Which Mom Am I?

When your child has a special need, regardless of whether it’s a developmental disability or a medically based complexity, parents want to champion these issues: to bring their knowledge and experiences to people so that we can educate and bring awareness to what makes our child special.  My problem is that I don’t know where to put that focus.  Am I a “down syndrome mom”, or a “heart mom”, or an “adoption mom”?  Lately, I’ve been finding that I really want to do more, but if I’m going to choose one area to throw my voice behind, how do I decide which mom I’m going to be?

One of the problems we have in just picking one, is trying to fit in.  I’ve mentioned it briefly before, but we don’t always know where the best place is for us.  We’re lesbians who chose to adopt, as opposed to trying to concieve our own biological child – a little more rare in the adoption world, where the saying is that “you come to adotion through loss.” That wasn’t the case for us – we always knew that we were going to adopt and were excited about that fact.

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We chose to adopt a child with Down Syndrome, in fact, leapt at the chance to adopt a child with Down Syndrome.  We often feel that some people are confused by that choice; in fact, we had one adoption worker who asked us directly, “you know that you could have a normal child, right?”.  We (well, Jess more than myself) had experience with Down Syndrome that helped make it an easy choice.  We knew that having a child with DS, along with the challenges, would bring us incredible joy.  But, for other DS parents, this wasn’t their experience and it’s hard for us to relate to the grieving/acceptance that they had to work through, and I think it’s hard for them to relate to us as well.  We love being a part of the DS community but sometimes it’s easy to feel a little like outsiders.

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Medically, as far as we’re concerned, Lily’s heart is actually a miracle.  I remember, so clearly, sitting in the small room with Lily’s surgeon and him confirming the PVS diagnosis with us.  He told us that our life was going to go one of 2 ways: 1) This was just how her veins are and she would have no other issues.  He quickly followed by saying he really didn’t think that was our road; or 2) The veins would close up completely and the disease would be fatal.  He couldn’t give us a timeline or any more information but that was it.  I remember, sitting for hours on my phone, trying to find ANY information I could about PVS and just being bombarded with the same sentence in every report: “PVS is extremely rare, progressive and usually fatal.”  But we’re here, 2.5 years later and Lily is winning.  Her CHD is the scariest part of our life, but when compared with other heart warriors, we’re actually so lucky.  Her original diagnosis of an AVSD and Coarct are common in kids with DS and the surgeries to fix those issues have held out and her heart – if you look at just her heart – is amazing.  I sometimes feel a sense of survivors guilt when it comes to being a “heart” mom because she has been doing so well.

The other issue is that with Lily, all of this is so interconnected that it feels impossible to seperate them and just focus on one. In my head, I compare her journey to a party. She started at the Down Syndrome Party (guests included low muscle tone, delayed motor skills & speech but a serious love of dancing) and that came hand in hand with her original heart conditions; her heart brought her PVS to the party; the PVS may have asked the Cardiac Arrest to come along or it just decided to crash the party to create some havoc, but it brought it’s groupies: HAI (hypoxic-anoxic brain injury) and CVI (cortical visual impairment).  Suddenly, they are all in this one gigantic room and you just have to shrug your shoulders and start handing out snacks.

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For this week though, National Down Syndrome Awareness Week, this is where my heart going to be.  The Canadian Down Syndrome Society has an amazing campaign going this year that highlights 14 (7 pairs) of people who truly celebrate Down Syndrome.  I’ll try and highlight some of my favourites over the week, but if you’re going to start anywhere – start with Max and Libby (who personally sum up exactly what kind of relationship I want Lily and her siblings to have).  As well, make sure you check out the CN Tower on November 4th as it’s shines blue and yellow to celebrate this amazing week!

Lastly, because it’s been a while, I just thought I’d share a little love from Lily and Gus.

One Year Later

In our first year of life with Lily, we celebrated every anniversary we could think of: the day we got the phone call, the day we met her, the day she had her first overnight visit, the day she came home for good, the day of her heart surgery, the day of her cardiac arrest.  All of these culminated on September 19th, when we stood, surrounded by our amazing support system, and watched as the judge signed the papers that told the world that Lily was officially ours and today we celebrate the anniversary of that amazing day.

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If you’ve heard me speak about Lily’s adoption, then you’re aware that Jess knew that Lily was ours from the moment we opened her file and started to hear about this incredibly tiny girl.  I was more cautious, more fearful of things not working out, so while I hoped, I wouldn’t let myself believe that it was real….until the day we walked Lily’s foster mom’s house and all of my protective armour dropped away and I fell head over heels in love.

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For any prospective adoptive parents out there who are afraid that they won’t be able to love a child who didn’t biologically come from them, I beg you to not let that be a factor in your decision.  What I felt for Lily that day, from the moment I laid eyes on her, is what every mother feels the first time they see their child: a love that is beyond any description, any words.  It is a love that it absolutely and completely pure.  It is steadfast and strong and can not waver.  It encompasses everything that you are and takes over your mind and your soul.  I had been so afraid that I would never experience what my sister, my family, my friends had described to me but when she was handed to me and I drank her in, all of those fears melted away.

