck under the coffee table – those legs make it hard for me to keep going! Even when people are holding me, unless I’m in serious cuddle mode, I’ll squirm around until they get the hint (although sometimes I’m just tricking them and squirming around so that they’ll turn me around and I can stick my fingers in their mouth).  Now that I’ve figured this out, there’s no stopping me.

Did you know that it’s almost been one whole year since I came to live with the mom’s? I can’t either.  Sometimes it feels like yesterday but then I look at pictures and see just how tiny I was then – my hair was so short! On Sunday (May 27th) is the 1 year anniversary of when I came home to stay.  It’s pretty exciting.  And even more so now because the mom’s are just about to meet with my adoption worker and sign the papers that say that they really really want me as their daughter.  Those papers will go to the CAS director and then onto the court.  Once the court has it they will set a date for me and the mom’s to come in and they’ll make my adoption legal! It’s still about 3 months away, but the papers being signed is the very last step and so really it’s just around the corner.  Don’t worry – I’ll tell you lots more about it when the time gets closer.

I know some of you have been wondering how I’m doing with all of my doctor’s visits, but the truth is, I’ve barely had any lately!  I saw the ophthalmologist last week, who was really happy with how my eyes are doing.  She just kept saying that I’ve surpassed any expectation they had of how well I would see – in fact, she thought that I would never see again, but I reminded her that my brain is a pretty amazing thing.  We’re still noticing that I have some nystagmus, and that my eyes turn in a bit when I’m trying to focus on something, but the ophthalmologist also said that a lot of new babies have those issues when they’re learning to see and a lot of the time they correct themselves.  She’s going to see me again in 6 months and she’ll decide then if she wants to do anything about it.  I also have to go and see my cardiologist next week, but I’m not really sure why.  I think the mom’s and I agree that I’m doing really well.  I have lots of energy, I don’t get tired when I’m eating and my colour has stayed fantastic.  I have to have a chest x-ray though and I really hate those.  That’s when they stick me in the little tube so that I stay perfectly still while they take the picture.  I’ll also have an EKG done to check how my heart is doing, but we’re secretly hoping that I’ll even get to come off the diuretic medication.  But going to cardiology means that I also get a chance to go and visit my friends on 4D and show them how big I’ve gotten since they saw me in December.  I think they’re going to be pretty impressed.