Merrily We Roll Along

The mom’s and I are doing really well these days at just rolling with the punches.  When we were first getting used to all my little quirks, it was easy for the mom’s to become overwhelmed when I hit a little bump in the road, but lately I’ve noticed that they seem to be better at watching how things unfold before they start to get really worried.

For instance, last week the mom’s noticed that I started having small seizures again.  They were the same kind as last time, little muscle contractions that I can’t seem to control.  There weren’t many, but since the mom’s have seizure eagle-eyes now they were able to spot them pretty quickly.   They got an appointment with our pediatrician who managed to get in touch with my neurologist and they worked out a plan to change the dose of my seizure medication because I’ve grown.  The doctor’s also let the mom’s know that if my body is fighting any kind of virus, even if I’m not showing any symptoms yet,  my seizures become harder to control, so we need to go back to being very very careful about being around other kids and adults who may be sick.  The mom’s took all of this with stride and have just spent the weekend keeping a pretty close eye on me.  I don’t think that I’ve had any more seizures, but we’re going to see the neurologist again, just in case.  Either way, I’m pretty proud of the mom’s – they’re really growing.

Otherwise, I’ve had a really great week! Last weekend, I got to meet 2 new cousins (well, Mama C says they’re not new, they’re just new to me!), Melissa and Brittany.  They came all the way from BC just to see me!! (Mama C says that they actually came to visit my Aunt Bev, but I obviously know better).  We had a nice afternoon at Gramma and Pa’s house, with the two of them and Aunt Bev.  Auntie CC, Uncle Rico, Thor and Baby Ollie were there too and we had so much fun together! I thought that maybe I would be a little jealous that there is this new baby to take over my spotlight, but it turns out that being the only girl does have some advantages.  Luckily Baby Ollie is super duper cute, so I don’t mind sharing the attention with him at all (and especially because Mama C like to cuddle with him a lot).

Then, the next day, Mommy and I decided to have a group date with my other two friends Thano and Jack and we went to the Zoo.  We let their mom’s, Rita and Irene, come along too but mostly because they can drive.  We saw the brand new baby polar bear, but my favourite were the penguins! Mama C was sad that she couldn’t go too, but said that if she goes on strike then we can go to the zoo all of the time.  I don’t know what “going on strike” means, but it’s sounding great to me…I just wish I could figure out why the mom’s don’t look so happy about it.

The most exciting part of my week though was going to Sick Kids to see my OT Lisa! I hadn’t been to visit her since I was in the hospital in August and she was shocked to see how much I had grown and how great I was doing.  To my great surprise we were there because everyone thinks that I’m ready to really start eating! This was the best day! I got to sit in a high chair and Lisa fed me all kinds of great things! Thickened formula, apple sauce, cookies…even cheesies! I got to start drinking from a cup (Mama C was helping me and she looked really nervous!).  Lisa told the mom’s that I can have anything that I want now! She said to try lots of different things so that I get used to different textures and tastes – like ice cream and yogurt and fruit and pasta.  I have to work pretty hard at it because I have no teeth, but so far I really like this eating business.

Lastly, on Friday (and then again on Sunday), I got to see my Jacquie! Now that she’s not my adoption worker we don’t get to see her as often so the mom’s made a special date so that we could all hang out.  We had a great afternoon (even if Mama C hogged me and Jacquie barely got to hold me at all) but when Jacquie left, she forgot her sunglasses.  So then on Sunday we drove to her house and dropped them off.  We even got to say hello to her family who were all very wonderful – mostly because they thought I was so cute, especially the dog Gracie.

Really, when you look at it, there are way more good things happening then not so great ones.  I’ll take that.

3 x 21: Our Favourite Number

A mom post tonight…

Just over a year ago, our adoption worker Jacquie, came to sit with us and go through our adoption preferences.  Generally this is a long list of questions to help the workers decide what kind of child would make the best fit for your family.  This list isn’t an easy one to get through and a lot of the questions really make you stop and think about what you’re willing to take on as a new parent: would you parent a child with mild motor delays? Would you parent a child who had been exposed to drugs or alcohol during pregnancy?  Would you parent a child who was conceived out of rape?  Jess and I had spent a lot of time prior to this meeting talking about the kind of child(ren) that we would be open to and to be honest, there wasn’t a lot that would scare us off.  We had talked a little about adopting a child with special needs, and I was particularly open to children with medical needs.  But it wasn’t until Jacquie asked the question, “would you parent a child with down syndrome,” that everything started to fall together.

Jess, in her previous line of work (previous to being the lucky mom who gets to hang with Lily all day), worked with adults with special needs and has always loved adults with down syndrome – they are her special favourites.  So, when Jacquie brought up the possibility of a child with down syndrome, Jess actually got excited.  It took me a little bit longer to come around to the idea.  My hands-on experience with special needs until that point had been teaching a few integrated swimming lessons and spending two weeks working at the camp our friend Cathy’s (better known in Lily’s world as MeMa) respite company hosts for their clients every summer.  I knew that I could handle it, but I didn’t know if it was a life that I wanted to fully embrace as my own.  But I agreed, during that meeting, that I would be open to hearing about kids with down syndrome if there were any they thought might be a match for us.