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So, when we celebrate the anniversary of Adoption Day, this is what I’m truly celebrating: that I have a daughter who, in a matter of seconds, changed my life, and my entire self so completely.

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Those Genetics…

A mom post tonight….

It’s become part of our routine to see Lily’s birth parents every few months. We really enjoy seeing them: watching the expression on their faces when they see how much she has grown and what she can do.  There is something immensely fulfilling about watching her birth dad hold her for an entire meal and just feeling the love he has for her fill the room and we are always very aware that we hit the jack-pot when it comes to birth parents.  We know that our situation is a little unique – most people think of open adoptions as exchanging photos and maybe a yearly visit – but despite my original thoughts, I’m so happy that this is the relationship we have, and will continue to have so that Lily can know her entire family – including her new little sister.

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Lily’s birth parents had a beautiful baby girl earlier this year and we were able to set up a visit so we could meet her.  It was certainly a bit surreal to sit across from the 4 of them and see the family that could have been – to see the resemblance between Lily and  this new baby, to see what characteristics they share even though they’re not together: the short catnaps, sucking on their bottom lips, their tiny ears.   We often make jokes about what Lily has “inherited” from us, but sometimes it’s incredibly cool to see genetics at work.

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We had a visit to the Eye Clinic at Sick Kids last week, which is not one of Lily’s favourite places.  Lily’s sight, prior to the Cardiac Arrest, was something that we were actually really pleased with.  She was lucky enough to not have any of the eye issues that kids with Down Syndrome are more prone to (cataracts, issues with focus, etc).  However, after her cardiac arrest, one of the biggest developments was a Cortical Visual Impairment and for a long time we were very fearful that she was completely blind.  We have been lucky to see a massive improvement with her eyesight but her right eye still shows a significant strabismus (turning in) and we’re still having some issues with her tear ducts watering.  So, after sitting through the dreaded eye drops and then cutting her nap short to have the doctors touch her eyes (ophthalmology appointments never go well in our house), it was decided that it’s time to book a surgery to fix both issues.  We don’t have a date booked as of yet, and we’re also getting in touch with our pediatrician about setting up a complex care consultation to hopefully deal with some other issues while she’s out for this surgery (we’re hoping to minimize the number of times she has to be put under anesthesia).  We don’t love the idea of surgery but when you weigh out the risk vs the benefits, we know that it’s time.

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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”.

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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!

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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!

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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

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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.

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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.

So Long, Farewell…

A mom post tonight….

I know that there’s been a higher ratio of Mom:Lily post’s lately and I promise she’ll be back in the writers seat soon, but just one more for now.

This was our first mother’s day – our first, real, mother’s day.  We had a few people celebrate with us last year, as we knew right around the holiday that Lily’s birth parents and Children’s Aid had picked us to be her family, but this was the first year that we got to wake up in the morning, look at her all wrapped up in her black and white blanket made by her cousin Connie, and celebrate being her mother.  It was an amazing feeling.  One that I’ve wanted for such a long time.

(Lily didn’t really make this cookie, but our amazing friend Cathy did and it’s just one of the reasons we love her in our lives)

But this mother’s day, like many others past, is tinged with sadness.  Obviously it was our first mother’s day without Jess’s mom and that was odd.  Just this time last year, we had decided that for future years we would bring both of our Mom’s together for the day so that we never had to choose between them.  Sadly, life chose for us.  Life this year, just in the past few days, also decided that it was time for my Aunt Gail to leave us too.  This has left a hole in me that I haven’t quite figured out how to fill.

I wish that I was a talented enough writer to really explain to you what it was like to grow up in our family.  Many of you know that my mother is one of 17 siblings, which in today’s society, is a huge huge number to wrap your head around.  But beyond the strength of my grandmother to raise such a huge family in less than ideal circumstances, what amazes me most about them is how close they are even with such a huge age difference between them.  We were never the family that only saw each other on holidays, we were constantly in and out of each other’s lives.  I always say that I was raised by The Aunts, the women who were either related by blood or marriage, who set the most amazing example of how to be great mom’s – there are characteristics of each of them that I hope to bring to my own version of motherhood.  I love them all, but at the same time, what’s been breaking my heart is that Gail was mine.  Now, with 16 Aunts and Uncles, it also means that I have a LOT of cousins, and so maybe calling her mine (especially when she had her own son) is a bit selfish but I always felt that it was true.  It was her lap that I would crawl into when we were all sitting around the table talking – I would play with her rings and be amazed that her fingernails were so long and were real.  I loved watching her style her hair or put on her make-up.  I loved going to visit her at work and was so proud that she was my aunt.  When my friend Adrienne and I went out to PEI to visit when we were in university, I was thrilled when she pointed out how alike Gail and I were – that we tapped our fingers and the table the same way, that we both had ridiculous laughs that usually ended in snorting or that we both tried to make people feel at ease by making jokes – usually lighthearted, somewhat inappropriate and often self-deprecating.

Like everything else in life, it’s with a loss that we realize how much we truly loved.  Knowing that she’s not here leaves me feeling empty and not sure how to share that with anyone else.  I know that so many other people are missing her as much I do, or even more, but for now it just feels like my own grief, one that’s not ready to be shared.

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.