And then we got the call.  Less than a week after our meeting with Jacquie, she called us and told us that she was almost certain she had a wonderful match for us.  She started to tell us about a tiny baby girl, only 3 months old, who was born with down syndrome and a heart condition.  She knew that she had hooked us both: down syndrome AND a child with medical needs.  We met a few days later in Jacquie’s office and we started to read this child’s file.  Before we had even finished reading the entire thing, we were already smitten.  We knew that she was just this tiny little fighter who needed some grown-up’s on her side to love her and nurture that already so brave self.   Without even seeing her, we were already in love.

And that was how we ended up with our little girl with down syndrome and we couldn’t be happier with where we have ended up.  There are certainly days that are tough; days when it feels like we’re never going to see the developmental gains that we want to; days when we worry about what life will be like for her in school; days where we worry that life will be cruel to her because of this extra chromosome.  But those days are easily weighed out by the other days: they days when we watch her in amazement as she learns something new; days when we fall in love with her beautiful almond shaped eyes; days when we are shocked at how she just keeps rolling with the punches and still gets stronger and smarter, despite her setbacks. Lily wouldn’t be Lily without that 3×21 – it’s her cute chromosome, her dancing chromosome and her “I can make my tongue into a triangle” chromosome.  In this house, it’s our favourite chromosome.

The Next Step

A little birdie (better known as my adoption worker Mary) told me and Mommy today that it’s time to finalize my adoption!!

There’s a little bit of paperwork to finish up, and Mary has to write and send her report to the Ministry of Children & Youth Services and then she will apply for a court date. When that date is set, the mom’s and I will go and see a judge who will approve our adoption order and then everyone in the whole world (well, anyone who needs to see my birth certificate or passport) will know that I’m finally their daughter!! It’s still going to take a few months, but it’s exciting to know that something so big is just around the corner!

A Little Bit Naughty

The mom’s would be a little mad if they knew I was writing this post, but there’s just something I think you all need to really understand: the mom’s are a really bad influence on me.

You know, it started off pretty innocently.  When I spent so much time in the hospital last summer and Mama C was working really hard to get me to drink from a bottle, Mommy decided to widen my palate with my first taste of Swedish Berries.  I love to stick my tongue out and taste that pretty red sweetness.  Then when I got home and we went to the CNE, the mom’s let me have a taste of ice cream.

Other times, they let me go outside without a hat! I really like the feel of the wind on my face, so sometimes the mom’s let me sit outside for a little while and just enjoy the wind.  This week especially, while the weather has been so nice, the mom’s have been really great about letting me just enjoy the sunshine.  When Gramma and Pa came to visit this week, we waited outside and the mom’s didn’t make me wear a hat OR a sweater! (I thought Gramma was going to get really mad!).

But the time that the mom’s are the worst influence is actually at night.  Sometimes, when they are hooking up my g tube for my last meal of the night they have to move me around a little bit to get to my tube and I wake up a little bit.  Now I don’t know much, but I do now that I’m a growing girl and I need my sleep.  But apparently the mom’s don’t agree: they think that this is the time for them to pick me up and make me giggle.  It’s partly my own fault because I usually wake up in a good mood and I’m so smiley even late at night.  And lately, I’ve been moving all around in my sleep and just after being in bed for just an hour or two I’ve managed to wrap my blanket all around me and I’ve turned 180 degrees, and they seem to think this is extra funny. I’m telling you, they’re really bad people.

On a slightly different topic, I’m doing a great job with learning how to sit up.  I’m strong enough now to actually sit up in a high chair all by myself!  The mom’s tried when we were out at a resturant one night and I was so happy.  Then, this week when we went to Gramma and Pa’s for Mama C’s birthday, I sat in the high chair at their place for so long.  I’m also getting really great at talking up a storm.  I don’t like to talk so much when people are talking to me, but if you leave me alone then I just start chatting and chatting and then I get louder and louder until I’ve figured out how to yell.  I’m especially good at yelling in the morning…I’ve decided that if I’m awake, I think the mom’s should be too.

I’m the Big Girl Now

Do you know what’s really cool.  2 weeks ago there was this little person in my Auntie CC’s tummy.  He was real, but not real like Thor and I.  But then, on February 22nd, he decided that it was time to come out and play with us and the whole world got to meet my new cousin Oliverio Giorgio! Mama C was really lucky and got to be at the hospital with Auntie CC and Uncle Rico and she got to meet him right away.

The mom’s and I took a mini vacation to stay at Grandpa’s house so that we could get away from the city and just spend some time relaxing.  But as soon as we got back into the city, we went straight to Auntie CC and Uncle Rico’s house so that I could finally meet Baby Ollie too.  I have to admit that he’s pretty darn cute – I think he’s just about as cute as I am.  His big brother Thor loves him so much and it was so much fun to spend time with my two most favourite cousins. It’s just so crazy that I’m not the baby anymore – I’m the big cousin!